Hungtington's Disease in an Adult Family Home

Trauma Columnist · Jun 1, 2005

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.

adjusted_halo · Jun 1, 2005

yes, she has some family support. she only has two children, one of which was recently tested positive for the disease also. i think half the problem is that she doesn't have enough family support. she feels that her family just drops her off at her next place of residency (this is now the 6th place she's been in because of her disease) and takes off to live their own life, which in some aspects is true, sadly enough.

she wants nothing to do with any association. we've discussed this with her a few times over the past few days. now that she's on some medication that's working, not only to help her symptoms and sideaffects, but medication specifically designed for hungtington's, she's doing better. i see a positive turn-around for her. i see that she wants a 'normal' life again as much as possible and is willing to do what it takes to get that back. she knows that she will never again live on her own because of her disease, but her goal is something in an assisted-living type place.

my posting was just to see if anyone out there has dealt with this disease more, and has some suggestions to help her handle it better. with every disease, there's more to it than just medication. and with hungtington's, the symptoms change so quickly that they're constantly changing medication to go along with the new symptoms. what works today may not work tomorrow. so if we, those who take care of her and her herself, find ways in which to deal with her symptoms better, i think that she'll become less dependant on psychiatric drugs. *shrugs*

just looking for some insight. thanks for trying to help. :)

debRN0417 · Jun 2, 2005

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.

Saundra · Jun 10, 2005

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.