The Other Side of Alzheimer’s

Regular readers know I have a strong interest in dementia as I lost an aunt to Alzheimer’s Disease and my mother suffered from dementia in her final years. A lot of my healthy aging activities are aimed at preventing that from happening to me. So I was struck by the story of Charles Schoenfeld. He didn’t get Alzheimer’s, but he took care of his mother who did. I thought it would be worthwhile for readers who might find themselves someday in the position of caregiver to hear what Charles has to say.

As you can see from the previous post, Charles spoke at Aspirus Senior Center on his book A Funny Thing Happened on my way to the Dementia Ward.

In his own words, “After retiring from a 27 year job as a truck driver, I went to work at North Central Health Care (NCHC), providing care to residents with dementia and Alzheimer’s disease.

“It had begun with regular visits to my mother. At 98, she was a resident at NCHC and I visited her regularly. For the average visitor, a dementia ward can take some getting used to. For whatever reason, I fit right in.

“That led to Certified Nursing Assistant (CNA) class, where I was the only male—and the only one without a cell phone in one hand and a Diet Mountain Dew in the other. I learned how to “toilet,” how to perform “personal cares.” How to cushion my fall before fainting…

“Despite thirty days of training, nothing prepared me for the people I met, much less the situations I found myself in. The dynamics of daily life on a dementia ward, my encounters with co-workers, visiting family, and particularly the residents I helped, resulted in a train wreck of emotions that both broke and filled my heart. The stories are many.

“Care giving became an unexpected love affair that led me down a path to self discovery I hadn’t known I was traveling, and revealed what became my personal, greatest truth. And now, a book I needed to write.”

He offered the following suggestions for beginning caregivers:

Early Stage Alzheimer’s

During earlier stages of the disease caregivers will need to help with things like keeping appointments, managing money, and tracking medications. But it’s only the beginning. Now is the time to contact Alz.Org, for advice and information. You can also phone them at 1-800-272-3900. Both the caregiver and their loved one, if willing, should locate and join a local support group so you don’t have to go through it alone.

Contact an elder law attorney to get legal, financial, and future care plans in place, and try to do this while the patient is still capable of involvement, even for something as simple as signing a document. Educate family and friends of the changes taking place so they can understand and be supportive. Have a meaningful discussion with the patient about whether it is wise to continue driving.

Later Stage Alzheimer’s

As the disease progresses, so do the challenges. Incontinence and unwanted, bewildering behaviors will strain the strongest of relationships.

Some suggestions to avoid the pitfalls:

*Obtain an ID bracelet. Six out of ten affected by Alzheimer’s will wander.
*Lock doors at night and hide car keys.
*Acquire a bed alarm to alert a caregiver if their loved one is getting up during the night.
*Always approach from the front.
*Avoid distractions and large groups.
*Stick to a daily routine.
*Don’t argue. Remember this person you care for can no longer comprehend, and lacks the ability to change their mind. You must go to their world, they can’t come to yours.
*The behaviors and repetitions of an Alzheimer’s patient can wear a caregiver down. Don’t forget how to laugh. It’s still the best medicine.

You can order Charles’s book at his website.

Sounds like a good read.

Thanks for sharing, Charles.

Tony

To clarify: Dementia is not a disease but a group of different diseases characterized by the gradual worsening of cognitive abilities. Dementia is seen across all ethnic groups and increasingly so with advancing age. Among 65–69-year-olds, about 2 percent are afflicted, with this figure doubling for every five years of age. Alzheimer’s accounts for 60 to 80 percent of cases.