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Thursday, October 18, 2012

Metamorphosis of an Alzheimer's Caregiver - Reflections of My Mind


It now amazes me how when Dotty would do something that seemed so foreign to me, how I would get all bent out of shape. I finally learned to look at the world from Dotty's point of view. I first called it Dotty's World, and then later, Alzheimer's World.

By Bob DeMarco
Alzheimer's Reading Room


Metamorphosis of an Alzheimer's Caregiver - Reflections of My Mind
Last night I was sitting with my da Vinci pad and thinking. Thinking back to my time as an active, living in the front row, Alzheimer's caregiver. I cared for my mother, Dotty, for 8 and a half years. Dotty went to Heaven on May 25, 2012.

As I reflected I couldn't help but laugh and smile. Laugh at myself, and laugh as I thought of some the crazy things that Dotty would do.

I thought about how so many of her actions and behaviors made me feel angry, confused, and disconcerted - at the beginning.

And then, how these very same actions and behaviors made me feel happy and alive.

I thought about all my complaining and venting in the beginning.

And then, how I would describe these very same actions while laughing years later.

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My change started when I accepted that Dotty had Alzheimer's disease and that our lives in many ways would be very different.

But, along the way, I decided we would live our lives the way we always had. Sure, we had to make adjustments, but while they might have seemed burdensome at times, in fact, they were not that difficult to do.

People always ask why did you do that, how did you do that? I don't know we just did what seemed natural. What made the most sense.

In the very beginning I worried obsessively about what it would be like when Dotty would no longer know me. What would that feel like. After a while I concluded that she would always know me, even if she didn't know my name, or confused me with another person. I wondered? Is she going to think I Frank at some point? Frank was my father, Dotty's husband.

After about 18 months, I decided that I would stop worrying about, and stop thinking about memory. I knew that Dotty's memory would deteriorate over time. It was a given. Instead I would start focusing on what we could do.

Oddly, I forgot about Alzheimer's along the way. Somehow I came to believe that Dotty was deeply forgetful. I could deal with that. Easy enough, I would lend her my brain when necessary.

It is really amazing how when you stop thinking of a person as suffering from Alzheimer's or a related dementia, and start thinking of them as deeply forgetful how you change your view of them.

Dotty was no longer a victim and neither was I. In fact, the very same person Dotty became very lovable when I thought of her as deeply forgetful. Same Dotty, different me.

It now amazes me how when Dotty would do something that seemed so foreign to me, how I would get all bent out of shape. I finally learned to look at the world from Dotty's point of view. I first called it Dotty's world, and then later, Alzheimer's World.

So instead of creating chaos by interceding when Dotty was engaging in a behavior that at first seemed nutty and crazy, I just leaned against the wall and watched. Mostly I smiled and laughed. Same exact behavior different reaction from me.

Frankly, I was happy to see that Dotty was doing something. How could the same exact behavior that disconcerted me, make me feel so happy?

I guess you could say that after a while Dotty and I decided we would just continue along with our lives.

We started to do and we never stopped.

When we did finally stop it was time for Dotty to go to Heaven, and she did 20 days later.

As I look back I can't help but smile and laugh. Sure the beginning period of great burden is hard to deal with. But, sooner or later you have to move on. Start moving really.

You just have to cultivate what is. Stop worrying and obsessing about what isn't.

I guess what I am saying here is you have to keep it simple.

You go one day at a time, and you make the best of each day. If all works well you have more good days than bad days.

I just can't help but laugh and smile. That's about memories, not memory.

Thanks for reading and being here for us.



Bob DeMarco
Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The ARR knowledge base contains more than 3,811 articles with more than 306,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room