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PAGE
3
March
23, 2001
My
name is Lynne Culipher. I was diagnosed in 1998 at the age
of 58. No one else that I know of in my family had Alzheimer's.
I have one son, four grandkids, four great-grandkids, with
another on the way, to be born in July. My son doesn't want
to be tested to see if he will get Alzheimer's. Can't make
him; he's 44 years old. I do expect to be heard and make
myself known to others. Facing it head-on is the only way
to deal with it. My hubby, Larry, has been great, but he
does lose it with me at times. This is when I have to be
calm, but eventually he'll have to do the best he can, as
I won't be able to comfort him anymore. A caregiver's life
is hard, but at times, for us with EOAD [early onset Alzheimer's disease] it's hard too.
Lynne
Culipher
May
15, 2001
A
message to caregivers
You
live the 36-Hour Day now, I know. Your life is held captive
by my needs, but you must also take care of yourself. I
can't change what I have become, but I can help you gain
a little respite from my care.
You can get me online! When I am safely seated at the computer
chatting with others like me, I can spend hours at it. You
can rest. You can do the things that are important to you.
Or you can watch TV or wash your hair. You can think about
YOU! You can write an angry letter to the disease that has
stolen your life. You can talk with someone who also cares
for someone like me.
Seated
at the computer, I won't fall, wander away or burn myself
at the stove. I won't mess up your kitchen and I won't ruin
your brand new shirt in the wash. I won't leave vinegar
in the coffee pot or shower in my socks.
From
my point of view, if you get me online, you will give me
back my freedom to travel the world. To make new friends
who understand me. To communicate at my own rate of speed.
To heal my shame at having this ugly disease. To learn that
others like me have hope for my future and see a purpose
for my life.
Of
course, it would help if I had already learned to use a
word processor or a computer, but I can still be taught
what is important to me. Then, for a little while, you can
rest!
(This
was written by one who did all of the things listed above,
but still spends at least two hours a day on the computer.)
Carole
Mulliken
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