Personal Blog #37 … An AD Spouse Caregiver’s Emotions, Part 1 … Acceptance … 9/30/24

 I had 35 columns published in The Huffington Post (since renamed, HuffPost) in 2015-2016.  I discussed some of the emotions I was experiencing in 8 of those first 9 columns  while watching my wife, Clare, slowly dying due to her battle with Alzheimer’s disease (AD).  As Clare’s symptoms worsened, I went from being her loving husband to a distant memory in her mind.  Even when she no longer recognized our children, grandchildren, or friends, Clare still, somehow, recognized my face.  I honestly don’t know what she recalled about me, but she always smiled and looked happy whenever she saw me.

Clare spent most of her last 2 and a half years in an assisted living facility, except for 1 week in a hospital and 1 month in a psychiatric facility, and she lived her final 6 weeks in a nursing home.  Clare no longer knew my name, or that we were husband and wife. Clare referred to me simply as a “nice man” or ”nice lady,” often asking me to please help her find her husband.  Yet during that time and up until the last day of her life, during each visit Clare would smile and be so happy as soon as she saw my face.

I was feeling both married and widowed at the same time, and growing more depressed.  I knew that I had to do a better job of dealing with my emotions and feelings.  I did an internet search for words that described my feelings and I wrote some columns about a few of those emotions and feelings for The Huffington Post. 

Recently, while speaking with an AD caregiver having difficulties dealing with various emotions and feelings, I mentioned that I had experienced similar feelings.  My friend found our discussion helpful, and I thought that other caregivers might also find some comfort by reading about my own personal experiences dealing with difficult emotions and feelings as an AD spouse caregiver.

This is the first in a series of 10 Personal Blog columns I plan to write and post only on this site in the last week of each month through June, 2025.  This column expands upon my second column published in The Huffington Post in 2015 … the emotion/feeling of acceptance.  Future columns will discuss emotions and feelings I have never written about before in any forum.  For The Huffington Post, I wrote those 8 columns about some of my emotions in alphabetical order, and I plan to do the same for this series.  Hopefully, this series will be helpful to other AD caregivers who visit this site.

Acceptance … a month before turning 63, and more than 2 years after I first noticed symptoms of AD, comprehensive testing at an Alzheimer’s Disease Research Center in New York City led to my wife’s diagnosis of early onset AD.

Accepting that your wife has a fatal disease, one with no effective means of treatment or cure, is not easy.  But her diagnosis did not surprise me.  I accepted it.  In fact, I had expected that diagnosis months earlier, even though doctors were telling us that Clare’s symptoms were due to stress, anxiety, or depression.  Research I had been doing for 2 years made me feel certain that she was already in the early stages of AD

But my acceptance didn’t make it any easier to know that our lives would be changed forever.  Acceptance did not mean absence of pain.  Acceptance of her AD diagnosis hurt.  A lot.  And it kept on hurting.  Sadly, I had no way of knowing just how much more pain was to come after my acceptance of that AD diagnosis.

Pain came in waves, and just continued coming.  I had accepted that there is no way to effectively treat AD, and I had accepted that there is no cure.  I knew that after an AD diagnosis some people may only live for a year or two, some may live for 18-20 years, but the average time a person lived after an AD diagnosis was only 8 years.

Given Clare’s highly developed verbal skills, her fluency in several languages, and her young age, the geriatric psychiatrist who discussed the AD diagnosis with us said that we could reasonably hope for Clare to have 15 or more good years. I didn’t believe him.  I personally didn’t know of anyone who had even 10 good years after diagnosis.

This diagnosis became our new reality, and I had no other choice but to accept it.  But acceptance of my new reality did not mean that I had to like my new reality.  It did mean, however, that I had to learn to live with my new reality.  I had to learn how to get on with my own life, knowing that Clare would no longer be by my side during what we both had once hoped to be a lengthy retirement.

I knew that I had to accept that Clare and I would soon no longer be a “we” … those “we” days would soon be gone.  I knew that.  I knew that Clare would now have a future apart from me and I would soon have a future apart from Clare.  But knowing all of this didn’t make it any easier for me to move on.  Why was acceptance of my new reality so difficult to … accept?

A decade prior to Clare’s diagnosis, and shortly after her diagnosis, we had discussed what we wanted should severe health issues require either of us to ever need either 24/7 home health aides or placement in a facility.  In 2013, more than 6 years after I first observed Clare exhibiting AD symptoms, I placed Clare in an assisted living facility.

I was now living alone in “our” house, a house we had shared for 40 years. I still wanted to hold onto our past and wanted Clare to be part of a wonderful future … together … with me.  But that was no longer possible.  I knew that.  I had accepted that.  Painfully.

I wasn’t in denial.  I really wasn’t.  But I was finding it so very hard to accept our new lives.  I didn’t want to “let go” of Clare.  I was finding it so hard to accept my new life as an “I” instead of as part of a “we.”  There were lots of tears, lots of lying in bed at all hours of the day, lots of inertia.  And lots of pain.

Clare only lived for 7 years after her diagnosis.  She died in her sleep just one month before what would have been her 69^th birthday … 2 months before what would have been our 49^th anniversary.  Our “we” days were now gone forever. 

Acceptance … just the first of many emotions and feelings I was now experiencing and struggling with on a daily basis.