Sunday, January 25, 2015

Year 4 Progression update

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.  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.  I don’t put a lot of stock in the stages as sequential steps in the disease.  I’m not aware of anyone who fits neatly into each stage and who moves predictably from one stage to the next.  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.  Bottom line is that it doesn’t matter to me what stage Marcia is in.  Today is the only thing that matters, and no one really knows what tomorrow or the day after will bring.  And the most frustrating part of Alzheimer’s, there’s nothing we can do to prevent what’s going to happen anyway.


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.  Progression of the disease varies by person.  The average life expectancy is 8 years from diagnosis, but some live 20 years or more with Alzheimer’s.  There’s a theory that those with Early Onset progress faster than those diagnosed later in life.  Our neurologist believes progression tends to be steady.  Could be fast steady, or a slow steady, but there doesn’t appear to be stabilizing periods.  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.   While I don’t have a frame of reference to compare Marcia too, I would say her progression on on the faster side.  Marcia and I recently had an appointment with her neurologist in New York City.  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.

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.  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:

·         Speech (aphasia) has always been front and center in Marcia’s Alzheimer’s presentation.  Aphasia is still very much the dominant characteristic.  While she seems to know what she wants to say, she really cannot communicate with us at all.  Not only does she have extreme difficulty verbalizing anything, it’s become very difficult to get her to give even yes or no responses.  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.  If she wants something, I do my best to guess.  I wish I could remember the last conversation we’ve had, but it’s been years.

·         18 months ago, Marcia ran two 5k races.  In May, she ran part of the Branchburg Race Against Alzheimer’s (unplanned, but she was determined to try).  Today, she has difficulty walking up the stairs to our bedroom.  I don’t think this is entirely Alz related.  Hip arthritis and spinal stenosis are likely causes too, but there is some dementia contributions.  Maybe not Alzheimer’s.  It could be Lewy Body Dementia that is factored in here.  In addition to pain or discomfort, she also tires easily, which prevents even walking through the supermarket on a basic shopping trip.

·         Her vision has become significantly impaired.  By this I don’t mean she needs a new pair of glasses.  Her vision changes appear to be in how she processes images.  Since she can’t tell us what she sees, we can only guess that she’s not seeing things the same way we do.  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.  She seems to do okay during the day, when she’s not tired, or in well-lit areas.  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.  We now have a wheel chair/transport chair to help get her around in these situations.

·         Posture:  Marcia cannot stand up straight.  Often, her chin is firmly against her chest.  She’s been going to physical therapy to help straighten her spine and loosen the muscles in her neck.  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.

·         Self-care:  As hard as Marcia might try, she just cannot do things for herself.  I feed her breakfast and dinner every day.  While she can no longer utilize silverware without assistance, she can eat with her hands (sandwiches and fruit).  Her prescription drugs need to be crushed and put into oatmeal, applesauce or yogurt, which she takes in the morning and at night.  She can’t get dressed or undressed and she can’t shower or brush her teeth without assistance.

Marcia’s cocktail of illnesses include:  Early Onset Alzheimer’s, Lewy Body dementia, Primary Progressive Aphasia (PPA), Myoclonus, Epilepsy, anxiety, depression, breast cancer, arthritis and spinal stenosis.  We’ve stopped giving Marcia her breast cancer medication after consultation with her oncologist.  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.  Seizures and anxiety are effectively managed by Keppra, Klonopin and Zoloft.  But Alzheimer’s, PPA and Lewy Body Dementia are not treatable.  And that is painfully obvious.

Sunday, November 23, 2014

Caregiving and baseball

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).  One said something like “when you’ve met one person with Alzheimer’s, you’ve met one person with Alzheimer’s”.  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.  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.  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?  I do what I do based on doctors suggestions, what I read, what I feel and what I have time to do.  Marcia has several doctors (neurologist, oncologist, an orthopedic surgeon, and even physical therapists).  And they don’t always agree on how to treat Alzheimer’s, cancer, spinal stenosis and arthritis together.  Often one doctor thinks we should do something that one of the others says we should not.  My medical training consisted of watching every episode of MASH at least five times, and most episodes of ER.  This, of course, totally qualifies me to make decisions on surgery, medications and treatments.  So I often do make the final decision.  And I’ve made mistakes.  I’ve failed. 


The second quote says that I should be honored to be a caregiver, because I am the answer to someone’s prayers.  While I believe that (and believe I have prepared my whole life for this role), I do NOT feel honored.  I am burdened, stressed and alone.  And I have failed.  Often.  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.


So what is the connection between caregiving and baseball?  I think the connection is the high rate of failure.  Baseball “stars” get a hit 30% of the time.  The other 70% of time, they do not.  They “fail” to get on base and have calibrated success based on what others have done, not on always succeeding.  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.


I can’t say I’ve failed 70% of the time, but I have failed often.  Have my kids received the parenting that two parent households give?  They have not.  Have I performed at work to the level required of my job?  Nope. In fact, I recently lost my job and will no longer be working in a few months.  Have I done what I need to for Marcia as fast and as thoroughly as she deserves?  I wish I could say I have.  I’ve not done things on the same timeline as some feel I should.  Have I worked on my relationships with people I work with, went to school with, or have become close to over the years?  I haven’t because I cannot.


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.  Yet in some ways I am that baseball superstar.  Failing often, but in aggregate, I’m making the all-star team.  And I’ve been able to accept my failings.  Failures that others might see in any given area.  Did I deserve to keep my job?  No.  My company had to pick the best people for the job and I wasn’t the best.  Can I blame Alzheimer’s?  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.  I’ve tried to keep work and personal life separate, but I’ve not succeeded.  Have I frustrated friends and family by not getting home health aide sooner?  I have.  Have I made all the decisions others felt I should regarding Marcia’s care.  Probably not.  But I have made the best decisions with the information I had, in the time I was able to carve out.


I am the only one who could see all of these “lives” I’ve lived.  And the truth is, I feel good about what I’ve prioritized.  I feel good about my choices and decisions.  I’ve wasted little time second guessing myself or worrying what others think of my “performance” in any given area.  While I’m not at all satisfied that I’ve given my employers, kids, and Marcia all they deserve.  I feel like I’ve performed 30 hours of work every day.  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.  At least not in my eyes.

Taking a break/Feeling blessed

By taking a break, I’m referring to my time away from blogging.  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.  There’s so much I could write about Marcia’s progression, and I will cover this in future blogs.  Beyond Alzheimer’s, the last couple of months have been unusually busy.  I just haven’t taken the time to write.  And while I haven’t lost the desire, I haven’t had the drive to do so. 


Since I last wrote here, our son graduated middle school and a week later, our daughter graduated high school.  Two really awesome milestones that also meant we are now moving on to high school and…. college!  Honestly, I think middle school graduation has been the surprise emotion for me.  With all the college search, application and preparation, we’ve been thinking about college for a several years.  But in a blink of an eye, we were done with middle school.  Forever!  I just don’t think I was totally prepared for this.


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.  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.  While Marcia went to Maine with her sister for several days, we really did not have a summer vacation.  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.  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.  I did take a few days to go to the beach with my son, my only fun/relaxing vacation all year. 

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.  That is not to say my life is one to be envied.  I can’t imagine anyone wanting to trade places with me today.  But I am blessed because our situation is not nearly as bad as others.  I’ve done most of my writing over the last six months on Facebook, where I joined an Early Onset Alzheimer’s support group.  Over 2700 members posting questions, venting, offering advice and sharing their stories and frustrations.  It’s a closed FB group that has helped me make decisions, and left me amazed at the devastation Alzheimer’s creates for caregivers.  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.  I’ve heard from people who are on the verge of breakdowns, depression and utter despair.  Many are living paycheck to paycheck and are faced with choices I could not imagine facing.  Do they pay bills or buy food?


I’ve read of a guy recently diagnosed with early onset Alzheimer’s who has 5 kids and is only 32 years old.  I’ve heard from a woman who was diagnosed at the age of 27.  I read of a 19 year old college student who is the sole caregiver for her 50 something father.  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.  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.  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).  They have been awesome!


What I’m dealing with has changed the course of my life completely, but others have it much worse than me.  And besides all of this, Marcia is still making this as easy on me as one can.  I’ve read of situations in the FB group where aggressive behavior, anger, denial and stubbornness are what other caregivers face.  Marcia is none of those things.  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.


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.  Personally, I’m experiencing failure like I’ve never seen in my life.  I’m experiencing caregiving like I never imagined I would be doing.  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.  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.  But I am blessed to have had the number of good years with Marcia that I have had.  I’m blessed that Marcia is such a sweet and gentle person whom I admire so much for her courage and perseverance.  I’m blessed to have supportive family and friends.  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.  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.  And I am blessed with two kids who have shown an amazing amount of strength to deal with so much at such young ages.


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.  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.


There are times every week where I say “my life sucks”.  Sometimes it’s not my life, but it’s me that sucks (more on that in the next post).  But those statements are preceded by bad moments.  There are good ones too, every day, and I have much to be thankful for.  And I know that better days are ahead…..

Saturday, June 14, 2014

Another Diagnosis. Really?

On Monday, June 1 Marcia and I went to NYC to meet with Dr. Honig, her neurologist.  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.  For the last several appointments, we’ve had discussions about Marcia’s medications.  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.  In November, we started on a drug called Keppra, which is meant to control the seizures that hospitalized her last October.  Apparently it works great as I forgot to give Marcia her ½ pill evening dose the night before her appointment.  Monday morning she had several of the myoclonic tics that plagued her over the last two years.  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.  Thankfully, about 20 minutes after she took her pills, the “tics” stopped.  Dr. Honig said it’s pretty clear the medication works.


Dr. Honig then did the normal physical examination, including asking her several questions.  He and I both think she generally knows what she wants to say and knows the answer to his questions.  She just cannot articulate them.  Marcia can’t really say anything more than a one word answer and that word is more often than not, unrecognizable.  This was not a surprise to me as I’ve seen the steady degradation in her communication skills.  However, he noticed two things that were different, or had changed since our last visit.  First, he noticed an asymmetry to her walk.  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.  He also noticed more stiffness in her muscles.  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).


I’ve read up on LBD over the last week or so, and frankly I’m not sure what to think.  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.  Not everyone has all the symptoms used to describe these diseases and they can show up differently in each person.  I sort of feel it’s up to me to draw my own conclusions.  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.  


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, like slowness of movement, difficulty walking and lists “runny nose” as a common feature.  Marcia does have these physical challenges that aren’t easy to describe by AD alone, and we go through a LOT of tissues.  But hallucinations, violent behavior and depression are often used to describe LBD, and Marcia doesn’t have these symptoms.  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.  Dr. Honig says people with AD can have LBD, and people with Parkinson’s are known to have LBD too. 


So what does this mean?  Like AD and PPA, there is no cure for Lewy Body dementia and it’s progressive.  There are medications to help control LBD, but they have some potentially significant side effects.  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. 


Sunday, March 23, 2014

Branchburg Race Against Alzheimer's - May 18

Last week Marcia and I went to a fundraiser for Autism in the town where we live, Branchburg, NJ.  This was the first time in several months Marcia and I have been out socially outside of our kids sporting events.  Marcia had a really nice time, and it was so nice to see her smile and enjoy herself.  We didn’t stay very late, and Marcia was asleep minutes after we got home. 

Longtime friends of ours, whose son Jack was diagnosed with autism 8 years ago, have been more than just good friends to us.  Frankly, they have been mentors and an inspiration in how they’ve handled diversity and made fundraising to support autism their mission.  We’ve seen Jack grow and make incredible strides in every way imaginable.  Before dinner, Jack took the microphone and spoke to the group with such confidence.  He did a fantastic job.  You could see the joy in the faces of everyone who saw him speak.  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. 

As Shannon spoke, the differences between autism and Alzheimer’s hit me pretty hard.  The numbers associated with both are staggering, and as Shannon said, “it takes a village” to raise a child with autism.  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”.  She couldn’t have been more “right”.  It’s taken a village to help with Marcia too.  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.  Jack’s family has worked so hard, raised a LOT of money for at least two special needs schools, and have seen Jack respond.  I’ve seen Marcia go the other direction.  And I can’t do anything about it.

 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.  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.  In addition to local support, we saw over six hundred people participate.  Donations came in from twenty-two states and three countries, raising over $58,000 for Alzheimer’s Disease research!

 The second Branchburg Race Against Alzheimer’s 5K Race and 1 Mile Fun Run/Walk, will take place on Sunday, May 18, 2014.  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.

Branchburg Race Against Alzheimer’s details:

Date: Sunday, May 18, 2014
Time: 9:00 am
Location: White Oak Park
Branchburg, New Jersey

Please visit the event website,  Please “like” and visit the event Facebook page: Branchburg Race Against Alzheimer’s. Thanks for supporting this great cause! 

The changes I’ve seen in Marcia over that last year have been dramatic and heart breaking.  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.  But this fundraising event was a real highlight of the year last June and I’m hoping for another great turnout.  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.  We would love to see a great turnout for race day.  If you cannot come in person, please consider a donation to help find a cause!

Sunday, March 9, 2014

This was a really good week or so! And it wasn’t….

Almost every day I wake up in a good mood.  And nearly every day, at some point, I talk myself off the ledge, figuratively speaking.  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.  But the last week or so really did exemplify the range of emotions and the highs and lows that have become more commonplace.

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.  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.  And if I spent more time dwelling on this, I’m sure I’d spend more time “down” or depressed.  One slip up in any of these areas might have ruined my day prior to Marcia’s illness.  Today, it might not even be the hardest thing I have to deal with on a given day.  One day last week I got some news that was hard to hear.  But on this particular morning I got a later start because Marcia had a harder time than normal getting dressed and needed my help.  While my “news” could have made me feel sorry for myself, I just didn’t.  I’ve seen others feel victimized in similar situations.  Why doesn’t the sting of any particular situation last?  I think of the challenges Marcia faces every day. And on this day she couldn’t tie her own shoes.


This last two weeks were transition weeks in the sports world for our kids.  Despite the snow on the ground and the cold temperatures, our winter sports have ended and the spring schedule is about to start.  Riley, a senior in high school, had her last two fencing meets.  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.  If you’ve ever played a sport in high school or college, you know the emotions that surround your “last game”.  I think I felt it more than Riley did.  Ryan also finished his basketball season, losing in the finals of his in-town league.  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!).  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).  After the game, he said that might have been his last organized basketball game.  Both of these “lasts” are a sign that both are growing up.  Too fast.  But they are supposed to start lacrosse this week, and Ryan’s spring soccer season is supposed to start this week too.  If only the snow would melt and temperatures would stay above freezing, we can get outside again.


There was more to these last few weeks.  One of the things I wrote about in my last blog was about “red tape” associated with insurance and disability claims.  Almost five months after first making a claim for Long Term Disability insurance, our claim was finally approved this week.  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).  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.  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.  They (and she) were fantastic to work with, proactive and assertive to move our application forward.  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.  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).  Marcia could answer almost none of her questions.  She didn’t know the day of the month or even the year, and she couldn’t spell her name.  Marcia was asked how many presidents of the US she could remember.  She could remember two:  “Barack and Carter”.  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.


I’ll end this entry with a few really awesome events.  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).  Amy had asked Ryan if that would be okay with him, and after a day or so, he said yes.  She put a committee together to plan t-shirt designs and rally the school to support the race.  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.  But I was told the kids were very supportive to him and are very excited to help publicize our upcoming race.  Last week, Ryan’s teacher invited me to the 8th grade assembly later this month, where Ryan will talk to the whole class about the race and Alzheimer’s disease.  I can’t tell you how proud I am of Ryan.  I know this is not easy for him.  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.  (Plug for teachers here!  Riley has also had several teachers help her through this, as well as the college application process!)


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.  We also found out the CMG and family members of CMG are running two satellite races in Houston and Orlando!!!!  CMG is a company I’ve known well for many years and just love everyone I’ve met there.  Their president, Stew Bishop has been a boss, I’ve been a client, but more than that, he’s been a friend and has supported us in our fight from the first day in so many ways.


And finally, Riley was accepted into the physics program at Drexel University this week, with a fantastic merit based scholarship.  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.  She has applied to 9 schools and heard back from two, accepted by both.  Riley’s entire high school career has been in the shadow of Marcia’s diagnosis and progression.  What she’s done, all that she’s accomplished…..  Wow!  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.  And this one is relatively close to home…..

Thursday, February 6, 2014

Day Center (acceptance), Seizures (under control) and "red tape"

I received a Christmas card in the mail recently (Feb 1st), 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. 
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.

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.

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.

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. 

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.

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.

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!