Friday, March 13, 2015

Alzheimer's Everywhere I go

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.

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

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