Sep 26, 2012

“What am I supposed to do now?”

I believe the Alzheimer's caregiver challenge is about thinking and concentration. Trying to introduce activities that help the deeply forgetful think and concentrate. Not to remember, but how not to forget.


By Bob DeMarco
Alzheimer's Reading Room

What to do in the Alzheimer's care and dementia care environment.
This week we have two interesting articles.

The first by Marie Marley, How Long Should an Alzheimer’s Patient Sit on a Chair? And What Should He Do Next? In the article Marie's lovable Romanian soulmate Ed asks, “What should I do now? And then goes on to say, “I don’t know what to want.”

The second an article by Pamela R. Kelley, If Only I Could Clone Myself. In this article Pamela's mother Audrey asks, “What am I supposed to do now?”

I wondered to myself, I wonder how many Alzheimer's caregivers have asked themselves,

What am I supposed to do now?


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Both articles sent me back to a time when I thought to myself, we have to get out of this cave. It seemed to me at the time like Dotty and I were living in a cave.

I concluded that is was time for us to start "living our life" -- again. At that time I was completely absorbed in trying to figure out, What can I do? What should I do? I finally concluded that "we" had to do something.

On the Alzheimer's Reading Room we have hundreds of articles from caregivers about "what they did do".

Life maps, puzzles, games, creating memories, riding in the car, even an article about how one caregiver set up a shop in a room in her home so her mother could go shopping. Shop she did for hours on end.

I came to believe that what I needed to do with Dotty were the kinds of activities that would keep her mind working, or would bring a smile to her face.

As I mention on Alzheimer's Speaks radio yesterday, I was more focused on helping my mother how "not to forget". I was not very focused in on her memory loss even thought I could see her memory deteriorating.

I believe the Alzheimer's caregiver challenge is about thinking and concentration. Trying to introduce activities that help the deeply forgetful think and concentrate.

Not to remember, but how not to forget.

I worked very hard on keeping Dotty reading. Reading the newspaper and reading books. She continued to read and she continued to speak, full sentences. She could real aloud to me until near the very end.

Dotty always read the newspaper, read books, and did the crossword puzzle in the paper. So I helped her do it. I didn't want her to forget how to do it. She didn't.

I introduced Harvey into the equation. A stroke of luck. Harvey became Dotty's best friend. He kept Dotty talking. He kept her smiling.

It seemed to me while reading Marie's and Pamela's articles that both Ed and Audrey wanted to keep doing. It also seemed to me like they trusted the judgement of  their life link.

Trust is one of the most important elements in effective caregiving. The key to overcoming fear, confusion, and challenging behavior.

As caregiver we are guides. Life links. The One.

What should we do? What, should, we do?


Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The ARR knowledge base contains more than 3,811 articles with more than 306,100 links on the Internet. Bob lives in Delray Beach, FL.

The Alzheimer's Reading Room (ARR) offers a searchable Knowledge Base that contains over 5,000 articles about Alzheimer's disease.

This intellectual capital is offered free of charge and is available to the entire Alzheimer's community Worldwide via the ARR website.