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Joan Sutton

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The Best Alzheimer's Support Network Is Virtual

Posted: 10/03/2012 12:02 pm

Once the unheralded and forgotten group, caregivers are now the subject of a cottage industry of advice. It pours at us in blogs, articles, books, and runs the gamut from saying that one must enter the Alzheimer's world completely, forget all other aspects of self, and become totally the caregiver, to those who will tell you that the patient doesn't know anything anyway, so you might as well get on with your life.

I am too selfish to do the former, and too much in love to believe the latter, so I bumble along, taking each day as it comes.

The most amusing advice that I was given -- over and over from assorted voices -- was that I should see a therapist.

What, I wondered, were these people seeing? Did I look as though I was falling apart? Or were they just distancing themselves, afraid that I might unload my concerns on them? Or were they like so many in our society who think that every hardball life throws is something that should be taken to a therapist? That life should be just happy, and that there should be no downside. Let's exorcise sadness from the lifecycle.

"It must be depressing," these people would say. Well, I am certainly sometimes sad, but I am not depressed. I draw a distinction between the two. Depression is a very serious, debilitating, life destroying illness that needs to be recognized, understood and treated.

But sadness is simply a part of life. During our lifetime, each of us will meet events, situations, diagnoses that will make us sad. What kind of person would I be if watching what is happening to my husband did not make me sad? And every day is not filled with sadness. There are still hugs, still moments of laughter.

Finally, though, I did listen to the voices and I went to a therapist twice. And this is why I would never make it as a politician. Talking about myself, probing my various nerve ends for 50 minutes straight just bores me to death. I am just not that interesting. I was brought up in the Scots-Irish way -- just get on with what you need to do. A kind of version of the alcoholic's prayer -- if you can change it, do, if you can't, then so be it. Or, as Winston Churchill is supposed to have said, KBO -- Keep Buggering On.

Well, if not a therapist, why not a support group? I have found the online support groups to be a tremendous help. I can turn to them any time, in the middle of the night if necessary, skim through the various postings to find the ones that have situations similar to mine. I suspect that taking care of a parent is different in many ways from taking care of a spouse -- so I look for the experiences of other partners. Those postings have provided me with a great learning lifeline.

But I have not yet personally attended a support group. Note that I say "yet." There may come a time when I will need the physical presence of other caregivers, the special understanding and comfort of group support. But right now, when I do get some time to myself, I want to get away from the Alzheimer's world, to be with a friend and talk about books, politics, the theatre, catch up on the doings of other friends (yes, you may call that gossip!) -- anything but Alzheimer's.

So, I will offer no advice. Each caregiver must find his or her own way. But over the next few postings I will share some things that have worked for me.

Kitty Carlisle Hart once told me that she began every day by looking in the mirror and saying to her reflection, "I forgive you." That is not a bad way for any of us to start our days. I do that now, and I add to it, "Please, give me the patience I need." For me, patience is the hardest part of this role. I have always moved quickly, made decisions fast (sometimes too fast), and have been prone to skip the small talk and get to the point.

Ironically, I am married to a man who moved, thought, and acted even more quickly than I did. Once, when he suggested we go for a walk, my answer would always be, "Yes, if I don't have to run." Now his brain processes everything very slowly, if at all, and he has become so physically frail that moving from A to B is a major effort.

So, I start my day by forgiving myself for yesterday's impatience, and praying, praying, for patience today. May both be yours.

 
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