Jun 9, 2011

Alzheimer's and the Case for "More There"

Do More, Not Less.

By Bob DeMarco
Alzheimer's Reading Room

After reading Jay Smith's article, LIFESTYLE CHANGES AND MUSIC AS ALZHEIMER’S THERAPY?, I am sitting here once again contemplating the word "more" as it applies to Alzheimer's disease.

There is "more there" when it comes to Alzheimer's patients than most people can imagine. I am convinced this is true. Even after caring for my mother for over seven years she never stops amazing me. There is always "more there".

After reading Jay, I am more convinced than ever that there are good reasons why there is "more there" in our case. The our in this equation is my sample of two -- Dotty and me.

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I ask myself ever day, every day, why is there "more". Please keep in mind Dotty has scored as low as 12 on the MMSE (not much of test but one I can get). She also underwent considerable testing before she was admitted to the Dimebon clinical trial. She was diagnosed as being in the moderate to severe stage of Alzheimer's. Those tests were administered 18 months ago.

In his article Jay writes about things like brain plasticity and forging new neural pathways. I wrote years ago that I believe that there needs to be more research with mesenchymal stem cells and neural stems cells. We will get into that some other time.

I have read much of the same research as Jay. And, the conclusions I came to are not very different than Jay's.

Our approach is different in some ways. But the common ground revolves around the belief that you must do more. More of what you were doing before the diagnosis, and more activities that challenge the parts of the brain outside the hippocampus.

Can you rewire the brain of an Alzheimer's patient? I believe you can. I started believing that anyone can rewire their brain almost 40 years ago. I know it can happen because I did my own.

Not to how I used this with Dotty.

The first decision I made was that I had to get Dotty exercising. This meant taking her into a gym for the first time in her life at the age of 88.

I was worried that she wouldn't be able to do the class that was set up for seniors. Level one. I mean they had older people in that class that were younger 20 years younger than Dotty and they did not have memory issues.

Not only did Dotty do level one, she wanted to get into level two.

The first day I took Dotty into level two a woman started freaking out telling me I couldn't bring Dotty in there. I asked her, are you the trainer or the manager of the gym? She said no. At first I was nice. But she persisted. When she finally said, "that old lady (referring to my mother) can't stay here, I had to do it. I told her to mind her own business. Then I gave her the glare and the Stop Sign.

Meanwhile, Dotty takes off, goes up to the front of the gym, sits down, and refuses to go into the class. In fact, she told me she was never coming back in the gym again.

I could tell you a long story here but I won't. The older lady who was 67 and lost her gym membership over the incident. Yep. They barred her from the gym even though I told them it was not necessary.

Dotty went back into level one, but only for a bit. Soon I was putting Dotty on the treadmill, and soon enough on the weight machines. I have to tell you, the weight machines were more or less Dotty's idea.

Now to my point. I learned because I tried that Dotty could do more exercise than I could have ever imagined. Dotty could do more.

As a result of this endeavor, I learned that Dotty would go kicking and screaming to the gym. Saying NO all the way. I also learned that after exercise Dotty was a different person. Dotty was "more there". She was certainly gentler with her mouth, and easier to deal with for most of the rest of the day.

These simple observations lead me to believe that we would begin living our life. Now that didn't happen over night. It was the next year when I came to that conclusion.

As part of living our life, I decided to model our life on what Dotty did each day.

One thing that Dotty always did was wake up, make coffee, drink coffee, read the newspaper, and work on the crossword puzzles.

So each morning I led Dotty to the kitchen table and put the paper in front of her. I realized that Dotty was always asking me, what day is it? So one day, I started asking her, what day is it? I had her read the day and date to me from the paper. She stopped asking me 10-20 times a day, What day is it.

I now call this getting out in front of the problem. I prefer to get out in front. I learned if you can get out in front the patient gets lets confused and you don't have to spend time -- redirecting.

I prefer to be a director and a leader. I don't enjoy solving problems by trying to pretend running away from it is a solution. If they keep doing the same thing day after day, redirection is not the solution. Getting out in front is the way to go. If the person with Alzheimer's asks the same thing over and over then they need to know. Start telling them before they ask. Watch the clock, observe the pattern. Change the pattern.

I hear this constantly.

"I can't believe Dotty can read and speak full sentences".
Well for the longest time I was surprised. Then it dawned on me. We start every day speaking and reading. Could this be the reason why Dotty can still read and speak? You bet. I talk to Dotty all day long every day. Now we have Harvey helping out. Dotty reads her books almost every night. I put the book in her hand, or right next to her hand.

I could go on and on.

I hear daily, my Alzheimer's patient can't do this and can't do that. I wonder every time I hear those words, did they stop doing when the diagnosis came in?

Is that why the person can't read, or can't talk? Did the disease progress faster because they didn't exercise, eat healthy, socialize, get out into the bright light, and do?

Jay Smith, I am glad you are out there. You are convincing me that my observations and efforts can work. Every time you write you raise my spirit.

From now on I will add these words when asked for advice --

Do More, Not Less.

Therein lies the path to the "More There".

I want to add here that there are a growing number of Alzheimer's caregivers that come here, read my words, and then tailor what I am doing to their own needs.

The write to me and tell me that "some" of my ideas really work well for them. This tells me that my ideas can work for a large fraction of Alzheimer's caregivers.

I know that most Alzheimer's patients say NO. This is a deterrent to doing "more". I also know that Alzheimer's caregivers tell each other, can't can't can't. This act as a deterrent to discovering that there is "more there"..

I find this personally frustrating. I know, there is "more there". And so does, Jay Smith.

More Insight and Advice for Caregivers

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 2,680 articles with more than 512,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room