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 6th
leading cause of death in this country.
Due to undercounting, some researchers thought that it was really the 3rd
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.
