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From the foreword
What is it like to live with
Alzheimer’s? Most of us find it hard to talk about.
This book breaks the silences between those who live with Alzheimer’s—or
a similar disease --and those who don’t. We complain that other people
don’t understand what Alzheimer’s is like, but how can they understand
if we can’t tell them?
There was so much I couldn’t talk about during my husband’s illness,
even to those willing to listen. My husband “Pete” was diagnosed with
“probable Alzheimer’s” in 1987, and died in 2001.
As Pete’s illness progressed, I felt increasingly lonely, as I was drawn
into a separate world that had less and less connection to the other
world I lived in. In the familiar, “normal” world, I went to work and
did my shopping and chatted with friends and colleagues. But my
Alzheimer’s world was one they could barely imagine, even if they knew
of Pete’s illness. I didn’t often try to explain it: it was too painful
or private, or just made me feel more isolated. For example, a friend
might complain that her husband almost forgot their anniversary, but I
would not mention that my husband could not tell you the names of his
children. I couldn’t share the funny-but-painful moments like the time I
found Pete using his toothbrush to brush his hair. It was lonely at home
as Pete lost conversational skills, and it was lonely to be living in an
Alzheimer’s world so unfamiliar to my friends.
Yet it took me almost seven years to admit that Alzheimer’s is too hard
to do alone, and to join the Alzheimer’s community that was waiting to
help. For me, as for many, joining a support group made all the
difference in the world.
Voices of Alzheimer's is about making connections.
If you are a patient or a family member or a friend, this book
can connect you with others facing a similar challenge. It may also help
you explain to others what it’s like for you at home. If you work with
dementia as part of your job, it may give you a larger sense of the
family’s experience. I hope too that this book will help bridge the gaps
between those who live with dementia and those who don’t.
Yet this book is more than that. It’s by people who have learned to
live with Alzheimer’s, despite the illness --and because of it. It's
about coming to terms with the hardships and finding some treasures
hidden in this new and different world. It is a book about life itself. |
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