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!
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 anticipating 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 understanding 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.