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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.
I knew I would have to talk 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.
Anyway, 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, andquite 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.
So, Dementia Diary, A Caregivers Journal 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.
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.
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.
Alzheimers 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.
Finally, it is my wish that caregivers 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.
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