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Monday, January 24, 2011

Alzheimer's Support Groups, What I Learned in the Last Three Weeks


I don't know if the Alzheimer's Reading Room can be considered a support group, but it sure felt like it to me during the last three weeks...

By Bob DeMarco
Alzheimer's Reading Room

Most people understand the need for support. When you have a problem or a bad time, good family or friends will help you work your way through the situation.

Everyone needs someone to lean on.


Dorothy is improving today. Still not feeling well, but it now appears she is getting better. This is day 25.

The last three weeks could have been horrific for me. They weren't. Difficult, trying? Yes.

The last three weeks while Dotty has been sick I received an enormous amount of support from this Room. I sit here wondering to myself, what would it have been like without this support?

Horrific. No doubt about it.

If not for this experience, I guess I would never have known how much it means when someone asks, How is Dotty doing? Or, emailed asking me to write an update about how Dotty is doing.

Strength in numbers. I have no doubt about this. You gain a little strength here and a little there, and before you know it you are feeling stronger. More able to deal with difficult circumstance.

There were days when I was sitting here reading the comments and emails about Dotty and I was smiling. I caught myself smiling and then I asked myself, how am I feeling? I was feeling pretty good. How would I have felt if I was here all by myself, all alone, taking care of Dotty? Not really knowing, and still not knowing, medically what is wrong and what might happen.

Well this is what I know. This experience was very different then it would have been if I had felt lonely and alone.

This brings me to one thing that continues to disturb me day in and day out. I can't go a day without an Alzheimer's caregiver telling me they feel abandoned by family and friends. I am not one to blame. So I sit and I think. What can be done about this?

Frankly, I think something can be done. This would need to be accomplished through education. By bringing the family and friends of abandoned Alzheimer's caregivers up the curve.

The most effective way this could be accomplished would be through a third party. An intermediary of sorts. Someone independent that could explain how completely draining, stressful and taxing Alzheimer's caregiving can be.

The same person could also outline a plan for a family effort to care. I know and understand that it is not unusual for a family to be spread out all over the place -- at a distance from each other. So what could those that are at a distance do?

For one thing, they could work out a schedule where they would visit the patient one or more times a year for at least a week. This would give the caregiver the option to go on vacation or do something that have been wanting to do. Sounds simple right?

Brothers and sisters and relatives could also set up a call schedule -- a time to call the patient on regularly scheduled basis. Might not sound like much, but I actually get a bit of rest when my sister calls my mother. I also get the residual effect -- Dotty's mood improves. The telephone call can work wonders.

I wonder if people forget that a person suffering from Alzheimer's disease is made of flesh and blood? That they still have feelings? And that, even if they cannot express how they are feeling -- they still feel.

I wonder.

Now I know that there are families out there working together to care. Every time I read one of those stories I feel good. Then I start thinking. How do we make this information more available and how do we make it stick? Bring it home so to speak.

I am not the kind of guy to accept what is when it isn't right. So I am thinking about this.

In the meantime, thanks again for all the support. You do bring me strength. You certainly improve my day, and my ability to care.



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Original content Bob DeMarco, the Alzheimer's Reading Room