This handbook has been a team effort over the last two years. Our thanks to the following
people who contributed to the final product: Gerrit Dommerhoft, The Netherlands; Lori Quinn, PhD, New York, NY; Herb Rukin,
Lowell, MA; and Mary Shea, Toronto, ON.
We are also indebted to the following people who reviewed and commented on
various drafts: Phyllis Bain, Fonda, NY; Roseanne Cetnarskj, Edinburgh, Scotland; John Evans, Housatonic, MA; Charlyne Hickey,
Rochester, NY; Tracey Plourde, Toronto, ON; Gerleine Schoonover, San Antonio, TX; Steve Smith, Norfolk, England; Bob Stein,
Lancaster, PA; and Seth Washburn, Louisburg, NC.
Carol Moskowitz, RN-C, New York, NY and Martha Nance, MD, Minneapolis,
MN edited the manuscript and made significant contributions to both text and tone. My son, Jimmy, managed word processing
and computers, and my wife, Maureen,reviewed many drafts. Shirley Procell of Bossier City, LA contributed her prayer. Thank you, team!
A joint initiative of the Huntington Society of Canada and the Foundation
for the Care and Cure of Huntington's Disease, this publication represents the final project overseen by now retired Executive
Director of the Huntington Society of Canada, Ralph Walker. Ralph's determination over the past two decades to fill the void
of information about HD has been a profoundly generous contribution that resonates throughout North America and, literally,
around the world. The collection of educational materials produced by the Society is a national treasure graciously shared
with people seeking information about HD on every continent.
This is also the final project for the Foundation for
the Care and Cure of Huntington's Disease (FCCHD). In keeping with the wishes of its late founder, Dennis Shea, the Foundation
will cease operation in June 1999. As Program Director of the
Foundation, Liz Mueller has spent more than a decade bringing
people from diverse backgrounds together to collaborate on two missions: curing HD, and improving the quality of care given
to those who have HD. She's been a fine coach, confidante, collaborator, contributor, and colleague to many.
All of
us who worked on this handbook are grateful to have collaborated with Liz and Ralph on this project.
The Huntington
Society of Canada wishes to
thank The Trillium Foundation for funding the publication of this book.
On a more spiritual level, our collective gratitude to the hundreds of people who suffered
through Huntington disease and taught us the lessons contained herein along the way. We pray for a cure for HD. Until there's
a cure, there's only
care.
May our effort improve the care of those who suffer HD until that happy day! Hopefully,
any day now... |
Introduction
WELCOME
The fact
that you're reading this handbook shows a commitment to the person with Huntington disease (HD) in your care. He is a very
special person. He was probably doing well in life before HD began to show itself. Most likely, he had begun a
career and family.
But as his HD progressed, he faced challenges that we probably will never have to face.
The list of things he has already lost to this relentless disease would force most of us to abandon all hope. He's lost his
job, his friends, his independence, and his ability to care for himself. He may feel guilty that he's put his children and
his grandchildren at risk for HD. And he may see his disability as a burden he has imposed on both you and his family. And
now he's in your care.
You, the caregiver, are a very special person too. Whether you are in a long-term care facility
or at home, the challenges of caring for this person with HD may seem daunting at times.
Most health care professionals-nurse aides, nurses, social workers, rehabilitation therapists,
and psychologists-finish their careers never having cared for a single person with HD.
Simply by caring for one person with HD, you
are about to gain a wealth of knowledge and experience. By becoming a partner in his care,
by understanding how HD progresses, and by recognizing how it affects his mood, thinking and movement, you can affect his
life in a very positive way. Maybe to a degree far greater than anyone else you've ever had in your care. He's in good hands!
Purpose
Of This Handbook
The aim of this handbook is to familiarize you with HD, so that you can recognize its symptoms and know what to expect
as it progresses. Included are some general principles of care and tips that other caregivers have found helpful. By antici-pating
the problems you'll face as the disease progresses, you'll be better prepared to find solutions for them.
Families
touched by HD often say that under-standing HD is the hallmark of a good caregiver. That is, if you understand that it is
a disease of families, a disease of both body and mind, and a challenging disease with no cure and no easy answers, you'll
do well. If you persevere through his adjustment to you, recognize and support him through his anger and his sadness, and
communicate with him, then the good days will outnumber the not-so-good and you'll be an excellent caregiver... because you
will really understand HD.
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