Hi, Everyone,
My name is Michelle, and I've been reading and searching a lot of posts for a long time, but just finally decided to actually join. My son's dad has HD (we're actually divorced, but I've still always been his caregiver). He had to go into the nursing home two years ago, because he couldn't be home alone anymore at that point. He had some bad falls and ER visits, choking episodes and it just clearly wasn't safe for him. Obviously, as all of you probably know, it was the hardest thing to do. Fortunately, it's turned out to be very positive for him. He adjusted well and my mom and I are able to go visit him everyday, feed him, take him outside for little walks in the wheelchair and get him ready for bed at night. He's 45 and definitely in late stages. He has his good days and bad days, but overall is doing very well. We get him to laugh a lot and he still loves all the interaction with us, as well as the aides and nurses (he's a flirt). He needs total care with dressing, eating, toileting, etc., and it's very hard for him to communicate, but he still smiles and laughs a lot!!

Just a couple questions I have . . .Right now, he has a lot of skin issues, infections, mrsa, etc. . . is this common in HD or is it just because he's in a nursing home where he's more at risk of being infected? Also, he has peeling skin on his arms and hands . . . we use all sorts of creams on him to help his skin conditions. I just wonder if he's just especially sensitive or do a lot of people with HD have this problem in late stages, because of poor circulation maybe? Also, his anxiety over the last year has gotten increasing worse. He anticipates us coming and just yells out, panics, shakes, gets extremely sweaty, flushed face, the whole nine . . . it's very scarey to see him like this. Once we get there, though, he calms down. The nursing home, myself and Ray's neurologist have worked together to try to come up with a good med combination to help him, but it still doesn't seem to be helping. He's currently on zyprexa, zoloft, visteril (an antihistmine for anxiety) and ativan (as needed for extreme anxiety -- which he's really getting everyday). Is this common in the late stages of HD? His CAG is 53 and started symptoms in his late 20s.

Sorry this is so long!! Thank you!
Michelle

The body of a PHD is continually moving. I have seen someone in end stages drive her hands into a wood table over and over. Any place the body bears weight on like a chair seat is going to erode the skin. I have one best quality sheepskin originally from mothercare which I don't use all the time but sheepskin for babies is ultimately soft. If I notice my ass bugging me, I sit on the sheep skin. also have you tried a hammock. Along the same line, my mother in law was in a nursing home with dementia. Hubbie brought her a ice cream covered with chocolate on a sitck every time he visited, she loved that. We also used music from her childhood on a recorder. Welcome to HDAC. I have mid stage HD.

Actually, my wife Teresa has has many of the same issues. Her sister is also in the NH. Some of the same things. Both are late to end stage. The issues start to sort of pile up. I don't think it is so much where they are as how they are. The decline starts to affect about everything. I think the best you can do is the best you can do. Just keep trying things ... and with the anxiety, it might take some pretty stiff medications to get those issues under control. It's sort of judgment call because some of them really dull them down a lot. I got past the point where I could worry about over medicating for the sake of her comfort. It was a little sad to not see all the emotions she might have, but her emotional discomfort was more important than my enjoyment of the others.

Michelle , welcome to the forum .db

Welcome.

paula

Welcome Michelle.

You'll find a lot of support here. I'm sorry life has brought this to you, but glad that you have found the HDAC. Many residents in nursing homes start to have a lot of skin issues once their mobility restricts them to bed or chair for most of the day. I believe it is more related to his immobility than the HD per se. If he is not able to shift his weight off his bottom, that area will start to get sores from low circulation and pressure of the bony parts from under the skin. I agree with Dusty that a sheepskin overlay can help with the pressure. Definitely having the staff be as diligent as they can to turn and reposition him, and keep his bottom dry.

Sadly I see the same for my future with my husband. We enjoy as much as we can now, before he gets to that point.

Welcome to the forum,
Patty

Welcome, Michelle!

Thank you so much for all your replies. Eric, I so agree with you about it being a judgment call with the anxiety. Sometimes, I think I don't want him to have all the meds, because then he's not himself, but on the other hand, he has such a difficult time with the anxiety when I'm not there, that I feel so bad for him and think I'm being selfish. I do ask him if he wants more of the ativan, if it makes him feel better, but he says no. I'm not sure if he has a lot of insight, though, into what is helping or isn't helping.

It is reassuring to know that we're not alone. Thanks again so much!

If it's any consolation, I did under medicate for quite a while to keep Teresa as she was. But there was a point, on or off medication, that she wasn't who she was in either instance. Either she more driven by symptoms of HD or by medication. Neither one was her old self exactly. A calmer her seemed to reflect a more content her. And I took a lot of comfort that she was finally content. Not to be confused with happy. Just calm, comfortable and unconcerned.

Welcome, Michelle! Good advice here...MRSA is a nasty bug and, unfortunately, is prevalent in many nursing homes. Short of a massive dose of antibiotics, I'm not sure what can kick it out of the body. I wish you the best of luck in these trying times for you and your family.



Edited 1 time(s). Last edit at 10/21/2010 05:36PM by swgirl.

Michelle

Louise

Welcome to the forum.

P

Welcome to the forum Michelle.You will find that this place is full of wonderful people with mountains of knowledge.Take good care.Gordon