Presentations

Monday, June 9, 2014

Alzheimer's Experience—Effective, But Cruel Teacher

Jessica Snell, Alzheimer's Volunteer
I’m sure you’ve heard that experience is the best teacher. I’ve come to the conclusion that not only is it the best teacher, it can also be the cruelest teacher when it comes to an Alzheimer’s caregiver.

When life delivers a knockout punch, we have two choices: Lay on the mat and writhe in pain, or push off the mat and stand up and fight back. Experience tells us the only way to survive is to drag our butts off the ground and prepare ourselves to do battle.

You’ve seen it haven’t you? I’m referring to those life warriors who leave shock and awe in their wake as they fight back against all odds. The Davids of affliction fighting the Goliaths of disease. These warriors don’t know the meaning of giving up, or quitting. They trampoline off the mat reaching new heights, beyond anything they could have imagined.

In the past fifteen years I’ve met hundreds of amazing caregivers and people with dementia. There’s Tracy who has lived with dementia for more than a decade. She worked at several different jobs, raised a child, and soldiered through marital ups and downs. The one thing she has never done is give up. She makes the most of each day placing her trust in God. Another friend, Karen, showed tremendous strength by keeping her husband at home until his death from familial Alzheimer’s. I’ve seen courageous people step out of their comfort zone to become speakers, support group facilitators, advocates, and fundraisers.

Not everyone goes forth and becomes a public face, but that doesn’t mean they have given up. They do what they have to do, excel at it, and quietly go about their business. Casual acquaintances never notice the soul scars left from being a caregiver to a loved one with dementia. 

Last week, I spoke to a group of local business leaders about Alzheimer’s, the September 6 Walk, and several upcoming team fundraising events. When I finished, a man sitting next to me gave an impassioned testimony to the difficulty of taking care of a loved one with Alzheimer’s. “Only someone who has provided care can really know how hard it is,”  he said. Bullseye.

Being a caregiver is the hardest job I ever tackled in my life. The most famous Alzheimer’s disease caregiver’s guide  is called The 36-Hour Day for a reason. When I first read the book, it scared me. I thought that surely, only rare cases got that bad. And after the initial shock, and realization that yes, it could be that bad, I panicked as I doubted my ability to do this.

Experience became my teacher. At first, I learned from other people’s experiences. In turn, I passed on their experiences and added my own to the mix. We Alzheimer’s caregivers have to think on our feet, be creative, and not be afraid to call for help.

It is when we internalize our caregiving fears and anxieties that we set ourselves up for failure. And, failure is not an option when someone needs our attention, devotion, and loving care. Part of being a successful caregiver is to become part of something bigger than yourself. That can be personal spirituality or it can be a public commitment as a volunteer.     

As a volunteer, I found that I helped myself as much as I helped the Alzheimer's Association. It also allowed me to keep company with more amazing people. 

In the midst of a downpour Saturday morning, I attended a fundraiser organized by two of our walk team captains. I was happy to see the weather hadnt deterred anyone from eating a delicious breakfast. Jessica Snell, team captain and co-chair of our Sedalia Walk, wore an Alzheimer’s awareness T-shirt that said,  “We don’t know how strong we are until being strong is the only choice.”

This slogan is used for many diseases because it has a universal appeal for anyone who has been surprised by his or her inner warrior. Understanding this concept is the diploma handed out by the cruel teacher of life to those who refuse to stay on the mat.

copyright © June 2014 by L.S. Fisher

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