Personal Blog #43 … An AD Spouse Caregiver’s Emotions, Part 7 … Happiness and Hatred … 3/26/25

Happiness … For 2-3 years before diagnosis, it was already obvious to me …  even if not to her doctors … that Clare was probably in the early stages of AD.  I had become her caregiver.

For 4+ years after her diagnosis, I was Clare’s sole 24/7 caregiver and we were able to enjoy almost all of our time together.  As Clare’s condition started to worsen significantly, however, that enjoyment started to diminish.  But we were still living together at home and we were so happy just being with each other, talking about almost anything, holding hands, cuddling, hugging, kissing … just being together.  

Clare had always been much more technologically knowledgeable than I was.  But as her AD progressed at home, there would be 5, then 10, then 15 and more post-it notes on her computer as she struggled to remember how to do things.  As her AD slowly worsened, however, she couldn’t remember which post-it note to look at for help, or what those notes meant when she found them.

And then came the time when Clare could not remember how to use her computer anymore … or remember how to use the phone, TV remote, or any other device.

Once I was unable to care properly for Clare at home, as per her wishes, I placed Clare in an assisted living facility.  For the next year or two, Clare was enjoying most of her new daily activities and I visited her every day.  She made some friends, and I was happy knowing that my continued daily presence in her life, albeit only for several hours each day, continued to make her happy.  And, of course, she still brought me so much daily happiness during each visit.

Once or twice a week I’d take Clare out to a restaurant, although we were limited to places with unisex restrooms so I could accompany her in the bathroom.  I also took her to visit with friends once a week, to see musicals at local playhouses, and to go to the beach and cuddle on a bench while looking out at the water.

But I started experiencing more and more days when happiness was elusive.  AD has a way of doing that … of robbing caregivers of happiness.

My years of intense daily happiness were now behind me.  As Clare’s AD symptoms worsened more and more, my intense happiness resided only in my memories.  Intense happiness was no longer part of my daily reality.  To say I missed Clare as she used to be … to say I wanted our previous life back … would be such a ridiculous understatement.

But I knew those days were now gone forever and no longer part of my reality.  I was losing Clare, each day, little by little.  “Our” life together had now become her life and my life apart from each other.  The two of us would never again enjoy a life together as it used to be.

Alzheimer’s saw to that.  Alzheimer’s had already ended most of our daily happiness … forever.

Happiness … an emotion that, as Clare sank further and further down that seemingly never-ending black hole, was not experienced very frequently.

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Hatred … Hatred is such a harsh word.  Extreme or intense dislike or ill will is such a very harsh emotion.

Everyone knows what people mean when they say they hate someone or something.  There is no room for misinterpretation when someone uses the word, “hate.”  One should only use that word, “hate,” when one despises someone or something to an incredible degree.

I hate Alzheimer’s.

Alzheimer’s has absolutely no redeeming value.

Alzheimer’s is a disease that causes great pain for the person who has it, and great pain for those who love and care for that person. 

I hated what was happening to Clare.

I could not even imagine how painful AD was for Clare each day of her final months.  How painful it must have been for her to accept that her memories were completely disappearing.  How hard it must have been for her to accept her inability to talk or walk or eat or do any simple tasks.

It was so painful for me to see her working so hard to struggle to try to remember what she wanted to say to me about something that had happened only moments earlier.  More and more often, those words just no longer came to her.  Often, Clare said no words during a visit.

Everyone caring for a loved one with AD already knows how horrible it is to watch this complete breakdown of cognitive skills.  And if so painful for me to watch, how much more painful it must have been for Clare to live through.

Hatred … a harsh word like “hate” should only be used when one is extremely upset with someone or something.  I hate Alzheimer’s … I hate everything about it.

 

 

Personal Blog #42 … An AD Spouse Caregiver’s Emotions, Part 6 … Fear and Gratitude … 2/26/25

 

Fear … When Clare started sliding down further and further down that “black hole,” I started to worry about what my life would be like once she no longer knew who I was. And I was afraid of what my life would be like after Clare would no longer be in this world with me.  I started missing her more and more as she slowly but surely started slipping through my fingers.

How would I feel when Clare would no longer know that I was her husband?  How would I feel when I could no longer be with her … to talk to her, to hold her hands, to hug her, to kiss her … even when she didn’t know who I was?  How would I feel when I would be totally alone … no longer part of our “we” in even the slightest way?

I didn’t want that day to ever come … I dreaded that day.  Clare was my world.  But that day was surely coming … and much, much sooner than I had foreseen.

Preparing for the death of your loved one, sadly, is the only certain thing about AD … the only major disease with no effective treatment and with zero survivors.  Some with AD may live for only a year or two after diagnosis.  Some may live for another decade or two.  But … the reality is that death is the outcome once an AD diagnosis is made.

I also started worrying more about what AD would do to Clare once she reached the bottom of that black hole.  She was already so weak.  She was already unable to say more than a few words during each of our visits together. 

I could not even imagine what she must have been feeling or thinking after she lost her ability to communicate, walk, feed herself, or control her bodily functions.  Now that she was having to deal more and more with all of the body ravages that come with the end stages of AD, what could Clare have possibly been thinking?

As I began to worry more about what AD would do to me as I watched her slowly die, knowing I was totally helpless to help her as she slipped further and further away, fears about what my own life would be like after her death increased dramatically.

I began to fear that day when I would have to go from being married, albeit also already feeling very much widowed, to actually being completely widowed … without having Clare in my life at all in any way, shape, or form.  I dreaded that day. 

Fear … The further down that black hole she went, the more I came to fear that day when I would no longer be able to feel part of a “we” anymore.  And that is when I, too, started going down a black hole of my own.

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Gratitude … I am grateful for many things in my life.  Clare and I had 42 years of a wonderful marriage before her Alzheimer’s diagnosis, years filled with tremendous joy and happiness.  We watched our children grow up, marry, and have their own children.  We had so much fun and enjoyment. I am grateful for all of this.

I am also grateful for the careers we both had, providing much enjoyment and happiness for so many years.  And when we decided to retire, we traveled widely and could not have asked for more.  We loved our “new life” together as young retirees.

Even after Clare’s early onset AD diagnosis, we still enjoyed much happiness together.  And even after I had to place Clare in an assisted living facility, I was grateful for each and every moment of happiness we enjoyed together during my daily visits.

I remember wondering if we would ever get to celebrate our 50^th anniversary, our “golden” anniversary.  But as she began descending deeper and faster into that black hole, I doubted whether Clare would still be alive by then.  And, I wondered, if she did make it to our 50th, would she know who I was?

Clare didn’t make it to our golden anniversary.  She passed away in her sleep 14 months before that date. 

One learns quickly when caring for a loved one with AD that one cannot be so bold as to predict what is going to happen 3 years in advance.  Trying to predict how one with AD will be in just a few months in advance is difficult to predict, let alone 3 years.  Alzheimer’s robs you not only of your present, but also robs you of your future.

Gratitude … an emotion that only goes so far.

Personal Blog #41 … An AD Spouse Caregiver’s Emotions, Part 5 … Euphoria, Excitement, and Exhaustion … 1/26/25

Euphoria …. Euphoria is often described as “a state of intense excitement or happiness,” differing from ecstasy in that euphoric feelings are sometimes exaggerated or irrational.

Clare and I experienced euphoria many times, but none after her AD decline rapidly worsened.  Fortunately, however, even during her steep decline … I often referred to that period as her spiral descent into a never-ending, bottomless back hole … we were still able to experience occasional moments of happiness together.  When we kissed, when we held hands, when we cuddled, when we sang songs together, when we went out to eat by ourselves or with our closest friends … until her final days, we were still able to experience brief moments of genuine happiness.

Each of those moments of happiness took on more meaning as they became more and more infrequent.  Each experience was very special to me.

But euphoric?  Intense excitement or happiness?  No … those euphoric experiences were now clearly in our past, just as those experiences of ecstasy.

It’s very hard to feel euphoric about anything when one’s spouse does not remember who you are, or that you are husband and wife.  Or when your spouse no longer recognizes your children and grandchildren.  Or when you have to help your spouse with the most basic tasks of daily living, such as personal hygiene.  Or when your spouse is unable to have a conversation, or is having difficulty swallowing food, or experiencing all of those behaviors that characterize end stages of AD … it’s just very hard.

Euphoria … an emotion I no longer experienced with Clare once her AD worsened severely as she descended into that bottomless black hole.

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Excitement …  when Clare “was Clare,” I got excited about so many things with her. Our frequent mini-trips to visit with family and friends, our longer trips to explore places all around the world, were incredibly exciting and wonderful experiences.

I was excited each time we’d take the train into the city to see a Broadway play or visit a museum, often following a delicious lunch in one of the many ethnic restaurants in the city, either just by ourselves or with family or friends.

It was exciting to be retired at such a young age (mid 50s) and able to sleep late whenever we wanted to do so, or have a leisurely breakfast in our kitchen, or go out to eat for breakfast or lunch on a weekday!

And it was exciting to just play a leisurely board game or card game at our kitchen table while drinking coffee on a cold and snowy winter weekday, knowing we didn’t have to leave our house if we didn’t want to do so.  We were excited to simply enjoy whatever we wanted to do … or not do … on any given day in retirement!

It was exciting to know that virtually any plans we had for any particular day could be changed at the last minute … because, as retirees, almost anything we had planned to do could be postponed until another day or time! 

However, as Clare’s AD worsened, those feelings of excitement faded more and more … until they stopped completely.  It became increasingly difficult to become excited about anything.

Excitement … another feeling that went away as Clare’s AD worsened over time.

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Exhaustion …  Once Clare was in an assisted living facility, I came home from my visits feeling thoroughly exhausted.  Physically, mentally, emotionally … just totally exhausted.

On those evenings, I usually went straight to bed and fell asleep while watching TV …. often after a good cry.  That surprised me because, after I had placed Clare, I had expected that I would feel less exhausted than when I was serving as her 24/7 caregiver at home.

Before her placement, I felt exhausted all the time.  Answering the same questions over and over again was exhausting.  Searching for things that Clare misplaced each day was exhausting.  Repeating myself over and over again was exhausting. 

Daily battles over ADLs … Activities of Daily Living such as bathing, dressing, eating, taking medication, personal hygiene, etc. … were exhausting.  Especially after some of those battles were now starting to lead to heated arguments because Clare often refused my help when she absolutely needed my help. 

After her placement in the assisted living facility, I didn’t have to deal with everything on my plate that I had to deal with as her 24/7 caregiver at home.  Other than helping her in the bathroom during my visits, and sometimes having to change her clothing, I really didn’t have to deal with her ADLs anymore.  So … why was I so exhausted every single day and night? 

I honestly don’t know the answer to that question.  I only know that it was my reality.

Exhaustion … AD has a way of exhausting spouse caregivers, even when those spouses are living apart.