Hope … I have never been that optimistic person who always sees the glass as half full. However, I have always looked forward to a bright future while hoping for the best. And, with most diseases, there is at least some hope for the future.
But not with Alzheimer’s disease (AD). With AD, there is no
hope.
With AD, there is no hope of remission or recovery. An AD diagnosis is much like a death sentence
verdict in a court … a death sentence with absolutely no chance of commutation
or pardon.
AD has been listed by our CDC, Centers for Disease Control,
as the 6th leading cause of death in this country. But studies supported by the National
Institutes of Health (NIH) have indicated that AD may actually be the 3rd
leading cause of death, right behind heart disease and cancer. Why?
Because when someone with AD dies of respiratory failure,
pneumonia, heart issues or other immediate causes, too often AD is not listed
on death certificates as a significant factor contributing to that person’s death. Both immediate causes of death and other
significant factors contributing to death that are noted on death certificates comprise
the data used by the CDC when issuing annual rankings of disease mortality.
When a person with AD chokes to death while eating, it may
be because AD led to that person’s inability to swallow properly. Or a death certificate may list falling as the
cause of death for a person with AD, even if it was AD that directly led to
that person’s loss of balance.
When Clare died and I received copies of her death
certificate, I was shocked to see no mention of AD as either a primary or
contributing cause of her death. When I
confronted the doctor who prepared the certificate, he said to me there was no
way to prove AD contributed to her death.
So … another death due in part to AD that will never show up in any CDC statistics,
despite the reality that were it not for AD my wife would have been eating
properly, exercising properly, etc. and would not have been in such poor physical
condition when she died.
Many deaths due to AD go unreported. And that is a shame since federal research funding
is often based upon mortality statistics.
Hope … when people are diagnosed with AD, they and
their loved ones cannot have any real hope.
When battling a terminal disease with no effective treatment, let alone
a cure, there is no hope. No hope
whatsoever. No reasons for
optimism. Not when the diagnosis is
Alzheimer’s.
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Pride … I was proud to have enjoyed a “fairy tale”
marriage with an extraordinary woman for almost 50 years. I was proud of how Clare handled her AD, trying
to remain independent for as long as she could.
Unfortunately, Clare’s pride sometimes led to heated
arguments as her AD worsened. She did
not always appreciate my efforts to help her as her ability to handle her ADLs
(Activities of Daily Living) declined sharply.
Bathing, toileting, dressing, taking daily medications, etc. … she
resisted help as long as she could, but many areas of her life were now
impossible for her to handle properly by herself.
We had never argued like this in our marriage. This daily stress was new to us.
Eventually, of course, Clare accepted my help … she had no
other choice. She just could not do
simple everyday tasks anymore on her own.
Once at that point, she didn’t let her pride stand in the way. But it was
not easy for her.
When Clare entered the lockdown dementia unit of her
assisted living facility, she was 67 years old … and 10 years younger than the
next youngest person in her unit. For the
next 2+ years that she was in that unit, and when placed in a psychiatric
hospital for several weeks when the assisted living facility could no longer
handle her behavioral issues … and then at the end when in a nursing home …
Clare remained the youngest one in her various facility units.
Fading more and more quickly, confused all the time, Clare became
only a semblance of the woman I had been with for so many years. Her worsening condition was so incredibly painful
for me to observe each day. And if so
painful for me, how painful must it have been for her?
During her last months in the assisted living facility, she
had fallen several times, had two seizures, had been hospitalized a few times,
lost a lot of weight, gained a lot of weight … it was so painful. Her uneven gait, along with her falls, and
her lack of physical strength, had ended her days of walking and placed her in
a wheelchair.
But Clare remained very proud … and I was so proud of her.
Pride… I was always so proud of Clare … as a person,
as my wife, as the mother of our children … right up to the end of her
life. AD had robbed my wife of her
future years of good health and happiness … and AD had robbed us of a bright future
together. But I remained so very proud
of her.
