I guess I should introduce myself. I'm Kristine. My husband has HD. He was diagnosed in 2010 with a CAG of 48. We knew long before the official diagnosis though. We have 12 year old twins who are not at risk. We knew the risks all along and chose to do IVF with donor sperm to have children. My husband has been on disability for many years and hasn't worked. He has always done things in the house to keep active and busy. He'd do the grocery shopping, laundry, cleaning, etc.

Suddenly, in the past 3 months, that's all changed. He is no longer driving. He can't process how to do laundry or the cleaning or anything anymore. He has major anxiety if I'm not with him. I was stressed about needing to quit my job, but thankfully my employer is allowing me to work part time hours. My husband can't sleep at night and is struggling more with eating. He's lost 13 lbs in only 7 weeks. It's so hard. His doctor is recommending hospice.

My question is about hospice. What can they do for us? And when is the right time to leave my job altogether?

Oh, and by the way, I'm 41 and my husband is 42. We've been married 22 years.

My daughter is 32 with a CAG of 60. She has JHD and has been symptomatic for about 16 years. I care for her 24/7 and she can't do the things she used to do. She does still enjoy her life and is playing her video games right now as she does every night. She also enjoys watching DVD's, going for rides and generally enjoys life. She says she's here for another 8 years at least. The key to a successful HD run is to accept that life will continually change, accept it, and adapt accordingly. Because we live in very rural upstate New York, it has been difficult to find good aides to help. For this reason, about a year ago her doctor recommended hospice thinking that would be the easiest way to get good aides. A woman younger than her came to our house to enroll her in hospice. It was not a pleasant experience. She kept talking about how Allison would be evaluated every three months "to ensure that she was making progress." She defined progress as death was becoming more imminent. We choose to define progress as living each day to the fullest. She also stated that Allison would have to use their doctors. (This was a no no as we have found some of the best HD doctors around.) She also said that Allison could no longer take xenazine which has worked very well for her. Needless to say, this visit upset both of us and I terminated it very quickly. I'm not sure how hospice works elsewhere, and I'm sure they do good things, but it was not for us. I was fortunate that I was in a position to retire very young and care for Allison full time. We did try an HD nursing home but it changed as did Allison's needs and she moved home three years ago. Almost two years ago, she chose to go on a feeding tube against the recommendation of many. She does not mind it at all and has gained 18 pounds. It takes a lot of flexibility to battle this disease and I wish you the best.
Howard, Allison's dad.



Edited 1 time(s). Last edit at 11/17/2014 08:28PM by howard.

Kristine,
my wife stopped driving around 45. (she is now 60) It is hard now to recall all the symptoms she went through. I am sorry to reply there were several years in that period I didnot think I was going to make it through. But then there was just as sudden change. the angry, parinold, obsesive attitude went away and she is now happy and enjoys her time watching TV and now telling me how to rearrange the collection of her trinkets. Her Pysical abilities have plateued, but they are at the point where falls are very likely. I now realize what I am trying to say is not as optimistic as I wanted to relay. But there are still good times.

Howard,
I am glad you replied as I was thinking about seeking some social service ie possible hospice and what you mentioned would be reason not to bother at this time. I hope you are doing well as I have not heard from you lattely.

Joe

Howard, great to hear from you again. Thanks for posting.

Kristine, I know you didn't ask about this but I wanted to talk about sudden progression because we often get questions here about this. Sometimes it is caused by a medication change and sometimes it is caused by an infection. More often it is just a natural progression. People are often surprised to see this kind of quick progression because HD is a slowly progressive disease and you would think there would be a progressive and steady decline, a straight line with a downward slope. And there probably is in terms of progressive damage to the brain. However, the brain has a lot of compensatory mechanisms. People too try to develop way to compensate for cognitive and physical problems. However, at some point, the compensatory mechanisms fail and we see a sudden decline. Then things seem to stabilize for awhile. That is why HD is often experienced as a series of plateaus followed by abrupt declines. It may be that your husband will stabilize and stay on a new plateau for awhile rather than continue this fast decline.

My husband also the last few months has really progressed he is 52 yrs old I just did a post on it called child like , I sometimes wonder if earth , moon and sun changed effects this disease , his CAG is 42

I'm sorry what you're going through, but I'm not sure why they would recommend hospice. Hospice is usually for end of life pain management, to help the person pass as quickly and painlessly as possible, sometimes withdrawal of food, or any medications that extend or add quality to life. Sometimes with hd there can be a sudden decline, that gets worse, or sometimes it can level out and improve again somewhat. If he has been barely coping for a long time, the stress of barely coping can burst the coping skills. Sometimes even stress or a virus or infection can stress hd out too, and then sometimes things can improve again for a little while. That's why I would question hospice. If you are able to care for him at home, you might at some point need extra help. Then I would consider a nursing home, where they will want to help optimize his life, as compared to hospice. So much for you to think about, I hope some of this is helpful