Personal Blog #45 … An AD Spouse Caregiver’s Emotions, Part 9 … Regret and Suffering … 6/4/25

 

Regret … I have many regrets as a result of Clare’s Alzheimer’s disease (AD) diagnosis.  Obviously, first and foremost, I regret how much Clare suffered during those years.

But I also regret that there was … and still is … no effective way to prevent or treat AD, let alone cure AD.

And I regret that Clare started suffering from this horrible disease at such a young age.

I wish we would have traveled more and done other things together while doctors were misdiagnosing her with stress, anxiety, or depression for several years before she received an AD diagnosis.

I knew that AD could progress very quickly from diagnosis through end stages.  But I never expected Clare to proceed through those stages as fast as she did.

I regret that our fairy tale marriage came to an end so quickly.

Regret … sadly, I regret so many things too numerous to mention.  I guess that I regret everything about her AD.

----------------------------------------------------------------------------------------------------

Suffering … Anyone with AD suffers … a lot … but an AD caregiver also suffers … a lot.  Caregivers watching their loved ones slowly “disappear” before their eyes suffer a great deal.

Unlike those with AD who forget those they once loved, their caregivers do not forget … caregivers remember what their lives were like only too well.  So many times, with Clare asleep and cuddled in my arms, I would just start crying.  Even when she no longer knew I was her husband.

Watching her decline was so very tough.

Some have referred to Alzheimer’s disease as thee “long goodbye” … but it is also a very short goodbye because it is often common for someone with AD to linger on with loved ones without knowing who their loved ones are … or were.

Being married and widowed at the same time is very stressful.

Suffering … one definition of suffering is pain.  I was in daily pain while watching Clare slip away from me.  All people watching their loved ones dying of AD are suffering and dealing with daily pain.

 

Personal Blog #44 … An AD Spouse Caregiver’s Emotions, Part 8 … Hope and Pride … 4/24/25

Hope … I have never been that optimistic person who always sees the glass as half full.  However, I have always looked forward to a bright future while hoping for the best.   And, with most diseases, there is at least some hope for the future.

But not with Alzheimer’s disease (AD). With AD, there is no hope.

With AD, there is no hope of remission or recovery.  An AD diagnosis is much like a death sentence verdict in a court … a death sentence with absolutely no chance of commutation or pardon.

AD has been listed by our CDC, Centers for Disease Control, as the 6^th leading cause of death in this country.  But studies supported by the National Institutes of Health (NIH) have indicated that AD may actually be the 3^rd leading cause of death, right behind heart disease and cancer.  Why?

Because when someone with AD dies of respiratory failure, pneumonia, heart issues or other immediate causes, too often AD is not listed on death certificates as a significant factor contributing to that person’s death.  Both immediate causes of death and other significant factors contributing to death that are noted on death certificates comprise the data used by the CDC when issuing annual rankings of disease mortality.

When a person with AD chokes to death while eating, it may be because AD led to that person’s inability to swallow properly.  Or a death certificate may list falling as the cause of death for a person with AD, even if it was AD that directly led to that person’s loss of balance.

When Clare died and I received copies of her death certificate, I was shocked to see no mention of AD as either a primary or contributing cause of her death.  When I confronted the doctor who prepared the certificate, he said to me there was no way to prove AD contributed to her death.  So … another death due in part to AD that will never show up in any CDC statistics, despite the reality that were it not for AD my wife would have been eating properly, exercising properly, etc. and would not have been in such poor physical condition when she died.

Many deaths due to AD go unreported.  And that is a shame since federal research funding is often based upon mortality statistics.

Hope … when people are diagnosed with AD, they and their loved ones cannot have any real hope.  When battling a terminal disease with no effective treatment, let alone a cure, there is no hope.  No hope whatsoever.  No reasons for optimism.  Not when the diagnosis is Alzheimer’s.

------------------------------------------------------------------------------------------

Pride … I was proud to have enjoyed a “fairy tale” marriage with an extraordinary woman for almost 50 years.  I was proud of how Clare handled her AD, trying to remain independent for as long as she could.

Unfortunately, Clare’s pride sometimes led to heated arguments as her AD worsened.  She did not always appreciate my efforts to help her as her ability to handle her ADLs (Activities of Daily Living) declined sharply.  Bathing, toileting, dressing, taking daily medications, etc. … she resisted help as long as she could, but many areas of her life were now impossible for her to handle properly by herself.

We had never argued like this in our marriage.  This daily stress was new to us.

Eventually, of course, Clare accepted my help … she had no other choice.  She just could not do simple everyday tasks anymore on her own.  Once at that point, she didn’t let her pride stand in the way. But it was not easy for her.

When Clare entered the lockdown dementia unit of her assisted living facility, she was 67 years old … and 10 years younger than the next youngest person in her unit.  For the next 2+ years that she was in that unit, and when placed in a psychiatric hospital for several weeks when the assisted living facility could no longer handle her behavioral issues … and then at the end when in a nursing home … Clare remained the youngest one in her various facility units.

Fading more and more quickly, confused all the time, Clare became only a semblance of the woman I had been with for so many years.  Her worsening condition was so incredibly painful for me to observe each day.  And if so painful for me, how painful must it have been for her?

During her last months in the assisted living facility, she had fallen several times, had two seizures, had been hospitalized a few times, lost a lot of weight, gained a lot of weight … it was so painful.  Her uneven gait, along with her falls, and her lack of physical strength, had ended her days of walking and placed her in a wheelchair.

But Clare remained very proud … and I was so proud of her.

Pride… I was always so proud of Clare … as a person, as my wife, as the mother of our children … right up to the end of her life.  AD had robbed my wife of her future years of good health and happiness … and AD had robbed us of a bright future together.  But I remained so very proud of her.

 

 

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.

----------------------------------------------------------------------------------------------------

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.

---------------------------------------------------------------------------

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.

-----------------------------------------------------------------------------------------

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.

------------------------------------------------------------------------------------

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.

 

Personal Blog #40 … An AD Spouse Caregiver’s Emotions, Part 4 … Ecstasy, Embarrassment, and Envy … 12/27/24

Ecstasy …  One dictionary defines ecstasy as “an overwhelming feeling of great happiness or joyful excitement.”  Once my late wife’s condition progressed from moderate to severe stages of AD, I was no longer able to experience any feelings of ecstasy.  That was a feeling I could no longer relate to.

I was not happy or excited about anything while watching my wife decline further and further.  How could I feel overwhelmingly happy with Clare now living apart from me in an assisted living community … and with Clare slowly dying right before my eyes.

Overwhelming happiness would have described my feelings if I were to have had even one more visit with “Clare being Clare” again … my best friend, my lover, my wife.  For 50 years, Clare was the one person I shared everything with.  Clare was the first person I went to when I needed anything, when I needed to talk about something, when I needed advice about something.  When I just needed a hug.

If I were somehow able to have had just one more visit with “that” Clare, then I would have been able to experience ecstasy again.  Such a visit would have provided me with an overwhelming feeling of happiness.  Such a visit would have brought me an overwhelming feeling of joyful excitement.

But I was never able to experience that emotion again … not even once during Clare’s final few years.  Those days were long gone … forever.

Ecstasy … an emotion I was unable to experience once Clare entered moderate to severe stages of AD.  It is very difficult for AD caregivers to experience ecstasy when their soul mate is fading from their lives.

-------------------------------------------------------------------------------------------

Embarrassment … Clare was embarrassed about what was happening to her and she didn’t want anyone to know her diagnosis.  Not even our closest friends.  Clare was embarrassed about how much she was forgetting.

She had always been incredibly articulate.  And she enjoyed socializing so much with others. She was so active in numerous volunteer activities.  But as her AD symptoms worsened, she started pulling back.  That alone was not easy for her to do.

Friends could see that something was wrong, but Clare just refused to tell anyone that she was in the early stages of AD.  No matter how often I suggested that telling others might make her life easier … that others would then understand why she was forgetting so many things, and why she was often confused … Clare refused.  She was too embarrassed.  So … although many of our friends could easily see that something was wrong” with Clare, she never wanted to talk openly about AD.

I was never embarrassed about anything that was happening to Clare.  She couldn’t control what AD was doing to her, so there was nothing to be embarrassed about.  But I could never convince her of that.   

At a certain point, it was left to me to tell family and friends about what was happening to Clare … and it came as no surprise to anyone I told.

Embarrassment … an emotion that too many people with AD needlessly experience.

-------------------------------------------------------------------------------------------

Envy … For several years, I was envious of some of my married friends.  Sounds ridiculous, doesn’t it?  But as I saw my happily married friends looking forward to bright futures together, and knowing that Clare and I wouldn’t have those same good years together, I sometimes became envious.

Clare and I weren’t even able to enjoy much of our 60s together, yet here were our friends looking forward to enjoying their lives together for decades more.

Clare and I had been enjoying our early retirement so much … domestic and foreign travel experiences, visiting with children and grandchildren, enjoying our hobbies and volunteer activities.  And all of that started to come to a halt for us.

We had expected to enjoy our lives together for another 20 or 30 years, if not more.  Yet here I was watching those expectations blow up in my face.  So, yes, I was envious of some of our friends who were as deeply in love with each other as we were, but unlike us they were able to see a world of love and fun and enjoyment lasting for decades.

Clare’s decline had already reached the level where, at age 67 and in an assisted living facility, she was sometimes kissing other male residents goodnight thinking they were me.  She no longer remembered or understood that I was her husband.  Where was our future together?

I loved Clare for as long as there was breath in my body.  But I was envious of those whose futures were once the futures we had expected for ourselves.  And it hurt.

Envy … despite our absolutely wonderful life together for nearly 50 years … a true “fairy tale marriage” … I definitely started to envy those who had or expected to have those extra years together that I knew Clare and I would never have.  Envy can be a very difficult emotion to experience in that context … very difficult.

Personal Blog #39 … An AD Spouse Caregiver’s Emotions, Part 3 … Compassion and Contempt … 11/23/24

 

Compassion …. Sensitivity, warmth, concern, tenderness, kindness, love … just some of the many aspects of compassion.  Clare was the love of my life for half a century, and I had great compassion for Clare.  Sadly, that made watching her struggle with AD even more upsetting and difficult.

Everyone with AD is unlucky.  Everyone.  Having said that, however, I think that some people with AD, and their caregivers, are actually more unlucky than others.  I say that because, in my experience, some people with AD don’t even recognize that they have any problems.  They just decline.  That decline alone is extremely sad both for those with AD and their caregivers.

However, some people with AD are keenly aware of everything that is happening to them.  Everything.  And that awareness keeps increasing as they move from early to moderate stages, often causing additional stress and difficulties for spouse caregivers.

Spouse caregivers want their loved ones to retain their dignity and independence for as long as possible, but also know that at a certain point they must help their loved ones with daily ADLs. (Activities of Daily Living).  Loved ones who are keenly aware of their decline often reject that help because they think they can handle all their ADLs by themselves, resenting offers of assistance.

In my experience, those who are fully aware of what is happening both to their minds and their bodies have more difficulties dealing with AD.  Clare was aware of everything and, as her decline worsened to where I had to help her with ADLs, arguments often became common.  Clare didn’t think she needed any help, even when she did.

Another difficulty for those aware of their declines … throughout Clare’s early and moderate stages of AD, she would sometimes suddenly burst into tears.  Whenever I asked what was wrong, why was she crying, she would almost always say that she was crying because she couldn’t stand what was happening to her. 

She couldn’t stand how she was forgetting everything she once knew.  She couldn’t stand how things that were once so simple for her were now too difficult to do.

As Clare’s AD worsened from moderate to severe stages, those crying spells eventually disappeared.  By then, sadly, she had almost no memory of people, places, or events … and no memory of how to do many basic things. 

Did Clare still know what was happening to her?  I’ll never know for sure.

But even when Clare reached the point of being unable to recall basic facts such as her last name, my first name, etc. she was still able to recall the words to numerous songs!  We would sing some of her favorite songs together all the time.  I came to learn that numerous studies have demonstrated that often one’s music memory is among the last memories to fade away.

As Clare slowly faded away right before me, I loved her as much as possible right up to the end.  Although she had forgotten who I was, who “we” were, I wanted to hang on to as much of Clare as possible for as long as possible.

Compassion … one of my favorite emotions

------------------------------------------------------------------------------------------------

Contempt … I have contempt for our federal government.  Throughout Clare’s AD experience, our government knew that it should have been spending more money on AD research, along with money and services to provide assistance for AD caregivers.  Sadly, our government’s commitment was incredibly underwhelming.

When Clare was dealing with AD, Alzheimer’s was the 6^th leading cause of death in this country.  Due to undercounting, some researchers thought that it was really the 3^rd leading cause of death, right behind heart disease and cancer.  And yet, federal funding for AD research was nowhere at the level it should have been.  

AD was already costing Medicare and Medicaid more money than any other disease.  If for no other reason than to avoid bankrupting our health system, our federal government should have been spending much more money on AD research each year.

How can you explain how presidents can advocate for increased AD funding, congress can advocate for increased AD funding, yet that increased funding never materializes? 

Year after year, our government was spending more money on diseases for which we already had successful methods of prevention and treatments, and on diseases that do not lead to death.  How does this happen?  As a major cause of death in this country, wouldn’t it seem obvious that AD should receive major funding for research?

Is it because, despite Clare’s relatively young age at diagnosis (just before turning 63), AD mostly strikes the elderly in their 70s, 80s and 90s and the elderly do not provide as strong a lobbying presence in congress as younger people with other diseases?

Fortunately, in recent years there has been a sizeable increase in funding for AD research.  There have also been efforts in recent years to provide greater assistance for caregivers.  All good.  This must continue, but there is still so much we need to learn in order to prevent, treat, and eventually possibly cure AD.

There is a word to express how I feel about presidents and congress saying that we need to have more research into how to prevent and treat AD, but then do not match their words with dollars and provide the funding needed to do that.

There is a word to express my lack of respect for government officials whose actions do not match their words.

Contempt … yes, contempt is precisely the word that expresses how I feel.