Apr 9, 2011

Alzheimer's Revelation, Live Your Life

I decided that Dotty and I would start doing the things that we enjoyed doing together before she was diagnosed with Alzheimer’s disease...
By Bob DeMarco
Alzheimer's Reading Room

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Text version of this podcast.

This is Bob DeMarco founder of the Alzheimer’s Reading Room.com.

In the past few months, I did 33 television and radio interviews. These interviews helped me to refine my views on Alzheimer’s caregiving.

Often the interviewers want to know what tips I have for caregivers.

Everything I learned so far centers around one central theme. A single idea that came to me late one night.

I wrote my idea down on a pad. I wrote.

We will start living our life the way we always had.

I remember thinking at the time that this was an important Revelation.

Several years later, I now know and understand this is the single most important decision I ever made.

It was simple really. I decided that Dotty and I would start doing the things that we enjoyed doing together before she was diagnosed with Alzheimer’s disease.

I thought this would be easy to execute. I soon learned that I was wrong.

As it turned out, most of the time when I suggested to Dotty that we go to the pool or something like that she would say NO. The first thing I had to do was work my way around this. It wasn’t easy. In fact, I gave up more than once.

It took more than a year for me to learn not to accept NO for an answer. At least another year to develop patterns that allowed us to do things -- even though Dotty was still saying NO.

This one thing keep me going. I knew what Dotty enjoyed doing. I knew what made her happy and I knew that most of these activities would benefit her. I was also hoping that by engaging in normal activities it would help slow the progression of the Alzheimer’s disease.

I started refusing to take NO for an answer.

Not in any mean spirited way. In fact, in a very gentle, loving, caring way. I learned how to smile when she said no, and how to talk in a low confident voice.

What I stopped doing was -- getting frustrated and all bent out of shape.

I learned how to take her by the hand, and lead. Interestingly and happily, she started to follow. Follow even while continuing to say NO.

Many of you saw the video where I take Dotty to the pool. You noticed she continued to say NO all the way to the pool, and even when she was starting to get into the pool.

I lead her there with a smile on my face. By holding her hand. And, by occasionally touching my head to her head and saying something positive in a very low loving caring voice. These days, Dotty usually smiles at me when I do this. That was not the case in the beginning.

It took me more than a year to get Dotty to the pool. And it took many months before I could get her into the water.

I finally learned a technique that worked. No cajoling. Just a constant reminder that she is going to enjoy what we are going to do. I hold her hand and I lead her through the steps it takes to reach our final objective.

The key word here. I lead. I lead with my hand and with my eyes wide open.

I learned this. You don’t need to try hard. You need to relax, be patient and lead.

Sooner or later they will follow your lead.

Remember this. If they enjoyed doing something before Alzheimer’s they will still enjoy that activity now.

Don’t forget to get on the yellow brick road. Ignore the wicked witch called Alzheimer’s disease. If you ignore the disease long enough you’ll find that sometimes it is not even there.

Be gentle. Lead.

Live your life.

See ya next time.

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Read More on the Alzheimer's Reading Room

The Alzheimer’s Action Plan: The Experts’ Guide to the Best Diag­no­sis and Treat­ment for Mem­ory Prob­lems
The 36-Hour Day A Family Guide to Caring for People with Alzheimer Disease

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 2,460 articles with more than 371,100 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

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