May 19, 2011

Alzheimer's Caregiving Difficult Not Horrible

Yes, Alzheimer's caregiving is difficult under any circumstance. But it can turn into a wonderful opportunity to experience life...
By Bob DeMarco
Alzheimer's Reading Room

Are Alzheimer's Caregivers
the Forgotten?
Every so often someone from the media contacts me and they want me to say that Alzheimer's caregiving is horrible. Isn't it horrible? When they do this (fill in the blank) isn't it horrible?

I actually had someone ask me recently if my mother has tried to stab me with a knife. Do I think she will as the disease progresses? Where do people get these ideas? Is that the best question you have to ask?

Here is a tip on reality. Sometimes a person gets stabbed with a knife. I know this because I read the paper. You don't have to have Alzheimer's to stab someone.

I did think Alzheimer's caregiving was pretty horrible when I first received the word -- Alzheimer's. Most of us are catapulted into a kind of emotional and psychological black hole that is hard to describe when we hear the word -- Alzheimer's.

Then, after a time, we get our feet back on the ground.

Once we get over the initial shock typically we start to seek out information. Our focus changes. We want to learn what we can do, and how to do it. The acquisition of information is powerful.

For the most part, Alzheimer's caregivers turn to other Alzheimer's caregiver. After all, we are the ONE(s).

If a caregiver is either lucky or fortunate, they run into another caregiver that made the hard but simple decision -- they decided to continue to live their life along with their Alzheimer's sufferer. No doubt, living a life with someone as they progress down the path of Alzheimer's is difficult. The caregiver needs to adjust, they need to change the way they do things.

Here is an observation I made hundreds of times (so far). Once an Alzheimer's caregiver decides to do, rather than "vent" they change. This change comes about because of the change in their brain. In their brain, interesting.

The proactive Alzheimer's caregivers decides to do. This changes the way their brain is wired. This change leads them away from the "lamenting of their own sad fate", away from "venting" and puts them on the path to the positive. The path of doing.

Yes, Alzheimer's caregiving is difficult under any circumstance. But it can turn into a wonderful opportunity to experience life. Life.

I know this, most Alzheimer's caregivers have very big hearts. They unleash the power of the brain and their hearts grow in a way they could never have imagined. The brain, the heart.

Because of my position here, I have watched from afar, mostly from email, as Alzheimer's go from a place of angst, worry, heartbreak, and desperation to a new place they could have never expected. A kind of wonderful place that is hard to describe to anyone that has not been in our shoes.

Here is something else I know for certain, the majority of persons suffering from Alzheimer's are sweet. They are very kind in their own way. Maybe they can't say it, but they appreciate an Alzheimer's caregiver in a wonderful nonverbal way.

There are mean spirited people in the world. A tiny fraction of Alzheimer's patients are mean.

There are also lots and lots of wonderful people in the world. Some of them have Alzheimer's. I learned this first hand.

I know lots of wonderful people now. I wouldn't have known them if I had not become an Alzheimer's caregiver.

So yes, being an Alzheimer's caregiver is difficult but it is not horrible. You learn a lot about life, and a lot about yourself while caring.

All you really need to do is think and feel. Let your brain and heart take over.

From my point of view it is fascinating to watch Alzheimer's caregivers grow. I do get a bit frustrated when I learn that some Alzheimer's caregivers have not yet understood the "importance" of what they are doing and accomplishing.

To them I say, use your heart and use your brain. It isn't that hard to rewire your brain and get focused on the positive. Once rewired your view will change.

Just so you know, you get to keep all of this for the rest of your life. Your life will be fuller and richer.

Richer, not horrible.

Do Alzheimer's caregivers feel different as a result of their experience?

Let me ask you this simple question. When your Alzheimer's patients laughs does your heart soar? There you go.

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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