Jun 1, 2014

The Metamorphosis of an Alzheimer's Care Partner

I guess you could say, more or less, that most Alzheimer's caregivers are "hatched". You wake up one day and it finally dawns on you -- I am an Alzheimer's care partner.

Bob DeMarco
Alzheimer's Reading Room

I started writing seriously about my journey with my mother, Dotty, here on the Alzheimer's Reading Room in 2009.

As part of that effort I started to write about my own metamorphosis as an Alzheimer's Care Partner. One thing for certain, we are constantly changing and so is the person living with dementia. The ability to adapt, change, is critical in Alzheimer's care.

I thought you might enjoy the articles and links that describe a small part of my own journey down the path of burden and onto the path of Joy.

We have had more than 5,200,000 visitors since I wrote the first of those articles.

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Finally, I decided I needed to do something different. That I had to discover an effective way to deal with Alzheimer's. Simple, I had to change. That was it...

Picasso Girl

You might find these articles of interest:

In those articles I wrote about how I continued to change as an Alzheimer's care partner over time.

I guess you could say, more or less, that most Alzheimer's caregivers are "hatched".  You wake up one day and it finally dawns on you -- I am an Alzheimer's care partner.

 Then you feel overwhelmed.

It is not easy to deal with something you know nothing about and can't understand.

To make matters worse you have to deal with all the emotions times two. On one hand, you now have to try and accept that someone you know and love has just been dealt a horrible sentence - a brain disorder. On the other hand, you have to try and deal with the denial and sense of hopelessness that resides within.

Here is the good news and the bad news, you will have lots of time to deal with and resolve these issues. Usually 7-8 years.

I spent four and one half years in graduate school working on my doctorate. I really learned a lot. I read an enormous amount of information and learned from a few world class scholars. I wish I had enrolled in grad school when my mother was diagnosed with Alzheimer's disease. I would be well on my way to my second doctorate --  in Alzheimer's disease.

I can say this with confidence, I read a lot more research this time around. Here is the part that blows me away, I never stop learning. Keep in mind, I am not a doctor or a scientist. I'm a civilian just like you.

I did make a very good decision six years ago. I decided I would become the very best Alzheimer's caregiver I could be. I am glad I made that decision. I'm still trying to get there.

Now to metamorphosis.

I wrote many times about how my mother continually says -- I'm hungry, I'm starving. I have to say that more then any other single thing this was the one thing that almost drove me nuts. Honest, in the beginning it was sending me into an emotional tailspin that is impossible to describe. Note: feel free to substitute the behavior or repetitive behavior that is driving you nuts.

As is usual as a newly hatched Alzheimer's caregiver, I continued to try convince my mother that she couldn't possible be hungry because she just ate. I tried to tell her -- you can't be hungry you just ate, you just ate, you just ate five minutes ago, and on and on. It never worked.


I beat my head against the wall


ran the hamster wheel for years.

I understood my mother had Alzheimer's disease. I understood she couldn't remember she just ate. I understood that my mother believed she was hungry. I understood the catalyst of her behavior was Alzheimer's. I understood the why and the how --

and I still allowed it to drive me crazy.

Finally, I decided I needed to do something different. That I had to discover an effective way to deal with Alzheimer's. Simple, I had to change. That was it.
After repeatedly correcting my mother, telling her she just ate, and watching her get frustrated or angry, I finally realized something had to change -- this something was me. I had to change......
I started going into the Bunkhouse of my mind to try and figure out solutions. Then I started using the Leonardo da Vinci approach to discover and systematize potential solutions to problems. The da Vinci approach allowed me to commit my ideas to paper and to make a picture (diagram) of what I was going to do.

All of this lead me to Alzheimer's World. It was the development of diagrams and pictures that finally lead me into Alzheimer's world. A brand new place where everything seemed normal. It took me a long time to come to the understanding that there was a real place at the intersection of my world and my mother's world where we could both operate together effectively.

Now to the example.

In the beginning when my mother said, I'm hungry, I'm starving right after eating it drove me nuts. Once I found my way, Alzheimer's World, I accepted that she was in fact hungry. So instead of trying to convince her otherwise, I started explaining to her that we were going to eat soon. After a couple of hundred times of being cool, calm, and collected, it started working. She would say OK.

Finally one day, when my tiny mother looked at me and said in a tiny voice -- I'm starving you know. I didn't get bent out of shape. Something new and different happened -- I got very sad. I felt very sad. First time that ever happened.

I sat there trying to figure out why I felt so sad. I took several deep breaths and tried to label my feelings. Bottom line I was sad.

Sad that my mother is so vulnerable.

Sad that someday I am going to miss her saying, I'm hungry, I'm starving. How many million times am I going to think about that over the course of my life?

So I guess you could say I have gone full circle on this issue as an Alzheimer's caregiver. I am not bent out of shape. I'm not angry or mad. I'm not banging my head against the wall or running the hamster wheel.

I am a little sad. The good news is I know how to deal with this and I don't need to go into Alzheimer's world to do it.

Best of all, I am still undergoing my own metamorphosis as an Alzheimer's caregiver. I'm still trying to become the best Alzheimer's caregiver I can be.

The lesson learned. You are likely to be an Alzheimer's caregiver for a long long time. So why not change. You might be surprised what you learn about yourself, and I believe you'll feel a lot better about yourself.

You have to turn Alzheimer's dementia into a positive in your life. This is one of the ways you do it.

This is my belief.

My name is Bob DeMarco. I took care of my mother from November 17, 2003 until the day she went to Heaven on May 25, 2012.

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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. The ARR Knowledge Base contains more than 4,700 articles. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room