Oct 13, 2016

I Learned Something New Every Day as an Alzheimer's Caregiver

You learn something new almost every day when you are an Alzheimer's caregiver. This happens because there is so much to learn and you can't learn it all at once.


The importance of learning in Alzheimer's and dementia care.
By Bob DeMarco
Alzheimer's Reading Room

For me, part of the process of becoming an effective Alzheimer's caregiver occurred because I learned, over and over, that my mother, Dotty, was capable of more than I could imagine.

She constantly surprised me by what she could do.

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The first time I realized that Dotty was capable of more than I could imagine happened when I took her into the gym for the first time when she was 88 years old. Imagine, Dotty had never been in a gym in her life before we started exercising together.

I learned Dotty was capable of more when she started working out on the exercise machines. This first happened when Dotty jumped on an exercise machine and started doing a chest exercise. She did this on her own while I was talking to someone. Imagine.

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Imagine my surprise when I looked over and there was Dotty working on the chest machine all by herself. I walked over and asked do you like it? She said, yes.

From that point on I developed a modified version of  Five Factor Fitness that would work for an 88 year old living with Alzheimer's disease.

Looking back, I guess it would be more correct to say that Dotty taught me that she was capable of more than I was able to imagine at the time.

Another remarkable aspect of exercise also happened.

Dotty would be in a bad mood going to the gym. To say the least she was rather harsh. On the other hand, when we finished exercising she was smiling, stood up straighter, walked with greater confidence, and without assistance. In the beginning, the hour or two after we exercised were the best two hours of our day. Once the exercise wore off  Dotty reverted to the dullness and meanness.


I was paying attention however, and this lead me to the conclusion that we had to do more things, engage in more activities that helped Dotty be happy. More alive.


I stumbled on to the idea of bright light through simple observation. Dotty would be her usual dull, harsh mouthed Alzheimer's patient during the day.  But, when she was exposed to a large dose of bright light, usually the sun, or Walmart, the look on Dotty's face would change. She looked happier, more alive, and less dull.


Getting Dotty out and around people in a real and meaningful way was a challenge. Then I discovered that Dotty seemed to thrive when we went to the Banana Boat. We sat outside, ate, listened to music and were around lots and lots of people. And then it happened, people started coming over and talking to both me and Dotty. I didn't realize it then, but Dotty had brand new Dementia Friends. Really remarkable when you think about it. It actually brings tears to my eyes typing this. Dementia Friends. Wonderful people.

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That's Dotty in the dark sunglasses at the Banana Boat.

Dotty taught me more at the Banana Boat. One night, we had been our for about 2 and a half hours and I said to Dotty - time to go home. Dotty asked why? I said aren't you tired? Dotty looked at me with that face of her's and said, no. She meant it.

One night one of Dotty's Dementia Friends, Helen, came over and said they were going to another place after the Banana Boat called Ralph and Rosie's. Dotty looked at me and asked are we going? I asked do you want to go? She responded yes.


Dotty also read a lot. She would get in bed late at night and start reading. She read all the Danielle Steel books. Debbie Macomber also.

I did manage to keep Dotty reading - that I imagined on my own. I had her read to me out loud from the newspaper every morning. I am pretty sure this in one of the reasons why Dotty was able to communicate well, say full sentences, and respond.

As time went on we discovered more and more things that Dotty could do. Like she could still do parts of the crossword puzzle. Actually, all kinds of things that I could, and often could not, imagine. We had a goal to continue living our life and we did.


Dotty was a night owl. So why was I so surprised when she wanted to stay out late?

Dotty like to be around people, and she liked to gab. The good result of the Banana Boat was not really a big surprise.

Dotty went to Heaven on May 25, 2012. Nevertheless, I still find myself thinking about things I now believe we should have done. We could have done more. I'm still getting new ideas of new things we could have done.


I also find that I am still learning. Thinking and learning about how I could have done things better or more effectively as a caregiver.

In this sense I continue to think of myself as an Alzheimer's caregiver.

There is so much to learn in order to be an effective Alzheimer's caregiver. It now seems to me that it is a never ending process.


There is one thing I believe. It is us the caregivers that are constrained by our own brains. Constrained because we often fail to understand and realize that dementia patients can do more than we are able to imagine with our own brains.

Allow yourself to imagine. There really isn't any downside to doing this.

Try and get out there and live your life. It is the natural thing to do.

In fact, I now believe the more natural you act, the more natural the patient - caregiver relationship becomes.

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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.

The Alzheimer's Reading Room contains more than 5,000 articles and has been published daily since July, 2009.

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