Saturday, June 12, 2010

Let’s Cream Alzheimer’s

It’s hard to believe that our “Let’s Cream Alzheimer’s” Ice Cream Social and Balderdash Championship is only a week away. We don’t expect to make a lot of money at the social; in fact, we are relying on free will donations. What we hope to do is raise awareness of Alzheimer’s and our Memory Walk, and have fun, of course.

The ice cream social is a new idea and a learning experience for us and has been somewhat of a challenge because our Memory Walk committee is so small. We will be depending a lot on our friends at Fairview, relatives, and the youth group at church. Never having had a social before, we aren’t sure how much ice cream we’ll need. We don’t know if people will show up. Will we have enough Balderdash players?

The problem with a disease like Alzheimer’s is caregivers are often too tied down taking care of their loved ones to participate in fundraisers. A caregiver can be worn slick from having to make a lot of hard decisions. Those that have been through the gamut of caring for and losing a loved one to Alzheimer’s often want to put the past behind them. I can’t blame them for trying to get their lives back on an even keel.

Alzheimer’s is not a glamorous disease, and often one that people try to hide from the world. The person with dementia does not want to be treated like a child, and families may be embarrassed by their loved one’s behavior.

Too often caregivers don’t realize how much they can benefit from Alzheimer’s Association employees and volunteers. A speaker at one of our support group meetings helped me deal with Jim’s quirkiness. The speaker said to gauge behavior by asking yourself, “So what?” If the problem isn’t endangering anyone, “So what?”

His practical advice helped me through some sticky situations. One day Jim’s mom called to tell me he was out in the yard naked and wouldn’t come inside. She couldn’t get him to put his clothes back on. She was so distressed.

“I’ll be right home,” I assured her. “He probably had a reason for taking his clothes off. He’s either too hot, or he’s had an accident.”

“But he’s out in the yard without any clothes on.”

“Don’t worry about it,” I said. We lived in the country on a gravel road without much traffic. “So what if someone comes by? If they don’t want to see a naked man, they can keep their eyes on the road. After all, he’s is our yard.”

Recently, I saw a letter on a health Website written by a woman whose husband had Alzheimer’s. She was so embarrassed by her husband’s behavior that she didn’t want to take him out in public. She felt like people were staring at them. My comment was, “Jim didn’t notice people staring, and I got to the point where I didn’t care.”

We continued to go places that Jim enjoyed and didn’t worry about what others might think. I always considered Penny Braun, former executive director of the Mid-Missouri Chapter, to be my mentor about Alzheimer’s. Penny always said, “Ice cream solves a lot of problems.”
Following the advice of a wise lady, I took Jim to Dairy Queen almost daily.

A few days ago, I was looking for a specific picture of Jim. Digging through the boxes of pictures I don’t have in albums yet, I came across pictures of Jim in all stages of the disease. It tugged at my heart to see him in the early stages when he wore his cowboy hat, boots, and 501 Levis. He and his brother sat on the patio playing guitars together. I remember that day—Jim was having trouble finding the right chords to play. Jim, the master guitarist missing a simple chord change and forgetting the lyrics to songs he had sung for years.

Yes, those days are behind me now, but I believe those of us who have finished our journeys should help those who are still traveling. I hope we “cream” Alzheimer’s in my lifetime. All I know is that we can’t give up on finding a cure.

If some of us don’t step out of our comfort zone and put effort into bringing Alzheimer’s to the forefront, millions of Americans will always struggle with the daily challenges of caregiving and the heartache of a cruel and debilitating disease. We need to put the research spotlight on the challenge to end Alzheimer’s.

“Let’s Cream Alzheimer’s” is a good way to join a mission statement and a fun event. So if you are in Sedalia on June 19, join us 7 PM at the Celebration Center while we “cream” Alzheimer’s. It’s a time to relax and enjoy. The hardest decision you will need to make is “two scoops, or one?”

Copyright (c) June 2010 L. S. Fisher
http://earlyonset.blogspot.com/
http://boomerobics.blogspot.com/

6 comments:

NewKidontheBlogg said...

Ice cream social sounds like a fun activity.

You mentioned "so what". I like that attitude. However, was there a time when you couldn't say that anymore and you needed to stay home or put Jim into a home? What was the defining moment?

Carol

L.S.Fisher said...

Carol, You are absolutely correct--the time comes when it is no longer a "so what" moment. Two defining moments for me: (1) Jim wandered off so much that I was afraid we wouldn't find him and the nursing home decision would no longer be an option. (2) I was so exhausted that I didn't feel like I was able to be the caregiver I wanted to be. I was functioning on four hours of sleep a night becausse that's all he would sleep even with medication.

NewKidontheBlogg said...

I am not there yet, fortunately. I plan to enjoy everyday with my husband before that might happen. But I like knowing. I went to my first Alz. caregiver's group last Tuesday and plan to go every month now. Also will take training in July.

Carol

Karen said...

Linda -
First I LOVE the wording - was that your idea?! Secondly, you said all the right things. I have never understood why people are embarrassed of their loved ones with this disease. Would they be embarassed if their loved one had cancer, diabetes, heart disease? I think not....Thank you, AS ALWAYS, for your continued effort in bringing the struggle of this disease into the limelight.

L.S.Fisher said...

Karen--

The "Let's Cream Alzheimer's" was my idea.

I can't see being embarrassed either. Alzheimer's is a disease just like any other. My mother always said, "If a person had a broken leg, you wouldn't expect them to walk normally." She figured that if a person had Alzheimer's they couldn't be expected to go on like nothing was wrong.

Maris said...

What's there to be embarrassed about? And how rude can some people get! I think that for those of us who chance upon people who obviously have a serious disability of sorts, the best thing we could do to empathize and alleviate their situation is to pay our respects by not treating them like that.