tag:blogger.com,1999:blog-66719333376800781192024-03-19T00:12:37.026-04:00Marcia's journey with Early Onset Alzheimer'sMy wife, Marcia, was diagnosed with Early Onset Alzheimer's at age 50. Her symptoms started in her late 40's. This blog walks through the quest for answers to her speech issues, the diagnosis process and the progression.Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.comBlogger68125tag:blogger.com,1999:blog-6671933337680078119.post-52943567576776858582018-04-02T16:31:00.002-04:002018-04-02T16:31:28.932-04:00Epilogue – Life after Alzheimer’s<br />
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I indicated that I would write one more blog entry
in my last post, which I published almost 3 years ago.<span style="mso-spacerun: yes;"> </span>The purpose of this blog from the beginning
was:<span style="mso-spacerun: yes;"> </span>1) to have a place for family and
friends to go to keep abreast of our Alzheimer’s journey, and 2) to provide a
perspective to others who want information on Early Onset Alzheimer’s from a
caregiver’s point of view.<span style="mso-spacerun: yes;"> </span>As for family
and friends, since Marcia passed away there’s no reason to go to this blog
anymore.<span style="mso-spacerun: yes;"> </span>I suspect most of the 45,000
hits came from family and friends.<span style="mso-spacerun: yes;"> </span>But I
imagine nearly all of those who have visited and read this blog since Marcia
passed away fall into the second camp.<span style="mso-spacerun: yes;"> </span>The
sad reality is that every day more people are diagnosed with Early Onset
Alzheimer’s and it is my hope that this blog has and will provide some assistance
to others who enter this unwelcome club.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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A third purpose for writing emerged over time. I
found great value, if not enough time, in putting thoughts and experiences in
writing.<span style="mso-spacerun: yes;"> </span>Blogging was a cathartic
release of sadness, shock, frustration and gratitude.<span style="mso-spacerun: yes;"> </span>Writing was a way to document the nastiness
and cruelty of Alzheimer’s disease, my admiration for Marcia and the truly
inspiring way she dealt with a dignity robbing, life taking disease, a
recognition of the strength of our kids and the unspeakable selflessness of my
family, friends and acquaintances near and far.<o:p></o:p></div>
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I’m writing now to put some closure to our family’s
journey and to communicate to anyone who might read this post that there (is,
can and should be) life after Alzheimer’s.<span style="mso-spacerun: yes;">
</span>While Marcia was sick, my caregiving role was to take care of her and
protect her dignity as best I could.<span style="mso-spacerun: yes;"> </span>It
was exhausting trying to balance caregiving with working and parenting, yet we
managed to get through it with few regrets.<span style="mso-spacerun: yes;">
</span>I find my role today to make sure Marcia’s life and memory lives on,
especially with our kids, while trying as best I can to shepherd our lives into
a future of meaningful purpose, optimism, and happiness.<span style="mso-spacerun: yes;"> </span>For me and my kids, our lives have not stagnated
since losing Marcia.<span style="mso-spacerun: yes;"> </span>I dislike the term “moving
on”, but life around us certainly has and we’ve had no choice but to adjust to
a new life.<span style="mso-spacerun: yes;"> </span>We have accepted the reality
that Alzheimer’s took Marcia from us and time doesn’t stand still.<span style="mso-spacerun: yes;"> </span>The fact is, we are no longer caregiving and coping
with all the stresses associated with that.<span style="mso-spacerun: yes;">
</span>Our kids have their whole lives in front of them and they are taking
steps to prepare for adulthood, and I hope to have 30 or so years ahead of me
too.<span style="mso-spacerun: yes;"> </span>And wallowing in sorrow without doing
meaningful things with our lives would not only be a waste but would be putting
the brakes on what Marcia was helping us do while she was here.<o:p></o:p></div>
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We are approaching the third anniversary of
Marcia’s death, perhaps a long overdue time to write about how our children are
doing and how I am doing.<span style="mso-spacerun: yes;"> </span>We have lived
through many “anniversaries” over the last three years:<span style="mso-spacerun: yes;"> </span>her last day in our house (3/11), the day we
placed her in a long-term care facility (3/16), the day we decided to put her
in hospice care (3/29) and the day she passed away (4/7).<span style="mso-spacerun: yes;"> </span>While these are dates I don’t want to forget,
with the passage of time the good memories seem to take center stage and the
more difficult times seem to fade.<span style="mso-spacerun: yes;"> </span><s><o:p></o:p></s></div>
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So how are we doing now?<span style="mso-spacerun: yes;"> </span>In the nearly three years since Marcia passed
away, I’ve lost my job and retired for a year, unretired to work with a friend and former
boss as a consultant, (re)met a wonderful woman and got married!<span style="mso-spacerun: yes;"> </span>I’ve seen my former life (work, marriage and
social life) completely turn over.<span style="mso-spacerun: yes;"> </span>The
only constant is my kids, and they aren’t really kids any more, having the
audacity to grow up.<o:p></o:p></div>
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I worked for a company where the people were
amazingly supportive and compassionate.<span style="mso-spacerun: yes;">
</span>While I was “let go” during a major reorganization (before Marcia passed
away), I was kept around to help out with an integration and reach “retirement
age”.<span style="mso-spacerun: yes;"> </span>My gratitude for my former
employer and those that helped keep me around is off the charts.<span style="mso-spacerun: yes;"> </span>Work, and the people I worked with were one
part of my life that helped me survive the devastation of Alzheimer’s Disease.<o:p></o:p></div>
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The social life Marcia and I shared has mostly
dried up and disappeared and a new, different one is emerging.<span style="mso-spacerun: yes;"> </span>This is not meant to be an indictment on
anyone but me.<span style="mso-spacerun: yes;"> </span>I found that my social
life was really Marcia’s.<span style="mso-spacerun: yes;"> </span>Our friends
were more my “friends-in-laws”.<span style="mso-spacerun: yes;">
</span>Wonderful people that I loved and still love dearly.<span style="mso-spacerun: yes;"> </span>It just seems life moved on and I didn’t do enough
to keep that old life alive.<span style="mso-spacerun: yes;"> </span>This was
not a conscious decision on my part as I’m not entirely sure if I had to move
on, or if my new life just nudged me in that direction.<span style="mso-spacerun: yes;"> </span>I still see this community often and enjoy
every moment.<span style="mso-spacerun: yes;"> </span>It’s more that life has taken
me and those we used to socialize with in different directions based on our current
events and activities.<o:p></o:p></div>
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As Alzheimer’s progressed, I found myself in the role
of a single parent even before Marcia passed away and my inadequacies (real and
perceived) were more noticeable.<span style="mso-spacerun: yes;"> </span>Marcia
was just better at some things than I was/am.<span style="mso-spacerun: yes;">
</span>Whether I’ve been hard on myself as a parent or not, I’ve felt my kids
have been short changed by not having two parents to draw from.<span style="mso-spacerun: yes;"> </span>Nothing in my life has made me feel quite so
inadequate given the responsibility of being a parent.<span style="mso-spacerun: yes;"> </span>When Marcia was first diagnosed, her biggest
concern around her diagnosis was not her fate, but not being there for our kids.<span style="mso-spacerun: yes;"> </span>And they’ve lived the disadvantaged life of a
one parent household during such important times in their development and
formative years.<span style="mso-spacerun: yes;"> </span>My parenting and my
kids’ growing up has been a source of many sleepless nights for me!<o:p></o:p></div>
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Finally, there’s Karen, my new wife and longtime
friend!<span style="mso-spacerun: yes;"> </span>Karen and I have known each
other since 1979 when we were college freshman.<span style="mso-spacerun: yes;">
</span>We met as a result of her friendship with a girl I went to high school
with.<span style="mso-spacerun: yes;"> </span>Karen was always a special friend,
though we never dated, and we maintained contact throughout the years, mostly
via Christmas cards and birthday acknowledgements.<span style="mso-spacerun: yes;"> </span>I started dating Karen several months after
Marcia passed away and we married last August.<span style="mso-spacerun: yes;">
</span>Karen lived outside of Philadelphia, where my daughter goes to college
and we met for lunch one day after I dropped her off at school.<span style="mso-spacerun: yes;"> </span>Was this a date?<span style="mso-spacerun: yes;"> </span>It was “just” lunch, but it almost turned
into dinner too.<span style="mso-spacerun: yes;"> </span>Then we met in New Hope,
PA for dinner a week or so later.<span style="mso-spacerun: yes;"> </span>And we
found ourselves meeting weekly in New Hope, here in New Jersey or close to
Karen’s home in PA.<span style="mso-spacerun: yes;"> </span>Was I ready to
date?<span style="mso-spacerun: yes;"> </span>I wasn’t even close to jumping
into the dating pool.<span style="mso-spacerun: yes;"> </span>My priorities were
very much tied to my kids in the aftermath of Marcia’s death.<span style="mso-spacerun: yes;"> </span>But sometimes things happen that aren’t
planned.<span style="mso-spacerun: yes;"> </span>I hadn’t had much adult company
in the months leading up to this day and I not only enjoyed having something to
do but enjoyed having someone to talk to.<span style="mso-spacerun: yes;">
</span>The ease of talking to Karen that day was special and just like it was
in college. <span style="color: red;"><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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Karen had been following this blog and was well
aware of Marcia’s illness.<span style="mso-spacerun: yes;"> </span>She was
sensitive to what I’d been through and what I needed to go through, and what I
needed to do for my kids.<span style="mso-spacerun: yes;"> </span>While I don’t
know this for sure, I truly believe Karen saved me.<span style="mso-spacerun: yes;"> </span>She was always easy for me (an introvert) to
talk to and our relationship was just so natural.<span style="mso-spacerun: yes;"> </span>But she came back into my life when I found
myself outside looking in on the social circles of the town I had lived in for
21 years.<span style="mso-spacerun: yes;"> </span>Spending time with Karen was
something I looked forward to and kept me from the life of isolation I almost
seemed to seek.<span style="mso-spacerun: yes;"> </span>We spent most of our time
together relatively close to my home, which made it easier for me to be around
when my son needed me to be home, one of many sacrifices Karen made to make getting
together possible. <o:p></o:p></div>
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Karen and my kids had an instant connection and
she’s been a phenomenal presence in my kids’ lives.<span style="mso-spacerun: yes;"> </span>She’s made great sacrifices to be with
ME.<span style="mso-spacerun: yes;"> </span>She’s moved from Pennsylania to NJ, uprooting
her life (and those of her two dogs), has a very long commute for work and is
living in the same house Marcia and I shared for 21 years.<span style="mso-spacerun: yes;"> </span>She’s been very understanding of the need to
keep life as normal as possible for my son and her sacrifices don’t go
unnoticed.<span style="mso-spacerun: yes;"> </span>Karen has made an
unreasonable need of mine, acceptable.<span style="mso-spacerun: yes;">
</span>But more than anything else, she has shown me love and happiness I wasn’t
sure I’d find again.<span style="mso-spacerun: yes;"> </span>I’m grateful to her
and for her and she has given me hope and is the one I’m excited to share my
future with.<span style="mso-spacerun: yes;"> </span>We look forward to moving
in a year or so to a place where we can build “our life” together.<o:p></o:p></div>
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My kids are doing very well.<span style="mso-spacerun: yes;"> </span>My daughter has had two impressive co-op job experiences
and is just starting her third while getting close to her undergraduate degree
in Physics with a minor in math.<span style="mso-spacerun: yes;"> </span>She’s
certified to teach some of the same fitness classes Marcia used to teach and impressed
me every day with her maturity and accomplishments.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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My son is one semester away from high school
graduation and has a pretty nice selection of colleges to choose from for the
fall, is playing lacrosse, has worked part time and has a really good group of
friends that have been there for him through Marcia’s illness and her passing.<span style="mso-spacerun: yes;"> </span>Both have weathered a storm no kid should
have to experience without any big detours.<span style="mso-spacerun: yes;">
</span>I’m not sure they have grieved as they might eventually grieve.<span style="mso-spacerun: yes;"> </span>Are the difficulties they have faced or are
facing just normal teenage/early 20’s issues, or are they magnified by losing
their mom, watching her brain become infantile and her body fail?<span style="mso-spacerun: yes;"> </span>It’s hard to say, and it’s probably why I
worry as much as I do.<span style="mso-spacerun: yes;"> </span>They have struggled
at various times, yet their strength is evident and they are a constant source
of inspiration and pride for me.<span style="mso-spacerun: yes;"> </span>They
are becoming adults, they laugh and enjoy life and are planning for their
futures.<span style="mso-spacerun: yes;"> </span>Both are “normal” kids in
different stages of life without Marcia.<span style="mso-spacerun: yes;">
</span>It’s still very hard for my son to talk about his mom, and I suspect and
hope this will change over time.<span style="mso-spacerun: yes;"> </span>My
daughter does a lot to honor Marcia and to support our fight to end Alzheimer’s
in their lifetime.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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<span style="mso-spacerun: yes;"><br /></span></div>
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We have found a new normal, and it’s better and
worse than the old one.<span style="mso-spacerun: yes;"> </span>And for the
length of this post, one might assume I’ve got things all figured out.<span style="mso-spacerun: yes;"> </span>Not even close!<span style="mso-spacerun: yes;"> </span>I believe figuring things out is a lifelong
pursuit and new lessons and thoughts come about all the time.<span style="mso-spacerun: yes;"> </span>But I have resolved to make the most of my
life, while treasuring the wonderful memories of my past that have shaped me
into the person I am.<span style="mso-spacerun: yes;"> </span>I have committed
time and resources to fight Alzheimer’s Disease and find a cure in my lifetime
to honor Marcia and to be a part of a solution that will hopefully impact
millions of people.<span style="mso-spacerun: yes;"> </span>While I don’t know
if this is my “purpose”, I do know it’s a passion that won’t fade until a cure
is found.<span style="mso-spacerun: yes;"> </span>I know there is so much of
life to experience, and I hope to do so seeing the positives of life, while
minimizing the ugly, unpleasant world around us.<span style="mso-spacerun: yes;"> </span>I accept that I am still a little lost in who
I am and what I should be, but I’m happy and grateful I have two amazing kids, a
supportive family and friends and a wonderful wife (and her family) to explore
an optimistic future.<o:p></o:p></div>
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I don’t intend to write anything more here.<span style="mso-spacerun: yes;"> </span>For those that come to a site like this to
learn about Early Onset Alzheimer’s, I hope this is helpful.<span style="mso-spacerun: yes;"> </span>If you come here to learn how to take the
pain away from a life with Alzheimer’s, I wish I had some magic words that
could solve the problems you are facing, but the only magic words, “see your
doctor for your path to a cure” don’t yet exist.<span style="mso-spacerun: yes;"> </span>However, I believe that the Alzheimer’s
journey doesn’t mean the end for everyone affected.<span style="mso-spacerun: yes;"> </span>Someday there will be a cure, or at the very
least a treatment.<span style="mso-spacerun: yes;"> </span>But one can find
happiness again.<span style="mso-spacerun: yes;"> </span>I know I have!<o:p></o:p></div>
<br />Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com4tag:blogger.com,1999:blog-6671933337680078119.post-33712038692878305312015-07-26T21:02:00.000-04:002015-07-26T21:02:43.522-04:00The Official diagnosis – Alzheimer’s Confirmation
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Over the last four years, my commitment, and my
families commitment to find a cure for Alzheimer’s disease has most notably
been in the area of raising money for research.<span style="mso-spacerun: yes;">
</span>And through the help of many, and generosity of many more, over $160,000
has been raised in Marcia’s honor or memory.<span style="mso-spacerun: yes;">
</span>Another commitment to find a cure is that we agreed to donate Marcia’s
brain to the Taub Institute (Columbia University) after she passed away.<span style="mso-spacerun: yes;"> </span>Dementia cases cannot be confirmed with
certainty while living and our family wanted to know exactly what kind of
dementia caused her suffering and death.<span style="mso-spacerun: yes;">
</span>But we also wanted her brain to be used for research to help learn as
much about diseases of the brain as possible.<span style="mso-spacerun: yes;">
</span>Per Marcia’s wishes, we had hoped to donate as many organs as we could
to help others in need.<span style="mso-spacerun: yes;"> </span>Unfortunately,
Alzheimer’s disease makes all other organs, other than the brain, ineligible
for donation.<span style="mso-spacerun: yes;"> </span>But her brain will
hopefully help unlock some of the mysteries of Alzheimer’s for future
generations.</div>
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A few weeks ago, just a little over 3 months after
Marcia died, her neurologist’s office contacted me to let me know that the
results of her autopsy were ready to share with us.<span style="mso-spacerun: yes;"> </span>Throughout Marcia’s illness, her neurologist
had never given an absolute diagnosis.<span style="mso-spacerun: yes;">
</span>Marcia had seen him for four years and he was consistent in saying that
his best guess was that Alzheimer’s was likely what she had, in the absence of
a better guess.<span style="mso-spacerun: yes;"> </span>Over the last year we
started to see signs that maybe she had Lewy Body Dementia, or maybe she had
both.<span style="mso-spacerun: yes;"> </span>From a treatment standpoint, there
really wasn’t much difference and there was nothing that could be done to
prevent further progression in either case.<span style="mso-spacerun: yes;">
</span>My hope, and what I had prayed for was a Lewy Body confirmation for the
sole reason that LBD has no known genetic connection and this would clearly be
better, more mind easing for me and our kids.<span style="mso-spacerun: yes;">
</span>However, this was not what they found after examining Marcia’s
brain.<span style="mso-spacerun: yes;"> </span>I was told that Marcia had a
pure, classic case of severe Alzheimer’s disease.</div>
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Alzheimer’s disease is caused by the formation of
plaques and tangles.<span style="mso-spacerun: yes;"> </span>Plaques are
deposits of a protein fragment called beta-amyloid that buildup in the spaces
between nerve cells.<span style="mso-spacerun: yes;"> </span>Tangles are twisted
fibers of another protein called tau that build up inside cells.<span style="mso-spacerun: yes;"> </span>Marcia’s buildup of plaques and tangles were
“dramatic and extensive”, found throughout the brain, widespread and
severe.<span style="mso-spacerun: yes;"> </span>Whereas a plaque count of 15 –
20 is considered high, Marcia’s count exceeded 30. <span style="mso-spacerun: yes;"> </span>Questions that will never be fully answered
include why did Marcia have such profound speech and communication loss while
her memory seemed less affected as compared to more typical Alzheimer’s
symptoms?<span style="mso-spacerun: yes;"> </span>They did not find more or less
tangles in parts of the brain that control communication/speech vs other parts
of the brain.<span style="mso-spacerun: yes;"> </span>I’m certain this is why
this disease is so hard to accurately diagnose when one is still living.<span style="mso-spacerun: yes;"> </span>It just presents itself differently from case
to case in terms of symptoms, severity and the length of time one lives after
symptoms start to show.</div>
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<o:p> </o:p></div>
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So now we know definitively what caused Marcia’s
death.<span style="mso-spacerun: yes;"> </span>The disappointment that we didn’t
get the preferred diagnosis leaves the question of how much risk do my kids
have that they too will get this horrid disease?<span style="mso-spacerun: yes;"> </span>There are “risk” genes and “deterministic”
genes. In the movie “Still Alice”, which did a wonderful job of increasing
awareness for Alzheimer’s and early onset Alzheimer’s, the main character,
played by Julianne Moore had a deterministic gene.<span style="mso-spacerun: yes;"> </span>If one has this gene, developing the disorder
is certain.<span style="mso-spacerun: yes;"> </span>Would you want to know if
you had the gene?<span style="mso-spacerun: yes;"> </span>“Alice” had three kids
who did not share the same perspective on testing.<span style="mso-spacerun: yes;"> </span>Two wanted to know and were tested, one
result came back positive for the gene, the other negative.<span style="mso-spacerun: yes;"> </span>The third didn’t want to know.<span style="mso-spacerun: yes;"> </span>Just writing that sentence gave me
chills.<span style="mso-spacerun: yes;"> </span>One case of despair, where one
can see their fate and the loss of dignity, independence and knowing what is
waiting for their family.<span style="mso-spacerun: yes;"> </span>One case with
incredible joy, and at the very least incredible relief.<span style="mso-spacerun: yes;"> </span>But maybe guilt too?<span style="mso-spacerun: yes;"> </span>And one not wanting to have their fate
determined so young.<span style="mso-spacerun: yes;"> </span>I would want to
know, but only if the result was negative.<span style="mso-spacerun: yes;">
</span>This deterministic gene is very rare, with only a few hundred families
known to have this gene worldwide.<span style="mso-spacerun: yes;"> </span>In
these families, multiple family members<a href="https://www.blogger.com/null" name="_GoBack"></a> in every
generation are typically affected.<span style="mso-spacerun: yes;"> </span>Marcia’s
family history of Alzheimer’s would not suggest a high likelihood this deterministic
gene is present.<span style="mso-spacerun: yes;"> </span></div>
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<o:p> </o:p></div>
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“Risk” genes increase the likelihood of developing
the disease, but do not guarantee it will happen.<span style="mso-spacerun: yes;"> </span>There are as many as 33 genes that contribute
to developing Alzheimer’s.<span style="mso-spacerun: yes;"> </span>APOE-e4 is
the first risk gene identified and the gene with the strongest impact on risk,
and MAY make symptoms appear at a younger age than usual.<span style="mso-spacerun: yes;"> </span>As many as 20 to 25 percent of Alzheimer’s
cases are related to the APOE-e4 gene.<span style="mso-spacerun: yes;">
</span>Everyone inherits a copy of some form of the APOE from each parent.<span style="mso-spacerun: yes;"> </span>Those who inherit one copy of APOE-e4 have an
increased risk of developing Alzheimer’s.<span style="mso-spacerun: yes;">
</span>Those that inherit one from each parent have an even higher risk, but
not a certainly.<span style="mso-spacerun: yes;"> </span>Marcia may have had
APOE-e4, but she might not have.<span style="mso-spacerun: yes;"> </span>It’s
doubtful our kids would inherit two of these genes since my family history has
no known Alzheimer’s cases.<span style="mso-spacerun: yes;"> </span>So what
would be gained by testing further?<span style="mso-spacerun: yes;"> </span>A
finding that one gene was present and nothing more than a slightly higher risk?</div>
<br />
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<o:p> </o:p></div>
<br />
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It’s more likely that Marcia sort of lost a
genetic lottery, one where 33 different genes, all inherited from her parents
just lined up tragically.<span style="mso-spacerun: yes;"> </span>Imagine a slot
machine with 33 possibilities and they all hit 7?<span style="mso-spacerun: yes;"> </span>It’s not quite that simple, but it does
illustrate that some combinations of those 33 genes resulted in severe
Alzheimer’s disease.<span style="mso-spacerun: yes;"> </span>This put my mind
more at ease that while my kids might have a slightly increased risk, it’s not
a certainty they will get AD either.<span style="mso-spacerun: yes;">
</span>Finally, the last factor in deciding to test or not:<span style="mso-spacerun: yes;"> </span>What would we do if the test came back
positive in Marcia?<span style="mso-spacerun: yes;"> </span>It wouldn’t mean my
kids would inherit the gene, but their chances would be 50% that they would (or
would not).<span style="mso-spacerun: yes;"> </span>And what would you do with
that knowledge?<span style="mso-spacerun: yes;"> </span>There is still no cure,
no way to stop or slow the progression.</div>
<br />
<div style="tab-stops: 175.5pt;">
The final chapter on Marcia’s illness has not been
written.<span style="mso-spacerun: yes;"> </span>I’ve said many times that she
showed remarkable courage and grace throughout her illness, which is even more
remarkable given the severity of what she had going on in her brain.<span style="mso-spacerun: yes;"> </span>She beat cancer, lived through arthritis and
spinal stenosis and she watched herself deteriorate rapidly.<span style="mso-spacerun: yes;"> </span>And she never lost her smile and passion for
her family and friends.<span style="mso-spacerun: yes;"> </span>She has inspired
me to live the Good Life, appreciating all life has to offer.<span style="mso-spacerun: yes;"> </span>I laugh more, I notice more, I appreciate
more, I notice where others are suffering more and I love more than I ever
would have had it not been for Marcia.<span style="mso-spacerun: yes;"> </span></div>
<br />
<div style="tab-stops: 175.5pt;">
I plan to write one more blog entry several months
from now.<span style="mso-spacerun: yes;"> </span>And this one will communicate
how I am doing and how my kids are doing. How have we adjusted?<span style="mso-spacerun: yes;"> </span>What turns our lives have taken having gone
through this experience?<span style="mso-spacerun: yes;"> </span>I have often
thought God put me in Marcia’s life for a reason.<span style="mso-spacerun: yes;"> </span>And she was put in my life for a reason.<span style="mso-spacerun: yes;"> </span>This chapter is still work in progress, but
because of Marcia’s inspiration, I choose to be happy and apply the many
lessons I’ve learned and the example she set.</div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com3tag:blogger.com,1999:blog-6671933337680078119.post-64629647647377757932015-05-16T20:24:00.001-04:002015-05-16T20:24:11.262-04:00Remembering Marcia
<br />
<div style="tab-stops: 175.5pt;">
It’s been 5 weeks since Marcia passed away.<span style="mso-spacerun: yes;"> </span>Many sad and emotional occasions to remember
Marcia have come and gone, while some have been happy and festive.<span style="mso-spacerun: yes;"> </span>Marcia’s visitation and memorial service took
place the weekend starting Friday, April 24th.<span style="mso-spacerun: yes;">
</span>The entire weekend was a tremendous celebration of Marcia’s life that
I’m certain would have made her proud and happy!<span style="mso-spacerun: yes;"> </span>We used a combination of traditional and non-traditional
funeral/memorial service events.<span style="mso-spacerun: yes;"> </span>Friday’s
visitation was not held at a funeral home, but at the Adult Day Center of
Somerset County, where Marcia had been going for 18 months.<span style="mso-spacerun: yes;"> </span>They graciously allowed us to use their
facility which allowed for a more festive feel than a traditional more somber funeral
home visitation.<span style="mso-spacerun: yes;"> </span>And the turnout was
fantastic, with somewhere between 350 and 400 people attending from various
parts of the lives of Marcia, our kids and me.<span style="mso-spacerun: yes;">
</span>While we did have the traditional line to meet/greet family, there was
space for sitting, standing/talking and an outdoor patio for people to
socialize.<span style="mso-spacerun: yes;"> </span>Pictures and videos of
Marcia’s life were placed throughout the room and snacks were served.<span style="mso-spacerun: yes;"> </span>While everything about the night went well, I
particularly enjoyed seeing my son have fun with about a dozen of his friends
and seeing my daughter take pictures and hang out with friends from high school
and a few college friends.<span style="mso-spacerun: yes;"> </span>Marcia’s
family, and my family greeted visitors for 3 ½ hours, and I think Marcia’s
mother really enjoyed meeting so many people who have meant so much to us.<span style="mso-spacerun: yes;"> </span>The evening was very upbeat and very social –
Marcia would have loved it!</div>
<br />
<div style="tab-stops: 175.5pt;">
<o:p> </o:p></div>
<br />
<div style="tab-stops: 175.5pt;">
Saturday afternoon, we had a traditional Presbyterian
memorial service.<span style="mso-spacerun: yes;"> </span>While my daughter
and I both spoke at the service, Riley was so impressive!<span style="mso-spacerun: yes;"> </span>As a 19 year old college freshman, she showed
such poise, confidence and maturity beyond her years.<span style="mso-spacerun: yes;"> </span>She also did a wonderful job of honoring
Marcia with humor, insights from a daughter’s perspective, and tugging the
perfect emotional chords.<span style="mso-spacerun: yes;"> </span>After the
service, we had a family/close friend’s dinner at Neshanic Valley Golf
course.<span style="mso-spacerun: yes;"> </span>This continued the celebration
of life theme, an event Marcia would have enjoyed so much.<span style="mso-spacerun: yes;"> </span>Just before sunset, we saw about a half dozen
hot air balloons not far from the golf course.<span style="mso-spacerun: yes;">
</span>Marcia always loved hot air balloons and we enjoyed the annual balloon
festival where more than a hundred balloons took to the skies less than a mile
from our house.<span style="mso-spacerun: yes;"> </span>The real significance of
seeing balloons this night, is that the hot air balloon was the central focus
of the “Team Marcia” logo we’ve used for two years to raise money for
Alzheimer’s research.<span style="mso-spacerun: yes;"> </span>Coincidence this
happened tonight?<span style="mso-spacerun: yes;"> </span>Probably, but what a
perfect night for the balloons to go up.</div>
<br />
<div style="tab-stops: 175.5pt;">
<o:p> </o:p></div>
<br />
<div style="tab-stops: 175.5pt;">
While the memorial weekend was a near perfect
festive celebration, adjusting to life without Marcia has had many emotional
moments.<span style="mso-spacerun: yes;"> </span>As the adrenalin rush of the
weekend faded, life did begin a “new normal”.<span style="mso-spacerun: yes;">
</span>No more memorial service planning, family and friends returned home,
Ryan and Riley went back school, and I’ve gone back to work.<span style="mso-spacerun: yes;"> </span>Life without Marcia will take some getting
used to, though it still seems her death is not yet real.<span style="mso-spacerun: yes;"> </span>Three events since the memorial weekend were
much harder to deal with:</div>
<br />
<div style="margin-left: 0.5in; mso-list: l0 level1 lfo1; tab-stops: 175.5pt; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]-->The day after the memorial service, Marcia’s
sister, Cindy went through all of Marcia’s clothes.<span style="mso-spacerun: yes;"> </span>Cindy cleaned out all of Marcia’s drawers and
closets and bagged up 8 large trash bags full of clothes to donate to
charity.<span style="mso-spacerun: yes;"> </span>Cindy took some shirts, my
daughter took a few things, as did some of Marcia’s friends.<span style="mso-spacerun: yes;"> </span>I had a few shirts I wanted to keep too and
the longer I looked at the piles of clothes, the more things I wanted to keep.<span style="mso-spacerun: yes;"> </span>This was really the first thing we did that
made Marcia’s death seem real.<span style="mso-spacerun: yes;"> </span>I was so
grateful Cindy was here to do this as I think this would have been difficult
for me to do on my own.</div>
<br />
<div style="margin-left: 0.5in; mso-list: l0 level1 lfo1; tab-stops: 175.5pt; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]-->April 30<sup>th</sup> would have been Marcia’s
55<sup>th</sup> birthday.<span style="mso-spacerun: yes;"> </span>I expected this
to be high on the emotional scale, and it was, but not unmanageably so.<span style="mso-spacerun: yes;"> </span>I looked at pictures and some video’s taken
over the last few weeks of her life and they just reminded me of how unhappy
she was and how much suffering she endured as the disease took over her life.<span style="mso-spacerun: yes;"> </span>While I missed her and thought of her all day,
the Marcia we honored a few weeks ago had been gone for quite some time.</div>
<br />
<div style="margin-left: 0.5in; mso-list: l0 level1 lfo1; tab-stops: 175.5pt; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]-->Last Sunday was Mother’s Day.<span style="mso-spacerun: yes;"> </span>With Riley being away at college, this would
have been different even if Marcia would have been here.<span style="mso-spacerun: yes;"> </span>It’s painfully obvious that Mother’s Day,
while a happy and joyous occasion for most, is a salt in the wound day for
many.<span style="mso-spacerun: yes;"> </span>Mother’s Day should be celebrated
and it’s a much needed day to honor my mother, and Marcia’s mother too.<span style="mso-spacerun: yes;"> </span>It just brought up more emotions as being a
mom was the role Marcia cherished more than any other role.<span style="mso-spacerun: yes;"> </span></div>
<br />
<div style="tab-stops: 175.5pt;">
The emotional highs and lows of the last few weeks
are sure to continue into the foreseeable future.<span style="mso-spacerun: yes;"> </span>I felt I was as ready as I could be for
Marcia’s life to end since I’ve known for more than 4 years this disease would
take her life and slowly saw her physical and cognitive decline.<span style="mso-spacerun: yes;"> </span>But I wasn’t prepared for the emotional peaks
and valleys of losing the woman I’ve known for almost 25 at such a young
age.<span style="mso-spacerun: yes;"> </span>And I don’t think I could have <a href="https://www.blogger.com/null" name="_GoBack"></a>prepared for how Marcia’s death would really hit me.<span style="mso-spacerun: yes;"> </span>The relief I feel for her that her suffering
is over is the consistent emotion I can get my hands around.<span style="mso-spacerun: yes;"> </span>The “missing her” emotion, even though I’ve
missed so much of Marcia before she died, is so much harder to explain and
understand.<span style="mso-spacerun: yes;"> </span>And while my kids will see a
return to a normal life rather quickly, I will need to find a new normal
without Marcia.</div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com1tag:blogger.com,1999:blog-6671933337680078119.post-91112176976676484852015-04-17T21:18:00.000-04:002015-04-17T21:18:59.554-04:00She bravely fought an unwinnable fight: 04/30/1960 – 04/07/15
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<div style="tab-stops: 175.5pt;">
<a href="https://www.blogger.com/null" name="_GoBack">Marcia passed away at 1:15 a.m.
on Tuesday, April 7<sup>th</sup>.<span style="mso-spacerun: yes;"> </span>Her
graceful, courageous and inspired fight against Alzheimer’s/Lewy Body Dementia
mercifully came to an end.<span style="mso-spacerun: yes;"> </span>Marcia had
been in an irreversible, progressive condition for more than 4 years, and we
saw her slowly fade from the energetic, fun and outgoing women I married 22
years ago on April 3<sup>rd</sup>.<span style="mso-spacerun: yes;"> </span>But
the last month was particularly hard on her, and those that cared for or saw
her regularly.<span style="mso-spacerun: yes;"> </span></a></div>
<br />
<div style="tab-stops: 73.65pt;">
<span style="mso-bookmark: _GoBack;"><span style="mso-tab-count: 1;"> </span></span></div>
<br />
<div style="tab-stops: 175.5pt;">
<span style="mso-bookmark: _GoBack;">I don’t have a
handle on my emotions yet.<span style="mso-spacerun: yes;"> </span>I knew this
day would come once the diagnosis was made.<span style="mso-spacerun: yes;">
</span>I knew this day was coming when we saw such drastic changes in early
March, and I knew death was imminent once hospice care was involved.<span style="mso-spacerun: yes;"> </span>I had been praying that she go quickly and
comfortably, and in her last hours with me, she did seem comfortable, and she
also seemed ready to let go.<span style="mso-spacerun: yes;"> </span>I cried
when I saw her after she died, but I believe these were tears of relief for
her, and joy that she was now in God’s arms.<span style="mso-spacerun: yes;">
</span>I felt a sense of calm that I left nothing unsaid to her, and while I
don’t know if she heard or understood, I believe she was able to process how I
felt about her, that I did the best I could to care for her, and that she had
truly been a blessing in my life.<span style="mso-spacerun: yes;"> </span>But
the concept of her dying, and me being a widower is the other side of her
passing that I really hadn’t spent much time thinking about and tugs at my
emotions in a far less joyful way.</span></div>
<br />
<div style="tab-stops: 175.5pt;">
<span style="mso-bookmark: _GoBack;"><o:p> </o:p></span></div>
<br />
<div style="tab-stops: 175.5pt;">
<span style="mso-bookmark: _GoBack;">It will be a
few months before we know exactly what disease Marcia had.<span style="mso-spacerun: yes;"> </span>Clearly she had Primary Progressive Aphasia,
but whether or not she had Early Onset Alzheimer’s is not so clear.<span style="mso-spacerun: yes;"> </span>Over the last month of her life, her symptoms
more closely looked like Lewy Body Dementia, and it’s possible she had
both.<span style="mso-spacerun: yes;"> </span>I will write what might be a final
blog entry once have all the facts.<span style="mso-spacerun: yes;"> </span>I believe
she had Lewy Body Dementia based on the symptoms/behavior we saw, and I just don’t
think it was a coincidence that she stopped eating and sleeping the weekend
Riley was home from school.<span style="mso-spacerun: yes;"> </span>To me, it
seemed like a weekend our family together was the ideal time to say goodbye,
and this kind of rationale thinking, and other examples I could cite, isn’t
what one sees in advanced Alzheimer’s cases. We’ll never know whether she
consciously stopped eating or if this was just part of the progression of her
disease.<span style="mso-spacerun: yes;"> </span>But knowing how much she loved
her kids, I just think she had decided she had had enough, and was ready to go
after we were all home together.<span style="mso-spacerun: yes;"> </span></span></div>
<br />
<div style="tab-stops: 175.5pt;">
<span style="mso-bookmark: _GoBack;"><span style="mso-tab-count: 1;"> </span></span></div>
<br />
<div style="tab-stops: 175.5pt;">
<span style="mso-bookmark: _GoBack;">Doctors,
nurses, health aids, etc. have told me they have not seen anything quite like Marcia’s
situation, where so much change had happened in such a short period of time,
and all agreed that hospice was the right decision for her.<span style="mso-spacerun: yes;"> </span>Once under hospice care, she was taken off
all medications and seemed more alert than I had seen her in weeks.<span style="mso-spacerun: yes;"> </span>But she didn’t eat and continued to lose
weight and strength.<span style="mso-spacerun: yes;"> </span>The last four days
of her life, she never left her bed and was given increasingly frequent doses
of morphine to make her comfortable.<span style="mso-spacerun: yes;"> </span>I
had always expected Marcia would one day be in a memory unit of a Long Term
Care facility and thought we might be there by the end of the year.<span style="mso-spacerun: yes;"> </span>I thought she would minimally live in a LTC
unit for a few years.<span style="mso-spacerun: yes;"> </span>Never in my most
pessimistic thoughts did I think I would be planning a funeral before her 55<sup>th</sup>
birthday.<span style="mso-spacerun: yes;"> </span></span></div>
<br />
<div style="tab-stops: 175.5pt;">
<span style="mso-bookmark: _GoBack;"><o:p> </o:p></span></div>
<br />
<div style="tab-stops: 175.5pt;">
<span style="mso-bookmark: _GoBack;">As I reflect on
Marcia’s life, she was a blessing to me and to so many others.<span style="mso-spacerun: yes;"> </span>We will celebrate Marcia and the life she
lived prior to life with aphasia and dementia.<span style="mso-spacerun: yes;">
</span>We will celebrate the way she handled herself throughout the course of
her disease.<span style="mso-spacerun: yes;"> </span>We will be grateful that
Marcia seemed to control her own fate at the end.<span style="mso-spacerun: yes;"> </span>And being able to say goodbye, have Marcia’s
sister come and see her, and several close friends tell her it was okay to let
go and that they loved her is not something everyone has a chance to do before
someone they love dies.<span style="mso-spacerun: yes;"> </span>Once Marcia was
told she likely had Alzheimer’s 4 years ago, she knew what was coming in the
years ahead.<span style="mso-spacerun: yes;"> </span>And she lived those years
with as much grace as possible.<span style="mso-spacerun: yes;"> </span>She
never stopped trying to do as much as she could, she had very few days where
she didn’t smile and laugh, and she never lost her enthusiasm for seeing
friends and familiar faces.<span style="mso-spacerun: yes;"> </span>She is the
most inspirational person I’ve ever met. Though I’ve been missing the Marcia I
married for some time now, today I’m missing her and the privilege I had of
caring for her after all she did for her family for so many years.<span style="mso-spacerun: yes;"> </span>And I think about her all the time.</span></div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com6tag:blogger.com,1999:blog-6671933337680078119.post-90707184535986987732015-03-29T09:21:00.000-04:002015-03-29T09:21:07.673-04:00Can’t keep up with the pace of change – Hospice
<br />
<div style="tab-stops: 175.5pt;">
The pace of change in Marcia continues to perplex and
overwhelm me.<span style="mso-spacerun: yes;"> </span>Less than 3 weeks ago
Marcia was living comfortably at home, though under 24 hour supervision.<span style="mso-spacerun: yes;"> </span>Sixteen days ago Marcia was in the hospital, which<a href="https://www.blogger.com/null" name="_GoBack"></a> was the last time she was in our house.<span style="mso-spacerun: yes;"> </span>Eleven days ago Marcia was in the sub-acute
unit of Foothill Acres, a long term care facility in Hillsborough NJ.<span style="mso-spacerun: yes;"> </span>One day later she was moved to the Memory
Unit and 10 days later, we have decided that hospice care is the best option
for her given her wishes and the state of her illness.</div>
<br />
<div style="tab-stops: 64.45pt;">
<span style="mso-tab-count: 1;"> </span></div>
<br />
<div style="tab-stops: 175.5pt;">
Marcia has not really eaten and she doesn’t drink
much since she’s been at Foothill Acres.<span style="mso-spacerun: yes;">
</span>In her first full week, Marcia has lost 6 pounds and in the 5 days since
her last weigh in, she’s eaten very little, and some days, nothing at all.<span style="mso-spacerun: yes;"> </span>She’s lost more than 20 pounds since January
and more than 30 pounds since the fall.<span style="mso-spacerun: yes;"> </span>Her
sodium levels are dangerously high and the doctors ordered IV’s to help get her
sodium levels under control.<span style="mso-spacerun: yes;"> </span>The IV’s
might work if Marcia wouldn’t pull the tubes out.<span style="mso-spacerun: yes;"> </span>I watched them try to put another tube in,
without success.<span style="mso-spacerun: yes;"> </span>They could not find a
vein that hadn’t already been punctured or bruised.<span style="mso-spacerun: yes;"> </span>Marcia’s doctor called me at home to go
through options for Marcia.<span style="mso-spacerun: yes;"> </span>She said
they could put in a pic line (spelling?), which would require
hospitalization.<span style="mso-spacerun: yes;"> </span>Pic lines are usually
for lengthy use and could help with hydration.<span style="mso-spacerun: yes;">
</span>But without other nutrients needed through food, Marcia would develop
other complications without regaining cognition.<span style="mso-spacerun: yes;"> </span>Marcia is suffering.<span style="mso-spacerun: yes;"> </span>She’s suffering plenty both physically and
mentally.<span style="mso-spacerun: yes;"> </span>She doesn’t acknowledge me or
other friends and looks like she’s in constant pain.<span style="mso-spacerun: yes;"> </span>Walking is no longer realistic and I watch
the nurse try to feed her and getting her to swallow anything takes enormous
effort on the part of Marcia and the nurse.</div>
<br />
<div style="tab-stops: 175.5pt;">
<o:p> </o:p></div>
<br />
<div style="tab-stops: 175.5pt;">
Hospice means they will abandon the IV drips, will
discontinue physical therapy, among other things. They will do all they can to make
her comfortable with appropriate drugs.<span style="mso-spacerun: yes;">
</span>I don’t know how much time she has left, but at this point I’m praying
for God to take her quickly and painlessly.</div>
<br />
<div style="tab-stops: 175.5pt;">
<o:p> </o:p></div>
<br />
<div style="tab-stops: 175.5pt;">
Over the last four years, I have adjusted to the
steady progression of her disease because the daily changes have been
relatively subtle.<span style="mso-spacerun: yes;"> </span>The last 3 weeks have
been much harder on me because the changes have been so dramatic.<span style="mso-spacerun: yes;"> </span>With the tremendous support of Marcia’s
family, my family, and countless friends, I know this is the right
decision.<span style="mso-spacerun: yes;"> </span>But with each change is
another, deeper feeling of grief.<span style="mso-spacerun: yes;"> </span>Both
grief and relief.</div>
<br />
<div style="tab-stops: 175.5pt;">
<o:p> </o:p></div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com0tag:blogger.com,1999:blog-6671933337680078119.post-23323395348966764892015-03-22T23:26:00.003-04:002015-03-22T23:26:15.967-04:00Home to hospital to Long Term Care Facility in 7 days
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<div style="tab-stops: 175.5pt;">
I still don’t know what happened!<span style="mso-spacerun: yes;"> </span>In hindsight, maybe there were signals I
missed.<span style="mso-spacerun: yes;"> </span>But without experience in this stage
of the disease, I couldn’t have predicted, and I’m not sure anyone could have
predicted the sudden changes in Marcia over the last 10 days that have changed
my life.<span style="mso-spacerun: yes;"> </span>One of those signals I wrote
about in my last post, which described the “cracks in her strong façade”.<span style="mso-spacerun: yes;"> </span>The crying and the occasional aggression
towards me were appearing, but almost overnight, things changed in every aspect
of her life.<span style="mso-spacerun: yes;"> </span>Crying became a constant
and happened several times every day.<span style="mso-spacerun: yes;">
</span>Marcia virtually stopped eating and drinking, and she went from
predictable 9:00 – 6:30 sleeping to hardly sleeping at all.<span style="mso-spacerun: yes;"> </span>And in one day, she went from wanting to hug
me, to an almost rage at the sight of me.<span style="mso-spacerun: yes;">
</span>She was having hallucinations and was hospitalized for five days for
what the hospital called “delirium”.<span style="mso-spacerun: yes;"> </span>She
went from being comfortably living at home to having to be placed in a dementia
unit at a local rehabilitation and nursing center indefinitely and likely
permanently.<span style="mso-spacerun: yes;"> </span>In my Facebook support group,
people often ask how one knows when it’s time for placement and those that have
been through it often say “you’ll know”.<span style="mso-spacerun: yes;">
</span>I found that to be true in our case too.<span style="mso-spacerun: yes;">
</span>I just never expected it would go from “I know it’s out there” to “I
have to do this today”, and frankly this hardly seems real.<span style="mso-spacerun: yes;"> </span>I haven’t felt these emotions, grief maybe,
since she was diagnosed four years ago.</div>
<br />
<div style="tab-stops: 175.5pt;">
<o:p> </o:p></div>
<br />
<div style="tab-stops: 175.5pt;">
Two weeks ago on a Friday, Marcia went to the Day
Center.<span style="mso-spacerun: yes;"> </span>Once home, she cried often, then
laughed, danced in our living room with a friend, then cried some more.<span style="mso-spacerun: yes;"> </span>While I’ll never know what’s really happening
with Marcia, I believe the dancing and laughing are remnants of who Marcia
really is:<span style="mso-spacerun: yes;"> </span>a fun, upbeat and positive
person who loves music.<span style="mso-spacerun: yes;"> </span>I believe the
crying is cognitive awareness and severe depression over what’s going on with
her.<span style="mso-spacerun: yes;"> </span>I think her tears are frustration
and self-grief over what is happening to her and her family.</div>
<br />
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<o:p> </o:p></div>
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The next day crying was joined by anger and
tantrum-like behavior and what could be described as obsessive compulsive
rubbing of her thighs, knees and legs that could have been the beginning of
hallucinations.<span style="mso-spacerun: yes;"> </span>Then on Sunday, she went
from hugging me, to hitting, pushing and pinching me.<span style="mso-spacerun: yes;"> </span>Her sleeping pattern changed and she got up 5
times between midnight and 6:00 a.m.<span style="mso-spacerun: yes;"> </span></div>
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<o:p> </o:p></div>
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The next night she wouldn’t let me touch her and
wouldn’t come upstairs with me.<span style="mso-spacerun: yes;"> </span>When she
would sit, she would sit in one place for just a few minutes, go to another
part of the room and sit for just a few minutes before moving again.<span style="mso-spacerun: yes;"> </span>When she wasn’t sitting, Marcia wandered
around our living room, hallway and laundry room knocking pictures over and
pulling things off the wall.<span style="mso-spacerun: yes;"> </span>I sort of
followed her around, hiding pictures, knives, knobs from the stove, and keeping
her away from the staircase.<span style="mso-spacerun: yes;"> </span>Finally she
fell asleep on the couch around 4:00 a.m. and I got a few hours of sleep too.</div>
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<o:p> </o:p></div>
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The next night saw more of the same.<span style="mso-spacerun: yes;"> </span>Aggression towards me, throwing things and an
outburst towards my son left me angry at Marcia and wondering what I should
do.<span style="mso-spacerun: yes;"> </span>I called the Alzheimer’s hotline and
they suggested I call 911.<span style="mso-spacerun: yes;"> </span>I was going
on three nights of little to no sleep and was concerned about Marcia’s safety,
my son’s safety and the impact this was having on him.<span style="mso-spacerun: yes;"> </span>I was sure Marcia would have to sleep this
night having not slept much two nights in a row.<span style="mso-spacerun: yes;"> </span>The night started off promising with Marcia sleeping
from 8:30 until almost midnight.<span style="mso-spacerun: yes;"> </span>But after
midnight she wandered around our bedroom and bathroom or sat on the edge of the
bed jiggling her legs until about 4:00 a.m. before falling asleep on the
floor.<span style="mso-spacerun: yes;"> </span>Three nights with virtually no
sleep, little food or water and significant increase in hallucinatory
behavior.<span style="mso-spacerun: yes;"> </span>At least confined to our
bedroom, I worried less about what she was doing though I couldn’t even try to
sleep.<span style="mso-spacerun: yes;"> </span>The next morning I called 911. </div>
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<o:p> </o:p></div>
<br />
<div style="tab-stops: 175.5pt;">
While in the hospital, they checked for urinary
tract infections, dehydration, infections/bleeding of the brain and anything else
that might explain the sudden change in behavior.<span style="mso-spacerun: yes;"> </span>MRI’s, CT scans, EEG’s, blood work, etc…showed
only further deterioration of the brain due to Alzheimer’s, but nothing that we
could treat.<span style="mso-spacerun: yes;"> </span>Marcia was restless all the
time and fell out of bed once, and appeared to bruise her hands and wrist by
aggressively twisting and wringing her hands.<span style="mso-spacerun: yes;">
</span>It now looks more like Dementia with Lewy Body than typical Alzheimer’s.<span style="mso-spacerun: yes;"> </span>DLB is another kind of dementia with a
different look, including slumping posture, hallucinations, rigid muscles and
shuffling walk.<span style="mso-spacerun: yes;"> </span>Marcia has all of these
symptoms, but there is not a test that will determine if this is accurate, only
the best guess of experts.<span style="mso-spacerun: yes;"> </span>Her
neurologist will see her in a few weeks, but has had DLB on his radar screen
since June.<span style="mso-spacerun: yes;"> </span>The outlook is no different
from Alz, and she might have both.<span style="mso-spacerun: yes;"> </span>The
truth is that it really doesn’t matter what label is put on her illness because
the progression is unstoppable, though with medication, we hope to see her rest
at night and be alert during the day.<span style="mso-spacerun: yes;"> </span></div>
<br />
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<o:p> </o:p></div>
<br />
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Marcia has been in the Rehab and Nursing Center
for 6 days now and is going through rehabilitation to help her walk and improve
her ability to swallow.<span style="mso-spacerun: yes;"> </span>For now she’s
confined to a wheel chair and can’t eat solid foods, or drink anything that
hasn’t been thickened (she has “delayed swallowing”) because they worry about
her aspirating.<span style="mso-spacerun: yes;"> </span>She doesn’t speak but
recognizes friends and greets them with a smile and sometimes a hug.<span style="mso-spacerun: yes;"> </span>And she still cries every day and has a
stuffed animal that she has torn apart already.<span style="mso-spacerun: yes;">
</span>Seeing her there in a wheel chair, with 43 other people who have at
least 20 years on her takes my breath away and leaves me emotionally spent
every time I visit.<span style="mso-spacerun: yes;"> </span>I don’t have any
regrets or guilt about the decision to place her and have had wonderful support
from family, friends and even strangers from my FB support group. Ryan and I
are sleeping better and home life is a lot less stressful, and we are enjoying
our daughter being home for spring break.<span style="mso-spacerun: yes;">
</span>But I feel an incredible emptiness and sadness knowing Marcia is in a
facility where she doesn’t want to be and that she is likely very lonely,
scared and depressed.<span style="mso-spacerun: yes;"> </span>But there is
comfort in knowing she is being taken care of by professionals, is safe and
that my kids are less stressed at home.</div>
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<o:p> </o:p></div>
<br />
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One last point to this incredible turn of events
has to be around the support I have been given.<span style="mso-spacerun: yes;">
</span>My last post I mentioned I would talk about how family and friends often
disappear from the lives of families experiencing Alzheimer’s, and that was my
intent until the series of events of the last 10 days or so occurred.<span style="mso-spacerun: yes;"> </span>I will say that we have experienced the
disappearance of some friends.<span style="mso-spacerun: yes;"> </span>But we
are truly blessed in the PRESENCE of friends.<span style="mso-spacerun: yes;">
</span>Marcia’s close friends (I’ve called them “my other wives”) have been
with us every day and have significantly helped Marcia adjust to the hospital
and the Nursing Center, while helping me in ways I just can’t find the words to
write.<span style="mso-spacerun: yes;"> </span>Our family has had wonderful
support through meals, visits, cards, emails and Facebook postings from our
church, friends and coworkers.<span style="mso-spacerun: yes;"> </span>I’ve had
college friends visit from PA, DE and NC, visits planned by friends from Western
PA and MA, and coworkers and friends who don’t live close to us offering to
help and empathizing with what we are going through.<span style="mso-spacerun: yes;"> </span>I am hu<a href="https://www.blogger.com/null" name="_GoBack"></a>mbled by the
support, more than I could ever put into words.<span style="mso-spacerun: yes;">
</span>All I can say is “thank you” all.</div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com1tag:blogger.com,1999:blog-6671933337680078119.post-6202478906719251792015-03-01T20:52:00.001-05:002015-03-01T20:52:20.435-05:00At least it’s warm in Hell
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Over the last couple of weeks, we’ve seen many
days with snow, single digit temperatures and even below zero temps and wind
chills of -20, so the heat of hell is somewhat appealing right now.<span style="mso-spacerun: yes;"> </span>Although I’m choosing to keep as positive an
outlook as I can, caregiving and everything affected by it, has become
difficult and there are times I feel like hell would be an upgrade.<span style="mso-spacerun: yes;"> </span>Alzheimer’s has tested my temperament and
angered me countless times.<span style="mso-spacerun: yes;"> </span>I’ve been mad
at me, mad at Marcia, mad at my kids, friends, employer and even God when it’s
Alzheimer’s I’m really angry with.<span style="mso-spacerun: yes;"> </span>When
I think how bad things are on any given “today”, I know the future, with
continued progression, will never be as good as it is today.<span style="mso-spacerun: yes;"> </span>I look back on two years ago when I had reason
to feel bad about our situation, and wish for things to be that “bad” again.<span style="mso-spacerun: yes;"> </span>My life has been blessed in many ways and I
can’t really compare it to Hell, but I am angry.<span style="mso-spacerun: yes;"> </span>Angry because:</div>
<br />
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]-->Marcia is “forcing me to dance”.<span style="mso-spacerun: yes;"> </span>She used to be able to sit in front of the TV
when I was working at home or doing normal around-the-house stuff.<span style="mso-spacerun: yes;"> </span>Well Marcia really doesn’t watch TV anymore
and it’s becoming harder and harder to find things that interest her.<span style="mso-spacerun: yes;"> </span>I’ve read and been told how good music is for
those with Alzheimer’s and while Marcia has always loved music, she really
responds to it now and she dances constantly.<span style="mso-spacerun: yes;">
</span>Of course she doesn’t force me to dance, but I dance with her often even
though I hate to dance.<span style="mso-spacerun: yes;"> </span>But I love
seeing her smile and laugh (at me???), and at least (almost) no one else is
watching!!<span style="mso-spacerun: yes;"> </span>My son has walked in on us
several times.<span style="mso-spacerun: yes;"> </span>The trauma I’ve put this
boy through….<span style="mso-spacerun: yes;"> </span>Marcia used to be a great
dancer, but no more.<span style="mso-spacerun: yes;"> </span>Her motor skill
deterioration limits what she can do and she’s probably a tenth the dancer she
used to be.<span style="mso-spacerun: yes;"> </span>Of course this still makes
her twice as good as me!<span style="mso-spacerun: yes;"> </span>If this wasn’t
hell-like, it wouldn’t be dancing that interests her, it would be back-to-back
episodes of Sports Center, or movies like Shawshank Redemption or Get Smart re-runs.<span style="mso-spacerun: yes;"> </span>No such luck…<span style="mso-spacerun: yes;">
</span>Once “The Bump” went out of style in the 70’s, I had no dance moves
left.<span style="mso-spacerun: yes;"> </span>I think I’m going to teach myself
how to Moon Walk soon.<span style="mso-spacerun: yes;"> </span></div>
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]-->The difficult moments are increasing in
frequency and I’m feeling several weeks of cumulative frustration, anger and
sadness.<span style="mso-spacerun: yes;"> </span>My last post talked about
Marcia’s progression, which is at the core of today’s rant.<span style="mso-spacerun: yes;"> </span>I’m aware that if I sat back and really
thought about my situation, I would be depressed.<span style="mso-spacerun: yes;"> </span>I’ve lost my wife, my job and career and any
semblance of a social life.<span style="mso-spacerun: yes;"> </span>Sleep,
exercise and spontaneity are not where I wish they were.<span style="mso-spacerun: yes;"> </span>Probably most regrettable, and something I
won’t get back is this:<span style="mso-spacerun: yes;"> </span>I’m not able to
spend as much time with my kids as I think is necessary and therefore, I’m
missing chunks of their teenage years.<span style="mso-spacerun: yes;">
</span>Honestly, I am less stressed when they aren’t around Marcia.<span style="mso-spacerun: yes;"> </span>Weekends are hard because I just can’t
entertain Marcia and get all the things done that need to be done.<span style="mso-spacerun: yes;"> </span>Looking at the bright side of things, I have
had almost 20 good years with Marcia, more than 30 years with two great
companies, many wonderful social memories and two bright, healthy and active kids
that have been such a joy.</div>
<br />
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]-->Marcia is showing cracks in her strong
façade.<span style="mso-spacerun: yes;"> </span>She has been incredibly brave,
courageous and full of grace since her Alzheimer’s diagnosis.<span style="mso-spacerun: yes;"> </span>She has every right to be angry and
depressed, but has only recently let it get the best of her.<span style="mso-spacerun: yes;"> </span>I rarely saw her cry during the four years
since her diagnosis, but over the last 3 months, tears have been almost a daily
event.<span style="mso-spacerun: yes;"> </span>Sometimes it’s not just crying,
it’s hysterical crying and at times, it’s best described as a tantrum.<span style="mso-spacerun: yes;"> </span>And she can’t tell me why she’s crying.<span style="mso-spacerun: yes;"> </span>She tries to tell me, but she just can’t get
the words out.<span style="mso-spacerun: yes;"> </span>She’s frustrated and has
tried to hit me on a couple of occasions.<span style="mso-spacerun: yes;">
</span>Not violent strikes, but more like “you-just-don’t-get-it” jabs.<span style="mso-spacerun: yes;"> </span>I just don’t know what to do to help her.<span style="mso-spacerun: yes;"> </span>Marcia could be frustrated due to constant
pain.<span style="mso-spacerun: yes;"> </span>It’s not far-fetched that
arthritis, her neck pain or spinal stenosis is causing pain.<span style="mso-spacerun: yes;"> </span>She also has headaches almost every day.<span style="mso-spacerun: yes;"> </span>Depression could easily be the reason for her
tears, which is understandable and perhaps long overdue.<span style="mso-spacerun: yes;"> </span>She can’t communicate, has a hard time
walking and has vision problems.<span style="mso-spacerun: yes;"> </span>And
that’s just what I know about.<span style="mso-spacerun: yes;"> </span>I saw a film
clip recently where an ABC news correspondent spent 12 minutes simulating the
life of an Alzheimer’s patient.<span style="mso-spacerun: yes;"> </span>I was
unaware that many Alzheimer’s sufferers report hearing a constant noise.<span style="mso-spacerun: yes;"> </span>This noise was simulated in the 12 minute
clip.<span style="mso-spacerun: yes;"> </span>It drove the news correspondent
crazy and distracted her from pretty simple tasks.<span style="mso-spacerun: yes;"> </span>In just 12 minutes.<span style="mso-spacerun: yes;"> </span>Maybe Marcia doesn’t have headaches.<span style="mso-spacerun: yes;"> </span>She holds her head in both of her hands almost
every day and I wonder if it’s because she hears a constant noise too.<span style="mso-spacerun: yes;"> </span>I can’t imagine what she’s truly going
through, but seeing her cry so often is almost more than I can take.</div>
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]-->And I’m angry about how Alzheimer’s is portrayed
to the public, even by expert organizations like the Alzheimer’s association.<span style="mso-spacerun: yes;"> </span>I’m angry that months ago several politicians
proposed investing $6 billion dollars on Ebola research after one American
death and 4 were reported infected.<span style="mso-spacerun: yes;"> </span>I’m
not down on Ebola as I understand the potential impact Ebola could have if it
spread here in the US.<span style="mso-spacerun: yes;"> </span>It’s just that
it’s more than has been spent on Alzheimer’s disease in a decade while millions
have died and more than 5million Americans are living with the disease today,
from which not one person has ever been cured.<span style="mso-spacerun: yes;">
</span>Fears of Ebola, or Aids or terrorist attacks get action.<span style="mso-spacerun: yes;"> </span>“Memory loss” in the elderly just doesn’t
make the front page. Even the movie “Still Alice”, where the trailer shows the
daughter asking Alice what it’s like and she says some days are good and some
days I just can’t find myself, or “I’m not suffering, I’m struggling”.<span style="mso-spacerun: yes;"> </span>That’s soft selling the reality that most of
us living with this @#$%^ <span style="mso-spacerun: yes;"> </span>disease face.<span style="mso-spacerun: yes;"> </span>I’ve mentioned above how Marcia is
suffering.<span style="mso-spacerun: yes;"> </span>I am suffering and so are my
kids. <span style="mso-spacerun: yes;"> </span>Marcia’s brain is wasting away and
she knows it and I watch it happen daily while I’m isolated from the rest of
the world.</div>
<br />
<div style="tab-stops: 175.5pt;">
While angry and frustrated, I am one of <a href="https://www.blogger.com/null" name="_GoBack"></a>the lucky ones.<span style="mso-spacerun: yes;"> </span>I
don’t have some of the financial challenges so many others face, and I have a
good support system from friends and family.<span style="mso-spacerun: yes;">
</span>So many families have to sell their homes to pay for health care and
prescription drugs and even more report being abandoned by friends and family
(next post will talk about this).<span style="mso-spacerun: yes;"> </span>Those
living with Alzheimer’s and those that will be living with Alzheimer’s need to
have hope.<span style="mso-spacerun: yes;"> </span>Julianne Moore’s Oscar winning
performance as a woman with early onset Alzheimer’s and her wonderful acceptance
speech are helping raise awareness for this disease.<span style="mso-spacerun: yes;"> </span>And Glen Campbell’s song about living with
Alzheimer’s, “I’m Not Gonna Miss You” was performed by Tim McGraw, and while
the song did not win an Oscar, it was one of the nominees.<span style="mso-spacerun: yes;"> </span>While this post has a clear angry overtone, the
Oscars night was encouraging because so much awareness came out of that night
and subsequent interviews.<span style="mso-spacerun: yes;"> </span>For that I am
encouraged, not for Marcia, but for the next generation.<span style="mso-spacerun: yes;"> </span></div>
<br />
<div style="tab-stops: 175.5pt;">
I’m just sick of Alzheimer’s, and so tired.</div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com4tag:blogger.com,1999:blog-6671933337680078119.post-72498760024550347532015-01-25T23:04:00.000-05:002015-01-25T23:04:06.665-05:00Year 4 Progression update
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<span style="color: red;"><span style="color: black;">Four years have passed
since Marcia’s Alzheimer’s diagnosis and I haven’t blogged often, or with
detail, on how Alzheimer’s is progressing.<span style="mso-spacerun: yes;">
</span>Anyone can go do simple research to understand the seven stages of the
disease that describe how Alzheimer’s slowly takes the life of the afflicted,
and within Alzheimer’s circles, at least in the Early Onset Facebook support
group I’m a member of, there seems to be an obsession with the stage we are
dealing with.<span style="mso-spacerun: yes;"> </span>I don’t put a lot of stock
in the stages as sequential steps in the disease.<span style="mso-spacerun: yes;"> </span>I’m not aware of anyone who fits neatly into
each stage and who moves predictably from one stage to the next.<span style="mso-spacerun: yes;"> </span>In Marcia’s case, she would have been
described as stage 5/6/7 very early on with regard to communication, but memory
and most other areas were in stage 2.<span style="mso-spacerun: yes;">
</span>Bottom line is that it doesn’t matter to me what stage Marcia is in.<span style="mso-spacerun: yes;"> </span>Today is the only thing that matters, and no
one really knows what tomorrow or the day after will bring.<span style="mso-spacerun: yes;"> </span>And the most frustrating part of Alzheimer’s,
there’s nothing we can do to prevent what’s going to happen anyway.<o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 73.5pt;">
<span style="color: red;"><span style="color: black;"><span style="mso-tab-count: 1;"> </span><o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 175.5pt;">
<span style="color: red;"><span style="color: black;">For those that know
Marcia, but are not near us, or for those who wonder or ask “how’s Marcia”, I
hope you find this helpful. <span style="mso-spacerun: yes;"> </span>Progression
of the disease varies by person.<span style="mso-spacerun: yes;"> </span>The
average life expectancy is 8 years from diagnosis, but some live 20 years or
more with Alzheimer’s.<span style="mso-spacerun: yes;"> </span>There’s a theory
that those with Early Onset progress faster than those diagnosed later in life.<span style="mso-spacerun: yes;"> </span>Our neurologist believes progression tends to
be steady.<span style="mso-spacerun: yes;"> </span>Could be fast steady, or a
slow steady, but there doesn’t appear to be stabilizing periods.<span style="mso-spacerun: yes;"> </span>I would say that Marcia’s progression has
been steady, but there have been a few times, in conjunction with two seizure
episodes, where progression seemed to escalate. <span style="mso-spacerun: yes;"> </span>While I don’t have a frame of reference to
compare Marcia too, I would say her progression on on the faster side.<span style="mso-spacerun: yes;"> </span>Marcia and I recently had an appointment with
her neurologist in New York City.<span style="mso-spacerun: yes;"> </span>As Dr.
Honig looked at the last four years, spanning our first appointment with him to
now, he says progression would certainly appear faster than we would like to
see.<o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 175.5pt;">
<span style="color: red;"><span style="color: black;">So what does progression
look like? Progression for Marcia is deterioration of abilities in the area of
speech, mobility, memory and self-care and all have changed, or progressed in
2014.<span style="mso-spacerun: yes;"> </span>While I’m committed to protecting
her dignity with regard to how much I share here publicly, it’s fair to make
the following assessment of where she is today:<o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
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<!--[if !supportLists]--><span style="color: black;"><span style="color: red; font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="color: red;">Speech (aphasia) has
always been front and center in Marcia’s Alzheimer’s presentation.<span style="mso-spacerun: yes;"> </span>Aphasia is still very much the dominant
characteristic.<span style="mso-spacerun: yes;"> </span>While she seems to know
what she wants to say, she really cannot communicate with us at all.<span style="mso-spacerun: yes;"> </span>Not only does she have extreme difficulty
verbalizing anything, it’s become very difficult to get her to give even yes or
no responses.<span style="mso-spacerun: yes;"> </span>Her speech has
deteriorated to little more than a few words a day and if she’s in pain (and
she is), she can’t say or even point to where her discomfort is.<span style="mso-spacerun: yes;"> </span>If she wants something, I do my best to guess.<span style="mso-spacerun: yes;"> </span>I wish I could remember the last conversation
we’ve had, but it’s been years.<o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
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<!--[if !supportLists]--><span style="color: black;"><span style="color: red; font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="color: red;">18 months ago, Marcia
ran two 5k races.<span style="mso-spacerun: yes;"> </span>In May, she ran part
of the Branchburg Race Against Alzheimer’s (unplanned, but she was determined
to try).<span style="mso-spacerun: yes;"> </span>Today, she has difficulty
walking up the stairs to our bedroom.<span style="mso-spacerun: yes;"> </span>I
don’t think this is entirely Alz related.<span style="mso-spacerun: yes;">
</span>Hip arthritis and spinal stenosis are likely causes too, but there is
some dementia contributions. <span style="mso-spacerun: yes;"> </span>Maybe not
Alzheimer’s.<span style="mso-spacerun: yes;"> </span>It could be Lewy Body
Dementia that is factored in here.<span style="mso-spacerun: yes;"> </span>In
addition to pain or discomfort, she also tires easily, which prevents even
walking through the supermarket on a basic shopping trip.<o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="margin-left: 0.5in; mso-list: l0 level1 lfo1; tab-stops: 175.5pt; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="color: black;"><span style="color: red; font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="color: red;">Her vision has become
significantly impaired.<span style="mso-spacerun: yes;"> </span>By this I don’t
mean she needs a new pair of glasses.<span style="mso-spacerun: yes;">
</span>Her vision changes appear to be in how she processes images.<span style="mso-spacerun: yes;"> </span>Since she can’t tell us what she sees, we can
only guess that she’s not seeing things the same way we do.<span style="mso-spacerun: yes;"> </span>She seems to see things that aren’t there (shadows
seem to appear three dimensional, or look like holes) and her peripheral vision
seems to have narrowed rather significantly.<span style="mso-spacerun: yes;">
</span>She seems to do okay during the day, when she’s not tired, or in well-lit
areas.<span style="mso-spacerun: yes;"> </span>At night, when shadows are
present or when she’s tired she becomes paralyzed with fear and either takes
baby steps, or freezes in place.<span style="mso-spacerun: yes;"> </span>We now
have a wheel chair/transport chair to help get her around in these situations.<o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="margin-left: 0.5in; mso-list: l0 level1 lfo1; tab-stops: 175.5pt; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="color: black;"><span style="color: red; font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="color: red;">Posture:<span style="mso-spacerun: yes;"> </span>Marcia cannot stand up straight.<span style="mso-spacerun: yes;"> </span>Often, her chin is firmly against her
chest.<span style="mso-spacerun: yes;"> </span>She’s been going to physical
therapy to help straighten her spine and loosen the muscles in her neck.<span style="mso-spacerun: yes;"> </span>It would appear this is dementia related as sometimes
she can keep her head upright, other times she has the posture of a much older
woman.<o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="margin-left: 0.5in; mso-list: l0 level1 lfo1; tab-stops: 175.5pt; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="color: black;"><span style="color: red; font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="color: red;">Self-care:<span style="mso-spacerun: yes;"> </span>As hard as Marcia might try, she just cannot
do things for herself.<span style="mso-spacerun: yes;"> </span>I feed her breakfast
and dinner every day.<span style="mso-spacerun: yes;"> </span>While she can no
longer utilize silverware without assistance, she can eat with her hands (sandwiches
and fruit).<span style="mso-spacerun: yes;"> </span>Her prescription drugs need
to be crushed and put into oatmeal, applesauce or yogurt, which she takes in
the morning and at night.<span style="mso-spacerun: yes;"> </span>She can’t get dressed
or undressed and she can’t shower or brush her teeth without assistance.<o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 175.5pt;">
<span style="color: red;"><span style="color: black;">Marcia’s cocktail of
illnesses include:<span style="mso-spacerun: yes;"> </span>Early Onset
Alzheimer’s, Lewy Body dementia, Primary Progressive Aphasia (PPA), Myoclonus,
Epilepsy, anxiety, depression, breast cancer, arthritis and spinal stenosis.<span style="mso-spacerun: yes;"> </span>We’ve stopped giving Marcia her breast cancer
medication after consultation with her oncologist.<span style="mso-spacerun: yes;"> </span>She had about 18 months more to go before she
would officially be considered in remission, but the side effects of the drug
include cognitive decline and her oncologist saw a pretty dramatic change in
six months and felt the risk of discontinuing the drug was low.<span style="mso-spacerun: yes;"> </span>Seizures and anxiety are effectively managed
by Keppra, Klonopin and Zoloft.<span style="mso-spacerun: yes;"> </span>But
Alzheimer’s, PPA and Lewy Body Dementia are not treatable.<span style="mso-spacerun: yes;"> </span>And that is painfully obvious.<o:p></o:p></span></span></div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com3tag:blogger.com,1999:blog-6671933337680078119.post-962123485128267302014-11-23T22:59:00.001-05:002014-11-23T22:59:39.891-05:00Caregiving and baseball
<br />
<div style="tab-stops: 175.5pt;">
I’m a fan of inspirational quotes or quotes of
wisdom and I’ll share two of them (I don’t remember where I read either, so
I’ll paraphrase).<span style="mso-spacerun: yes;"> </span>One said something
like “when you’ve met one person with Alzheimer’s, you’ve met one person with
Alzheimer’s”.<span style="mso-spacerun: yes;"> </span>This quote takes me back
to the Town Hall meeting I attended (and wrote about) several years ago where
caring for Alz patients was discussed.<span style="mso-spacerun: yes;"> </span>The
comment that stuck with me from that Town Hall referred to the difficulty in
training health care professionals in how to deal with Alz when it presents
itself differently in every case.<span style="mso-spacerun: yes;"> </span>As an
untrained health care professional thrown into a caregiving role, what the hell
do I know about caring for someone with Alzheimer’s with Marcia’s symptoms?<span style="mso-spacerun: yes;"> </span>I do what I do based on doctors suggestions, what
I read, what I feel and what I have time to do.<span style="mso-spacerun: yes;">
</span>Marcia has several doctors (neurologist, oncologist, an orthopedic
surgeon, and even physical therapists). <span style="mso-spacerun: yes;"> </span>And they don’t always agree on how to treat
Alzheimer’s, cancer, spinal stenosis and arthritis together.<span style="mso-spacerun: yes;"> </span>Often one doctor thinks we should do
something that one of the others says we should not.<span style="mso-spacerun: yes;"> </span>My medical training consisted of watching
every episode of MASH at least five times, and most episodes of ER.<span style="mso-spacerun: yes;"> </span>This, of course, totally qualifies me to make
decisions on surgery, medications and treatments.<span style="mso-spacerun: yes;"> </span>So I often do make the final decision.<span style="mso-spacerun: yes;"> </span>And I’ve made mistakes.<span style="mso-spacerun: yes;"> </span>I’ve failed.<span style="mso-spacerun: yes;">
</span></div>
<br />
<div style="tab-stops: 175.5pt;">
<o:p> </o:p></div>
<br />
<div style="tab-stops: 175.5pt;">
The second quote says that I should be honored to
be a caregiver, because I am the answer to someone’s prayers.<span style="mso-spacerun: yes;"> </span>While I believe that (and believe I have
prepared my whole life for this role), I do NOT feel honored.<span style="mso-spacerun: yes;"> </span>I am burdened, stressed and alone.<span style="mso-spacerun: yes;"> </span>And I have failed.<span style="mso-spacerun: yes;"> </span>Often.<span style="mso-spacerun: yes;">
</span>Both quotes refer to the challenges associated with caregiving, and I
know I am not alone in feeling inadequate in this role I’ve been forced to take
on by a cruel and nasty disease.</div>
<br />
<div style="tab-stops: 175.5pt;">
<o:p> </o:p></div>
<br />
<div style="tab-stops: 175.5pt;">
So what is the connection between caregiving and
baseball?<span style="mso-spacerun: yes;"> </span>I think the connection is the
high rate of failure.<span style="mso-spacerun: yes;"> </span>Baseball “stars”
get a hit 30% of the time.<span style="mso-spacerun: yes;"> </span>The other 70%
of time, they do not.<span style="mso-spacerun: yes;"> </span>They “fail” to get
on base and have calibrated success based on what others have done, not on
always succeeding.<span style="mso-spacerun: yes;"> </span>Since Marcia got sick,
I have tried as best I can to be a full time employee, the only parent to my
kids, a caregiver to Marcia, a cook, accountant, housecleaner (hahahahah, our
carpet throughout the house is one big drop cloth), husband, friend and I’m
sure other roles as well.</div>
<br />
<div style="tab-stops: 175.5pt;">
<o:p> </o:p></div>
<br />
<div style="tab-stops: 175.5pt;">
I can’t say I’ve failed 70% of the time, but I
have failed often.<span style="mso-spacerun: yes;"> </span>Have my kids received
the parenting that two parent households give?<span style="mso-spacerun: yes;">
</span>They have not.<span style="mso-spacerun: yes;"> </span>Have I performed
at work to the level required of my job?<span style="mso-spacerun: yes;">
</span>Nope. In fact, I recently lost my job and will no longer be working in a
few months.<span style="mso-spacerun: yes;"> </span>Have I done what I need to
for Marcia as fast and as thoroughly as she deserves?<span style="mso-spacerun: yes;"> </span>I wish I could say I have.<span style="mso-spacerun: yes;"> </span>I’ve not done things on the same timeline as
some feel I should.<span style="mso-spacerun: yes;"> </span>Have I worked on my
relationships with people I work with, went to school with, or have become
close to over the years?<span style="mso-spacerun: yes;"> </span>I haven’t
because I cannot.</div>
<br />
<div style="tab-stops: 175.5pt;">
<o:p> </o:p></div>
<br />
<div style="tab-stops: 175.5pt;">
In fact, I would probably give myself a grade no
higher than a “C” in any area, though to copy the formats from my kids’ report
cards, I would get high marks for effort.<span style="mso-spacerun: yes;">
</span>Yet in some ways I am that baseball superstar.<span style="mso-spacerun: yes;"> </span>Failing often, but in aggregate, I’m making
the all-star team.<span style="mso-spacerun: yes;"> </span>And I’ve been able to
accept my failings.<span style="mso-spacerun: yes;"> </span>Failures that others
might see in any given area.<span style="mso-spacerun: yes;"> </span>Did I
deserve to keep my job?<span style="mso-spacerun: yes;"> </span>No.<span style="mso-spacerun: yes;"> </span>My company had to pick the best people for
the job and I wasn’t the best.<span style="mso-spacerun: yes;"> </span>Can I
blame Alzheimer’s?<span style="mso-spacerun: yes;"> </span>I won’t travel and I
don’t put in the same hours I once did, all because of Alzheimer’s, and others
can and will.<span style="mso-spacerun: yes;"> </span>I’ve tried to keep work
and personal life separate, but I’ve not succeeded.<span style="mso-spacerun: yes;"> </span>Have I frustrated friends and family by not
getting home health aide sooner?<span style="mso-spacerun: yes;"> </span>I
have.<span style="mso-spacerun: yes;"> </span>Have I made all the decisions
others felt I should regarding Marcia’s care.<span style="mso-spacerun: yes;">
</span>Probably not.<span style="mso-spacerun: yes;"> </span>But I have made the
best decisions with the information I had, in the time I was able to carve out.</div>
<br />
<div style="tab-stops: 175.5pt;">
<o:p> </o:p></div>
<br />
<div style="tab-stops: 175.5pt;">
I am the only one who could see all of these
“lives” I’ve lived.<span style="mso-spacerun: yes;"> </span>And the truth is, I
feel good about what I’ve prioritized.<span style="mso-spacerun: yes;"> </span>I
feel good about my choices and decisions.<span style="mso-spacerun: yes;">
</span>I’ve wasted little time second guessing myself or worrying what others
think of my “performance” in any given area.<span style="mso-spacerun: yes;">
</span>While I’m not at all satisfied that I’ve given my employers, kids, and
Marcia all they deserve.<span style="mso-spacerun: yes;"> </span>I feel like
I’ve performed 30 hours of work every day.<span style="mso-spacerun: yes;">
</span>As long as Marcia is getting good care and attention from me, as long as
Riley and Ryan are happy and doing well socially and in school and I am there
for them when they need me, I’m not failing.<span style="mso-spacerun: yes;">
</span>At least not in my eyes.</div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com2tag:blogger.com,1999:blog-6671933337680078119.post-22712066876185858652014-11-23T22:57:00.001-05:002014-11-23T22:57:30.281-05:00Taking a break/Feeling blessed
<br />
<div style="tab-stops: 175.5pt;">
By taking a break, I’m referring to my time away
from blogging.<span style="mso-spacerun: yes;"> </span>Not only has there not
been any real break from the rest of my life, the pace of everything has
escalated over the last six months or so.<span style="mso-spacerun: yes;">
</span>There’s so much I could write about Marcia’s progression, and I will cover
this in future blogs.<span style="mso-spacerun: yes;"> </span>Beyond Alzheimer’s,
the last couple of months have been unusually busy.<span style="mso-spacerun: yes;"> </span>I just haven’t taken the time to write.<span style="mso-spacerun: yes;"> </span>And while I haven’t lost the desire, I
haven’t had the drive to do so.<span style="mso-spacerun: yes;"> </span></div>
<br />
<div style="tab-stops: 175.5pt;">
<o:p> </o:p></div>
<br />
<div style="tab-stops: 175.5pt;">
Since I last wrote here, our son graduated middle
school and a week later, our daughter graduated high school.<span style="mso-spacerun: yes;"> </span>Two really awesome milestones that also meant
we are now moving on to high school and…. college!<span style="mso-spacerun: yes;"> </span>Honestly, I think middle school graduation has
been the surprise emotion for me.<span style="mso-spacerun: yes;"> </span>With
all the college search, application and preparation, we’ve been thinking about
college for a several years.<span style="mso-spacerun: yes;"> </span>But in a
blink of an eye, we were done with middle school.<span style="mso-spacerun: yes;"> </span>Forever!<span style="mso-spacerun: yes;">
</span>I just don’t think I was totally prepared for this.</div>
<br />
<div style="tab-stops: 175.5pt;">
<o:p> </o:p></div>
<br />
<div style="tab-stops: 175.5pt;">
Work has been unexpectedly busy as my company doubled
in size via acquisition and I have been fortunate enough to work on part of the
transition in addition to my normal responsibilities.<span style="mso-spacerun: yes;"> </span>Outside of work, summer camps and jobs,
travel soccer and high school tryouts, freshman orientation at Drexel
University, my own summer soccer league, a few much needed trips to Drexel to
visit Riley, cooking and shopping (seriously!), not to mention everything going
on with Marcia have kept me busier than I can realistically manage.<span style="mso-spacerun: yes;"> </span>While Marcia went to Maine with her sister
for several days, we really did not have a summer vacation.<span style="mso-spacerun: yes;"> </span>I took a few days off to interview home
health companies in hopes of getting the right person to stay with Marcia to
supplement her time at the Day Center.<span style="mso-spacerun: yes;"> </span>Several
other days, or partial days, I took off for doctor’s appointments, to pick up
Marcia from the Day Center, or just catch up on my “to do” list around the
house.<span style="mso-spacerun: yes;"> </span>I did take a few days to go to
the beach with my son, my only fun/relaxing vacation all year.<span style="mso-spacerun: yes;"> </span></div>
<br />
<div style="tab-stops: 175.5pt;">
The tribulations associated with Alzheimer’s are
significant and have given me more angst, stress and some days, despair than I
ever thought I’d have to handle. Yet I feel blessed.<span style="mso-spacerun: yes;"> </span>That is not to say my life is one to be
envied.<span style="mso-spacerun: yes;"> </span>I can’t imagine anyone wanting
to trade places with me today.<span style="mso-spacerun: yes;"> </span>But I am
blessed because our situation is not nearly as bad as others.<span style="mso-spacerun: yes;"> </span>I’ve done most of my writing over the last
six months on Facebook, where I joined an Early Onset Alzheimer’s support
group.<span style="mso-spacerun: yes;"> </span>Over 2700 members posting
questions, venting, offering advice and sharing their stories and frustrations.<span style="mso-spacerun: yes;"> </span>It’s a closed FB group that has helped me
make decisions, and left me amazed at the devastation Alzheimer’s creates for
caregivers.<span style="mso-spacerun: yes;"> </span>I feel blessed because as
difficult as this has been on me, I’ve encountered people who have lost their
homes, cars, life savings, friends, family and jobs.<span style="mso-spacerun: yes;"> </span>I’ve heard from people who are on the verge
of breakdowns, depression and utter despair.<span style="mso-spacerun: yes;">
</span>Many are living paycheck to paycheck and are faced with choices I could
not imagine facing.<span style="mso-spacerun: yes;"> </span>Do they pay bills or
buy food?</div>
<br />
<div style="tab-stops: 175.5pt;">
<o:p> </o:p></div>
<br />
<div style="tab-stops: 175.5pt;">
I’ve read of a guy recently diagnosed with early
onset Alzheimer’s who has 5 kids and is only 32 years old.<span style="mso-spacerun: yes;"> </span>I’ve heard from a woman who was diagnosed at
the age of 27.<span style="mso-spacerun: yes;"> </span>I read of a 19 year old
college student who is the sole caregiver for her 50 something father.<span style="mso-spacerun: yes;"> </span>And more recently, I’ve read about diagnoses
in CHILDREN, kids as young as eleven and twelve with childhood versions of
Alzheimer’s and won’t likely live to see the age of 20.<span style="mso-spacerun: yes;"> </span>People have written about how their friends
have abandoned them, while others have family members who are critical of their
efforts, yet won’t lift a finger to help.<span style="mso-spacerun: yes;">
</span>While my support group size is not as big as it once was, the help I’m
getting is still significant and my parents come often to provide help with
Marcia, but also around the house (and they live 5 hours away).<span style="mso-spacerun: yes;"> </span>They have been awesome!</div>
<br />
<div style="tab-stops: 175.5pt;">
<o:p> </o:p></div>
<br />
<div style="tab-stops: 175.5pt;">
What I’m dealing with has changed the course of my
life completely, but others have it much worse than me.<span style="mso-spacerun: yes;"> </span>And besides all of this, Marcia is still
making this as easy on me as one can.<span style="mso-spacerun: yes;">
</span>I’ve read of situations in the FB group where aggressive behavior, anger,
denial and stubbornness are what other caregivers face.<span style="mso-spacerun: yes;"> </span>Marcia is none of those things.<span style="mso-spacerun: yes;"> </span>She still laughs and tries to do as much as
she can, in spite of her complete inability to speak, and limited ability to dress,
eat and bathe.</div>
<br />
<div style="tab-stops: 175.5pt;">
<o:p> </o:p></div>
<br />
<div style="tab-stops: 175.5pt;">
Make no mistake, Marcia’s Alz diagnosis is
devastating to her, to our family and to my future plans as well as my present
ego.<span style="mso-spacerun: yes;"> </span>Personally, I’m experiencing
failure like I’ve never seen in my life.<span style="mso-spacerun: yes;">
</span>I’m experiencing caregiving like I never imagined I would be doing.<span style="mso-spacerun: yes;"> </span>I have had once a week soccer games as my
only escape from constant reminders of what my life will and will not be in the
future.<span style="mso-spacerun: yes;"> </span>And I miss the social life I
once had and all the fun that goes with being able to socialize and enjoy
ourselves in the presence of others.<span style="mso-spacerun: yes;"> </span>But
I am blessed to have had the number of good years with Marcia that I have
had.<span style="mso-spacerun: yes;"> </span>I’m blessed that Marcia is such a
sweet and gentle person whom I admire so much for her courage and perseverance.<span style="mso-spacerun: yes;"> </span>I’m blessed to have supportive family and
friends.<span style="mso-spacerun: yes;"> </span>I’m blessed to have found a Day
Center that takes such good care of Marcia. I’m blessed to have worked for a
company with people who have been supportive and compassionate.<span style="mso-spacerun: yes;"> </span>I am blessed with a decision to buy Long Term
Care Insurance before we needed it!!! Without it, I may be selling our house,
cars and cashing in my 401k.<span style="mso-spacerun: yes;"> </span>And I am
blessed with two kids who have shown an amazing amount of strength to deal with
so much at such young ages.</div>
<br />
<div style="tab-stops: 175.5pt;">
<o:p> </o:p></div>
<br />
<div style="tab-stops: 175.5pt;">
I am blessed to be in the presence of a few
amazing “angels” who have been there when I’ve really needed them and a
community/friends/family/co-workers that once again showed up in great numbers
at the Branchburg Race Against Alzheimer’s and who have opened their
hearts/wallets to help raise money to fight Alzheimer’s.<span style="mso-spacerun: yes;"> </span>While it’s not quite the ice bucket challenge
(those of us in the Alzheimer’s community are jealous of how they have raised
money and awareness, but are supportive!!), through the efforts of the Napoli
family and countless volunteers, we once again raised more than $50,000 for the
Cure Alz fund.</div>
<br />
<div style="tab-stops: 175.5pt;">
<o:p> </o:p></div>
<br />
<div style="tab-stops: 175.5pt;">
There are times every week where I say “my life
sucks”.<span style="mso-spacerun: yes;"> </span>Sometimes it’s not my life, but
it’s me that sucks (more on that in the next post).<span style="mso-spacerun: yes;"> </span>But those statements are preceded by bad
moments.<span style="mso-spacerun: yes;"> </span>There are good ones too, every
day, and I have much to be thankful for.<span style="mso-spacerun: yes;">
</span>And I know that better days are ahead…..</div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com0tag:blogger.com,1999:blog-6671933337680078119.post-2142898597586487542014-06-14T09:20:00.000-04:002014-06-14T09:20:57.179-04:00Another Diagnosis. Really?
<br />
<div style="tab-stops: 175.5pt;">
On Monday, June 1 Marcia and I went to NYC to meet
with Dr. Honig, her neurologist.<span style="mso-spacerun: yes;"> </span>We
usually go every 3-4 months, but it’s been about 5 since our last visit as our
April appointment had to be moved.<span style="mso-spacerun: yes;"> </span>For
the last several appointments, we’ve had discussions about Marcia’s
medications.<span style="mso-spacerun: yes;"> </span>Are they still the right
medications, is the dosage correct, etc….What I’m finding out with AD is much
of what Marcia takes is really trial and error choices.<span style="mso-spacerun: yes;"> </span>In November, we started on a drug called
Keppra, which is meant to control the seizures that hospitalized her last
October.<span style="mso-spacerun: yes;"> </span>Apparently it works great as I
forgot to give Marcia her ½ pill evening dose the night before her
appointment.<span style="mso-spacerun: yes;"> </span>Monday morning she had
several of the myoclonic tics that plagued her over the last two years.<span style="mso-spacerun: yes;"> </span>These “tics” are not serious, but on this
morning, it made it very difficult for her to take her medication and I had not
seen them with this frequency or severity since the morning of her
seizures.<span style="mso-spacerun: yes;"> </span>Thankfully, about 20 minutes
after she took her pills, the “tics” stopped.<span style="mso-spacerun: yes;">
</span>Dr. Honig said it’s pretty clear the medication works.</div>
<br />
<div style="tab-stops: 175.5pt;">
<o:p> </o:p></div>
<br />
<div style="tab-stops: 175.5pt;">
Dr. Honig then did the normal physical examination,
including asking her several questions.<span style="mso-spacerun: yes;">
</span>He and I both think she generally knows what she wants to say and knows
the answer to his questions.<span style="mso-spacerun: yes;"> </span>She just
cannot articulate them.<span style="mso-spacerun: yes;"> </span>Marcia can’t
really say anything more than a one word answer and that word is more often
than not, unrecognizable.<span style="mso-spacerun: yes;"> </span>This was not a
surprise to me as I’ve seen the steady degradation in her communication
skills.<span style="mso-spacerun: yes;"> </span>However, he noticed two things that
were different, or had changed since our last visit.<span style="mso-spacerun: yes;"> </span>First, he noticed an asymmetry to her
walk.<span style="mso-spacerun: yes;"> </span>Marcia’s left arm and right arm
did not move with the same rhythm or motion and her walk was not as fluid as it
had been.<span style="mso-spacerun: yes;"> </span>He also noticed more stiffness
in her muscles.<span style="mso-spacerun: yes;"> </span>After looking at the lab
reports from her spinal tap in 2010 in conjunction with these physical changes,
Dr. Honig said he believes she has Lewy Body Dementia (LBD) in addition to
Alzheimer’s (and Primary Progressive Aphasia).</div>
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<o:p> </o:p></div>
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I’ve read up on LBD over the last week or so, and
frankly I’m not sure what to think.<span style="mso-spacerun: yes;">
</span>Everything about these neurological diseases are mostly hypotheses. We
will never know for sure what Marcia has until her brain can be examined under
a microscope.<span style="mso-spacerun: yes;"> </span>Not everyone has all the
symptoms used to describe these diseases and they can show up differently in
each person.<span style="mso-spacerun: yes;"> </span>I sort of feel it’s up to
me to draw my own conclusions.<span style="mso-spacerun: yes;"> </span>I joined
an Early Onset Facebook support group a few weeks ago (1500 members), and it’s
pretty clear, based on what others post and comment on, that I’m not the only
one who feels like we are making our own diagnoses or would like to know more
definitively what our spouses, parents, siblings are suffering from.<span style="mso-spacerun: yes;"> </span></div>
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<o:p> </o:p></div>
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LBD is hard to diagnose in the early stages as it
looks a lot like Alzheimer’s in that there progressive cognitive declines. But
LBD also has Parkinson’s-like symptoms related to motor skilss<a href="https://www.blogger.com/null" name="_GoBack"></a>,
like slowness of movement, difficulty walking and lists “runny nose” as a
common feature.<span style="mso-spacerun: yes;"> </span>Marcia does have these
physical challenges that aren’t easy to describe by AD alone, and we go through
a LOT of tissues.<span style="mso-spacerun: yes;"> </span>But hallucinations,
violent behavior and depression are often used to describe LBD, and Marcia doesn’t
have these symptoms.<span style="mso-spacerun: yes;"> </span>Like AD, LBD is
caused by a build-up of proteins in the brain, just a different protein leading
to a different spectrum of disorder.<span style="mso-spacerun: yes;"> </span>Dr.
Honig says people with AD can have LBD, and people with Parkinson’s are known
to have LBD too.<span style="mso-spacerun: yes;"> </span></div>
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<o:p> </o:p></div>
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So what does this mean?<span style="mso-spacerun: yes;"> </span>Like AD and PPA, there is no cure for Lewy
Body dementia and it’s progressive.<span style="mso-spacerun: yes;"> </span>There
are medications to help control LBD, but they have some potentially significant
side effects.<span style="mso-spacerun: yes;"> </span>My guess is that it just
means that language, cognition and now motor skills will all continue to
decline, and there’s nothing we can do to stop it.<span style="mso-spacerun: yes;"> </span></div>
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<o:p> </o:p></div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com0tag:blogger.com,1999:blog-6671933337680078119.post-83471276973972291172014-03-23T23:30:00.002-04:002014-03-23T23:30:37.316-04:00Branchburg Race Against Alzheimer's - May 18
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<span style="color: black; mso-fareast-font-family: "Times New Roman";">Last week Marcia and I went to a fundraiser for
Autism in the town where we live, Branchburg, NJ.<span style="mso-spacerun: yes;">
</span>This was the first time in several months Marcia and I have been out
socially outside of our kids sporting events.<span style="mso-spacerun: yes;">
</span>Marcia had a really nice time, and it was so nice to see her smile and
enjoy herself.<span style="mso-spacerun: yes;"> </span>We didn’t stay very late,
and Marcia was asleep minutes after we got home.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
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<span style="color: black; mso-fareast-font-family: "Times New Roman";"><span style="mso-tab-count: 1;"></span></span> </div>
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<span style="color: black; mso-fareast-font-family: "Times New Roman";">Longtime friends of ours, whose son Jack was
diagnosed with autism 8 years ago, have been more than just good friends to us.<span style="mso-spacerun: yes;"> </span>Frankly, they have been mentors and an inspiration
in how they’ve handled diversity and made fundraising to support autism their
mission.<span style="mso-spacerun: yes;"> </span>We’ve seen Jack grow and make
incredible strides in every way imaginable.<span style="mso-spacerun: yes;">
</span>Before dinner, Jack took the microphone and spoke to the group with such
confidence.<span style="mso-spacerun: yes;"> </span>He did a fantastic job.<span style="mso-spacerun: yes;"> </span>You could see the joy in the faces of
everyone who saw him speak.<span style="mso-spacerun: yes;"> </span>Jack’s
mother, Shannon, highlighted in her comments how far Jack has come, how amazing
his progress has been, and how proud they were of him.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
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<span style="color: black; mso-fareast-font-family: "Times New Roman";">As Shannon spoke, the differences between autism
and Alzheimer’s hit me pretty hard.<span style="mso-spacerun: yes;"> </span>The
numbers associated with both are staggering, and as Shannon said, “it takes a
village” to raise a child with autism.<span style="mso-spacerun: yes;"> </span>Shannon
told me three years ago after Marcia was diagnosed with AD, that while she
knows it’s not our nature to ask for help, she told me “you have to get over
that”.<span style="mso-spacerun: yes;"> </span>She couldn’t have been more
“right”.<span style="mso-spacerun: yes;"> </span>It’s taken a village to help
with Marcia too.<span style="mso-spacerun: yes;"> </span>Both Shannon and her
husband Bryan were very gracious in their comments last night regarding the
support they have received from family and the local community, and the importance
of that support to Jack’s growth and development.<span style="mso-spacerun: yes;"> </span>Jack’s family has worked so hard, raised a
LOT of money for at least two special needs schools, and have seen Jack
respond.<span style="mso-spacerun: yes;"> </span>I’ve seen Marcia go the other
direction.<span style="mso-spacerun: yes;"> </span>And I can’t do anything about
it.<o:p></o:p></span></div>
<br />
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<span style="color: black; mso-fareast-font-family: "Times New Roman";"><o:p> </o:p></span><span style="color: black; mso-fareast-font-family: "Times New Roman";">While there is little that can be done to help
Marcia, I hope we can prevent others from going through this in generations to
come.<span style="mso-spacerun: yes;"> </span>Last June was the first Branchburg
Race Against Alzheimer’s 5K Race and 1 Mile Fun Run/Walk. Branchburg and
surrounding communities were so supportive of the race, and Marcia was the
reason why.<span style="mso-spacerun: yes;"> </span>In addition to local
support, we saw over six hundred people participate.<span style="mso-spacerun: yes;"> </span>Donations came in from twenty-two states and
three countries, raising over $58,000 for Alzheimer’s Disease research!</span><span style="color: black; font-size: 14pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: black; mso-fareast-font-family: "Times New Roman";"> </span><b><span style="color: black; mso-fareast-font-family: "Times New Roman";">The second Branchburg Race Against Alzheimer’s
5K Race and 1 Mile Fun Run/Walk, will take place on Sunday, May 18, 2014.</span></b><span style="color: black; mso-fareast-font-family: "Times New Roman";"> Just like
last year, the event will take place at White Oak Park in Branchburg and will
include a 5K Race (3.1 miles) and a 1 Mile Fun Run/Walk to support Cure
Alzheimer’s Fund, an organization that uses 100% of the donations that it
receives to fund Alzheimer’s Disease Research. Recently, Cure Alzheimer’s
Fund was recognized for being on Charity Navigator’s Top 10 List of Highly
Rated Charities Relying on Private Contributions. </span><span style="color: black; font-size: 14pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<br />
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<span style="color: black; mso-fareast-font-family: "Times New Roman";"> </span><span style="color: black; font-size: 14pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<span style="color: black; mso-bidi-font-weight: bold; mso-fareast-font-family: "Times New Roman";">Branchburg Race
Against Alzheimer’s details:<o:p></o:p></span><br />
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<span style="color: black; mso-fareast-font-family: "Times New Roman";">Date: Sunday, May 18, 2014</span></div>
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<span style="color: black; mso-fareast-font-family: "Times New Roman";">Time: 9:00 am</span></div>
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<span style="color: black; mso-fareast-font-family: "Times New Roman";">Location: White Oak Park</span></div>
<div class="MsoNormal" style="background: white; margin: 0in 0in 0pt;">
<span style="color: black; mso-fareast-font-family: "Times New Roman";">Branchburg, New Jersey</span><span style="color: black; font-size: 14pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<br />
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<span style="color: black; mso-fareast-font-family: "Times New Roman";">Please visit the event website, </span><a href="http://www.branchburgraa.wix.com/bburgraceagainstalz"><span style="mso-fareast-font-family: "Times New Roman";"><span style="color: blue;">www.branchburgraa.wix.com/bburgraceagainstalz</span></span></a><span style="color: black; mso-fareast-font-family: "Times New Roman";">. Please
“like” and visit the event Facebook page: <b>Branchburg Race Against
Alzheimer’s</b>. Thanks for supporting this great cause! </span><span style="color: black; font-size: 14pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<br />
<div style="tab-stops: 175.5pt;">
The changes I’ve seen in Marcia over that last
year have been dramatic and heart breaking.<span style="mso-spacerun: yes;">
</span>Worrying about my kids keeps me up at night, and this disease has
affected my work where my future is certainly not what I had hoped it would be
at this stage of my career.<span style="mso-spacerun: yes;"> </span>But this fundraising
event was a real highlight of the year last June and I’m hoping for another
great turnout.<span style="mso-spacerun: yes;"> </span>Our hope is to raise more
money for Alzheimer’s research, and raise awareness for this disease that is a
crisis in the United States.<span style="mso-spacerun: yes;"> </span>We would
love to see a great turnout for race day.<span style="mso-spacerun: yes;">
</span>If you cannot come in person, please consider a donation to help find a
cause!<a href="https://www.blogger.com/null" name="_GoBack"></a></div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com0tag:blogger.com,1999:blog-6671933337680078119.post-79402933391070226092014-03-09T23:21:00.001-04:002014-03-09T23:21:11.338-04:00This was a really good week or so! And it wasn’t….
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Almost every day I wake up in a good mood.<span style="mso-spacerun: yes;"> </span>And nearly every day, at some point, I talk
myself off the ledge, figuratively speaking.<span style="mso-spacerun: yes;">
</span>For someone who is perceived as an even keeled person who doesn’t wear
his emotions on his sleeve, this may come as a surprise to many.<span style="mso-spacerun: yes;"> </span>But the last week or so really did exemplify
the range of emotions and the highs and lows that have become more commonplace.</div>
<br />
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Years ago, when my focus was on shared parenting,
work and reasonable other interests, I had confidence that I was doing these
things reasonably well.<span style="mso-spacerun: yes;"> </span>Over the last
three years, I’ve added all the things Marcia used to do with excellence, as
well as caregiving to my routine and I’ve not managed the added responsibilities,
nor my old ones, as well as I feel I should.<span style="mso-spacerun: yes;">
</span>And if I spent more time dwelling on this, I’m sure I’d spend more time
“down” or depressed.<span style="mso-spacerun: yes;"> </span>One slip up in any
of these areas might have ruined my day prior to Marcia’s illness.<span style="mso-spacerun: yes;"> </span>Today, it might not even be the hardest thing
I have to deal with on a given day.<span style="mso-spacerun: yes;"> </span>One
day last week I got some news that was hard to hear.<span style="mso-spacerun: yes;"> </span>But on this particular morning I got a later
start because Marcia had a harder time than normal getting dressed and needed
my help.<span style="mso-spacerun: yes;"> </span>While my “news” could have made
me feel sorry for myself, I just didn’t.<span style="mso-spacerun: yes;">
</span>I’ve seen others feel victimized in similar situations.<span style="mso-spacerun: yes;"> </span>Why doesn’t the sting of any particular
situation last?<span style="mso-spacerun: yes;"> </span>I think of the
challenges Marcia faces every day. And on this day she couldn’t tie her own
shoes.</div>
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<o:p> </o:p></div>
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This last two weeks were transition weeks in the
sports world for our kids.<span style="mso-spacerun: yes;"> </span>Despite the
snow on the ground and the cold temperatures, our winter sports have ended and
the spring schedule is about to start.<span style="mso-spacerun: yes;"> </span>Riley,
a senior in high school, had her last two fencing meets.<span style="mso-spacerun: yes;"> </span>I had never seen fencing in person before
Riley got involved and I’ve really loved watching her do something she was
really passionate about.<span style="mso-spacerun: yes;"> </span>If you’ve ever played
a sport in high school or college, you know the emotions that surround your
“last game”.<span style="mso-spacerun: yes;"> </span>I think I felt it more than
Riley did.<span style="mso-spacerun: yes;"> </span>Ryan also finished his
basketball season, losing in the finals of his in-town league.<span style="mso-spacerun: yes;"> </span>Watching Ryan play this winter was a real joy
as he played sort of a hybrid point guard/shooting guard (and he wasn’t shy
about shooting!).<span style="mso-spacerun: yes;"> </span>My lasting memory of
his final game was him hitting a 3 pointer at the buzzer (if it had been an 8
pointer, they would have won the game).<span style="mso-spacerun: yes;">
</span>After the game, he said that might have been his last organized
basketball game.<span style="mso-spacerun: yes;"> </span>Both of these “lasts”
are a sign that both are growing up.<span style="mso-spacerun: yes;"> </span>Too
fast.<span style="mso-spacerun: yes;"> </span>But they are supposed to start
lacrosse this week, and Ryan’s spring soccer season is supposed to start this
week too.<span style="mso-spacerun: yes;"> </span>If only the snow would melt
and temperatures would stay above freezing, we can get outside again.</div>
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<span style="mso-spacerun: yes;"> </span></div>
<br />
<div style="tab-stops: 175.5pt;">
There was more to these last few weeks.<span style="mso-spacerun: yes;"> </span>One of the things I wrote about in my last
blog was about “red tape” associated with insurance and disability claims.<span style="mso-spacerun: yes;"> </span>Almost five months after first making a claim
for Long Term Disability insurance, our claim was finally approved this
week.<span style="mso-spacerun: yes;"> </span>If anyone saw Seth Rogen testify
before congress this week, he captured the financial issues of Alzheimer’s well
(if only most senators had stayed to hear his perspective).<span style="mso-spacerun: yes;"> </span>Marcia’s Day Center expenses will now be
covered, as will the companion that we hope to get started soon. We had also
applied for Social Security Disability benefits in January.<span style="mso-spacerun: yes;"> </span>Early Onset AD typically gets a fast track
for approval, and I have to give the SSA credit, or at least the person
assigned to our claim.<span style="mso-spacerun: yes;"> </span>They (and she) were
fantastic to work with, proactive and assertive to move our application
forward.<span style="mso-spacerun: yes;"> </span>Both the SSA and I were not
able to get our doctor to fill out the medical information so we had to have an
independent examination last weekend.<span style="mso-spacerun: yes;"> </span>I
don’t remember the doctor’s name we met with, but it took about 5 minutes for
her to get what she needed (and I assume she will recommend our claim be
approved).<span style="mso-spacerun: yes;"> </span>Marcia could answer almost
none of her questions.<span style="mso-spacerun: yes;"> </span>She didn’t know
the day of the month or even the year, and she couldn’t spell her name.<span style="mso-spacerun: yes;"> </span>Marcia was asked how many presidents of the
US she could remember.<span style="mso-spacerun: yes;"> </span>She could
remember two:<span style="mso-spacerun: yes;"> </span>“Barack and Carter”.<span style="mso-spacerun: yes;"> </span>There were many more questions on the forms
the doctor was supposed to ask, but after Marcia couldn’t spell her name, she
apologized for making Marcia cry and said she had what she needed.</div>
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<o:p> </o:p></div>
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I’ll end this entry with a few really awesome events.<span style="mso-spacerun: yes;"> </span>One of Ryan’s teachers (Amy F.) emailed me a
week or so ago about getting kids from his middle school to support the May
“Branchburg Race Against Alzheimer’s”, the second race in Marcia’s honor (I’ll
blog separately about that).<span style="mso-spacerun: yes;"> </span>Amy had
asked Ryan if that would be okay with him, and after a day or so, he said yes.<span style="mso-spacerun: yes;"> </span>She put a committee together to plan t-shirt
designs and rally the school to support the race.<span style="mso-spacerun: yes;"> </span>Ryan spoke to the committee about Alzheimer’s,
which is very out of character for him to speak to a group about anything, and
it was hard for him.<span style="mso-spacerun: yes;"> </span>But I was told the
kids were very supportive to him and are very excited to help publicize our
upcoming race.<span style="mso-spacerun: yes;"> </span>Last week, Ryan’s teacher
invited me to the 8<sup>th</sup> grade assembly later this month, where Ryan
will talk to the whole class about the race and Alzheimer’s disease.<span style="mso-spacerun: yes;"> </span>I can’t tell you how proud I am of Ryan.<span style="mso-spacerun: yes;"> </span>I know this is not easy for him.<span style="mso-spacerun: yes;"> </span>And I’m very grateful to Amy for the impact
she’s having in Ryan’s life and how she’s really bringing out the best in
him.<span style="mso-spacerun: yes;"> </span>(Plug for teachers here!<span style="mso-spacerun: yes;"> </span>Riley has also had several teachers help her
through this, as well as the college application process!)</div>
<br />
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<o:p> </o:p></div>
<br />
<div style="tab-stops: 175.5pt;">
And as the week ended, Judy Napoli, who is
organizing the Branchburg Race Against Alzheimer’s, told me that CMG, last year’s
primary sponsor had committed to be the primary sponsor again this year.<span style="mso-spacerun: yes;"> </span>We also found out the CMG and family members
of CMG are running two satellite races in Houston and Orlando!!!!<span style="mso-spacerun: yes;"> </span>CMG is a company I’ve known well for many
years and just love everyone I’ve met there.<span style="mso-spacerun: yes;">
</span>Their president, Stew Bishop has been a boss, I’ve been a client, but
more than that, he’s been a friend and has <a href="https://www.blogger.com/null" name="_GoBack">supported us in
our fight from the first day in so many ways.</a></div>
<span style="mso-bookmark: _GoBack;"></span>
<br />
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<o:p> </o:p></div>
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And finally, Riley was accepted into the physics
program at Drexel University this week, with a fantastic merit based
scholarship.<span style="mso-spacerun: yes;"> </span>I took her to Drexel today
for “accepted students day” and both of us came away thinking we may have found
the right place for her.<span style="mso-spacerun: yes;"> </span>She has applied
to 9 schools and heard back from two, accepted by both.<span style="mso-spacerun: yes;"> </span>Riley’s entire high school career has been in
the shadow of Marcia’s diagnosis and progression.<span style="mso-spacerun: yes;"> </span>What she’s done, all that she’s accomplished…..<span style="mso-spacerun: yes;"> </span>Wow!<span style="mso-spacerun: yes;"> </span>Over
the next four weeks we should hear from the other 7 schools, but Riley is very
excited about what she’s seeing and reading about Drexel.<span style="mso-spacerun: yes;"> </span>And this one is relatively close to home…..</div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com0tag:blogger.com,1999:blog-6671933337680078119.post-48062085927086269232014-02-06T22:49:00.000-05:002014-02-06T22:49:24.844-05:00Day Center (acceptance), Seizures (under control) and "red tape"I received a Christmas card in the mail recently (Feb 1<sup><span style="font-size: x-small;">st</span></sup>), which inspired me to finish this post I started in December. Since Marcia’s seizures in October, my “to do” list has lengthened, and at teams seems unmanageable, and blogging can always wait another day. <br />
<br />
I’ve previously written about our “plan” to start Marcia at the Day Center a few days a week and increase the number of days gradually. In time, the plan was to supplement Day Center days with in-home health care. With the seizures in October, our timetable has moved forward faster than I had planned. We have been adjusting Marcia’s medication since her release from the hospital in October. While the seizures seem to be under control, her cognitive functioning has not really returned to pre-seizure levels. Speech, which has deteriorated over time, is predictably poor. But she has more trouble getting dressed and needs assistance on a daily basis, mostly with her shoes. While incompetent still, I’m getting better at helping her put on eye liner and “doing her hair”. I’ve recently learned these are “left brain” activities. Memory is still less of an issue.<br />
<br />
Since the last posting, Marcia has become more comfortable with the Day Center. This has been a huge blessing. I’m sure there are several factors that have come into play, but I give the Day Center credit for working really hard to find the connection appropriate for Marcia. We also adjusted her pick up time slightly, bringing her home a little earlier. Time and familiarity with the routine, staff and other “guests” has made her feel more comfortable. No longer is getting her ready to go a challenge. Through the Lotsa Helping Hands website, we have frequent visitors to ensure Marcia isn’t home alone very often.<br />
<br />
Holidays and paperwork have also been a big headline of the last 8 weeks or so. Claims for long term care insurance, which started in October, continue. Our insurance company is thorough, which is a little frustrating. It seems like every week there’s a new request for more information. I started this process more than 3 months ago. Social Security disability paperwork has been filed and I hope for a quick resolution so we can make sure Marcia has the care she needs. I have also found an agency and a “companion” for Marcia that we hope to start soon, after Social Security and insurance is able to help out.<br />
<br />
This year the holidays brought more fatigue than happiness. While I enjoyed time off work, I found the materialistic part of the holidays a chore. It’s been 3 years now since Marcia’s diagnosis and Marcia doesn’t drive, shop or do Christmas Cards. I took on those tasks this year and was just happy to get them over with. <br />
<br />
This holiday saw more sadness than normal. Throughout Marcia’s illness, I’ve been amazed how strong she’s been, and she’s not shown self-pity or depression. But one day I found her crying and I don’t really know why. She wanted to tell me, but all she could say was “kids”. I’m sure she’s aware that she can’t be the mom she was, or wants to be. Going back three years ago when we got her Alzheimer’s diagnosis, her first reaction was around our kids, and knowing this diagnosis was going to change everything. I can only assume not being the supermom she was is heartbreaking for her.<br />
<br />
I also saw tears and sadness from my daughter while in Maine, where Marcia’s parents live. Marcia hasn’t seen her parents since July and the kids haven’t seen them for about a year and a half, so this was a long overdue visit. Whereas Marcia’s parents once lived in a two story home on a gorgeous like, they downsized into a two bedroom condo up the coast of Maine in Rockland and this was our first visit since their move. While the move was very appropriate for them, their new place made for tight quarters. At home, the kids’ have their rooms, the basement, friends and activities to keep them busy (and distracted). In Maine, I think they got to see more of Marcia’s illness than they normally see. Our last night in Maine, my daughter was in one of the bedrooms curled up in a ball on the floor crying saying she can’t take this anymore. I think the constant exposure to Marcia was a bit much for her.<br />
<br />
I’ll end this post on a positive note. Riley has finished her college applications, and I have completed her financial aid forms (more @#$% paperwork…..). Riley has heard from one college so far, with an acceptance to Penn State. Only 8 more to go!Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com1tag:blogger.com,1999:blog-6671933337680078119.post-79812583571528360522013-11-30T22:58:00.001-05:002013-11-30T22:58:41.861-05:00Day Care, Seizures and what do we do now?
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<div style="tab-stops: 175.5pt;">
<span style="color: red;"><span style="color: black;">A few months ago I gave
some advice to anyone experiencing Alzheimer’s as a caregiver.<span style="mso-spacerun: yes;"> </span>That being “prepare for the next steps in the
disease…..”<span style="mso-spacerun: yes;"> </span>As I write today, I can tell
you I might have been preparing for the next step, but that wasn’t good
enough.<span style="mso-spacerun: yes;"> </span>I should have been looking two or
more steps ahead.<span style="mso-spacerun: yes;"> </span>At the beginning of
October, Marcia went to the Adult Day Care of Somerset County for the first
time.<span style="mso-spacerun: yes;"> </span>“The Plan” was to have her go two
days a week to get used to going, and keep her Wednesday through Friday schedule
pretty much the same as it had been.<span style="mso-spacerun: yes;">
</span>Over time, we could gradually increase the number of days at the Day
Center, and slowly add in home health care.<span style="mso-spacerun: yes;">
</span>I felt this was a logical and thoughtful plan.<span style="mso-spacerun: yes;"> </span>Until…..<o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 138.0pt;">
<span style="color: red;"><span style="color: black;"><span style="mso-tab-count: 1;"> </span><o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 175.5pt;">
<span style="color: red;"><span style="color: black;">On October 22, Marcia had
a huge seizure, just a few minutes after my alarm went off.<span style="mso-spacerun: yes;"> </span>A week earlier, she ran out of Klonopin, the
drug she’s been taking to help manage the myoclonus tics she has been having
for quite some time.<span style="mso-spacerun: yes;"> </span>As I learned the
hard way, refilling a prescription for a controlled substance was not as easy
as refilling any other drug.<span style="mso-spacerun: yes;"> </span>The net of
it is that Marcia was off Klonopin for about a week while waiting to get the Rx
refilled and her myoclonus tics got more frequent and more severe, causing her
to fall, spill food and/or drink and startle people around her who had not been
familiar with this part of her experience with Alzheimer’s.<o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 175.5pt;">
<span style="color: red;"><o:p><span style="color: black;"> </span></o:p></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 175.5pt;">
<span style="color: red;"><span style="color: black;">Even before my alarm went
off that morning, I could feel and see almost continual tics (sort of like mini
seizures).<span style="mso-spacerun: yes;"> </span>As I got out of bed, I turned
on the light in our bathroom and could see Marcia’s eyes were open.<span style="mso-spacerun: yes;"> </span>She got out of bed to go to the bathroom and
I walked with her because these tics were non-stop, one right after
another.<span style="mso-spacerun: yes;"> </span>Once in the bathroom she had a
full seizure.<span style="mso-spacerun: yes;"> </span>I was holding her when the
seizure occurred and set her down on the bathroom floor and she lost
consciousness.<span style="mso-spacerun: yes;"> </span>Call to 911 and a trip to
the ER followed.<span style="mso-spacerun: yes;"> </span>While in the ER, she
had another bigger and longer seizure.<span style="mso-spacerun: yes;">
</span>So thankful to have been in the ER for this one.<span style="mso-spacerun: yes;"> </span>Three nights in the hospital, CT scans, an
MRI and significant doses of drugs to address the seizures and see if there was
a specific cause (stroke, hemorrhage, etc…).<span style="mso-spacerun: yes;">
</span>While there were no signs of anything that would cause a seizure, all of
these pictures of the brain did show what one might see in an Alzheimer’s
patient (atrophy, more area of fluid than a normal brain, etc..).<span style="mso-spacerun: yes;"> </span>We could only assume that Marcia might just
be susceptible to seizures and the medication she was on was effective in
preventing </span><a href="http://www.blogger.com/null" name="_GoBack"></a><span style="color: black;">them as long as she was taking it.<span style="mso-spacerun: yes;"> </span>If I hadn’t run out….<o:p></o:p></span></span></div>
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<span style="color: red;"><o:p><span style="color: black;"> </span></o:p></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 175.5pt;">
<span style="color: red;"><span style="color: black;">It’s been more than a
month since Marcia was released from the hospital.<span style="mso-spacerun: yes;"> </span>It took about 10 days before she was cleared
to return to the Day Center.<span style="mso-spacerun: yes;"> </span>The
hospital wouldn’t clear her because her balance was not very good.<span style="mso-spacerun: yes;"> </span>Heavy doses of medication and very little activity
were the cause of this.<span style="mso-spacerun: yes;"> </span>Her balance did
return to normal pretty quickly after leaving the hospital.<span style="mso-spacerun: yes;"> </span>But that’s about all that has returned.<span style="mso-spacerun: yes;"> </span>The doctors felt it would take as much as a
week for the hospital medication to clear her system, but there was no
guarantee she would return to her pre-seizure self. Her speech is little more
than one word at a time, she looks fatigued almost all the time, she sleeps
more and just has a harder time doing things she used to do prior to the
seizures.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 175.5pt;">
<span style="color: red;"><o:p><span style="color: black;"> </span></o:p></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 175.5pt;">
<span style="color: red;"><span style="color: black;">Last week, Marcia and I
went to NYC to see her neurologist for the first time since her hospitalization.<span style="mso-spacerun: yes;"> </span>The medication administered in the hospital should
have cleared her system, and should not be the reason she has not yet fully
recovered.<span style="mso-spacerun: yes;"> </span>Dr. Honig adjusted her
medication by reducing the seizure drug by half.<span style="mso-spacerun: yes;"> </span>We’ll see if her cognitive abilities improve
and if the myoclonus tics come back (there have been none since the
seizure).<span style="mso-spacerun: yes;"> </span>We are hoping more energy,
better speaking ability and more independence, but may have to balance a higher
risk for seizure with improved cognitivity.<span style="mso-spacerun: yes;">
</span>Dr. Honig also thinks Marcia should not be alone, and this is the part
where “the plan” needs to be tweaked.<span style="mso-spacerun: yes;">
</span>He’s not that concerned about seizures returning at this point, but more
concerned if we were to have a fire or other home emergency where she would
need to make a phone call or make quick decisions.<o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 175.5pt;">
<span style="color: red;"><o:p><span style="color: black;"> </span></o:p></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 175.5pt;">
<span style="color: red;"><span style="color: black;">The problem is that Marcia
doesn’t like going to the Day Center.<span style="mso-spacerun: yes;">
</span>She seems to do fine while she’s there, but she resists going every
morning she’s scheduled to go.<span style="mso-spacerun: yes;"> </span>Having my
parents and sister-in-law with us has helped keep her under some trusted
supervision, but we are back on our own now.<span style="mso-spacerun: yes;">
</span>I’ve worked at home a few times, and the Thanksgiving holiday has come
at a good time. <span style="mso-spacerun: yes;"> </span>I’ll be using vacation
time and possibly take FMLA leave (family leave) until we can get her set up
with some home health support to supplement days in the day center.<span style="mso-spacerun: yes;"> </span>I may put requests on the Helping Hands
website for people to come and spend small chunks of time with Marcia.<span style="mso-spacerun: yes;"> </span>For the foreseeable future, I expect we might
have Marcia properly supervised, but not very happy.<span style="mso-spacerun: yes;"> </span>And I’m not doing a very good job pushing the
right things if I’m continually making decisions that make her upset.<span style="mso-spacerun: yes;"> </span>She hasn’t been happy when spending time in
the house, and she doesn’t like going to the day center.<span style="mso-spacerun: yes;"> </span>And there really aren’t many other
options.<span style="mso-spacerun: yes;"> </span>I’m praying she’ll adjust to
both in time and make the most of her situation.<o:p></o:p></span></span></div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com0tag:blogger.com,1999:blog-6671933337680078119.post-56665424410304162882013-10-06T22:35:00.000-04:002013-10-06T22:35:00.686-04:00Mourning the Living
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<div style="tab-stops: 175.5pt;">
<span style="color: red;"><span style="color: black;">The college search my
daughter Riley is going through is stressful, but one great part of the search
is the 10-12 hours I spent in the car with Riley a few weeks ago when <span style="mso-spacerun: yes;"> </span>we drove from New Jersey to Boston, stayed the
night just outside the city, toured Boston College and Brandeis University and drove
back to New Jersey.<span style="mso-spacerun: yes;"> </span>We listened to 10
hours of her music (and I recognized three songs), talked about school,
college, friends and many other things.<span style="mso-spacerun: yes;">
</span>Among the many things we talked about was Marcia.<span style="mso-spacerun: yes;"> </span>A year ago, any kind of discussion about
Marcia with Riley was unthinkable.<span style="mso-spacerun: yes;"> </span>She
would get very emotional any time I would bring up anything about Marcia’s
illness.<span style="mso-spacerun: yes;"> </span>It took me almost a year to be able
to talk about Marcia with anyone without struggling with my own emotions.<span style="mso-spacerun: yes;"> </span>Since we didn’t share a lot with the kids
until we had a diagnosis, I started the “mourning process” about a year or so
before Riley did.<span style="mso-spacerun: yes;"> </span>I really understood
why she had such a hard time talking to anyone about our situation, because it
was hard for me too.<span style="mso-spacerun: yes;"> </span>With Alzheimer’s, it
seems the diagnosis is where the mourning process starts, at least for us
anyway.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 126.75pt;">
<span style="color: red;"><span style="color: black;">Three things Riley shared
with me:<o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="margin-left: 0.5in; mso-list: l0 level1 lfo1; tab-stops: 126.75pt; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="color: black;"><span style="color: red;"><span style="mso-list: Ignore;">1)<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="color: red;">Remembering Marcia
before Alzheimer’s is increasingly more difficult<o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="margin-left: 0.5in; mso-list: l0 level1 lfo1; tab-stops: 126.75pt; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="color: black;"><span style="color: red;"><span style="mso-list: Ignore;">2)<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="color: red;">She once prayed Marcia
would be around for her 18<sup>th</sup> birthday.<span style="mso-spacerun: yes;"> </span>She has accepted that Marcia won’t be in her
life like the mothers of her friends will, and she doesn’t want to see her go
through a long progression of the disease<o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="margin-left: 0.5in; mso-list: l0 level1 lfo1; tab-stops: 126.75pt; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="color: black;"><span style="color: red;"><span style="mso-list: Ignore;">3)<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="color: red;">She wants to get tested
to see if she has a genetic possibility of getting AD.<span style="mso-spacerun: yes;"> </span>If she has the gene, she isn’t sure she would
want to have kids.<span style="mso-tab-count: 1;"> </span><o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 175.5pt;">
<span style="color: red;"><span style="color: black;">Riley and Marcia have
always been especially close, which isn’t unique for many mother/daughter relationships.<span style="mso-spacerun: yes;"> </span>As a child, Riley was so attached to
Marcia.<span style="mso-spacerun: yes;"> </span>I was such a distant second
priority. As an example, every year Marcia and I would go away for a long
weekend and my parents would come in and stay with the kids.<span style="mso-spacerun: yes;"> </span>Riley would cry the ENTIRE time she was
awake.<span style="mso-spacerun: yes;"> </span>So one year we started preparing
her weeks before we were to go away and Riley said she would try to be
strong.<span style="mso-spacerun: yes;"> </span>Well the night before we were to
leave, Riley started to get a little upset so I went to her room to talk to
her.<span style="mso-spacerun: yes;"> </span>I told her that I go away for work
all the time and I always come back.<span style="mso-spacerun: yes;">
</span>Riley replied “I want YOU to go.<span style="mso-spacerun: yes;">
</span>I don’t want <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u>mom</u></i></b> to go”.<span style="mso-spacerun: yes;"> </span>There
have been other humbling moments for me over the years and I accepted my role
as second favorite parent!<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>They did so much together and talked about
everything.<span style="mso-spacerun: yes;"> </span>One could just tell that
this was going to be a close relationship for a lifetime.<o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
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<span style="color: red;"><span style="color: black;"><span style="mso-tab-count: 1;"> </span><o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 175.5pt;">
<span style="color: red;"><span style="color: black;">Riley had just turned 15
when Marcia was diagnosed, and was about 13 when we first noticed changes in
Marcia.<span style="mso-spacerun: yes;"> </span>As close as they had been, those
days are harder to recall.<span style="mso-spacerun: yes;"> </span>I have often
wondered if Ryan would remember much about Marcia before she showed symptoms of
AD since he was only 8 when this whole thing began.<span style="mso-spacerun: yes;"> </span>I just never thought Riley would have that
difficulty.<span style="mso-spacerun: yes;"> </span>But the truth is, I’ve been
married to Marcia for 20 years and have known her for another 3 years before we
married.<span style="mso-spacerun: yes;"> </span>But her condition, which
continues to progress, seems normal now.<span style="mso-spacerun: yes;">
</span>It’s not that I don’t remember the healthy, vibrant Marcia.<span style="mso-spacerun: yes;"> </span>It’s just that I’ve adjusted to today’s
reality.<span style="mso-spacerun: yes;"> </span>Her voice is still on the
answering machine, and it amazes me to hear her speak so clearly and in
complete sentences and with such spunk, something she just can’t do anymore.<span style="mso-spacerun: yes;"> </span>But for Marcia’s kids to be losing what I
believe are such treasured memories highlights one more thing I need to do a
better job of doing.<span style="mso-spacerun: yes;"> </span>I need to find time
and a way to bring those memories back and keep them alive.<o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 130.5pt;">
<span style="color: red;"><span style="color: black;"><span style="mso-tab-count: 1;"> </span><o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 175.5pt;">
<span style="color: red;"><span style="color: black;">When Marcia first told the
kids she had Alzheimer’s, Riley told me that after researching the disease on
her own, she was just hoping Marcia would be around for her 18<sup>th</sup>
birthday.<span style="mso-spacerun: yes;"> </span>Well, Riley will be 18 in
November and Marcia will be here for that.<span style="mso-spacerun: yes;">
</span>Riley knows Marcia will miss many milestones, and she’s accepted that
and is as prepared as one could be to lose a parent.<span style="mso-spacerun: yes;"> </span>Another very good friend of Marcia’s recently
told me she feels like she’s mourning the loss of Marcia again because when
they are together, Marcia really can’t talk.<span style="mso-spacerun: yes;">
</span>I know in my case, and I believe in Riley’s and our friend’s case, the
sadness one might experience upon a death of someone you love is when the loss
occurs.<span style="mso-spacerun: yes;"> </span>We have grieved the loss of the
Marcia we knew a few years ago and it’s so hard to see someone you love
deteriorate to where even simple tasks are hard, and we know things will only
get harder.<span style="mso-spacerun: yes;"> </span>There is still a lot about
Marcia to love.<span style="mso-spacerun: yes;"> </span>She is so sweet
still.<span style="mso-spacerun: yes;"> </span>She tries so hard to do
everything she does.<span style="mso-spacerun: yes;"> </span>And I admire her
fight and courage, and I just hope Riley and Ryan will recognize these things
too as they get older.<span style="mso-spacerun: yes;"> </span>Marcia has been
an amazing role model every day she’s with us.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 78.75pt;">
<span style="color: red;"><span style="color: black;"><span style="mso-tab-count: 1;"> </span><o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 175.5pt;">
<span style="color: red;"><span style="color: black;">Riley wanting to get
tested is something I’m sure many family members struggle with.<span style="mso-spacerun: yes;"> </span>That she would research Alzheimer’s and would
give thought to the long term implications for her is not surprising.<span style="mso-spacerun: yes;"> </span>Riley doesn’t want to put her kids through
what she’s going through, and I believe she wouldn’t want to pass along a gene
that might subject her kids to getting the disease.<span style="mso-spacerun: yes;"> </span>This is STILL the reason I have a passion for
fund raising to find a cure for Alzheimer’s.<span style="mso-spacerun: yes;">
</span>The impact to my kids and their generation is the reason I want to make
sure a cure is found in their lifetime.<span style="mso-spacerun: yes;">
</span>I’m not sure about the testing idea, and plan to ask our neurologist at
our next visit in January.<o:p></o:p></span></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 175.5pt;">
<span style="color: red;"><o:p><span style="color: black;"> </span></o:p></span></div>
<span style="color: black;">
</span><br />
<div style="tab-stops: 175.5pt;">
<span style="color: red;"><span style="color: black;">I think we have learned to
live with the reality that Marcia’s illness continues to progress and there’s
nothing we can do to stop it.<span style="mso-spacerun: yes;"> </span>If you are
reading this because you have a loved one that is recently diagnosed, this blog
doesn’t say anything you won’t read on your own from any other source.<span style="mso-spacerun: yes;"> </span>Enjoy every moment you can, one day at a
time.<span style="mso-spacerun: yes;"> </span>Three years after Marcia’s
diagnosis, there is still a lot to love about her.<span style="mso-spacerun: yes;"> </span>It’s just that the woman I married is not
able </span><a href="http://www.blogger.com/null" name="_GoBack"></a><span style="color: black;">to do the things she used to do, as hard as she
might try.<span style="mso-spacerun: yes;"> </span>I think the whole process of
getting a diagnosis, which took close to 2 years, and the stunning diagnosis
for someone so young, puts us in a funk usually accompanied by death, even
though there is many years of life left.<span style="mso-spacerun: yes;">
</span>I can’t speak intelligently about the mourning process other situations
bring.<span style="mso-spacerun: yes;"> </span>But I do know that I went through
a mourning process with Marcia already.<span style="mso-spacerun: yes;">
</span>I was devastated, distracted, sad, and emotional.<span style="mso-spacerun: yes;"> </span>I needed space, and I needed to talk about
this.<span style="mso-spacerun: yes;"> </span>I remember writing that someday I
would be a single father.<span style="mso-spacerun: yes;"> </span>And I have
been there for quite some time now.<span style="mso-spacerun: yes;"> </span>I’m
just taking care of Marcia too.<o:p></o:p></span></span></div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com0tag:blogger.com,1999:blog-6671933337680078119.post-38993204061300725332013-09-25T22:46:00.000-04:002013-09-25T22:46:26.850-04:00Medical roll call
<br />
<div style="tab-stops: 175.5pt;">
The last two weeks have been unusually busy,
medically speaking, touching cancer, Alzheimer’s and Arthritis.<span style="mso-spacerun: yes;"> </span>Marcia started with her six month oncology
checkup, three days later we had our quarterly visit to NYC to meet with her
neurologist, and the following week, we met with her orthopedic doctor.<span style="mso-spacerun: yes;"> </span>Marcia’s cancer story is a happy one.<span style="mso-spacerun: yes;"> </span>She’s 2 ½ years cancer-free and every visit
we’ve had since her lumpectomy has been a positive one.<span style="mso-spacerun: yes;"> </span>I haven’t written about the need for an orthopedic
doctor before now.<span style="mso-spacerun: yes;"> </span>This is where
perspective is evident.<span style="mso-spacerun: yes;"> </span>Marcia has
Alzheimer’s, breast cancer, spinal stenosis and arthritis in her hips.<span style="mso-spacerun: yes;"> </span>Anything that’s treatable doesn’t make the
radar screen these days.<span style="mso-spacerun: yes;"> </span>Marcia has been
going to physical therapy since May and while not totally pain free, she has
less discomfort than she did earlier in the year.<span style="mso-spacerun: yes;"> </span>Her doctor believes we’ve given PT a fair
shot.<span style="mso-spacerun: yes;"> </span>This morning Marcia had a minor surgical
procedure (steroid injection) that will hopefully alleviate her back pain for a
long time.</div>
<br />
<div style="tab-stops: 175.5pt;">
<o:p> </o:p></div>
<br />
<div style="tab-stops: 175.5pt;">
If you’re keeping score, she’s beating cancer and
arthritis.<span style="mso-spacerun: yes;"> </span>Marcia is a fighter and has
overcome one devastating or depressing diagnosis after another.<span style="mso-spacerun: yes;"> </span>I wish I could say the same for
Alzheimer’s.<span style="mso-spacerun: yes;"> </span>To my knowledge,
Alzheimer’s is undefeated.<span style="mso-spacerun: yes;"> </span>Everyone dies
with it, or from it.<span style="mso-spacerun: yes;"> </span>Our meeting with
her neurologist in New York City was both a good and sad day.<span style="mso-spacerun: yes;"> </span>It was a good day because I watched her give
her best effort to eat and get dressed with intense concentration. While that
may not sound like much, I’m overwhelmed with pride when I watch her keep
trying to do things that are increasingly harder to do.<span style="mso-spacerun: yes;"> </span>It was a good day because I saw her laugh and
smile when we were meeting with Dr. Honig.<span style="mso-spacerun: yes;">
</span>By the way, Columbia University is a teaching hospital, so we rarely
meet with Dr Honig alone.<span style="mso-spacerun: yes;"> </span>Usually he has
an intern or a student with him.<span style="mso-spacerun: yes;"> </span>This
time we were joined by an intern, a fellow and another doctor.<span style="mso-spacerun: yes;"> </span>I didn’t mind, and Marcia didn’t appear to
mind either.<span style="mso-spacerun: yes;"> </span>And she tried so hard to do
all the tests she was put through and didn’t seem to mind the crowd observing
her.<span style="mso-spacerun: yes;"> </span>And it was a good day because
Marcia agreed with Dr Honig that she would give Adult Day Centers a try. ……</div>
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But it was a sad day.<span style="mso-spacerun: yes;"> </span>Several times during our 45 minute
appointment I felt an overwhelming emotional response to the tests he put her
through.<span style="mso-spacerun: yes;"> </span>None of the questions he asked her
or things he asked her to do are new.<span style="mso-spacerun: yes;"> </span>He
asks the same questions every time and puts her through pretty much the same
drills every time we see him.<span style="mso-spacerun: yes;"> </span>And it’s
heartbreaking because you don’t have to be a neurologist to see how things are
progressively worse.<span style="mso-spacerun: yes;"> </span>She can’t repeat
“no ifs, ands or buts”.<span style="mso-spacerun: yes;"> </span>She didn’t know
what day of the week it was, though it may have been more that she just
couldn’t say “Thursday”.<span style="mso-spacerun: yes;"> </span>She kept
putting her finger on the desk and was trying to do a Monday, Tuesday,
Wednesday like cadence instead of using words, or so I thought.<span style="mso-spacerun: yes;"> </span>Dr Honig asked if she wanted to write it on
paper.<span style="mso-spacerun: yes;"> </span>She tried, but didn’t really know
what to write.<span style="mso-spacerun: yes;"> </span>Then he asked her what
year it was.<span style="mso-spacerun: yes;"> </span>In past blog entries I’ve
written that Marcia has known what year it is, but she would say “two-oh-one-three”,
with more than just a passing effort, as opposed to” two thousand thirteen”.<span style="mso-spacerun: yes;"> </span>This time she wrote “Monday” on the
paper.<span style="mso-spacerun: yes;"> </span>Finally, he asked her to take
“this piece of paper in your right hand, fold it and give it to your husband”. <span style="mso-spacerun: yes;"> </span>She took it in her left hand and gave it to me
without folding it.<span style="mso-spacerun: yes;"> </span>While watching all
of these tests make me want to cry, Marcia reacted to each request with only a
little frustration about not being able to verbalize her answers.<span style="mso-spacerun: yes;"> </span>She used to hate these tests and would get
upset because they made her feel “stupid”.<span style="mso-spacerun: yes;">
</span>She really doesn’t appear to feel that way anymore.<span style="mso-spacerun: yes;"> </span>She listens intently to Dr Honig’s questions
and requests and gives her best effort.<span style="mso-spacerun: yes;">
</span>And I think she believes she’s doing fine.</div>
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Marcia’s language skills have noticeably
deteriorated since May.<span style="mso-spacerun: yes;"> </span>All of us who
spend any time with Marcia know this.<span style="mso-spacerun: yes;">
</span>Dr. Honig commented not just on diminished verbal ability, he also quickly
picked up on her voice changes, in both pitch and volume.<span style="mso-spacerun: yes;"> </span>She’s very soft spoken and rarely says more
than a word or two.<span style="mso-spacerun: yes;"> </span>It’s also clear that
while language is the most challenging of her symptoms, just processing
information is more difficult and we (family, Dr. Honig) are increasingly
concerned about her being alone.<a href="http://www.blogger.com/null" name="_GoBack"></a></div>
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We are moving forward with enrolling her in a
local Adult Day Center in Somerset County. We’ve completed the medical forms
and are planning an “interview” for October 2nd.<span style="mso-spacerun: yes;"> </span>We plan to start with one or two days a week
and expand as Marcia feels more comfortable.<span style="mso-spacerun: yes;">
</span>While this will be just one more significant event in her progression,
this one feels better than some of the other milestones, because we know she
will be looked after and safe for longer periods of time.</div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com0tag:blogger.com,1999:blog-6671933337680078119.post-75374495462292534292013-08-25T22:38:00.001-04:002013-08-25T22:38:38.926-04:00Adult Day Care - the next step
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<span lang="EN" style="mso-ansi-language: EN;">It’s
been more than two months since the Branchburg Race Against Alzheimer’s, and
almost that long since my last blog entry.<span style="mso-spacerun: yes;">
</span>I’ve had many reasons and events to blog recently.<span style="mso-spacerun: yes;"> </span>The truth is, it’s been harder to find the
time to do it.<span style="mso-spacerun: yes;"> </span>Work and my kids’ lives
have been a constant for me, but caring for Marcia has reached a stage where
changes in her schedule are needed.<span style="mso-spacerun: yes;"> </span>It’s
been two and a half years since Marcia’s diagnosis, and there have been
inevitable changes.<span style="mso-spacerun: yes;"> </span>But progression also
results in milestones, and milestones sometimes result in exponentially more
time consuming activities.<span style="mso-spacerun: yes;"> </span>A year ago,
we were dealing with Marcia no longer driving.<span style="mso-spacerun: yes;">
</span>This summer, Marcia has given up running (the Branchburg Race was her
last), and now we are seeing the end of her career as a fitness instructor.<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">At the
end of July, when Marcia was in Maine with her family, both HealthQuest and the
YMCA decided they couldn’t keep her on as an instructor and let me know that
she wouldn’t be on the schedule immediately at the Y, and after the August
session at HealthQuest.<span style="mso-spacerun: yes;"> </span>Both have been
incredibly supportive of Marcia and stayed with her as long as they could.<span style="mso-spacerun: yes;"> </span>But there are liability issues, it’s not fair
to those who take the class, etc….<span style="mso-spacerun: yes;"> </span>The
night Marcia got back from Maine, I broke the news to her.<span style="mso-spacerun: yes;"> </span>I’ll never forget the sound of her voice when
she said “really?”<span style="mso-spacerun: yes;"> </span>Crystal clear,
totally surprised, and completely heartbroken.<span style="mso-spacerun: yes;">
</span>I’ve seen Marcia cry from time to time since her diagnosis, but not like
this.<span style="mso-spacerun: yes;"> </span>Tonight she cried herself to
sleep.<span style="mso-spacerun: yes;"> </span>Not me though.<span style="mso-spacerun: yes;"> </span>I couldn’t fall asleep so easily….<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">As
Alzheimer’s progresses, independence becomes more challenging.<span style="mso-spacerun: yes;"> </span>Every weekday Marcia has been getting out of
the house to teach her classes, exercise and run errands with friends.<span style="mso-spacerun: yes;"> </span>She’s generally home alone for a few hours
every day and since she’s not running/jogging, cooking, or doing anything else
where her safety is in jeopardy, I haven’t worried too much about her being
home alone to this point.<span style="mso-spacerun: yes;"> </span>Generally she
watches TV, takes naps, does laundry, waters the plants and does other things
around the house.<span style="mso-spacerun: yes;"> </span>Our concern about her
being alone is growing, and now that teaching is reaching an end, I’m looking
at options to fill the void teaching filled, while ensuring she’s safe.<span style="mso-spacerun: yes;"> </span>In late July, when Marcia was in Maine, I
spent part of my vacation talking to people from a few home healthcare
companies and visited two local Adult Care Centers.<span style="mso-spacerun: yes;"> </span>For now, I THINK the best option for Marcia
is a few days a week at one of the Adult Care Centers.<span style="mso-spacerun: yes;"> </span>Marcia looks for every opportunity to get out
of the house.<span style="mso-spacerun: yes;"> </span>She’s still very social
and enjoys being around others, even if she can’t communicate as well as she
would like.<span style="mso-spacerun: yes;"> </span>If she likes the Day Center,
and as the need arises, increasing to more than a few days a week is an option.<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">Both
Adult Centers think Marcia could be an asset to their daily exercise classes
because she has credentials in leading active older adult classes (she lead a
chair exercise class for senior citizens at our church for 15 years).<span style="mso-spacerun: yes;"> </span>She is also comfortable around older people
since that has been her focus for 30 years with the YMCA.<span style="mso-spacerun: yes;"> </span>So I’m hopeful she will embrace Adult Day
Centers and enjoy the company and activities they provide.<span style="mso-spacerun: yes;"> </span>There are many similarities in both
facilities in that they are secure, relatively new, have many activities and a
good staff to attendee ratio. <span style="mso-spacerun: yes;"> </span>One
specializes in dementia, but doesn’t provide transportation and isn’t as close
to home as the other one.<span style="mso-spacerun: yes;"> </span>While it
doesn’t provide transportation, it’s on my way to work, but the hours of
operation wouldn’t be ideal with my work hours.<span style="mso-spacerun: yes;">
</span>Based on what I saw, I would be comfortable with either for Marcia and
will likely look at the one that’s a little closer to home and provides
transportation, as that’s a nice option to have, even if we don’t use it right
away.<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">What
has kept me busy this summer, and my advice to anyone going through life with
Alzheimer’s?<span style="mso-spacerun: yes;"> </span>Prepare for the next steps
in the disease, while making the most of the time together in the current
stage.<span style="mso-spacerun: yes;"> </span>Update your will and review it
every few years.<span style="mso-spacerun: yes;"> </span>While we updated ours
right after the diagnosis, I met with our attorney to further tweak parts of it
a few weeks ago.<span style="mso-spacerun: yes;"> </span>Prepare for alternate
care in home or outside of the home.<span style="mso-spacerun: yes;"> </span>We
are looking at Day and Home Care options and both are recommended before the
need arises.<span style="mso-spacerun: yes;"> </span>And now that her paid
career is over, we are applying for Social Security Disability and how to
activate our long term care insurance.<span style="mso-spacerun: yes;">
</span>These are things that aren’t fun to do, but lessen the stress of the
disease on our family in the future.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">While
these are not the things I hope my kids write or talk about when they go back
to school (they worked, played lacrosse, soccer, began training for cross
country and fencing, saw every movie released this summer, etc…), I’m blessed
to have had counsel of friends and family to help me through this stage.<span style="mso-spacerun: yes;"> </span>Family has been there to provide support from
a distance, and my friend Jen put me in contact with a friend who is in the
Adult Care business, who put me in touch with at least three others.<span style="mso-spacerun: yes;"> </span>All have been wonderful and freely given
advice, contacts and treated me as if we’ve been friends forever.<span style="mso-spacerun: yes;"> </span>I’ve also received many encouraging calls,
emails, texts, etc….<span style="mso-spacerun: yes;"> </span>People are amazing,
if you give them a chance to help.<span style="mso-spacerun: yes;"> </span>And I
could NOT handle this without such support!<o:p></o:p></span></div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com2tag:blogger.com,1999:blog-6671933337680078119.post-67532147156391196972013-06-20T23:22:00.001-04:002013-06-20T23:29:52.002-04:00June High’s and Low’s – the extremes<div style="tab-stops: 175.5pt;">
<span lang="EN" style="mso-ansi-language: EN;">As this entry is written, the month is only half over, but it’s already been a very eventful month.<span style="mso-spacerun: yes;"> </span>Living with Alzheimer’s has good days and more challenging ones. But we’ve experienced greater depths and incredible highs, all within the first two weeks of the month.<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">On Saturday, June 1<sup>st</sup>, Marcia ran a 5k in Hillsborough.<span style="mso-spacerun: yes;"> </span>Even though the race started early (8:00 a.m.), it was a very warm and humid.<span style="mso-spacerun: yes;"> </span>I didn’t run the race, but was waiting for Marcia at the finish line.<span style="mso-spacerun: yes;"> </span>Long story short, I saw her coming down the last ¼ mile and could see she didn’t look strong.<span style="mso-spacerun: yes;"> </span>Like everything Marcia does these days, she tries so hard and is so determined.<span style="mso-spacerun: yes;"> </span>She sprinted to the finish line…. And then she nearly collapsed.<span style="mso-spacerun: yes;"> </span>One of the race marshals and I kept her upright until the paramedics arrived (less than a minute).<span style="mso-spacerun: yes;"> </span>Trip to the emergency room and a six hour stay pretty much took up the rest of the day.<span style="mso-spacerun: yes;"> </span>Like any trip to the ER, the experience was scary, but once she cooled down and drank some water, the paramedics said she would be okay.<span style="mso-spacerun: yes;"> </span>They wanted to take her to the hospital as a precaution.<span style="mso-spacerun: yes;"> </span>Most of the time in the ER was spent taking a few liters of IV fluids to make sure she was hydrated.<span style="mso-spacerun: yes;"> </span>Cat scans and stomach x-rays showed everything else was normal.<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">The following Friday, she had a challenging day teaching her class and seemed to have more trouble than normal with “self-care” activities that are indications that she needs to have a more frequent level of supervision.<span style="mso-spacerun: yes;"> </span>Not around the clock, but situations where I may not be around to make sure she gets dressed, take her medication and can find everything she’s looking for.<span style="mso-spacerun: yes;"> </span>While she feels teaching classes are things where she can still contribute and used to excel at, it’s clear she is struggling with some of her accountabilities.<span style="mso-spacerun: yes;"> </span>There are circumstances where her safety and the safety of her class participants are not in jeopardy.<span style="mso-spacerun: yes;"> </span>In other classes, it’s not so clear.<span style="mso-spacerun: yes;"> </span>Not teaching and more frequent supervision will be milestones that will hurt – her and me.<span style="mso-spacerun: yes;"> </span>I’ve begun looking into how we might introduce having help, either through adult day care outside the home, or occasional in home care.<span style="mso-spacerun: yes;"> </span>This is a pretty big research project as there are many options and costs to consider.<span style="mso-spacerun: yes;"> </span>With Alzheimer’s, it’s inevitable that professional care will become part of our lives.<span style="mso-spacerun: yes;"> </span>I just have to do the work now as it’s time to start introducing this before any serious incidents occur.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">So on to the more positive news.<span style="mso-spacerun: yes;"> </span>On June 9<sup>th</sup>, the Branchburg Race Against Alzheimer’s (a 5k race and one mile fun run/walk) took place at White Oak Park.<span style="mso-spacerun: yes;"> </span>As I mentioned in a previous blog entry, Marcia is the inspiration for this race, which was planned and organized by one of my daughter’s friends and his mother (Mike and Judy Napoli).<span style="mso-spacerun: yes;"> </span>All week, we carefully and anxiously watched the weather reports.<span style="mso-spacerun: yes;"> </span>Heavy rain Friday and into Saturday and another heavy rain storm on Monday.<span style="mso-spacerun: yes;"> </span>In between was a perfect Sunday for the race and walk.<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">This day was THE MOST memorable day we’ve had since my son Ryan was born almost 13 years ago. Besides perfect weather, the attendance far exceeded our expectations for a first time event.<span style="mso-spacerun: yes;"> </span>We had over 400 registered runners and almost 200 walkers from 12 states, and raised over $50,000 for Alzheimer’s research (through Cure Alzheimer’s Fund)<span style="mso-spacerun: yes;"> </span>with donations from 22 states and 3 countries.<span style="mso-spacerun: yes;"> </span>My parents, brothers and their wives, nieces and nephews came to NJ, as did a many of my close friends from my college (Rich, Dave C, Dave F, Mark, Tony and their families), including one of my roommates (Jim) who came up from the Philadelphia area to participate in the walk -- in his wheelchair (one of the very memorable moments of the day).<span style="mso-spacerun: yes;"> </span>Also had two very close friends fly in from Denver (Dave) and South Carolina (Jen).<span style="mso-spacerun: yes;"> </span>Dave was here for the entire weekend and spent most of the day with us on Saturday.<span style="mso-spacerun: yes;"> </span>Several of my church’s youth group ran the race, and went right to church, and came back after the service.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">Marcia also had two of her college friends come down from Massachusetts (Swanny) and Connecticut (Sue).<span style="mso-spacerun: yes;"> </span>We got to spend some time with them Saturday night as well as a little time with them Sunday morning.<span style="mso-spacerun: yes;"> </span>Great turnout from people we work with at Bayer, the YMCA and Healthquest too!<span style="mso-spacerun: yes;"> </span>My good friend, Stew Bishop could not come for the race due to a family wedding, but his sponsorship and commitment to support us goes beyond being a good friend.<span style="mso-spacerun: yes;"> </span>Two of his employees (Alison and Matt), whom I’ve worked with for years, flew up from Houston for the race, and 30 or so participated in a satellite race in the Woodlands, a suburb of Houston at the same time as the Branchburg race.<span style="mso-spacerun: yes;"> </span>Amazing what they put together in less than 3 month, raising another $2200 dollars for the cause!<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">Just as amazing, and emotionally uplifting, was the turnout from Branchburg, Somerville, Hillsborough, Bridgewater, Readington and other areas.<span style="mso-spacerun: yes;"> </span>This day was just another example of how community support for us and Alzheimer’s continues to amaze and personally humble me. <span style="mso-spacerun: yes;"> </span>Mike and Judy Napoli, and countless volunteers did a fantastic job organizing and nearly flawlessly executing a terrific event.<span style="mso-spacerun: yes;"> </span>One thing I learned about fundraising this day:<span style="mso-spacerun: yes;"> </span>A 17 year old can come up with a great way to raise awareness and money.<span style="mso-spacerun: yes;"> </span>We were told we would be fortunate to get 150 or so runners, but we had that many sign up on race day alone.<span style="mso-spacerun: yes;"> </span>Lesson?<span style="mso-spacerun: yes;"> </span>Turn an ambitious idea over to a bright, determined teenager and an organized, detail oriented mom, and get out of the way.<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">So many highlights I could write about.<span style="mso-spacerun: yes;"> </span>Besides the amazing turnout from friends, friends of friends, family, runners and colleagues, Marcia’s 5k finish was the most emotional moment of the day.<span style="mso-spacerun: yes;"> </span>Several of her family and friends tried to talk her out of the 5k and into the 1 mile walk.<span style="mso-spacerun: yes;"> </span>Marcia was just determined to do the run (her doctor said she could if it wasn’t too hot and she hydrate before the race).<span style="mso-spacerun: yes;"> </span>My daughter Riley ran with her, as did a couple of Marcia’s good friends.<span style="mso-spacerun: yes;"> </span>At the finish line Marcia got such an ovation from the hundreds who were waiting for her.<span style="mso-spacerun: yes;"> </span>It was such a great and memorable moment, even though she needed some assistance to cool down and hydrate. <span style="mso-spacerun: yes;"> </span>Running has always been a passion for Marcia.<span style="mso-spacerun: yes;"> </span>She’s run marathons, half marathons, countless 5k events, and all the miles required to train for these events.<span style="mso-spacerun: yes;"> </span>But it’s not safe for her to do on her own any more.<span style="mso-spacerun: yes;"> </span>Thankfully, she realizes this too and has agreed to give up road running.<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">This was such an amazing day for our family.<span style="mso-spacerun: yes;"> </span>It’s hard to put into words how special we felt about the turnout and the support given to us and to our dream of ending Alzheimer’s.<span style="mso-spacerun: yes;"> </span>People who have never participated in a 5k ran, people who are so busy gave up several hours of their day, and so many gave more than a few hours to planning and preparing.<span style="mso-spacerun: yes;"> </span>Some gave up an entire weekend with family, frequent flyer miles, and those that volunteered to plan and organize the race invested countless hours that could have been used on other things.<span style="mso-spacerun: yes;"> </span>This incredible turnout was because of Marcia, because of Riley and Ryan, and me.<span style="mso-spacerun: yes;"> </span>And they believe in the cause.<span style="mso-spacerun: yes;"> </span>Marcia loved everything about the day and I haven’t felt this good about anything in a long time. My only regret was not being able to spend more time with those who were there that day.<span style="mso-spacerun: yes;"> </span></span><br />
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Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com0tag:blogger.com,1999:blog-6671933337680078119.post-29449129714010371632013-05-23T23:38:00.002-04:002013-05-23T23:38:31.392-04:005K run/1 mile walk for Awareness and Research<div style="tab-stops: 175.5pt;">
<span lang="EN" style="mso-ansi-language: EN;">In September (LY), I wrote about an experience I had with an Alzheimer’s Town Hall meeting.<span style="mso-spacerun: yes;"> </span>In my 3 minute opportunity to speak and share my family’s Alzheimer’s story, research to find a cure as fast as possible was the theme I felt focused on as my passion.<span style="mso-spacerun: yes;"> </span>Some spoke of Alzheimer’s care, others awareness and still others spoke of programs for families and those diagnosed with Alzheimer’s or some other form of dementia.<span style="mso-spacerun: yes;"> </span>Eight months later I haven’t been swayed away from research as a passion, but realized awareness is really a key component to raising money to more quickly find a cure.<span style="mso-spacerun: yes;"> </span>Through the Alzheimer’s Association and a tribute site to Marcia, and the generous donations of many, we have raised about $27,000 for the Alzheimer’s Association.<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">On June 9th, inspired by Marcia, Branchburg is hosting a 5k run/1mile fun walk called “Branchburg Race Against Alzheimer’s, a Quest for a Cure” to raise awareness and money for Alzheimer’s research.<span style="mso-spacerun: yes;"> </span>This fund raiser came to life by 16 year old friend of my daughter’s, Mike Napoli (Mike is 17 now).<span style="mso-spacerun: yes;"> </span>Mike and his mother, Judy, have really put this event together and have done an amazing job of first learning how to go about such an event, and have logged hundreds of hours researching, talking to people, creating websites, getting insurance, and a whole host of other activities I can’t begin to get my head around.<span style="mso-spacerun: yes;"> </span>With two weeks to go before the race/walk, 234 people have committed to the 5k and another 94 for the walk.<span style="mso-spacerun: yes;"> </span>Mike created the event website for registration, donations, information about Alzheimer’s and our personal story.<span style="mso-spacerun: yes;"> </span>For the most part, our marketing has been word of mouth, flyers posted wherever we can get them posted, and an article in a local newspaper, preceded by Facebook marketing.<span style="mso-spacerun: yes;"> </span>My daughter got the Facebook marketing going, reaching hundreds of teenagers.<span style="mso-spacerun: yes;"> </span>I posted on my Facebook page and reached another dozen or so adults</span><span lang="EN" style="font-family: Wingdings; mso-ansi-language: EN; mso-ascii-font-family: 'Times New Roman'; mso-char-type: symbol; mso-hansi-font-family: 'Times New Roman'; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span><span lang="EN" style="mso-ansi-language: EN;">.<span style="mso-spacerun: yes;"> </span>Friends have “liked” and posted the website page, while others have sent emails to friends of friends.<span style="mso-spacerun: yes;"> </span>While we are excited about the number of registrations, we are also getting donations that impress all of us, and leave me humbled and speechless.<span style="mso-spacerun: yes;"> </span>Our goal was to raise $20,000, but we’ve already passed that goal and are working on $30,000.<span style="mso-spacerun: yes;"> </span>This doesn’t include the 200 Euro’s I received in the mail from a friend of Marcia’s from Austria.<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">Special thanks to our sponsors:<span style="mso-spacerun: yes;"> </span>Customer Marketing Group, a Houston based consulting firm owned by a long-time friend, Stew Bishop, who has been there for me throughout Marcia’s illness. I can’t thank him and his company enough for their support.<span style="mso-spacerun: yes;"> </span>CMG is sending two people/friends from Houston for the event and is organizing a simultaneous race in Houston to support the cause.<span style="mso-spacerun: yes;"> </span>AT&T is another sponsor who has stepped up to help this cause, and is giving us support from one of the largest and well-known companies in the United States.<span style="mso-spacerun: yes;"> </span>We’ve been also supported by Detour Bars with donations of bars, shirts and bags, as well as countless donations of time and money by more than I can thank here.<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">The coolest thing and most exciting thing to me is the reach of the event.<span style="mso-spacerun: yes;"> </span>We have friends and family coming from Colorado, Texas, South and North Carolina, Virginia, Maryland, Delaware, Pennsylvania, New York, Massachusetts, Maine and more!!!<span style="mso-spacerun: yes;"> </span>So many people I can’t wait to see!<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">It’s not too late to come to Branchburg on June 9<sup>th</sup>, and certainly not too late to donate.<span style="mso-spacerun: yes;"> </span>Our website is:<span style="mso-spacerun: yes;"> </span>http://mikeatteammarcia.wix.com/teammarcia#!home/mainPage<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">For a first time organizing a fund raising event the Napoli’s, and to a much lesser extent, the Stanford’s, have learned an awful lot about what it takes to run an event like this and look forward to a fabulous day.<o:p></o:p></span></div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com0tag:blogger.com,1999:blog-6671933337680078119.post-6510192310373974802013-04-12T23:16:00.001-04:002013-04-12T23:16:43.713-04:00Will Mom Get Better?<div class="MsoNormal" style="margin: 0in 0in 0pt;">
In the 2+ years since Marcia’s diagnosis, Ryan has never initiative any conversation with me about Marcia’s health and I’ve been selective as to what and when I’ve raised the subject.<span style="mso-spacerun: yes;"> </span>Last week he did so twice!<span style="mso-spacerun: yes;"> </span>I’ve written here before that I’ve not been sure if I’ve been handling things with my kids the right way.<span style="mso-spacerun: yes;"> </span>I feel that I’ve considered the right things and have made informed decisions based on what I’ve felt was right.<span style="mso-spacerun: yes;"> </span>But I’ve often wondered if I would regret not doing more or handling things with them differently.<o:p></o:p></div>
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With Riley, it seems we talk more often about a variety of things than we did a few years ago, but I’m careful not to push her farther than she’s comfortable with regards to Marcia.<span style="mso-spacerun: yes;"> </span>I’m so proud of how she’s handling her emotions, how she’s helping out, and how she hugs Marcia from time to time.<span style="mso-spacerun: yes;"> </span>In spite of her mom’s illness, she’s amazed me with how well she’s done in school.<span style="mso-spacerun: yes;"> </span>She also seemingly knows what she wants to do in college and with her life (wish I did…).<span style="mso-spacerun: yes;"> </span>She’s very comfortable in her own skin and has a good head on her shoulders.<span style="mso-spacerun: yes;"> </span>Over the last 6 months, she’s definitely grown up as she’s been thinking about college and been more open and willing to let other people know about what’s happening with Marcia.<o:p></o:p></div>
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Ryan is only 12 and I’ve been much more cautious about how much I’ve shared with him.<span style="mso-spacerun: yes;"> </span>Until this week, he’s sort of just lived with Marcia’s speech issues and hasn’t ever felt like talking or asking any questions.<span style="mso-spacerun: yes;"> </span>Monday night, I took Ryan to the doctor to have his foot looked at (he’s had pain in his heel for a few weeks).<span style="mso-spacerun: yes;"> </span>On the way home, Ryan asked “will mom get better?”<span style="mso-spacerun: yes;"> </span>I’ve had two years to think about how to address Alzheimer’s with him and truthfully, I’ve not really had what I felt was the right way to explain it and I’ve not always been sure how I would answer any questions he might have.<span style="mso-spacerun: yes;"> </span>I always thought I would be brief and only answer the question or questions he asked.<span style="mso-spacerun: yes;"> </span>I’m not sure what prompted him speak up this night, but I suppose I am relieved to have this more out in the open.<span style="mso-spacerun: yes;"> </span>How would you tell your son that his mom isn’t going to get better?<span style="mso-spacerun: yes;"> </span>I just told him<span style="mso-spacerun: yes;"> </span>“No, she won’t get better.<span style="mso-spacerun: yes;"> </span>Right now there isn’t a cure or a way to make her better”.<span style="mso-spacerun: yes;"> </span>I told him that because there is no cure, I am committed to help raise money to find one.<span style="mso-spacerun: yes;"> </span>I’ll write more about the Branchburg Race Against Alzheimer’s soon, and Ryan is aware about the 5k fundraiser we are having in June in Marcia’s honor.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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On Wednesday, on our way to have an x-ray on his foot (no fracture), he told me he never realized how important communication was until “mom started having trouble speaking”.<span style="mso-spacerun: yes;"> </span>This felt like such a mature thing for a 12 year old to say, and a revelation I didn’t have until much later in life.<span style="mso-spacerun: yes;"> </span>Neither exchange with Ryan seemed to upset him and if nothing else, it seems he was just ready to talk about this ordeal.<span style="mso-spacerun: yes;"> </span>I think I need to spend more time in the car driving Ryan to doctors’ appointments…..<o:p></o:p></div>
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It was just a matter of time before Ryan engaged more with me around Marcia’s condition.<span style="mso-spacerun: yes;"> </span>Communicating with her is just harder than ever and it can be exhausting.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>Marcia still ties very hard to get her message across, but she is relying more on hand gestures and pointing and less on verbal cues.<o:p></o:p></div>
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This week I also took Marcia to the doctor to see if they could figure out the cause of the pain she’s had in her right leg over the last few weeks.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>One of my concerns about Marcia’s progressive speech deterioration has been if she would be able to explain pain or discomfort.<span style="mso-spacerun: yes;"> </span>She couldn’t clearly explain to the doctor where her pain was, how often it bothers her or how long she’s had pain.<span style="mso-spacerun: yes;"> </span>In fact, she pointed to parts of her leg that were different than what she has been showing me when the doctor asked her where she was feeling pain.<span style="mso-spacerun: yes;"> </span>Marcia could not follow or understand the doctor’s request to resist pressure or move her leg in various ways.<span style="mso-spacerun: yes;"> </span>The doctor was very kind and patient, but we weren’t able to give her a lot of information that would be helpful to her in finding a cause or making a diagnosis.<span style="mso-spacerun: yes;"> </span>We are going to get two MRI’s (lower back and right leg), which hopefully can give us information that Marcia cannot.<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com0tag:blogger.com,1999:blog-6671933337680078119.post-39173828054363969442013-03-26T15:34:00.000-04:002013-03-26T15:34:01.284-04:00Return to blogging – why the silence?<div style="tab-stops: 175.5pt;">
<span lang="EN" style="mso-ansi-language: EN;">It’s been 7 or 8 weeks since I last wrote anything here.<span style="mso-spacerun: yes;"> </span>Clearly I have fallen short of trying to post something a couple of times a month.<span style="mso-spacerun: yes;"> </span>I’ve been blog-quiet for several reasons, none of them intentional.<span style="mso-spacerun: yes;"> </span>For starters, I’ve thought a lot about how public I want to make Marcia’s progression.<span style="mso-spacerun: yes;"> </span>Maybe better said, I’ve thought a lot about how private this should be.<span style="mso-spacerun: yes;"> </span>If the blog is meant to help others, I probably can’t abandon the facts.<span style="mso-spacerun: yes;"> </span>But is that helpful, or depressing?<span style="mso-spacerun: yes;"> </span>If it’s meant to provide information to those who are familiar with our situation, can I do that without too much detail?<span style="mso-spacerun: yes;"> </span>I haven’t firmly settled on how I feel about this.<span style="mso-spacerun: yes;"> </span>Secondly, I just haven’t been able to find time.<span style="mso-spacerun: yes;"> </span>Is the last month or so a new normal or is this a seasonal peak?<span style="mso-spacerun: yes;"> </span>I’m sure it’s both!<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">My brother Greg sent me an article a few weeks ago about a family that has an unfortunate history with Alzheimer’s (several family members have or passed away with it).<span style="mso-spacerun: yes;"> </span>The article was inspiring in that they have raised over $5million dollars for Alzheimer’s.<span style="mso-spacerun: yes;"> </span>We are just $4,970,000 behind this family, but we have our first 5k fund raiser coming up in June (I’ll write about that separately)!!<span style="mso-spacerun: yes;"> </span>It was also surprising in that there is a particular gene whereby every family member is stricken at the exact same age (wow!).<span style="mso-spacerun: yes;"> </span>And the article ended with the importance of the caregiver taking care of themselves (not something I haven’t heard before).<span style="mso-spacerun: yes;"> </span>The facts suggest caregivers are susceptible to health issues due to stress over many years.<span style="mso-spacerun: yes;"> </span>I bring this up because over the last month or so, there have been times where I have felt a level of stress I’ve not felt before, and it’s not one thing I can identify that changed.<span style="mso-spacerun: yes;"> </span>It’s the whole package of kids, work and Alzheimer’s.<span style="mso-spacerun: yes;"> </span>Interestingly, I love the first, like the second, and hate the third!<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">As I write this tonight, I feel great.<span style="mso-spacerun: yes;"> </span>I’m taking the next two days off and tonight I’m just not focusing on work.<span style="mso-spacerun: yes;"> </span>I feel better already.<span style="mso-spacerun: yes;"> </span>So it’s work that’s causing the stress!<span style="mso-spacerun: yes;"> </span>Well, not exactly.<span style="mso-spacerun: yes;"> </span>It’s just that I don’t have to get up tomorrow at 5:30, I’m not checking email or thinking of the next deadline, project or issue tonight and that brings some relaxation to the evening.<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">For me, the stress I’m feeling is the constant, overwhelming number of things I have on “to do” lists I keep on my iPhone, the back of envelopes or scrap pieces of paper.<span style="mso-spacerun: yes;"> </span>They are things that occur to me at 4:00 in the morning, in the car, or anywhere really.<span style="mso-spacerun: yes;"> </span>Sometimes it just feels everything is due, or should be done, today.<span style="mso-spacerun: yes;"> </span>Until now, I’ve been comfortable getting done what I can, and not stressing about the things I don’t.<span style="mso-spacerun: yes;"> </span>Lately it just hasn’t seemed like it’s okay to not get something done, whether it’s our taxes, planning college visits for my daughter, Riley, eye appointments, doctor’s appointments, soccer/lacrosse games/practices, birthdays/anniversaries (including Marcia and my 20<sup>th</sup>) or anything job related.<span style="mso-spacerun: yes;"> </span>And there is Marcia.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">Marcia is still amazing, friendly and trying so hard.<span style="mso-spacerun: yes;"> </span>She is just more dependent on me than she was 6 months ago.<span style="mso-spacerun: yes;"> </span>She will soon want to run outside when the weather is better (it snowed today) and that makes me nervous.<span style="mso-spacerun: yes;"> </span>Riley recently stopped her from taking a hot pan out of the oven without oven mitts.<span style="mso-spacerun: yes;"> </span>And trying to understand what she’s trying to communicate can be an exhausting effort. <span style="mso-spacerun: yes;"> </span>Lately, she might just point at a blank sheet of paper and I have to start guessing without any verbal cue at all.<span style="mso-spacerun: yes;"> </span>Where do you start?<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">She doesn’t yet need to be supervised all the time, but I can see that time is coming.<span style="mso-spacerun: yes;"> </span>In the last 48 hours I’ve seen her upset at not being able to download music or get the television remote to work.<span style="mso-spacerun: yes;"> </span>If you’re one to look for humor in any situation, here it is.<span style="mso-spacerun: yes;"> </span>I couldn’t download the music or get the remote to work either.<span style="mso-spacerun: yes;"> </span>In my defense <span style="mso-spacerun: yes;"> </span>(I’m stretching things here) something is “up” with our remote controls and it doesn’t turn the TV on or control the volume.<span style="mso-spacerun: yes;"> </span>Just changes the channel (on two of our TV’s).<span style="mso-spacerun: yes;"> </span>The downloading music, it seems, was a temporary computer issue, since it worked fine today.<span style="mso-spacerun: yes;"> </span>The difference between Marcia’s inability and mine? <span style="mso-spacerun: yes;"> </span>I found the alternate way to turn the TV on and adjust the volume (remember?<span style="mso-spacerun: yes;"> </span>TV’s actually have power and volume ON the TV).<span style="mso-spacerun: yes;"> </span>Marcia thought it was Alzheimer’s that prevented her from doing simple tasks.<span style="mso-spacerun: yes;"> </span>And she didn’t try the TV route.<span style="mso-spacerun: yes;"> </span>She let it upset her, and both upset her a lot.<span style="mso-spacerun: yes;"> </span>I’ll get the remotes fixed too.<span style="mso-spacerun: yes;"> </span>Someday….<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">I know our lives will get harder and more stressful.<span style="mso-spacerun: yes;"> </span>Take a day off, go for a run, watch your son or daughter play a sport, listen to a comedy channel in the car or read the bible.<span style="mso-spacerun: yes;"> </span>They bring back an old normal, make me laugh or make me think.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com0tag:blogger.com,1999:blog-6671933337680078119.post-49306050265801074062013-02-06T23:19:00.001-05:002013-02-06T23:19:08.705-05:00Mammogram and Neurology<div style="tab-stops: 175.5pt;">
<span lang="EN" style="mso-ansi-language: EN;">Great, but not unexpected news from Marcia’s mammogram.<span style="mso-spacerun: yes;"> </span>There were no signs of any cancer recurrence, which means she is 20 months cancer-free.<span style="mso-spacerun: yes;"> </span>This good news is not something we take for granted!<span style="mso-spacerun: yes;"> </span>In a few weeks, we see Marcia’s oncologist and surgeon, but expect continued good news on the cancer front.<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">After the mammogram, Marcia and I went to Columbia Hospital in NYC to meet with her neurologist.<span style="mso-spacerun: yes;"> </span>Since our last trip to NYC, Dr. Honig’s office moved from the first to the third floor and is co-located with the Parkinson’s unit.<span style="mso-spacerun: yes;"> </span>We don’t have much exposure to Alzheimer’s and even less with Parkinson’s.<span style="mso-spacerun: yes;"> </span>Seeing so many people with broken bodies and minds was a sobering and sad sight.<span style="mso-spacerun: yes;"> </span>In spite of the progression I’ve seen in Marcia, she’s still pretty mild compared to others we saw.<span style="mso-spacerun: yes;"> </span>But I did get a look at a possible future and realize why living one day at a time is a good thing.<span style="mso-spacerun: yes;"> </span>Today will always be a good day as the “tomorrows” will not be as good as today.<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">As I write this, two weeks after the appointment, I’m still not sure how I really feel about the appointment.<span style="mso-spacerun: yes;"> </span>While Marcia’s speech has clearly deteriorated since our last visit, Dr. Honig’s evaluation was mostly sort of status quo.<span style="mso-spacerun: yes;"> </span>In other words, from an Alzheimer’s perspective, she’s not too bad (other than language).<span style="mso-spacerun: yes;"> </span>I think we (friends, family) expected a change in medication to stronger dosing and perhaps recommendations about in-home care as many of us are concerned that Marcia may not be safe when alone in our house.<span style="mso-spacerun: yes;"> </span>I think the key takeaway for me from this appointment is that those of us who know Marcia well see she isn’t really close to being who she used to be.<span style="mso-spacerun: yes;"> </span>But there are others whose progression is more advanced than Marcia’s.<span style="mso-spacerun: yes;"> </span>Alzheimer’s has a different scale to measure progression than I do.<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">Status quo, or not much change, was not the result of a deep battery of test.<span style="mso-spacerun: yes;"> </span>Dr. Honig observed her arms, legs and back, looking for bruises.<span style="mso-spacerun: yes;"> </span>There were none that would indicate any recent falls.<span style="mso-spacerun: yes;"> </span>She was asked pretty basic questions:<span style="mso-spacerun: yes;"> </span>who is president of the US, what day it is, what floor of the hospital we were on, etc….<span style="mso-spacerun: yes;"> </span>Apparently, those are questions people with moderate to late stage AD have a hard time answering.<span style="mso-spacerun: yes;"> </span>Marcia knew the answers, but she had a lot of trouble answering the questions.<span style="mso-spacerun: yes;"> </span>She could not say Barack, or Obama.<span style="mso-spacerun: yes;"> </span>It was apparent she knew what to say, she just couldn’t say it.<span style="mso-spacerun: yes;"> </span>The date was not the twenty forth, but 2-4 and the year is two-oh-one-three.<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">I think where I’m not completely honest with myself is my reaction to this doctor’s appointment.<span style="mso-spacerun: yes;"> </span>The last two years have been really hard for my family.<span style="mso-spacerun: yes;"> </span>So much of what Marcia used to do, she can no longer do.<span style="mso-spacerun: yes;"> </span>And her case of AD is mild?<span style="mso-spacerun: yes;"> </span>The reality is that things will get worse.<span style="mso-spacerun: yes;"> </span>Significantly so.<span style="mso-spacerun: yes;"> </span>And for how much longer?<span style="mso-spacerun: yes;"> </span>As I mentioned above, we saw a lot of people with AD and Parkinson’s in the waiting areas and it wasn’t too hard to determine which camp most people were in.<span style="mso-spacerun: yes;"> </span>Two of the people sitting with us clearly had Alzheimer’s, and both had at least two people with them.<span style="mso-spacerun: yes;"> </span>One lady had her caregiver with her and either an aunt, sister or friend.<span style="mso-spacerun: yes;"> </span>This woman hummed constantly (as does Marcia, but did so a little louder), kissed her hands loudly and often and told almost all of us in the waiting area that she loved us.<span style="mso-spacerun: yes;"> </span>While she was kind and sweet (as is Marcia), she was further along than Marcia, though she spoke very clearly.<span style="mso-spacerun: yes;"> </span>This helped me better calibrate Alzheimer’s according to the signs of the disease, not the magnitude of change in Marcia.<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">After his examination, I asked Dr. Honig what he would have done differently if her memory had tested worse.<span style="mso-spacerun: yes;"> </span>He might have changed to a stronger dose of Aricept, but that’s about it.<span style="mso-spacerun: yes;"> </span>We can’t do anything to slow the progression and we are going to have to deal with our communication challenges while proactively making decisions about her safety.<span style="mso-spacerun: yes;"> </span>In the short term, this really only means putting a hand rail on our front steps (only 3 steps, but Marcia has a difficult time negotiating them, or at least would feel more comfortable with them).<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">In closing, while today is not what most people would consider a relaxing or fun vacation day, I enjoyed spending time with Marcia and marvel at her strong will and wonderful attitude.<span style="mso-spacerun: yes;"> </span>We had a nice lunch between doctor’s appointments.<span style="mso-spacerun: yes;"> </span>We often eat in silence, but watching her concentrate so hard on whatever she’s doing is inspiring to me.<span style="mso-spacerun: yes;"> </span>She was clearly focused on eating and very deliberate but relaxed.<span style="mso-spacerun: yes;"> </span>She laughed at a small joke I made in the waiting room at Columbia hospital, and she was very animated and seemed in very good spirits with Dr. Honig.<span style="mso-spacerun: yes;"> </span>While it can be painful to watch her try to communicate, it’s amazing to me that she tries with such apparent lack of concern over what others might think. <o:p></o:p></span></div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com0tag:blogger.com,1999:blog-6671933337680078119.post-2405464825097585162013-02-06T23:15:00.000-05:002013-02-06T23:15:06.905-05:00Preparing for a full day of doctor visits<div class="MsoNormal" style="margin: 0in 0in 0pt;">
Tomorrow (Jan 24) Marcia has a mammogram scheduled for 10:00.<span style="mso-spacerun: yes;"> </span>We have to do this twice a year for another 3 years or so until she is cancer free for 5 years.<span style="mso-spacerun: yes;"> </span>Based on what Marcia’s surgeon has told us, because her tumor was caught early and it was pretty isolated, there is low likelihood of recurrence.<span style="mso-spacerun: yes;"> </span>Aside from the medication she takes daily, breast cancer has not been a life altering event like AD has.<o:p></o:p></div>
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Following the mammogram we have an appointment to see Marcia’s neurologist in New York City.<span style="mso-spacerun: yes;"> </span>It’s been about 6 months since we’ve seen been to NYC and we are definitely overdue as a lot has changed.<span style="mso-spacerun: yes;"> </span>Marcia’s sister and friends have given me their observations over the last six months.<span style="mso-spacerun: yes;"> </span>Along with my own thoughts, there are several things I want to discuss with Dr. Honig.<span style="mso-spacerun: yes;"> </span>I’d like to discuss these without Marcia present, but I doubt that opportunity will present itself.<o:p></o:p></div>
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<span lang="EN" style="mso-ansi-language: EN;">Assuming I won’t be able to meet with Dr Honig privately, and I’m pretty sure I’ll be a complete coward in being honest with him in Marcia’s presence, I wrote down the key points we wanted him to know about.<span style="mso-spacerun: yes;"> </span>While my first choice would have been to meet with Dr Honig and discuss this in person, I’m not ashamed of the cowardly approach! <o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">This is what we had put together:<o:p></o:p></span></div>
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Dr. Honig<o:p></o:p></div>
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In the event that I am not able to speak to you privately, or have the courage to be completely honest in front of Marcia, I thought this might be the best way to give you the best, most current information on what we (family and friends) have seen in Marcia since our last appointment with you in July.<o:p></o:p></div>
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I think you know that coming here creates anxiety in Marcia.<span style="mso-spacerun: yes;"> </span>Conversely, I’m glad to be here, and need to know what I need to be doing to care for Marcia and keep her safe.<o:p></o:p></div>
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Observations:<o:p></o:p></div>
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<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt 'Times New Roman';"> </span></span></span>Her speech you will certainly see for yourself.<span style="mso-spacerun: yes;"> </span>Communication is very difficult.<span style="mso-spacerun: yes;"> </span>We’ve started to try “talk’n photos” on an iPad, and using laminated cards where she can point to things.<span style="mso-spacerun: yes;"> </span>She has been open to trying both, but she really hasn’t’ used either to this point.<span style="mso-spacerun: yes;"> </span>She’s increasingly quiet.<span style="mso-spacerun: yes;"> </span>When she does try to speak, she has a lot of difficulty getting her message across and will give up if her struggles are too great.<o:p></o:p></div>
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<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt 'Times New Roman';"> </span></span></span>Myoclonus episodes occur with greater frequency and severity.<span style="mso-spacerun: yes;"> </span>Sunday she spilled coffee on her lap (not the first time).<span style="mso-spacerun: yes;"> </span>They have also affected her willingness to even try to communicate.<span style="mso-spacerun: yes;"> </span>Our daughter is very concerned about how often they occur and has seen her drop items in grocery stores and around the house.<o:p></o:p></div>
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<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt 'Times New Roman';"> </span></span></span>Marcia gets out of the house every day for a couple of hours and is still teaching classes 3 days/week.<span style="mso-spacerun: yes;"> </span>Class size is smaller, but very loyal.<span style="mso-spacerun: yes;"> </span>We are all concerned about her being alone in the house, which happens from 3 – 5 hours/day.<span style="mso-spacerun: yes;"> </span>Mostly she watches TV and naps, but will do laundry and other things to keep her busy.<span style="mso-spacerun: yes;"> </span>However, she has had a few falls that we are aware of (she hasn’t told me about any of them) navigating stairs.<o:p></o:p></div>
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<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt 'Times New Roman';"> </span></span></span>She fixes her own breakfast (oatmeal) and lunch (peanut butter and bagel).<span style="mso-spacerun: yes;"> </span>Both require working the microwave, which she can still do effectively.<span style="mso-spacerun: yes;"> </span>Repetition here seems to help.<span style="mso-spacerun: yes;"> </span>She also operates the coffee maker (K-cups).<span style="mso-spacerun: yes;"> </span>She’s completely reliant on others for dinner, not that she couldn’t warm something up, but she’s comfortable letting others take care of this for her.<o:p></o:p></div>
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<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt 'Times New Roman';"> </span></span></span>She manages her own medication.<span style="mso-spacerun: yes;"> </span>Again, very deliberate in doing so.<span style="mso-spacerun: yes;"> </span>Takes her a lot longer to do than it should, but she still gets it right.<o:p></o:p></div>
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<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt 'Times New Roman';"> </span></span></span>We have seen basic motor skill deterioration.<span style="mso-spacerun: yes;"> </span>She doesn’t put make up on correctly (when she puts make up on), has toothpaste on her lips when picked up by friends, and asks for help occasionally putting on ear rings, etc….<span style="mso-spacerun: yes;"> </span>She asked for help getting ready for a party where we had to get “dressed up”, and was especially cautious walking in heals.<span style="mso-spacerun: yes;"> </span>She’s always very careful going up and down steps, and is aware of her increasing challenges in this area.<o:p></o:p></div>
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<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt 'Times New Roman';"> </span></span></span>The iPad, mentioned above, isn’t likely to be a long term solution for her speech.<span style="mso-spacerun: yes;"> </span>She can’t turn it on or off without help.<o:p></o:p></div>
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<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt 'Times New Roman';"> </span></span></span>Marcia has lunch with a friend every Friday.<span style="mso-spacerun: yes;"> </span>Her friend says Marcia is now eating her salad with her fingers as opposed to using a fork.<o:p></o:p></div>
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<span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt 'Times New Roman';"> </span></span></span>Finally, she’s amazingly strong and trying to stay positive.<span style="mso-spacerun: yes;"> </span>But she’s feeling lonely since we can’t communicate very effectively.<span style="mso-spacerun: yes;"> </span>She tells friends we don’t tell her anything about what’s going on.<span style="mso-spacerun: yes;"> </span>She might be correct in that it’s just more exhausting for all of us to carry on a conversation.<span style="mso-spacerun: yes;"> </span>On the other hand, I tell her everyday what we have going on with activities and who is taking her places.<span style="mso-spacerun: yes;"> </span>Maybe she doesn’t remember….<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com0tag:blogger.com,1999:blog-6671933337680078119.post-50720356213276949352012-12-25T22:32:00.000-05:002012-12-25T22:32:05.262-05:00Marcia Speaks!<div style="tab-stops: 175.5pt;">
<span lang="EN" style="mso-ansi-language: EN;">Our Sunday morning schedule starts with me waking Ryan at least twice.<span style="mso-spacerun: yes;"> </span>Our whole family then goes to 9:00 Sunday school, followed by a 10:00 church service.<span style="mso-spacerun: yes;"> </span>So far, this Sunday was playing out like every other Sunday.<span style="mso-spacerun: yes;"> </span>While Riley and Ryan go to Sunday school, Marcia and I attend Adult Education.<span style="mso-spacerun: yes;"> </span>Most of those that attend Adult Ed are engaged and share different perspectives every week. <span style="mso-spacerun: yes;"> </span>While I am on the quiet side, I’ll bet it’s been at least two years since Marcia has spoken in class.<span style="mso-spacerun: yes;"> </span>Today’s discussion was from the New Testament, from the book of Luke.<span style="mso-spacerun: yes;"> </span>The topic was “peace on earth and goodwill towards men” and our facilitator asked what we thought is meant by both peace and goodwill.<span style="mso-spacerun: yes;"> </span>The “goodwill” conversation had a heavy perspective around helping others.<span style="mso-spacerun: yes;"> </span>Some brought up memories of how communities thrived through the expectation that people helped each other, and relied less on government involvement.<span style="mso-spacerun: yes;"> </span>Others shared stories of people who selflessly helped others in need with little fanfare or publicity.<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">Then the normal turned abnormal.<span style="mso-spacerun: yes;"> </span>Marcia raised her hand to speak and to me, time slowed down dramatically and the room got completely silent.<span style="mso-spacerun: yes;"> </span>As her speech has deteriorated, anytime she speaks I find I need to be totally focused on her, because she will look to me to help her, and sometimes I really don’t know what she’s trying to say.<span style="mso-spacerun: yes;"> </span>And the last thing I want is for her to feel embarrassed or frustrated.<span style="mso-spacerun: yes;"> </span>All eyes were on Marcia as she tried to say “I have Alzheimer’s and I’m grateful for Mike and how he’s taking care of me” (or something like that).<span style="mso-spacerun: yes;"> </span>But she only got the first three words out…. sort of.<span style="mso-spacerun: yes;"> </span>If you didn’t know Marcia had AD, or didn’t know her at all, you would have had no idea what she was saying, but everyone there already knew she has Alzheimer’s and I suspect they were a little surprised she wanted to say anything (I know I was).<span style="mso-spacerun: yes;"> </span>Two things happened:<span style="mso-spacerun: yes;"> </span>first, she wasn’t able to say what she wanted to say.<span style="mso-spacerun: yes;"> </span>As she was saying those three words, she was patting my knee with her hand.<span style="mso-spacerun: yes;"> </span>That was the best she could do to communicate how grateful she was for me and what I’m doing to help her.<span style="mso-spacerun: yes;"> </span>The second thing that happened is that the intended discussion about goodwill stopped.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">What wasn’t surprising to me were the things that people said to Marcia.<span style="mso-spacerun: yes;"> </span>From the grace she has shown always, to the courage and inspiration she demonstrates every day.<span style="mso-spacerun: yes;"> </span>One older gentleman through his own tears told her how much he’s wanted to talk to her, but he shared how hard it was for him.<span style="mso-spacerun: yes;"> </span>I don’t know if everyone was crying our not, but I know I wasn’t the only one.<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">This has been a particularly sad month for me.<span style="mso-spacerun: yes;"> </span>Christmas preparation for the kids has always been handled by Marcia.<span style="mso-spacerun: yes;"> </span>Marcia’s sister, Cindy, was here a few weeks ago and she did so much in this area while she was here, and with occasional text message reminders to me to complete the preparation, I was ready.<span style="mso-spacerun: yes;"> </span>But I clearly felt the last minute stress a procrastinator feels this time of year, and clearly less joy than previous years.<span style="mso-spacerun: yes;"> </span>And the massacre in Newton, CT hit me particularly hard for the same reasons it hit everyone else who has young children.<span style="mso-spacerun: yes;"> </span>While I can’t make sense of this, I think for me, this goes deeper than just what happened that day.<span style="mso-spacerun: yes;"> </span>I also see things like this now through the lens of a survivor.<span style="mso-spacerun: yes;"> </span>Those families in Newton need help (goodwill??) and the world is providing support through prayer, notes, donations, and so much more.<span style="mso-spacerun: yes;"> </span>My family has been the beneficiaries of help and support too.<span style="mso-spacerun: yes;"> </span>We’ve needed it.<span style="mso-spacerun: yes;"> </span>Neither situation can be handled without help.<span style="mso-spacerun: yes;"> </span>I know our situation is not the same as Newton.<span style="mso-spacerun: yes;"> </span>It’s not as emotionally charged or shocking, and it’s not played out 24/7 in the media.<span style="mso-spacerun: yes;"> </span>Marcia is still here, though not with the abilities she once had.<span style="mso-spacerun: yes;"> </span>But we are experiencing a dramatic change, as those families in Newton are.<span style="mso-spacerun: yes;"> </span>Life won’t be the same for the families who lost a son/daughter, brother/sister or a mother.<span style="mso-spacerun: yes;"> </span>Marcia too is a daughter, a sister and a mom, and we’ve lost part of her in a way that could not have been prevented and can’t be explained.<span style="mso-spacerun: yes;"> </span>While I mourn for those kids and heroic teachers, I think about those that lost someone and have to go on.<span style="mso-spacerun: yes;"> </span>And I hope they continue to get the level of support my family has been given after the media leaves town.<o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">Back to Sunday… Marcia wasn’t trying to announce to the group she has Alzheimer’s, but that is the message that seemed to get through.<span style="mso-spacerun: yes;"> </span>She wanted to say that I have been there for her in the spirit that goodwill was being discussed.<span style="mso-spacerun: yes;"> </span>I’ve always known how much Marcia has appreciated what I’m doing for her, she just can’t communicate it very well, nor does she do so very often.<span style="mso-spacerun: yes;"> </span>Sometimes I wonder how much she is aware how her illness is affecting me and the kids.<span style="mso-spacerun: yes;"> </span>What it took for her to speak up awes me, even days after it happened.<span style="mso-spacerun: yes;"> </span>I told her how proud I was of her, but she just said “you”.<span style="mso-spacerun: yes;"> </span>She is not as cognitively sharp as she was even a few months ago, but she was completely in tune with the conversation and felt strongly enough to share her appreciation.<span style="mso-spacerun: yes;"> </span>And I think I needed to hear her say it.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span lang="EN" style="mso-ansi-language: EN;">There are clearly times that dealing with Marcia’s illness is stressful.<span style="mso-spacerun: yes;"> </span>And then moments like this happen that strengthen my resolve to see this through as best I can.<span style="mso-spacerun: yes;"> </span>In spite of her disabilities, Marcia can still inspire me, and make me a better, stronger, more aware husband, father, friend and citizen.<span style="mso-spacerun: yes;"> </span>And ensure goodwill will live on in my life.<o:p></o:p></span></div>
Anonymoushttp://www.blogger.com/profile/07907897322481359865noreply@blogger.com0