My husband has HD and his mum had it before him. He is 55 years old and was diagnosed in about 2001. Originally it was a series of minor car accidents and an unusual stance and way of holding his hands that eventually led us to his neurologist for an MRI which confirmed it was HD. He had the predictive test in about 1993 and was told he was in the high end of the 'grey area'. We don't have any kids together due to that result.

In 2005 he had a bad car crash and wrote off out car, but luckily no one was hurt. At that stage of his illness he was still getting around on his own and doing things for himself pretty much, but starting to look a bit shabby (buttoning up shirts lop sided etc) - but the main thing was the changing personality. He was really angry about having to surrender his license and in his mind he was still a 'perfect driver'. He would get so worked up and heated, and the poor man even tried to go to court to have the decision about his license cancelled. It was heartbreaking to watch. Gradually since then he's lost the ability to do pretty much anything. He was a fantastic musician and music teacher, who toured and taught many people to play guitar and bass, me included. We had a band together and recorded a CD (as a result of his obsession with that idea) in 2006, he could still play, but his playing was becoming a bit scrambled) - this continued to deteriorate until he lost all his students and can now only play by running finger up and down one string. (again, very heartbreaking).

He's been on pureed food and thickened fluids for a bit over a year now, and has been through all shades of obsessive behavior and getting stuck on a subject or thought process and being awake half the night making the same statement, albeit in a happy frame of mind. Not so good for me who was burning out to lack of sleep.

At the end of last year, he had been attending a day group but was throwing tantrums every morning saying he hated the stupid bus trip to the centre and didn't want to go. He was getting more agitated every day and me, more exasperated until inevitably I felt the only thing was to place him in a nursing home initially to get a break.

I was so burnt out after 3 years of caring for him full time and his relentless obsessive and demanding behavior, that I made the decision to make him a permanent resident. However, contrary to what everyone was saying to me, this has not been the 'answer' and it has been actually harder in so many ways, not the least of which is financial, as our Australian system seems to want to punish me because I'm young enough to still work, but when I took a part time job or 20 hours a week, they jacked up the price at the nursing home (decided by Centrelink) and cut back my husbands disability support pension, which left me in a position of not really having enough money to pay my own mortgage and household debts. So that problem alone has been something I cannot for the life of me, sort out in spite of my efforts to do so.

On other levels it has been so unsatisfactory regarding my husbands care whilst in the home. Many hygiene issues, which I keep taking up with the management, and they say 'ok we have fixed this' but then within a few weeks it goes back to where it was. He's had many injuries which the staff have not noticed until I notice and tell them. My husband is sad and fretting to come home constantly restless and pacing and has lost close to 10 kgs since going in there.

I wonder how many other HD sufferer's have sleep disturbances? I tried to bring him home a week ago, with the view to keeping him home, but he's awake on and off all night, so I quickly found myself exhausted and cranky again. Does anyone have any suggestions about this?

Hey Christina, i just wanted to say hi, and so sorry for all you've been through, and are still going through. I think once a person is to the stage of being on pureed foods, that weight loss and decline happen quite rapidly. I don't think it would have not happened, even if he was still at home, you know? I don't know about your system in australia, but it seems "the system not working right" is a common thread with hd everywhere. When you tried to bring him home last week, and realized it was too much for you, did you then take him back to the nursing home again? I hope so for your sake, even though i realize you may have just had to try this, just so you could see for yourself if this was even possible. I'm so sorry what you've been through, and glad you found the forum and said hi

Hi Barb, thanks for taking the time to get in touch. He is back in the nursing home, but I'm seriously not happy with how he seems to deteriorate - he's back to having a twisted ankle and blisters on his feet and just looks like crap. It's so distressing. Anyway God willing I will be able to stick with this and work out a suitable alternative. If only he would at least sleep more solidly I could handle having him home again - and there is actually a bit of respite available to us now that wasn't last year for some reason so if you know any tricks at helping the HD sufferer sleep I'd really appreciate it.
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My Phd is on Xanax and it helps him sleep...if he is feeling anxious it calms him...what drugs do they have him on?

Welcome Christina!

I was also my son's caregiver for 2 years before his symptoms became too much and he now lives in a nursing home. I can relate to all of those losses that HD brings, Tim fought losing his license, still tells me he can drive and that the test was rigged against him. I also waver back and forth because the NH does not do a very good job in the way of personal care for him, I toy with the idea of bringing him home but know that I cannot do it alone. Here, he gets benefits if he is in the NH that I cannot receive for him if he lives with me. It is heartbreaking for everyone. But he has made friends in the NH, he is in a unit that specializes in behavior disorders so the age group is more suitable and they all have issues which makes him just one of the group. I am very involved and visit or bring him home overnight at least once a week. I call in between times. There are no easy answers here, just take it day by day and do the best you can. I also agree that his meds should be reviewed and adjusted for the symptoms he is having now.

Take care,

Carla

Welcome to the forum!

Welcome.

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I also played the guitar and recorders but completely forgot the guitar after buying one for a grandson. but my guitar was my sister Joan who died of HD, it is a kent made in sweden and my daughter is playing it. guitar is 45 years. I still play the piano and tenor recorder. I taught over 1000 kids to read music, sing and play the recorder after the school cut music in the rural schools.

I think playing music helps with HD.BUt I cannot sing either from HD and I had perfrect pitch.

HI there...dusty blues....you're right that music helps - with everything. That guitar must be very precious to you! I play my hubby's guitars in my band the most treasured on is his '72 Sunburst Strat....it's so beat up but the most fantastic guitar to play. I've been using it since 1997 coz in those days he took to play his Telecaster which he just liked better.

Nice to meet you here...all the best

Hi Carla...nice to meet you. Sorry for you with all you're going through too! Must be so hard with your son. It's all we can do really is keep trying things out and see what works and what doesn't. I'm gonna bring my hubby home again for a while and see how I go. My sister has volunteered to sleep over a couple of nights a week to just help give me a little break/sleep - she's been a nurse all her life and is not phased by being woken up at night so I'm lucky to have her.

Welcome, christina. As I tell lots of people, I'm sorry for your reasons for being here, but given that, I am glad you've found this place.

Your husband is lucky to have such a loving wife, trying to figure out what is best for him. I hope maybe either an alterred drug and/or alterred living situation can bring him (and you) some more contentment.