Oct 11, 2014

You Can Live Your Life After a Diagnosis of Alzheimer's

I see my mother in the way I always have .... Dotty is the same person I have known for my entire life.

By Bob DeMarco
Alzheimer's Reading Room


You start by doing the things your loved one did prior to the diagnosis of Alzheimer's or a related dementia.

You do them in the same exact order they did them before the diagnosis. Then, you build on that routine until it becomes a pattern of living and pattern of behavior.

For example, Dotty's typical routine was to get up go to the bathroom, start a pot of coffee, go out the door and get the newspaper, sit read the paper, drink coffee, and eventually start working on the crossword puzzle.

So this is what we did every morning. I made a few changes. For example, I had Dotty read to me from the newspaper. Or, read the recipes to me from the Food section. I organized the paper for her. Eventually the comics and crossword puzzle would make there way to the top of the pile.

Even when Dotty was pretty far along I noticed she could still get some of the 3 letter words in the crossword puzzle. By examining this I realized there was still a lot of information in Dotty's brain. The answers to the questions she could get were always about the distant past.

So while they often write, don't ask a person living with dementia if they remember. It is actually a good idea to ask them to remember the past. You might try by asking - where did you go to first grade.

Dotty startled me when she answering that question correctly in 2010 when she had already scored a very low 14 on the MMSE. Dotty was in first grade in 1922.

Never underestimate a person living with dementia. 

Of course, this is one of the biggest mistakes we all make - failing to realize that persons who are deeply forgetful are capable of more than we can usually imagine.

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Here are some excerpts from an article I wrote years ago on this issue -- Dotty and I Live Our Life as We Always Had -- You Can Do it Too.

I strongly suggest that you take the time to read the article in full.
I see my mother in the way I always have.....Dotty is the same person I have known for my entire life.....We are continuing to live our life in the fullest way possible.....While there are times that somehow seem horrific, there are times that are also wonderful.....Quite frankly, Dotty never stops amazing me.....I learned one of the most simple lessons of them all.....Dotty is capable of doing more, much more, then I imagined during those two horrific years when I was a novice Alzheimer's caregiver.
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The decision was both simple and complex. The easy part -- Dotty and I would start living our life. The hard part, coming to the understanding that there needed to be more then just Dotty and me...I had to find a way to put Dotty in situations that were cognitively, socially, and communicatively stimulating...The Banana Boat was the first answer. Bright light, lots of friendly people, and you can eat with your hands. It worked better then I could have ever imagined.
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Bob DeMarco
Bob DeMarco  is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized expert, writer, speaker, and influencer in the Alzheimer's and Dementia Community worldwide.
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You Can Live Your Life After a Diagnosis of Alzheimer's