Caring For... You!
Caring for this person with Huntington disease is a challenge. It challenges family caregivers and professional caregivers alike. The disorders of movement, cognition, and emotion are ever-changing and progress slowly over many years. This greatly challenges the skills of even the most experienced, formally trained caregivers.
It's difficult to go through a progressive disease with anyone; to do it with someone your own age or younger, as is often the case with the person with HD, is even more difficult.
It's hurtful to have someone with whom you work very hard direct his anger at you and hard not to take it personally. To have to allow someone whom you're trying to protect to take careless risks is very unsettling. It's also discouraging to realize that, no matter how hard you work, no matter how clever you are, and no matter how deeply you care, the course of this disease will not change.
Nobody can beat Huntington disease, but there are many little victories to celebrate along the way, such as figuring out how to avoid or redirect a person's anger, discovering a new way to approach an old problem that finally works, or realizing that what you had worried about happening was really no big deal at all!
In the face of it all, first and foremost, you need to take care of yourselfnot only for you, but for this person that you care so much about. If you are too drained, too exhausted, or too weak, you will not see the heroic struggle made every day by the person for whom you care.
Many wonderful caregivers draw great hope from their partners in this struggle. That hope charges batteries. That hope is the second wind when you need it. But without you there, in good health and in good spirit, there is no hope. Take care of yourself.