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.
