Monday, June 2, 2008

More on the Caregiver's Conference

The purpose of this conference was to educate and support an audience of caregivers who were struggling, largely in isolation, with all sorts of issues, and to provide an opportunity for them to share experiences and to ask questions.

At first, I didn't want to make a presentation about my mother. I thought it would be an improper invasion of Mom's privacy to talk about her in a public forum. I knew I would have to talk about her long, slow, 16 year descent into the opaque fog of multi-infarct dementia. This is an emotionally powerful subject for me and, even though I have done a lot of public speaking, I wasn't sure I could handle this one in a calm and professional manner.

But the program sponsors prevailed. All of the other panel participants were women, they told me. They said that the program needed a man who was willing to share his experience as a caregiver, as well as his feelings. Men don't easily do this kind of thing, they said, so "please," they pleaded, and finally wore down my resistance. They pointed out that lots of men are caregivers and that these listeners would appreciate hearing a presentation by a man about this sensitive subject.

In retrospect, they were right. The male caregivers in the audience, and there were many, directed most of their questions to me, and quite a few approached me afterwards to thank me. They suggested that a book describing my experience as a male caregiver is urgently needed in the marketplace. Existing books, they said, do not address their feelings and unique responsibilities as sons and husbands.

I also asked many of the women present at the conference if such a book would find a readership among female caregivers. Interestingly, they thought it would, that women, too, would benefit from reading a man's point of view on the care giving experience.

The resulting book: "Dementia Diary, A Caregiver's Journal," is my memoir about what it's like to be the only child, a son, and the caregiver of a widowed and cognitively impaired mother who lives alone half a continent away.

Alzheimer's and other dementias are diseases that know no boundaries. They are blind to the categories in which we usually place our fellow human beings. They can occur at the age of 55 or 85. They can happen to Blacks, Whites, Hispanics, Asians, Jews, Christians, Muslims, males and females, rich and poor. Ex-presidents have not been spared.

Tears are shed by husbands and wives, sons and daughters, brothers and sisters, in fact anyone responsible for the care of a loved one with dementia. I hope that this book will help all such wonder-workers to understand that they are not alone. My mother would want it that way.

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