September 21 was known as World Alzheimer’s Day for many years. This year, September was designated World Alzheimer’s Month and the 21st took on a new role—Alzheimer’s Action Day. Alzheimer’s disease is a world problem with 35.6 million affected. It is a national crisis affecting 5.4 million in the U.S. It is an issue in every state—Missouri has 110,000 residents living with Alzheimer’s. Once Alzheimer’s deals us a devastating blow on a personal level, we learn the harsh reality behind the statistics. When Alzheimer’s claims a close friend, a cherished spouse, a beloved parent or grandparent, or sibling, we find ourselves in a battle with a formidable enemy.
In this country, more than 15 million caregivers provide comfort for loved ones who have Alzheimer’s disease. Few family caregivers have professional training. Most learn by doing the job with a loving heart, compassion, and forbearance.
A primary caregiver doesn’t sacrifice a few hours here and there. Caregiving is a day in, day out job. The duties go on, and on, and on. Just when the caregiver thinks he or she has a handle on the situation, something will change. Or the solution for a problem yesterday, might work again today, and tomorrow it may make things worse instead of better.
No one ever said life was easy, but most of you don’t expect life to be a constant uphill battle without any rest. Life shouldn’t be a tug of war where you are in danger of being dragged into the mud pit no matter how deep you dig in our heels or how hard you try.
Caregiving can seem to be a thankless job. Sometimes the people you expect to support you, instead let you down. They may wish you good luck—but want to be left out of it.
Probably, one of the most difficult aspects of being a caregiver is to realize that not everyone is cut out to be one. Caregiving is only for the strong at heart, and it sure isn’t for sissies. You can’t shame or “guilt” someone into being a caregiver. Anyone who provides care grudgingly will do a lousy job of it.
It is best to let those who can’t go the caregiver route help in other ways. So maybe your brother can’t help mom with her bath, but what if he will mow the grass instead? Maybe your sister can’t tolerate your dad’s repetitive questions, but if she loves to cook, maybe she can provide dinner a few nights a week. Let people help at the levels they can. Accept any offers of help that come your way! Never, ever turn anyone down and have a list ready for those who really want to help, but don’t know what you need. It won’t take long to separate the sincere offers from vague platitudes.
Why do caregivers hang in there day after day? Is it out of a sense of duty? Sometimes. Is it because caregivers love being martyrs? Not often. The most common reason is love for the person with dementia—and to keep him or her as productive, happy, and physically healthy for as long as possible.
Whether you are a caregiver, or play a supporting role, have you thought about what you will do Wednesday to raise awareness? At the Alzheimer’s Action Summit last spring, we brainstormed some ideas to create awareness, so I’ve had some time to think about it.
At the beginning of September, I changed my Facebook photo to the "End Alz" icon. I will be on a local radio station (KSIS) at 9:30 Wednesday morning to talk about the human and economic cost of Alzheimer’s. In the afternoon I’ll be at Sedalia Book and Toy for a signing of my four Alzheimer’s Books. In honor of “Go Purple Day,” I’ll be giving a discount for anyone wearing purple. All my royalties will be donated to the Alzheimer’s Association Mid-Missouri Chapter.
On September 21, I hope you wear purple to show you are in the battle against Alzheimer’s. The bigger the army, the better our chances are of someday living in a world without Alzheimer’s.
Copyright © September 2011
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