Hungtington's Disease in an Adult Family Home

In our area, we have a gentleman who visits the ER occasionally and he has Huntington's. It is an awful disease. Within the last few years, they have identified the genetic marker for the disease so siblings and children can find out if they have it too. Does she have family support? There is a national Huntington's Chorea Association that might be helpful.

I have had experience with two residents with Huntingtons. The first was a young female, in her early thirties...sad. Watched her decline to the point she could no longer walk or communicate. She was not violent. This was about 15 years ago. Lots of meds were given to help control her spasicity (forgive the spelling) and just sopportive care. The second and most recent was a 50'ish male. He was violent. It he was a real care challenge. I think that part of his combativeness was due to the illness, part due to depression, because he at times knew what was going on. He would throw himself in the floor and strike out. The Primary MD and Psychiartist tried very hard to control his behaviours with medications. I felt we did the best we could in the nursing home to handle him, but it was tough. We tried to get him into a facility that specialized with Hungtintons, but the only place we could find was in Maryland or somewhere north, and we were told they only took paying patients. Our gentleman had exhausted his resources and could not pay. We had him seen at a clinic by a Hungtingtons specialist which helped alot, but the disease progressed. In order to care for him we had some staff who had established a trust relationship with him who cared for him all the time, but even then, he struck out on bad days. He had to be fed and changed eventually and died from pneumonia/disease progression. It is such a sad disease, but then there are many sad diseases. It is a real care challenge though because some are violent, some are not, and every day is different. The disease is progressive and symptomatic treatment is about all there is. Unfortunately, with a diagnosis of this, the person will never live a normal life again.

I feel for your patient, because the progression of the disease is inevitable. After having cared for three of them, what you described is pretty typical. They become uncontrollable, the family can't deal with them, and the periods of lucidity make them miserable. Also, self-flagellation appears to be a common denominator. We had one that presented on admission as claiming to be Satan. It makes you wonder how many of the possession cases treated by the church over the centuries may have been this disorder. But the best you can hope for is to keep adjusting the meds, lots of patience, and try to keep them happy and distracted when they're having a good day.
Two of our families went to the support group meetings and found it very helpful and informative.

Good Luck.