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.

 

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.

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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.

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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

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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.

 

Personal Blog #38 … An AD Spouse Caregiver’s Emotions, Part 2 … Apathy and Boredom … 10/26/24

Apathy … Before Clare’s AD, she had so many interests and was enthusiastic about so many different things.  She loved to read, play word games, do large jigsaw puzzles, sing with me while we played guitars, sing in her temple choir, play the piano, bowl with me in several weekly leagues, and the list went on and on.  Along with caring for her plants and garden, and so many volunteer activities, Clare was busily engaged each day throughout the week.

But as her AD started to worsen, Clare became indifferent about most things.  Apathy replaced her intense desires to experience old and new things.  Slowly, over time, Clare stopped engaging in any of her favorite activities.

Apathy is a common symptom of AD, but it often takes caregivers some time getting used to.  For example, Clare would tell me she wanted to do something, but then quickly lost interest and never do what she said she wanted to do.

As long as Clare’s apathy didn’t extend to me, however, I was okay.  She still wanted to be with me each day.  Unless I was taking her out, Clare preferred to spend virtually all of her time with me, usually cuddled up in my arms while watching TV.  Of course, most days I ended up watching TV by myself as Clare, invariably, fell asleep in my arms.

Until I placed Clare in an assisted living facility, she followed me around our house  anytime I left her alone, even if only for a minute or two.  She only cared about being with me all the time.  All of her other interests had disappeared.

But I was fine with that.  I only dreaded the day when Clare would no longer care if I were with her or not … that would be a very difficult day for me, but that day never came.  Right up until the end, Clare always wanted to be with me.  That made me happy, even though she no longer knew my name or that I was her husband.  I will never know who she thought I was.  But, still, it made me happy to make her happy.

Apathy … a feeling I never thought Clare would experience about anything.

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Boredom … Although I was happy that Clare still wanted to be with me, and I tried to maintain many interests, I found myself bored a lot.  I tried to continue bowling in 3 leagues, but sometimes I was too upset to go bowling after saying goodnight to Clare in her assisted living facility.

I left my house to work out at a gym several times a week, I left my house to go food shopping, and of course I left my house to visit with Clare.  But, increasingly, I had no desire to do anything.  I missed doing things with Clare.  There were weeks when I spent my entire days in bed except for when I’d go out to visit with Clare.

I was finding myself bored more and more even when with Clare … both at her facility and when taking her out for a few hours … primarily because Clare could no longer engage in any kind of meaningful conversation.  Clare couldn’t complete a sentence anymore and, when she did manage to say a few words, they often made no sense.

I was finding it harder and harder to figure out what Clare was trying to say to me on those rare occasions when she wanted to tell me something.  I was now doing all the talking when we were together, even though I knew she probably didn’t understand much, if anything, of what I was saying.

I told her about my day, about our children and grandchildren.  I told her about some of the things happening in our community, our state, our nation, and around the world.  But there was never any reaction from Clare to anything I said.   Sometimes I brought in picture albums to try to engage Clare.  But, again, no reaction.  No questions, no comments … nothing. 

As Clare’s AD worsened, so did her fatigue.  All Clare wanted to do was cuddle up in my arms and sleep.  Afternoon after afternoon, night after night, we sat together in the facility’s small TV lounge.  Within 5 to 10 minutes, Clare would be asleep in my arms and I would try to watch TV by myself. 

However, I was now so sleep-deprived that I, too, would often fall asleep while watching TV.  I had to set an alarm on my phone to wake me up in time to take Clare to the bathroom and bring her back to her dementia unit.

If someone had ever asked me before Clare’s AD if I had ever been bored when with Clare, I would have laughed out loud.  Bored with Clare?  How could I ever be bored with Clare?  We used to talk for hours and hours about anything and everything.

As long as we were with each other, usually holding hands or cuddling, we were having a good time!  We never needed anyone else’s company or needed to engage in any activity to enjoy our time together.  We just needed each other.

But now, Clare was “no longer Clare” anymore.   We were together, yet not together, at the same time.  I missed all those conversations we used to have about the ordinary little things in life, and about those major events and decisions.  I missed talking with my best friend and partner, the one person on this planet who completed me.

All of those conversations were now gone … forever.  I still loved cuddling her, kissing her, and holding her hands even when she was asleep in my arms.  And it was important to me that Clare felt at peace in my arms.  But I missed our conversations.  So much.  I missed so many things … and one of them was just talking with Clare.

But … those days were now long gone and never to return.

Boredom … I hate what AD did to Clare … to me … to us.

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.