I was in a constant war with Alzheimer's and I intended to win. Win if I could. So, I did the only things that made sense to me. The only things I could think of to do.
By Bob DeMarco
+Alzheimer's Reading Room
One thing that is hard to learn, and remember at times, is that Alzheimer's patients have specific social, cognitive, and physical needs.
These needs go well beyond what could best be described as typical baby sitting.
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There is a good amount of science that suggests activities in the cognitive, physical and social domains help protect against the onset of cognitive decline and dementia.
As I was reading this science and trying to figure out how best to care for my mother, Dotty, I kept coming back to this one single word - delay. This all started in 2004 by the way.
How could you delay the onset of Alzheimer's? Keep in mind, there is evidence that if the age of onset of Alzheimer's could be pushed back by 5 years the number of persons living with Alzheimer's would drop by 50 percent.
A natural intellectual extension of this thought process of how could you delay the onset of Alzheimer's was --
how could I delay the progression of Alzheimer's in Dotty.
I'll say this in a straight forward way.
I didn't want my mother to forget me.
I didn't want her to end up bed ridden.
I didn't want her to end up being unable to talk.
So, I became determined to do whatever I could do to make sure none of those things happened.
Now don't get me wrong here. I was in no way sure what the future would bring. I was, however, determined to change the future if I could. Change the future, not change the past.
So for those who ask, how did you do it? Where did you get the energy? I can answer.
I was in a constant war with Alzheimer's and I intended to win.
Win if I could.
So, I did the only things that made sense to me. The only things I could think of to do.
I will admit I did get some wild and crazy ideas along the way. Some of them worked. Some of them I never had the opportunity to try.
Here is the craziest part of it all. I still get new ideas that I would like to try. Real ideas that I think might have been beneficial to Dotty. I never really stop thinking about what might help a person living with dementia have a better life.
So here is how I addressed some of Dotty's specific needs and what I did about them.
Exercise was first.
I took Dotty into the gym for the first time when she was 88 years old. Over time we refined out exercise progam to: 22 minutes on the treadmill, two exercises on the machines three times a week, and the stand up sit down exercise three times a week.
Once we started the stand up sit down my mother never fell again until three weeks before her death. She did trip twice.
Cognition included every thing under the sun.
Under the sun included getting my mother out into the bright light daily. Either bright light of the sun, or bright light of a well lit store. Go over to the right hand side of the page and enter the words - bright light - into the search box for more information.
Cognitive included having my mother read to me every morning from the newspaper. Putting the crossword puzzle in front of her at the appropriate time. Discussing the comics with her. Handing her a book in bed every night.
Believe it or not she kept reading in bed until the last 3 weeks. It was a part of our routine and pattern.
Anything that would help my mother use her brain in concert with another part of her body was a good idea as far as I was concerned. Brain and hands. Brain, hands, and eyes. I really did focus on this and had her active all day long.
This included singing and listening to music that was popular from 1930 to 1950.
Social activity was an ongoing challenge for certain. For one thing, friends started fading away. No more invites to all kinds of things.
Okay then, what is is. So I started trying to figure out what to do.
The Banana Boat was big. This is where Dotty made new dementia friends. The BB became a place that Dotty "sometimes" looked forward to going to. For more info on the Banana Boat use the search box on the right hand side of the page.
Social activity meant socialization to me -- communicating.
For communication I was always aware of the need to talk to, smile, and interact with Dotty repeatedly throughout each day.
But there was nothing that compared to the discovery of Harvey the repeat parrot (use the search box).
Harvey often kept Dotty occupied and socializing for 2 hours or longer each day.
Imagine Dotty and Harvey sitting outside yaking away. Dotty with coffee and a snack, Harvey keeping her company, and me not having to worry for even one second. This actually seemed like a form or respite care for me. No worries - what do you think?
My message here is simple and straightforward.
You have to keep the person living with dementia active all day long.
Social day care is a number one option. But, if you can't afford it, then it is up to you.
Think of it this way. You want to insure that your loved one keeps as many of their skills as is possible. Including remembering you, and the gift of gab.
There are no guarantees.
All I know is that I tried as hard as I could and we got lucky.
However, it would probably be more correct to say we made our own luck.
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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 ARR Knowledge Base contains more than 4,000 articles. Bob lives in Delray Beach, FL.Learn more about Alzheimer's and dementia, visit The Alzheimer's Reading Room Knowledge Base