Epilogue – Life after Alzheimer’s

I indicated that I would write one more blog entry in my last post, which I published almost 3 years ago.  The purpose of this blog from the beginning was:  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.  As for family and friends, since Marcia passed away there’s no reason to go to this blog anymore.  I suspect most of the 45,000 hits came from family and friends.  But I imagine nearly all of those who have visited and read this blog since Marcia passed away fall into the second camp.  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.  

A third purpose for writing emerged over time. I found great value, if not enough time, in putting thoughts and experiences in writing.  Blogging was a cathartic release of sadness, shock, frustration and gratitude.  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.

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.  While Marcia was sick, my caregiving role was to take care of her and protect her dignity as best I could.  It was exhausting trying to balance caregiving with working and parenting, yet we managed to get through it with few regrets.  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.  For me and my kids, our lives have not stagnated since losing Marcia.  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.  We have accepted the reality that Alzheimer’s took Marcia from us and time doesn’t stand still.  The fact is, we are no longer caregiving and coping with all the stresses associated with that.  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.  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.

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.  We have lived through many “anniversaries” over the last three years:  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).  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. 

So how are we doing now?  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!  I’ve seen my former life (work, marriage and social life) completely turn over.  The only constant is my kids, and they aren’t really kids any more, having the audacity to grow up.

I worked for a company where the people were amazingly supportive and compassionate.  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”.  My gratitude for my former employer and those that helped keep me around is off the charts.  Work, and the people I worked with were one part of my life that helped me survive the devastation of Alzheimer’s Disease.

The social life Marcia and I shared has mostly dried up and disappeared and a new, different one is emerging.  This is not meant to be an indictment on anyone but me.  I found that my social life was really Marcia’s.  Our friends were more my “friends-in-laws”.  Wonderful people that I loved and still love dearly.  It just seems life moved on and I didn’t do enough to keep that old life alive.  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.  I still see this community often and enjoy every moment.  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.

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.  Marcia was just better at some things than I was/am.  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.  Nothing in my life has made me feel quite so inadequate given the responsibility of being a parent.  When Marcia was first diagnosed, her biggest concern around her diagnosis was not her fate, but not being there for our kids.  And they’ve lived the disadvantaged life of a one parent household during such important times in their development and formative years.  My parenting and my kids’ growing up has been a source of many sleepless nights for me!

Finally, there’s Karen, my new wife and longtime friend!  Karen and I have known each other since 1979 when we were college freshman.  We met as a result of her friendship with a girl I went to high school with.  Karen was always a special friend, though we never dated, and we maintained contact throughout the years, mostly via Christmas cards and birthday acknowledgements.  I started dating Karen several months after Marcia passed away and we married last August.  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.  Was this a date?  It was “just” lunch, but it almost turned into dinner too.  Then we met in New Hope, PA for dinner a week or so later.  And we found ourselves meeting weekly in New Hope, here in New Jersey or close to Karen’s home in PA.  Was I ready to date?  I wasn’t even close to jumping into the dating pool.  My priorities were very much tied to my kids in the aftermath of Marcia’s death.  But sometimes things happen that aren’t planned.  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.  The ease of talking to Karen that day was special and just like it was in college.   

Karen had been following this blog and was well aware of Marcia’s illness.  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.  While I don’t know this for sure, I truly believe Karen saved me.  She was always easy for me (an introvert) to talk to and our relationship was just so natural.  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.  Spending time with Karen was something I looked forward to and kept me from the life of isolation I almost seemed to seek.  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.

Karen and my kids had an instant connection and she’s been a phenomenal presence in my kids’ lives.  She’s made great sacrifices to be with ME.  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.  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.  Karen has made an unreasonable need of mine, acceptable.  But more than anything else, she has shown me love and happiness I wasn’t sure I’d find again.  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.  We look forward to moving in a year or so to a place where we can build “our life” together.

My kids are doing very well.  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.  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. 

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.  Both have weathered a storm no kid should have to experience without any big detours.  I’m not sure they have grieved as they might eventually grieve.  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?  It’s hard to say, and it’s probably why I worry as much as I do.  They have struggled at various times, yet their strength is evident and they are a constant source of inspiration and pride for me.  They are becoming adults, they laugh and enjoy life and are planning for their futures.  Both are “normal” kids in different stages of life without Marcia.  It’s still very hard for my son to talk about his mom, and I suspect and hope this will change over time.  My daughter does a lot to honor Marcia and to support our fight to end Alzheimer’s in their lifetime. 

We have found a new normal, and it’s better and worse than the old one.  And for the length of this post, one might assume I’ve got things all figured out.  Not even close!  I believe figuring things out is a lifelong pursuit and new lessons and thoughts come about all the time.  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.  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.  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.  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.  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.

I don’t intend to write anything more here.  For those that come to a site like this to learn about Early Onset Alzheimer’s, I hope this is helpful.  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.  However, I believe that the Alzheimer’s journey doesn’t mean the end for everyone affected.  Someday there will be a cure, or at the very least a treatment.  But one can find happiness again.  I know I have!

The Official diagnosis – Alzheimer’s Confirmation

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.  And through the help of many, and generosity of many more, over $160,000 has been raised in Marcia’s honor or memory.  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.  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.  But we also wanted her brain to be used for research to help learn as much about diseases of the brain as possible.  Per Marcia’s wishes, we had hoped to donate as many organs as we could to help others in need.  Unfortunately, Alzheimer’s disease makes all other organs, other than the brain, ineligible for donation.  But her brain will hopefully help unlock some of the mysteries of Alzheimer’s for future generations.

                                        

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.  Throughout Marcia’s illness, her neurologist had never given an absolute diagnosis.  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.  Over the last year we started to see signs that maybe she had Lewy Body Dementia, or maybe she had both.  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.  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.  However, this was not what they found after examining Marcia’s brain.  I was told that Marcia had a pure, classic case of severe Alzheimer’s disease.

Alzheimer’s disease is caused by the formation of plaques and tangles.  Plaques are deposits of a protein fragment called beta-amyloid that buildup in the spaces between nerve cells.  Tangles are twisted fibers of another protein called tau that build up inside cells.  Marcia’s buildup of plaques and tangles were “dramatic and extensive”, found throughout the brain, widespread and severe.  Whereas a plaque count of 15 – 20 is considered high, Marcia’s count exceeded 30.  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?  They did not find more or less tangles in parts of the brain that control communication/speech vs other parts of the brain.  I’m certain this is why this disease is so hard to accurately diagnose when one is still living.  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.

 

So now we know definitively what caused Marcia’s death.  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?  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.  If one has this gene, developing the disorder is certain.  Would you want to know if you had the gene?  “Alice” had three kids who did not share the same perspective on testing.  Two wanted to know and were tested, one result came back positive for the gene, the other negative.  The third didn’t want to know.  Just writing that sentence gave me chills.  One case of despair, where one can see their fate and the loss of dignity, independence and knowing what is waiting for their family.  One case with incredible joy, and at the very least incredible relief.  But maybe guilt too?  And one not wanting to have their fate determined so young.  I would want to know, but only if the result was negative.  This deterministic gene is very rare, with only a few hundred families known to have this gene worldwide.  In these families, multiple family members in every generation are typically affected.  Marcia’s family history of Alzheimer’s would not suggest a high likelihood this deterministic gene is present. 

 

“Risk” genes increase the likelihood of developing the disease, but do not guarantee it will happen.  There are as many as 33 genes that contribute to developing Alzheimer’s.  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.    As many as 20 to 25 percent of Alzheimer’s cases are related to the APOE-e4 gene.  Everyone inherits a copy of some form of the APOE from each parent.  Those who inherit one copy of APOE-e4 have an increased risk of developing Alzheimer’s.  Those that inherit one from each parent have an even higher risk, but not a certainly.  Marcia may have had APOE-e4, but she might not have.  It’s doubtful our kids would inherit two of these genes since my family history has no known Alzheimer’s cases.  So what would be gained by testing further?  A finding that one gene was present and nothing more than a slightly higher risk?

 

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.  Imagine a slot machine with 33 possibilities and they all hit 7?  It’s not quite that simple, but it does illustrate that some combinations of those 33 genes resulted in severe Alzheimer’s disease.  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.  Finally, the last factor in deciding to test or not:  What would we do if the test came back positive in Marcia?  It wouldn’t mean my kids would inherit the gene, but their chances would be 50% that they would (or would not).  And what would you do with that knowledge?  There is still no cure, no way to stop or slow the progression.

The final chapter on Marcia’s illness has not been written.  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.  She beat cancer, lived through arthritis and spinal stenosis and she watched herself deteriorate rapidly.  And she never lost her smile and passion for her family and friends.  She has inspired me to live the Good Life, appreciating all life has to offer.  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. 

I plan to write one more blog entry several months from now.  And this one will communicate how I am doing and how my kids are doing. How have we adjusted?  What turns our lives have taken having gone through this experience?  I have often thought God put me in Marcia’s life for a reason.  And she was put in my life for a reason.  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.

Remembering Marcia

It’s been 5 weeks since Marcia passed away.  Many sad and emotional occasions to remember Marcia have come and gone, while some have been happy and festive.  Marcia’s visitation and memorial service took place the weekend starting Friday, April 24th.  The entire weekend was a tremendous celebration of Marcia’s life that I’m certain would have made her proud and happy!  We used a combination of traditional and non-traditional funeral/memorial service events.  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.  They graciously allowed us to use their facility which allowed for a more festive feel than a traditional more somber funeral home visitation.  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.  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.  Pictures and videos of Marcia’s life were placed throughout the room and snacks were served.  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.  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.  The evening was very upbeat and very social – Marcia would have loved it!

 

Saturday afternoon, we had a traditional Presbyterian memorial service.    While my daughter and I both spoke at the service, Riley was so impressive!  As a 19 year old college freshman, she showed such poise, confidence and maturity beyond her years.  She also did a wonderful job of honoring Marcia with humor, insights from a daughter’s perspective, and tugging the perfect emotional chords.  After the service, we had a family/close friend’s dinner at Neshanic Valley Golf course.  This continued the celebration of life theme, an event Marcia would have enjoyed so much.  Just before sunset, we saw about a half dozen hot air balloons not far from the golf course.  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.  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.  Coincidence this happened tonight?  Probably, but what a perfect night for the balloons to go up.

 

While the memorial weekend was a near perfect festive celebration, adjusting to life without Marcia has had many emotional moments.  As the adrenalin rush of the weekend faded, life did begin a “new normal”.  No more memorial service planning, family and friends returned home, Ryan and Riley went back school, and I’ve gone back to work.  Life without Marcia will take some getting used to, though it still seems her death is not yet real.  Three events since the memorial weekend were much harder to deal with:

·         The day after the memorial service, Marcia’s sister, Cindy went through all of Marcia’s clothes.  Cindy cleaned out all of Marcia’s drawers and closets and bagged up 8 large trash bags full of clothes to donate to charity.  Cindy took some shirts, my daughter took a few things, as did some of Marcia’s friends.  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.  This was really the first thing we did that made Marcia’s death seem real.  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.

·         April 30^th would have been Marcia’s 55^th birthday.  I expected this to be high on the emotional scale, and it was, but not unmanageably so.  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.  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.

·         Last Sunday was Mother’s Day.  With Riley being away at college, this would have been different even if Marcia would have been here.  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.  Mother’s Day should be celebrated and it’s a much needed day to honor my mother, and Marcia’s mother too.  It just brought up more emotions as being a mom was the role Marcia cherished more than any other role. 

The emotional highs and lows of the last few weeks are sure to continue into the foreseeable future.  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.  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.  And I don’t think I could have prepared for how Marcia’s death would really hit me.  The relief I feel for her that her suffering is over is the consistent emotion I can get my hands around.  The “missing her” emotion, even though I’ve missed so much of Marcia before she died, is so much harder to explain and understand.  And while my kids will see a return to a normal life rather quickly, I will need to find a new normal without Marcia.

She bravely fought an unwinnable fight: 04/30/1960 – 04/07/15

Marcia passed away at 1:15 a.m. on Tuesday, April 7^th.  Her graceful, courageous and inspired fight against Alzheimer’s/Lewy Body Dementia mercifully came to an end.  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^rd.  But the last month was particularly hard on her, and those that cared for or saw her regularly. 

                        

I don’t have a handle on my emotions yet.  I knew this day would come once the diagnosis was made.  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.  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.  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.  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.  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.

 

It will be a few months before we know exactly what disease Marcia had.  Clearly she had Primary Progressive Aphasia, but whether or not she had Early Onset Alzheimer’s is not so clear.  Over the last month of her life, her symptoms more closely looked like Lewy Body Dementia, and it’s possible she had both.  I will write what might be a final blog entry once have all the facts.  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.  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.  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. 

                                                          

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.  Once under hospice care, she was taken off all medications and seemed more alert than I had seen her in weeks.  But she didn’t eat and continued to lose weight and strength.  The last four days of her life, she never left her bed and was given increasingly frequent doses of morphine to make her comfortable.  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.  I thought she would minimally live in a LTC unit for a few years.  Never in my most pessimistic thoughts did I think I would be planning a funeral before her 55^th birthday. 

 

As I reflect on Marcia’s life, she was a blessing to me and to so many others.  We will celebrate Marcia and the life she lived prior to life with aphasia and dementia.  We will celebrate the way she handled herself throughout the course of her disease.  We will be grateful that Marcia seemed to control her own fate at the end.  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.  Once Marcia was told she likely had Alzheimer’s 4 years ago, she knew what was coming in the years ahead.  And she lived those years with as much grace as possible.  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.  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.  And I think about her all the time.

Can’t keep up with the pace of change – Hospice

The pace of change in Marcia continues to perplex and overwhelm me.  Less than 3 weeks ago Marcia was living comfortably at home, though under 24 hour supervision.  Sixteen days ago Marcia was in the hospital, which was the last time she was in our house.  Eleven days ago Marcia was in the sub-acute unit of Foothill Acres, a long term care facility in Hillsborough NJ.  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.

                     

Marcia has not really eaten and she doesn’t drink much since she’s been at Foothill Acres.  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.  She’s lost more than 20 pounds since January and more than 30 pounds since the fall.  Her sodium levels are dangerously high and the doctors ordered IV’s to help get her sodium levels under control.  The IV’s might work if Marcia wouldn’t pull the tubes out.  I watched them try to put another tube in, without success.  They could not find a vein that hadn’t already been punctured or bruised.  Marcia’s doctor called me at home to go through options for Marcia.  She said they could put in a pic line (spelling?), which would require hospitalization.  Pic lines are usually for lengthy use and could help with hydration.  But without other nutrients needed through food, Marcia would develop other complications without regaining cognition.  Marcia is suffering.  She’s suffering plenty both physically and mentally.  She doesn’t acknowledge me or other friends and looks like she’s in constant pain.  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.

 

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.  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.

 

Over the last four years, I have adjusted to the steady progression of her disease because the daily changes have been relatively subtle.  The last 3 weeks have been much harder on me because the changes have been so dramatic.  With the tremendous support of Marcia’s family, my family, and countless friends, I know this is the right decision.  But with each change is another, deeper feeling of grief.  Both grief and relief.

 

Home to hospital to Long Term Care Facility in 7 days

I still don’t know what happened!  In hindsight, maybe there were signals I missed.  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.  One of those signals I wrote about in my last post, which described the “cracks in her strong façade”.  The crying and the occasional aggression towards me were appearing, but almost overnight, things changed in every aspect of her life.  Crying became a constant and happened several times every day.  Marcia virtually stopped eating and drinking, and she went from predictable 9:00 – 6:30 sleeping to hardly sleeping at all.  And in one day, she went from wanting to hug me, to an almost rage at the sight of me.  She was having hallucinations and was hospitalized for five days for what the hospital called “delirium”.  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.  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”.  I found that to be true in our case too.  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.  I haven’t felt these emotions, grief maybe, since she was diagnosed four years ago.

 

Two weeks ago on a Friday, Marcia went to the Day Center.  Once home, she cried often, then laughed, danced in our living room with a friend, then cried some more.  While I’ll never know what’s really happening with Marcia, I believe the dancing and laughing are remnants of who Marcia really is:  a fun, upbeat and positive person who loves music.  I believe the crying is cognitive awareness and severe depression over what’s going on with her.  I think her tears are frustration and self-grief over what is happening to her and her family.

 

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.  Then on Sunday, she went from hugging me, to hitting, pushing and pinching me.  Her sleeping pattern changed and she got up 5 times between midnight and 6:00 a.m. 

 

The next night she wouldn’t let me touch her and wouldn’t come upstairs with me.  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.  When she wasn’t sitting, Marcia wandered around our living room, hallway and laundry room knocking pictures over and pulling things off the wall.  I sort of followed her around, hiding pictures, knives, knobs from the stove, and keeping her away from the staircase.  Finally she fell asleep on the couch around 4:00 a.m. and I got a few hours of sleep too.

 

The next night saw more of the same.  Aggression towards me, throwing things and an outburst towards my son left me angry at Marcia and wondering what I should do.  I called the Alzheimer’s hotline and they suggested I call 911.  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.  I was sure Marcia would have to sleep this night having not slept much two nights in a row.  The night started off promising with Marcia sleeping from 8:30 until almost midnight.  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.  Three nights with virtually no sleep, little food or water and significant increase in hallucinatory behavior.  At least confined to our bedroom, I worried less about what she was doing though I couldn’t even try to sleep.  The next morning I called 911.

 

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.  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.  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.  It now looks more like Dementia with Lewy Body than typical Alzheimer’s.  DLB is another kind of dementia with a different look, including slumping posture, hallucinations, rigid muscles and shuffling walk.  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.  Her neurologist will see her in a few weeks, but has had DLB on his radar screen since June.  The outlook is no different from Alz, and she might have both.  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. 

 

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.  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.  She doesn’t speak but recognizes friends and greets them with a smile and sometimes a hug.  And she still cries every day and has a stuffed animal that she has torn apart already.  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.  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.  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.  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.

 

One last point to this incredible turn of events has to be around the support I have been given.  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.  I will say that we have experienced the disappearance of some friends.  But we are truly blessed in the PRESENCE of friends.  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.  Our family has had wonderful support through meals, visits, cards, emails and Facebook postings from our church, friends and coworkers.  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.  I am humbled by the support, more than I could ever put into words.  All I can say is “thank you” all.

At least it’s warm in Hell

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.  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.  Alzheimer’s has tested my temperament and angered me countless times.  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.  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.  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.  My life has been blessed in many ways and I can’t really compare it to Hell, but I am angry.  Angry because:

·         Marcia is “forcing me to dance”.  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.  Well Marcia really doesn’t watch TV anymore and it’s becoming harder and harder to find things that interest her.  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.  Of course she doesn’t force me to dance, but I dance with her often even though I hate to dance.  But I love seeing her smile and laugh (at me???), and at least (almost) no one else is watching!!  My son has walked in on us several times.  The trauma I’ve put this boy through….  Marcia used to be a great dancer, but no more.  Her motor skill deterioration limits what she can do and she’s probably a tenth the dancer she used to be.  Of course this still makes her twice as good as me!  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.  No such luck…  Once “The Bump” went out of style in the 70’s, I had no dance moves left.  I think I’m going to teach myself how to Moon Walk soon. 

·         The difficult moments are increasing in frequency and I’m feeling several weeks of cumulative frustration, anger and sadness.  My last post talked about Marcia’s progression, which is at the core of today’s rant.  I’m aware that if I sat back and really thought about my situation, I would be depressed.  I’ve lost my wife, my job and career and any semblance of a social life.  Sleep, exercise and spontaneity are not where I wish they were.  Probably most regrettable, and something I won’t get back is this:  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.  Honestly, I am less stressed when they aren’t around Marcia.  Weekends are hard because I just can’t entertain Marcia and get all the things done that need to be done.  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.

·         Marcia is showing cracks in her strong façade.  She has been incredibly brave, courageous and full of grace since her Alzheimer’s diagnosis.  She has every right to be angry and depressed, but has only recently let it get the best of her.  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.  Sometimes it’s not just crying, it’s hysterical crying and at times, it’s best described as a tantrum.  And she can’t tell me why she’s crying.  She tries to tell me, but she just can’t get the words out.  She’s frustrated and has tried to hit me on a couple of occasions.  Not violent strikes, but more like “you-just-don’t-get-it” jabs.   I just don’t know what to do to help her.  Marcia could be frustrated due to constant pain.  It’s not far-fetched that arthritis, her neck pain or spinal stenosis is causing pain.  She also has headaches almost every day.  Depression could easily be the reason for her tears, which is understandable and perhaps long overdue.  She can’t communicate, has a hard time walking and has vision problems.  And that’s just what I know about.  I saw a film clip recently where an ABC news correspondent spent 12 minutes simulating the life of an Alzheimer’s patient.  I was unaware that many Alzheimer’s sufferers report hearing a constant noise.  This noise was simulated in the 12 minute clip.  It drove the news correspondent crazy and distracted her from pretty simple tasks.  In just 12 minutes.  Maybe Marcia doesn’t have headaches.  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.  I can’t imagine what she’s truly going through, but seeing her cry so often is almost more than I can take.

·         And I’m angry about how Alzheimer’s is portrayed to the public, even by expert organizations like the Alzheimer’s association.  I’m angry that months ago several politicians proposed investing $6 billion dollars on Ebola research after one American death and 4 were reported infected.  I’m not down on Ebola as I understand the potential impact Ebola could have if it spread here in the US.  It’s just that it’s more than has been spent on Alzheimer’s disease in a decade while millions have died and more than 5million Americans are living with the disease today, from which not one person has ever been cured.  Fears of Ebola, or Aids or terrorist attacks get action.  “Memory loss” in the elderly just doesn’t make the front page. Even the movie “Still Alice”, where the trailer shows the daughter asking Alice what it’s like and she says some days are good and some days I just can’t find myself, or “I’m not suffering, I’m struggling”.  That’s soft selling the reality that most of us living with this @#$%^  disease face.  I’ve mentioned above how Marcia is suffering.  I am suffering and so are my kids.  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.

While angry and frustrated, I am one of the lucky ones.  I don’t have some of the financial challenges so many others face, and I have a good support system from friends and family.  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).  Those living with Alzheimer’s and those that will be living with Alzheimer’s need to have hope.  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.  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.  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.  For that I am encouraged, not for Marcia, but for the next generation. 

I’m just sick of Alzheimer’s, and so tired.