Anyone have any experience with their HD partner staying up late and not getting to bed - even though they are exhausted?

Gosh!!! tell me about it. Just got the wife in bed (midnight), BUT she will be up watching TV for another couple hours. with her movements I am constantly putting the covers back on the bed and checking on her till she goes to sleep.

I'm sorry to hear that, but appreciate the response!

it 's 2 am and still not in bed!

My husband will only sleep on the couch downstairs where the TV is. I gave up trying to get him to sleep in a bed. It makes me feel like a neglectful caretaker, but he seems to sleep down there and can watch TV when he wakes up (he never sleeps all night straight through) and then he goes back to sleep for awhile.

Does anyone else have struggles with showers and hygiene? Any ideas?

schydawg Wrote:
-------------------------------------------------------
> ...
> Does anyone else have struggles with showers...

By the time the wife is a sleep, where I would feel like I could go take a shower, I would rather sleep so most times I skip for several days.

Oh were you asking about for wife...I have been given her "sponge baths" for a couple years now. again, most nights she is so active and I am so tired we go several days. When I do give her one I am so exhausted afterwards and usually bruised

Yes, I was referring to my husband's refusal to take showers or change clothes, although I definitely understand about being too tired to take showers myself!

Anyway, I usually can only get him to take a shower once a week or if I am taking him out somewhere. He does not have severe chorea, so I don't have to do something like sponge baths. I have made the shower safer for him, and I am always right there in the bathroom to help him. He just doesn't seem to realize or care that he is not clean and is very resistant and stubborn. Any suggestions?

Related to this is his recent comments just last week about how the water was hurting him. He seems suddenly very sensitive to water temperature--has anyone else seen this? He also wouldn't let me comb his hair because he said it hurt. (He has been stubborn about hygiene for years, so this is definitely not the reason for his refusal to shower, but it may be an additional new reason.) Anyway, has anyone seen a sudden sensitivity to touch or temperature?

I have seen the opposite. My husband can't tell when something is too hot or cold and doesn't recognize pain. He can be hurt and not know it.

I'll complicate the reply by agreeing with Lisa and saying yes to your question!

the wife doesnot immediately respond to normal pain, BUT, there are things that cause her pain that I can not fathom. for example the kitchen lamp on "cooks her brain", the back door not open makes her "hot" and the towel used as a bib "chokes" her.

I do recall her (and her sister) had problems about the shower water hitting them to hard when she was showering. I drilled out the shower head so it was a more gentle cascade versus a spray

Thanks --I will pay closer attention to the shower temp and the force of the water.

Amber, my husband is so stubborn about going to bed or showering that I finally have had to decide what is worth fighting over. I decided that smoking was a bigger deal. If he wants to stay up or sleep on the couch, he can, but I have to get up and go to work in the morning, so I go to bed. In fact, I recently moved into the guest room to sleep, so that I get some rest. Sometimes I wonder if his stubbornness is a desire to maintain control over some aspect of his life as any adult would do and me telling him to go to bed and insisting on a particular time is a bit too much like being treated like a child. Anyway, dealing with HD goes on a long time and at some point, you just have to choose your battles.

Is your partner able to explain why they don't want to come to bed? Is lying prone not comfortable? Do they want to watch TV ?Or do they not want to be told what to do? Perhaps you can set up something like a comfy recliner for your partner..

Thanks for the responses. Schydawg - my husband is overly hygenic in the sense that he HAS to have a bath every night, It is the only thing that helps with his pain. He says his time in the bath and the 15 minutes afterwards are the best minutes of his day. He is early stages and still works. His mom is as you describe your husband. For many YEARS before we knew about HD, she didn't bathe. She is in a nursing facility now and they couldn't get her to shower or bathe. We found a mobile masseuse to go in once a week. The masseuse refused to give her a massage until she showered. So, now she usually will shower once a week before the masseuse comes so that she can get her massage. Maybe you can find something your husband enjoys that he would need to shower before being able to do?

Schydawg - BTW, she also complains that the shower hurts, or it hurts to stand, or it hurts to sit in the shower chair... she always says she feels better afterwards though.

JFB - I have found in my research and in my experience with my husband that people with HD are VERY sensitive to light. He can't stand bright ceiling lights. So, we have low light lamps and I put twinkle lights wrapped in a sheer fabric in the bedroom.

Schydawg - my husband and I have been together 20 years and we've always had a spare bedroom for me to sleep in when I need to get some rest as he has always been a restless sleeper and loud snorer and I am a very light sleeper. His going to bed late and then complaining about being tired has always been an issue. We just recently have found out about HD. He isn't even tested yet, but we are certain he has it. So, I don't know if this is a personality thing, or HD thing. It makes me nuts that he is so exhausted all the time, but then doesn't get to bed. I currently sleep on an air mattress in the office as we let my little cousin (16yo) move in with us a year ago. So, she has the spare room. Most HD symptoms are not something we can do anything about, but I feel like maybe we could help with his exhaustion if he would just go to bed. He has always said he needs more than 8 hours sleep. Yet he gets 5, 6, maybe 7. I also think that if he got more sleep it may help with his other symptoms to a degree. Oh well. Will just have to go to bed and pray that he does as well. Thanks all!

There is a myriad of things going on here with each of you and I can understand although I haven't experienced all of them.

Simply sleeping doesn't equate to a good nights sleep. Sleep Apnea, low oxygen at night, light sleep instead of deep sleep, etc...all play into sleep and rest. Fatigue is another issue whether caused by lack of sleep or the disease. I don't thing anyone can differentiate between the two. I recently have taken some Ambien. It doesn't work for everyone but if I can bear through the first couple of hours my sleep is a better quality (about half the time). Other times it does not help. Now I have to worry about the addictive traits it has. Not a good trade off.

The fatigue is so hard to explain but everything in your body feels like the life has been sucked from it. Personally, I have days that are not as bad and days that are really bad. Seldom do you have a really good day. From the time you awake in the morning till bedtime it can vary by day. A couple of errands may be all you can handle most days. I don't know if this is part of it but don't forget the impaired ability to initiate activities.

There is so much that can contribute to this problem. Unfortunately I don't believe there is anyone who can take all of this and give an answer. Medicine has become so compartmentalized they don't go outside the box very often.

Mike

Mike, good point about there not being any one solution--HD is so complicated and idiosyncratic. We can only share what we know from our own experiences with it. My husband is in the later stages and we have been dealing with it for more than a decade now---hence my resignation and exhaustion about certain behaviors and symptoms and remarks about choosing your battles!

In Amber's case, maybe some sleep meds would be the solution. I think you are right, Amber, that being rested would help with other symptoms. It is definitely worth talking to his doctor about this.

I do make showers a condition of going out and doing something that he might enjoy. However, I can't always plan outings (or afford them) just to get him to take a shower! I am going to see if he would be willing to try the bath--maybe that would be more comfortable for him than showers.

It's not really that my son refuses, but he will stay up all night and watch t.v. or play video games until he can't keep his eyes open any longer. He then takes his creatine powder, blueberry extract and another homeopathic mixture that he feels is helping him, and turns in. Sometimes he'll sleep for almost 12 hours, sometimes for only 2 or 3. At least once a week, he'll try to get his day back to regular hours but it doesn't last.

I hate having to remind him to bathe, after all he's not a child, but he forgets. The mechanism which helps those of us without HD to initiate that which we need to do is no longer present. Maybe once a week, if relatives are coming over, I can get him to take a shower. He has become sensitive to hot water. He also needs to be reminded to change his clothes and brush his teeth. I hate to nag him or embarrass him by reminding him to do these basic things for hygiene.

He's very easygoing, as was his father, and never asks for a thing except maybe some cigarettes or sweet rolls from the corner market, so I hate to say anything negative.

Alex&Maxmom

I know exactly what you are talking about. Donnie, my HD husband, will not take a bath except on Sundays for church. I will ask him to and he says he is ok that he don't stink. lol. He don't do anything but sit in a recliner but by Thurs. he is smelling. and he wears the same clothes from Monday till Saturday. I don't know what to do about this. He has never complained about the water bothering him.
I also hate to fuss cause he NEVER ask for anything.

Liz

Liz, hi!

It's so hard to tell someone that they need to bathe and put on fresh clothes, isn't it? My son will wear the same clothes over and over. Every day before leaving for work, or upon returning, I'll remind him to take a shower and put on fresh clothes, but he doesn't want to, or says he forgot. When his father was living and would visit us, I could give him an incentive such as putting fresh sheets on his bed, making him a "Blizzard"-type treat (like Dairy Queen) in the blender, and putting on a favorite movie to enjoy, if he'd bathe. It worked most of the time, but my son sometimes refuses and I can't make him do it, so he'll agree to "tomorrow" and that doesn't happen either. My sister will tell him if she stops by that he smells bad, but I just can't bring myself to say that to him.

About the refusal to go to bed, again, my son does try to get his days and nights back on track, sometimes by staying up all night and day, and for a day or so that works, then it's back to staying up playing video games or watching television. With my summer schedule at work he's turning in just before I leave. Today he got up when he heard me bringing the dogs in the house, but at the beginning of the week, he didn't arise until 6:00 p.m, so he had 13 hours of sleep. Hoping you and Donnie, and your sons, have had a good day, Liz.

Sharon

Thank You Sharon. You and your son as well
Liz