Tuesday, October 7, 2008

Preface to Dementia Diary

As promised, here is the first free excerpt from my memoir, "Dementia Diary, A Caregiver's Journal." Hope you enjoy it and return for the next installment.

Next week, watch for the first Chapter: Who Is Minnie Sweet?"


This is neither a guidebook nor compendium of advice about how to cope with caring for an aging parent or spouse with dementia. There are literally hundreds of such tomes available. My hope, instead, is that this book will become a kind of "portable support group" for caregivers.

Dementia Diary is first and foremost a 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.

Those who know my family will recognize that the name I’ve given my mother in this book, Minnie Sweet, is not her real name. Why did I change her name? I have two reasons.

First, even though the narrative is largely autobiographical, some facts have been fictionalized for effect. Second, and more important, writing this memoir has been one of the most emotionally difficult projects I have ever undertaken.

In order for me to attempt it with even a semblance of objectivity, I required an artifact. Using fabricated names was that artifact—it was a distancing technique that enabled me to approach this powerful topic with safety, compassion and humor. So all of the names in this memoir are fictitious, including my parent’s and mine. This worked for me and I hope it works for you.

It is also possible that someone with one of the names I used may read this book. If so, please understand the happenstance involved, and accept my apologies. Any resemblance to any real persons living or dead is purely coincidental.

I also intend for the institutions that served my mother to remain anonymous. She was fortunate to have found her way to some wonderful facilities and programs that, I believe, extended her years and the quality of her life. However, for consistency with the “semi-fictional” nature of this memoir, these institutions are best left unidentified, and any resemblance to actual facilities and programs is purely coincidental.

A word about Mom’s long, slow descent into the opaque fog of multi-infarct dementia: This is a different syndrome than the well-known dementia called Alzheimer’s disease, and it can be caused by frequent “silent” mini-strokes.

Here is the way a physician described the condition to me: the “victim” of such events may not be, indeed usually is not, aware that anything out of the ordinary has occurred. Neither are his or her significant others.

Perhaps there is momentary weakness, headache, or dizziness, but nothing major. Over time, however, enough damage is done to the brain that symptoms begin to appear. While some of these manifestations are unique to this syndrome, all dementias have certain behavioral commonalities that will be recognized in these pages.

I address this book to readers who are actively involved in care giving for loved ones with dementia, to those who have had this responsibility in the past, and to those who expect to face it in the future. Perhaps you will find a nugget here and there with which to identify, and from which to draw some comfort and support.

I also address this book to professionals charged with the care of persons with dementia. Perhaps it will provide a bit of insight into the perspective of a family member attempting to understand and deal with a loved one’s loss of identity, memory, and cognition.

The inspiration for this diary was a talk that I was invited to give to a conference of caregivers sponsored by an adult day care program for people with dementia. The agenda included speeches by a psychiatrist and a geriatrician, followed by a panel of four caregivers reporting on their own experiences.

The purpose was to educate, inform 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 this presentation. I thought it would be an improper invasion of my mother’s privacy to talk about her in a public forum. Besides, it was an emotionally powerful subject and, even though I had 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 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.

I learned a lot that evening. The presentations and audience questions taught me that the kinds of bittersweet anecdotes described in Dementia Diary are the common lot of all who deal with the reality of dementia in a loved one.

This is a disease that knows no boundaries. It is blind to the categories in which we usually place our fellow human beings. It can occur at the age of 55 or 85. It can happen to Blacks, Whites, Hispanics, Asians, Jews, Christians, Muslims, males and females, rich and poor. It has not spared ex-presidents.

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 wonderworkers to understand that they are not alone. My mother would want it that way.

In the pages that follow, her story has been deliberately paced to mimic the unhurried rhythm of her gradual slide into cognitive disability, barely perceptible on a day-to-day basis, but dramatic and frightening when viewed through my own retrospectoscope over the long term.

Some chapters, especially the early ones in the book, may not reveal Mom’s (Minnie Sweet’s) growing deficits to the reader. Some of the anecdotes may seem like the normal foibles of an aging woman rather than a person with a serious dementia. That’s what I thought too.

It’s only when we get to the later stages (or later chapters) that we can see, with hindsight and in the light of her full-blown memory impairment, that the signs and symptoms were there from the beginning.

Keep in mind, also, that the young Minnie Sweet would have been mortified by many of the attitudes and behaviors of the elderly Minnie Sweet. We would have had to explain to her, just as we ourselves had to learn, that the latter was part of the disease process, and not her true personality and character.

Finally, it is my wish that the reader will see beyond the sadness, tragedy and, yes, comedy sometimes associated with the evening hours of life, and will recognize that dementia, while terrible, does not diminish the essential humanity of the afflicted individual."

Again, next week, watch for the first Chapter: Who Is Minnie Sweet?"

If you'd like to buy a copy of the book, it's easy. Just click the "Buy Now" badge on the right, or the link to my website just above my Wellsphere badge. And feel free to post your comments below.

Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"

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