Sharing Our Stories of Alzheimer's and Dementia

  • Human beings are social creatures. I don't think that statement will shock anyone. Many of us have learned that sharing our troubles with someone who understands, lightens our load. Explaining something like caring for a dementia-afflicted spouse or parent, in person or in writing, to someone who knows what we are going through can help keep us sane.


    When I was growing up, it was - at least in my neck of the woods, the upper Great Plains - considered unseemly to talk about one's family in any but a positive way. Counseling was something only those with dire mental health issues looked into, and whatever happened you, well, you just dealt with it, alone. That was several decades ago.

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    We now live in a more enlightened time. The idea that people must suffer alone; that they must not let on to others that they are struggling; that idea has been proven unhealthy for body, mind and spirit. I believe that the best support comes from people who have been through similar situations as those we struggle with. The internet has made support groups of this kind accessible at any time of day or night. They have made the support groups that we'd love to attend, but can't physically get to, available with a few clicks on our keyboard.


    After my dad came out of brain surgery with instant dementia, I was, of course, devastated. The whole family was. He rarely made sense when he spoke. However, he would, at times, seem to "snap out of it." He would suddenly look at me and be Dad again. The time would be brief - sometimes mere seconds. It was heart-warming and heart-breaking all at once.


    During one of these times, Dad looked at me and said, "Do they know what happened to me?" I was stunned. I could tell that he, unfortunately, knew that he wasn't himself. He wanted people to know that he couldn't help what happened to him; how he talked; how he acted. He wanted people to know his story.


    This, my friends, set a fire in my gut. I had to write Dad's story. While I was thinking about how to do this, I listened to other caregivers tell their stories. Then I knew. I needed to write for all of us. That was the birth of my book, "Minding Our Elders", my Web site, my blog and my contribution to this wonderful HealthCentral site, "Our Alzheimer's."


    Am I doing my elders an injustice by making their last years public? I thought long and hard about that. My real name is on everything I write. I was putting my beloved parents' devastating last years out for all to read. How would their friends react?


    Most seemed fine with it. They told me the love and respect I had for the elders I wrote about came through in the stories. I can tell a few thought I betrayed them. That hurts. But the fact that Dad wanted his story known, coupled with the knowledge that my experiences could help others who were struggling with caregiving issues, made this decision to write one I could live with.


    It's taken me many years of living to learn that no matter what I do, I can't please everyone. I think I'm finally getting there. I truly believe that human beings are meant to help one another through the tough times in life. To do that, we must share our pain and what we've learned along the way.


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Published On: April 06, 2007