PAGE
13
Sept.
23, 2003
This
message was posted on the Forum
in this site on Sept. 11, 2003. Marilyne kindly agreed
to let us post it here. It's her response to a question
posted on the DASN (Dementia Advocacy and Support Network)
message board.
She ends her Forum posting with these words:
To
all you wonderful, so often unrecognised caregivers -- I
truly can't imagine the sheer hell it must so often be for
you -- truly. Your share the hell of the brain dying, even
if it's not your own, and while those with this disease
who carry on 'right to the bitter end' loose awareness of
the 'dying,' caretaker's hell continues right on. You are
truly the 'silent victims.'
DASN
Message board:
http://groups.yahoo.com/group/DASN
This
is just a personal reflection on your question but, yup,
if you have dementia/Alzheimer's/etc., you can be fully
aware that you have the disease. Truly.
During
one of my appointments at our Alzheimer's Clinic, I asked
the specialist nearly the same question...and he responded
that the saddest cases he handles are those of patients
who "start high" and are fully aware of each and
every devastating loss of their mental functioning in the
earlier stages.
Personally,
I was aware many years ago that 'something was wrong' but
because it's virtually impossible for a doctor to detect
something wrong with an 'apparently normal' person during
a quick doctor's visit, I, like many others, was told that
any problem I thought I had was simply due to over-extending
myself, both at work, and in my personal life. So on I went.
A
year later, my concern was still there and this time I attempted
a slightly unorthodox method of putting my nagging worries
at ease.
(Now
before any of you read this, please please please remember
that than IQ is, in my opinion, worth diddly, in itself!!!
Truly!!). Anyway, a friend of mine works at a mental health
clinic and luckily is a doctor and I convinced her that
I needed to have some tests done as I was driving myself
nuts thinking I was 'loosing my mind' (literally!). She
agreed and brought in a specialist -- I did scads of tests
-- and the results simply showed I was "in the top
10 percentile." The specialist was happy but my friend
and I went off to have a liquid lunch so I could console
myself over the fact that I was no longer in the "top
2 percentile." (Now remember, this never made me 'smart',
just book smart -- grin!). So doing these tests didn't bring
me the 'peace of mind' I was hoping for but life goes on.
Even without answers.
It's
so easy in the first stages to compensate, to adjust, to
make excuses and to ignore the niggling little worry that
all is not right. When, what I refer to as 'Fog Hollow'
times would arrive, luckily my family and I simply laughed
about it and continued on with our lives.
Then
one day, I simply forgot what I was doing at work. Literally
forgot why I was there or what I should be doing. My job
went first. Then one day I got in my car and literally couldn't
remember how to start it. That passed, but on another day
I nearly killed myself, and worse, my daughter, by poor
judgment -- and willingly (but with huge amounts of sorrow)
gave up driving my car. Yet my family and I continued to
simply 'do the best we could' with all the little, but accumulating
changes in 'me.'
I'm
now 54 and the changes are not so 'little' anymore. Where
once I knew I was about to 'visit Fog Hollow,' I no longer
always know. I'm not always safe in the kitchen, anymore
(have a nasty tendency to take things out of the oven without
oven mitts -- realize 'something is wrong' but not what
-- and continue on my merry way, burned hands and all).
I often struggle to comprehend conversations going on around
me (especially if it's noisy or there are a lot of people
involved). I never, ever leave our home alone. Never. (I
can now get lost without any warning and yet because part
of 'me' knows I 'should' know where I'm going, I don't ask
anyone for help). I once designed and sewed little heritage
garments as my hobby and gave them, anonyomously, each xmas
to the local Shelter in my area -- now I've forgotten how
to create these little things. I no longer do any of our
finances -- the poor utilities companies became weary of
receiving cheques dated in past decades -- gentle smile.
(And no, it doesn't help to check and re-check things --
in my mind, it simply 'looks right' no matter how often
I check it).
And
on and on it goes. It's not fun. But it's even less fun
knowing that this disease, that I hate with an absolute
passion, is going to bring pain and such huge amounts of
sadness to those that are so very precious in my life.
Yup,
my brain is dying. Literally. And I get to watch it happen,
day by day, week by week. But worse, my loved ones get to
watch 'me' dying while the body continues on much the same
as before.
But,
although Alzheimer's will win in the end, it's going to
have to go like hell to catch me. There's simply not a day
I waste -- I live with laughter and love and simple joy
in so, so many things.
With
very kindest regards,
Marilyne
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