My husband has this terrible disease. He was diagnosed in 1999. In August 2012, even though I had to take him to work with me for 3-4 months, I finally couldn't do it any longer and had to put in a nursing home.
In December 2015, I was told he had about 6 months to live and hospice has been coming to the nursing home to visit him. Even though I go every other day to see him, he doesn't remember the last time I came to see him. My mother lives with me and she has dementia, so I have to take care of her as well, so I am unable to go see him every day.
It is a very tough disease and a 50/50 chance that our sons may come down with it and there is a genetic test they can take to find out if they have the gene. I have to say I am a little proud of them because they don't want to know, because it is a death sentence and they want to live life day to day.
If you need to vent, please don't hesitate to contact me. I have gone to a support group for over 3 years now and it has really helped to talk with others who either have the disease or lost family from it.
They seem to have a very active group on Facebook (Huntington's Disease Society I think). As a caregiver for someone with this kind of devastating condition support sounds really crucial. I worked on a research study about Huntington's (not cure though) and met a few people living with HD.
It's a VERY tough condition. Some meds can help it a bit, and there are some clinical trials for it too. One is at clinicaltrials.gov/ct2/show/NCT02215616 and you can use their search feature to look up others.
I haven't cared for anyone with Huntington's but I am more than willing to listen to you vent if you need to. I helped my dad (87) care for my mom who had Alz. and died at 92. I bet there's a lot in common with us and the others on this site. Plus we are good listeners and always try to help. Blessings to you, Lindaz.
Not I but I know its a really hard disease. If no one here then there may be a website you can find by typing in huntington online support. I wish you the best
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In December 2015, I was told he had about 6 months to live and hospice has been coming to the nursing home to visit him. Even though I go every other day to see him, he doesn't remember the last time I came to see him. My mother lives with me and she has dementia, so I have to take care of her as well, so I am unable to go see him every day.
It is a very tough disease and a 50/50 chance that our sons may come down with it and there is a genetic test they can take to find out if they have the gene. I have to say I am a little proud of them because they don't want to know, because it is a death sentence and they want to live life day to day.
If you need to vent, please don't hesitate to contact me. I have gone to a support group for over 3 years now and it has really helped to talk with others who either have the disease or lost family from it.
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