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.