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Topic Sleep help Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2019.09.17 10:11
Hello,
Does anyone have any tips for helping your PWP sleep through the night? My husband was never a good sleeper, but for the past many months it has gotten particularly bad. Getting up and yelling, screaming, moaning, singing even, banging the wall like a drum, scraping chairs across the tile floor, leaving the refrigerator door open so the alarm goes off and wakes everyone up, turning and leaving all the lights on, opening and closing the front door repeatedly, or the garage door (that will wake you up!) gosh I can't even count all the ways we have been woken up in the wee hours. Using a white noise background does not help as my husband is just SO LOUD.

It wasn't so critical in the summer, as we could just sleep a bit later, but with school back in session, we just can't keep on like this. Our youngest is in sports and we have to get up at 5:30 so he can get to practice on time. Last night my husband woke everyone up at 1, 3:30, 4:20, and 5:05. Prior nights were almost as bad. My son has another huge test today and is so grumpy at the lack of sleep and pissed off at his dad. His grades are already suffering and school has just started for the year.

I'm not so chipper myself, as we have not gotten to sleep through the night in weeks and it is taking a toll on me as well. As I was awakened yet again last night, I wondered if other caregivers take antidepressants to cope with keeping their loved one at home? And then, if they do, at what point does that end? Does my son have to suffer inadequate sleep because his father has PD? Our lives already revolve around my husband and his PD, and I'm wondering, when do our kids get to come first?

And selfishly, why should I clean my husband's bathroom again, which I have to do almost daily because he refuses to sit to pee and with his lousy balance can't aim worth a darn, plus he has one hand on the S-pole to keep him from falling, so urine goes literally everywhere-floors, walls, shower curtain, linen closet-everywhere but the pot, why should I clean it again, when it is only going to get soiled all over again in a few hours? Ugh, sorry for the rant, I am so weary and tired.

I am wondering whether I should ask the neuro for a sleeping pill prescription for my husband-does anyone's PWP take a sleeping pill? Does it work? Is there one that doesn't cause worse dementia/psychosis?

By Lynnie2 On 2019.09.17 14:20
My husband's MDS, Motion Disorder Specialist prescribed Quetiapine 25 mg.
Wayne was not sleeping well at night.
The worse time was when he got up and I couldn't get him back to bedroom. It was terrible. I think he was getting his days and night mixed up.
He started out with 18 mg. of Quetiapine and then they increased it to 25 mg.
He slept all night except for maybe getting up to go to the washroom, but it was much better.
Just be careful at the beginning that you are around if he want to get up to go to the bathroom.
As for the dementia I can't really say but dementia could happen anyway with PD.
I don't know what the medication would be called in the State. I live in Canada.

By Busymom On 2019.09.17 14:37
Hi, I do feel your pain. The "awake at night" thing was one of the worst things we had to deal with before my husband passed, for both me and the kids. Like you said it is a worse situation when school is in session, you can't just let the kids sleep in. But I had to get up and go to work each morning myself, so lack of sleep...for a few years...was always a real problem for us. I ended up sleeping in a different room, just to try to keep away, keep apart so I could sleep, as much as possible. Lack of sleep is bad for everyone, it was very bad for the kids to be awakened like that constantly, even our health suffered. Nobody had any suggestions for us except to hire a night-nurse, which we couldn't afford. His Dr put him on sinemet CR for his nighttime dose, because it tended to make him a bit sleepier, but still it didn't really solve the problem.

For him, the issue was going to the bathroom. He refused to wear any sort of Depends-type product, but he also suffered from constantly feeling like he needed to use the bathroom, so he would get up several times every single night and wander around the house looking for the bathroom...his dementia caused him to not be able to make mental maps or recognize anything in the house. He would go around turning on lights, and opening doors, he would go to the kids' rooms and barge in at least once a night, flip on their light switch and ask "Excuse me, is this the bathroom?" This would go on until somebody got up and led him to the bathroom, waited, and then led him back to bed. Until he got up again in an hour or two and did it all over again. The times we were all just too exhausted to get up, he would literally just wander the house, trying to find the bathroom or his bedroom, and eventually he would start crying out that he was lost and needed help. It was truly a nightmare for us all.

The only thing I could think to do was try to appeal to him to be aware of how bad this was, "We need to figure out a solution because you CANNOT just go around waking us up all night, especially the kids! They are miserable! Sick! Suffering! Suffering in school! And I am getting sick too! So what can we do to help you such that you can let us sleep at night??" I knew it wasn't his "fault", and that if he could have helped it he would, but I had to at least make him aware that he had to try the level best that he could not to wake us up, that it was a real problem. I ended up putting up a gate across the hall to the kids' rooms so he couldn't get in there anymore, that helped a bit but when he would start wailing for help, that still woke them up. We tried laying Christmas light strings across the floor like runway lights, to make a path from his room to the bathroom, but he couldn't follow them. The week before he died, hospice gave us a toilet to keep by the bed, but half the time he didn't know what it was or how to use it, so that wasn't very helpful. I ended up telling him that if we couldn't figure something out, the school was going to notice the change in our kids and get Child Services involved and possibly take them away (which I didn't know if that would actually happen) and I told him that if he couldn't stop at least waking the kids up, that he would have to end up going to a dementia care home. All that was at least a threat enough to get him to try the best that he could to let them sleep, if not me. I know he couldn't help not finding his way around, but I needed him to at least try to wander quietly to the extent he could.

Unfortunately none of it was the magic solution to fix the problem entirely. I thought about antidepressants for myself, but I made the choice not to take them. I decided - and this was my personal choice, others' may be different - that if keeping him at home meant I had to resort to medications like that, then maybe it was time, for the sake of my kids and myself, for him not to be at home anymore. I was seriously beginning to consider it. I thought of our responsibilities as parents - he is their parent too - and thought about how we can never give this time back to our kids, and they would be here long after he is gone, and this will forever be the essence of what their childhood was - there are no do-overs, and I thought "Will I be glad I kept him at home this long? Will I look back and think I made the right decision, to let him stay at home as long as possible, as he wants - or will I look at my kids with regret for their suffering and wish I had just made the hard decision as a parent to do what was best for them and force him to go to a home for the kids' sake, for their health and sanity? Because as parents, it's our job to look out for our kids' best interests...if we don't, who will? Will my kids look back someday with resentment at me for letting the situation at home drag on as long as I did?" As I was mulling that over, the bottom dropped out - as I put it - with his illness and a couple days later he wouldn't wake up, and now he is gone, so I never had to make that decision in the end, but I'm pretty sure where it was leading.

This is longer than I had intended, but the short version is I think you have to take a step back and look at the whole situation, as an outsider might, or as you might look back on it in the future, and think about what you might change or what you might have done differently, for everyone's sakes...some soul-searching helps to guide you to know what the best thing to do is.
I wish you good luck, and peace, and much needed sleep...

By lurkingforacure On 2019.09.17 16:25
Thanks so much for your inputs, and Busymom, what a nightmare for you all, and kudos to you in your creativity trying to resolve it.

I so needed to read what you all wrote. I have been wondering all of those things myself, and am afraid that our youngest, who bears the brunt of his dad being home, will resent me for keeping my husband at home this long. In all honesty, I think he already does, because he sees the situation as one where I am sacrificing his health and well-being for that of his dad. Not only that, I am sacrificing my own health for that of my husband. Not a sustainable situation.

I have been thinking recently, usually at 3am when I am woken up again, the same thing: that if I have to resort to medication to be able to cope with my husband living at home, then it is probably time to move him to a facility.

Our neuro actually brought up longterm care at our appt today, but unfortunately we do not have coverage for that, and can't afford for my husband to move into a facility. So he gave us a prescription for Seroquel, which doesn't affect balance like some of the other sleep drugs can, and since my husband falls daily, felt it the better choice. I'm anxious to try it and see if it can help us.

I'm also going to use respite care more frequently and for longer durations. I'm hoping that more respite care, combined with hopefully better sleep when my husband is home, will allow us to live together more peacefully and longer. I'll keep everyone posted. Thank you so much for your input:)

By jcoff012 On 2019.09.17 22:11
I read your posts and am so saddened by them. What horrible ways to live, and all because of Parkinsonís.

We have also been dealing with sleep issues this last year. Carl now sleeps downstairs, in the family room. He was screaming out, thrashing, punched me a few times, and stayed awake most nights. Now, he still only sleeps 2-3 hours a night, but heís downstairs.

My big problem is that he has been coming upstairs each morning between 3-4 and it wakes me up. He may fall back asleep/he may not. In any case, *we* need to get up every day by 6:30, or the day is wasted! Makes for very tiring, long days as I am lucky if I fall asleep by 11 or 12 each night! He gets up at 2, 3, 4...I can hear him moving around downstairs. Then, up the stairs!

I guess sleeplessness is part of PD...it is hard on him, hard on me, but unavoidable...Sad.

By Lynnie2 On 2019.09.19 19:33
You can't keep going the way you are, getting up or being woke up 3 or 4 times a night.
I've been through it all and know what it does to a person.
Call your neurologist to get something for your husband to make him sleep.

You say it's unavoidable but is can get better if you get something like I said in my first reply.

Tell the doctor that you are in a crisis. Caregivers health is important too.

By Pennypen On 2019.10.10 14:20
Absolutely get something for his sleep. I give my husband quetiapine 75 mg and ambien 5 mg every night. Sometimes, if he is achy, I give him Tylenol 500 mg too. There is no way I could survive and take care of him if he didn't sleep - because I need to sleep, too. You may not be used to using meds for sleep, but trust me, you just have to do what works. Good luck.

By Pennypen On 2019.10.10 14:23
I just want to add that the quietapine is for the delusions, hallucinations, and psychosis frequently experienced by PD patients. It really cuts down on that so the person can rest. The ambien is for sleep.


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