Last weekend, I had the privilege of
speaking at the Business Women of Missouri legislative conference on
Alzheimer’s legislation. A women’s group is an ideal audience for a topic of Alzheimer’s.
Two-thirds of those stricken with the disease are women. In addition, women are
two times more likely to be the caregiver for a loved one with the disease.
Spouses and daughters make up the majority of the female care partners, but in younger onset, a mother may be a caregiver. In Jim’s case, his mom took care of him while I worked. Her failing health and the progression of the disease left me scrambling for other relatives and professional caregivers. Bless my mom, sister, sons, and in-laws for being the village that helped me keep him at home longer.
Spouses and daughters make up the majority of the female care partners, but in younger onset, a mother may be a caregiver. In Jim’s case, his mom took care of him while I worked. Her failing health and the progression of the disease left me scrambling for other relatives and professional caregivers. Bless my mom, sister, sons, and in-laws for being the village that helped me keep him at home longer.
It seems that everywhere I go, I run
into others who know the heartbreak of Alzheimer’s. Folks tend to share their
experiences with me. Or their concerns. Often, I see the concern when the horrible
suspicion takes hold that something is terribly wrong with a loved one. From my
experience, I completely understand the urgency of wanting to find out what is
wrong, and the fear that the doctor will say, “dementia” or “dementia of the
Alzheimer’s type.”
First, before panic sets in, take
your loved one for a complete medical and psychological workup. I believe that
nothing would have been more devastating to me than to find out, too late, that
something could have been done to help Jim, and we hadn’t started proper
treatment. Some treatable conditions can mimic Alzheimer’s.
Also, psychological testing can
measure the level of cognition. I was stunned to learn that Jim had dementia
after a battery of psychological testing. Simple things baffled him: he
couldn’t count backwards from ten, he couldn’t come up with any words that started
with the letter a, and he couldn’t
perform simple math. Abstract thinking was beyond his capabilities.
Jim’s follow-up MRI detected brain
shrinkage. We ran out of other reasons for his problems.
Alzheimer’s is an insidious disease.
It sabotages lives and steals the future. It predictably moves throughout the
brain, relentlessly destroying brain cells.
Caregivers can become frustrated
when they hear the same question or phrase, repeatedly. They can become annoyed
with repetitive behavior. Jim folded paper towels, dozens of them, and stuffed
them into his pockets. He paced. And paced. And paced right out the door and
down the road.
“It’s just the disease,” I told
myself. I told others the same thing when they couldn’t understand why Jim did
some of the things he did. Knowing it’s the disease, does help.
“If Jim had a broken leg, would
people expect him to walk?” my mom reasoned. “Well, he has a broken brain, and
no one can expect him to do the things he used to do.”
When Jim was in the early stages of
the disease, I think some people believed I was the problem. I saw little
things, subtle changes that it took another year for others to see.
Now I see others beginning that
journey, hoping it isn’t Alzheimer’s. They notice differences that may not
be obvious to anyone else.
I don’t know how many times I’ve
heard, “Oh, my uncle doesn’t have Alzheimer’s! He can remember everything that
happened when he was a boy.”
Yes. We grasp at straws and hang
onto denial for as long as possible. If he can’t remember where the bathroom is
in his own house, or drives to town and can’t find his way home, or forgets his
children’s names, it’s time to drop the denial and investigate.
We fear nothing as much as the
unknown. And everywhere I go, I find people who begin to have that nagging
doubt that gnaws at the pit of their stomachs, that someone they love is
developing dementia. My heart aches for each of them. My prayers plead for them
to be strong, because strong is the only choice if their fears become the ugly
reality of Alzheimer’s.
My hugs convey my hope that until
science ends Alzheimer’s they will make the most of the time they’ve been
given. My dream is that someday, everywhere I go, I won’t know anybody with
Alzheimer’s.
Copyright © March 2015 by L.S.
Fisher
http://earlyonset.blogspot.com
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