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.
-------------------------------------------------------------------------------------------
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.
