About Alzheimer’s Disease – For Zoe

When I was 23 my dad
was only about 55 or so and he decided to take an early retirment from
his job as a school principal. I was married to an army soldier then
and we were being transferred to Germany so I stayed with my parents
for a few months before I went to Germany to join my husband. I’ll
never forget this one time my dad and I went to the post office. He
went inside to get some stamps and when he came out, he had either
gotten the wrong combination of stamps or had gotten the wrong amount.
Whatever the case, he said (more to himself than to me), “I think I’m
losing my mind.” The truth was, his assumption was nearer to accurate
than any of us could have ever guessed. He actually WAS losing his
mind, cell by cell, bit by bit, to a disease none of us had ever heard
of yet, Alzheimer’s disease. It wasn’t until several years later that
we heard the diagnosis spoken, but he must have known even then that
something was drastically wrong. That’s why he took the early
retirement.

I gave birth to Rebeka after moving to Germany and
lived there for a couple more years but our marriage deteriorated and I
found myself moving back to America with both my daughters then moving
to Illinois. I settled in here and got a job but the family began to
talk more and more about the memory issues my dad was having. They
wondered if it could be a brain tumor or some other health problem.
Back then, no one had ever heard of Alzheimer’s Disease and only “old
people” got senile dementia. I didn’t see my dad that often; my parents
lived in NY and I lived in Illinois at this time, but apparently things
weren’t going well.

My brother lived here in Illinois too and
was going to college here. When my parents traveled out here to see him
graduate, it came to my brother’s attention that my dad could no longer
even sign a check and my brother told my mom that she had better get
him to the doctor! At least that’s how I think it happened. To talk to
my mom, she says that she, herself went to the doctor for a physical
and in the physical their doctor asked if everything was okay. She
began to cry and said that she was having problems with crying a lot.
The doctor asked her if she had anything to cry about. She answered,
“No, not really except…” and she listed off whatever things were
bothering her, ending with, “and my husband seems to be having all
these memory problems…” or something to that effect. The doctor said
he thought her reaction of crying was pretty normal but that my dad’s
problems did NOT seem normal so that my mom should get him in under the
guise of a regular physical. After many grueling and disheartening
tests, the disease named Alzheimers was quoted to us as the diagnosis.

As
is my way, I investigated this. Having parents who were both educators,
I had been taught that your best weapon against anything is knowledge.
Your best path through any dark forest is a good light! So, I asked
friends to baby sit my girls and I hit the local library. After
exhausting their books, I made calls to the AMA. They didnt have
internet then, but I paid my forty dollars and the AMA Xeroxed and sent
me pertinent journal items on Alzheimers. I even wrote a personal
letter to and received a personal letter from the doctor who won a
Nobel prize for his studies on Creutzfeldt-Jacob Disease as just
reading, it seemed like the symptoms were similar. He was a really nice
man. I sent these sheaves of information to my mother along with a
paper I compiled that gave the summary of all the information which
was basically, its hopeless.

In the meantime, she discovered
something a little better There was an Alzheimers Disease and Related
Disorders Association (or something like that) who published a book
called the 36 Hour Day which was geared toward care-takers. Thats
exactly what we all needed to read. It was the only piece of decent
reading material out there at that time. I remember reading my copy two
or three times right off the bat, and referring to it many times later.

Now
days, of course, everybodys heard of Alzheimers Disease and
everyones got somebody they know and love suffering with it or has
lost someone to it. It is a devastating disease, frightening and
disintegrating. It takes a person and turns them into a living corpse.
I have a terrible fear of developing it myself, as they say early
Alzheimers (like my Dads) is often genetic and my mom thinks that my
grandma (Dads mom) died of it too. But there are some meds now that
stave it off a bit if you catch it in time.

It can manifest
itself in different ways. Having spent my teenage years first
candy-striping (volunteering when youre too young to work) then
working in a nursing home, I was quite familiar with patients suffering
from senile dementia (which is what they basically called Alzheimers
Disease and all other senilities back then). You can end up being sweet
as a little child, or mean and cantankerous, unreasonable it just
depends on your temperament prior to the disease combined with how it
hits you and where the damage is done to your brain.

Generally,
you will remember all sorts of things that happened to you as a child
and a young person. Youll look at the people around you and think
theyre some of your young friends or believe that youre young too
until/unless you catch a glimpse of yourself in the mirror. Later
youll forget things, like even the first half of the sentence you were
saying, or what goes on your breakfast salt? Ketchup? Paint? There is
danger of you setting your house on fire accidentally or falling out a
window. This is when assisted care is essential.

Finally, of
course, your brain will waste away so fully that you wont know or care
what youre wearing or even if or when you eat. Itll just be a matter
of sitting and waiting for your body to deteriorate as much as your
brain. For my father, that took several years. It seemed so long before
he died his body, I mean. His personality and character had left us
long before. He died when I was pregnant with my son… In 1988. I was
35 then… 12 years after that fateful moment in front of the Post
Office. Alzheimer’s Disease had turned him from a still vibrant and
thinking man into a shell who barely resembled a human.

It is a
terrible disease, robbing people of what makes them THEM. There is very
little suffering physically, however. And one never needs to be
cognizant at the time of their own death.

http://www.alzheimers.org/pubs/adfact.html
http://www.alzhi.org/
http://www.alz.org