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hopeinhim Asked March 2016

Any tips on motivating my husband (58) diagnosed with Huntington's Chorea Disease?

His symptoms are of cognitive nature(alzheimers)mainly. This is a progressive neurological disease which also has no cure. Doctors say it is a cross between Alzheimers and parkinson's disease. He was always a handy man, busy, involved with all kinds of tinkering. Now, he cannot drive or work due to bad decision making, loss of concentration, memory loss, executive functioning loss and apathy. it breaks my heart to see him unmotivated for anything, but watch tv and sleep. he gets treated and tested through the UCONN HD program at no cost to anyone. praise God for that. I try to motivate him to help with simple tasks at home or encourage him to go out with me. sometimes he complies, other times, not. at this time he is assessed as having a mild to moderate condition, yet is progressing - slowly. again, I am so grateful for that and believe the Lord is intervening. I take it a day at a time, yet I find myself stuffing my feelings a lot, then losing it. I know that is not healthy but people do not want to hear the sad story over and over so I keep it in. also, I deny it as I try to stay positive. it is like I ignore it. I doubt myself at times and think I am doing it right and beat myself up if I get frustrated, though my HD support group says, 'it is normal to get mad, sad, denial, bargaining and/acceptance (the grief cycle)' and we encourage each other.
I would like to hear some tips on motivating your loved one that I may not have heard or tried. thank you for listening. my name is patti and husband's name is dan.

rebarcadman Mar 2016
Hi, Patti. I'm Keith, and my HD+ wife is Vickie. Not sure about motivating, but we are in similar situations and I struggle with many of the same things you listed. Don't know if it will help but I have found that things like paint by number, puzzle books, Sudoku, etc. help my wife. Yes the chorea makes it hard to stay in the lines on the paint by number, but together we look at it, share the joy that it is something she worked on by herself, and build memories that we can carry on, long after the painting is done. She also does tie-dye t-shirts. This is something they taught her when she used to attend the HD weekend camps. Hope this gives you some ideas...

JessieBelle Mar 2016
Patti, I am so sorry. I don't know how much I would try to motivate him. I think I would try to help him live the most enjoyable life he can before the disease progresses. Does he also have depression? It would be understandable. If you think his mood could use some lifting, please talk to his doctor. I wish I could be of more help. Sometimes we just have to meet the person where they are and let them do what they want within reason. I'm sorry you and Dan are having to go through this.

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cwillie Mar 2016
It is my understanding Huntington's is always a hereditary disease, are there no others in his family that can give you any insight? I'm sorry, any advice I could give would be gleaned from the web. I hope someone else can help you.

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