Had a real screaming match with Larry last night. Around 6 he went up to his bedroom. At 6:20 he wanted to come down again. At 7 when I was ready to go up he didn’t want to go. Said fine stay here and left. Got settled in bed. He called me. Asked him what he wanted. He needed me. Went down. He wanted to move from his lift chair to the sofa. Why, my question. He said he felt trapped. Told him I did as well. Put him on the sofa and went back upstairs. Back in bed then crash as he tried to get up. Down again to find him on his back on the coffee table. Told him he was going upstairs and going to bed. He could come down at 1 am. At 11:30 he woke me. Went in got him up took him down and went back to bed. With diazepam slept well enough until 3:30 at which point I had to pee again. Got up to do that. Back to bed. He was coughing and hacking. Gave up at 3:40 and went down. Needless to say he will sleep most of the day.
If I hadn’t read similar stories on this site I might have felt very bad about the whole incident. Reading similar stories made me realize this is part of how this disease goes. Care giver lose it eventually.
Hi Jeff. That sounds like my night, I think PSP makes them selfish in that they only think of what they want, and forget about ours.
I was in bed at 7 as well back up as Colin wanted a drink at 9.30, 11.15, 2.35, then 4.45 didn’t bother to go back to bed after that, hence in bed now waiting first call.
Let him know it is not all about him. Last night he went downstairs for the night at 10. I got to sleep at 8. He woke me to go down. Got back in bed and managed to sleep until 3. Got 7 hours which is the minimum I can get away with to function.
I feel for you! Lack of sleep will not help your temperament at all. I had lots of nights when dad would wake me multiple times, then he'd nap all day. It's a really difficult decision to bring in night help then have nothing happen.
Just remember that he is not doing this to be mean or spiteful, it's the disease which is no one's fault.
He always was a night person. The annoying part is he will sleep all day then lament his inability to sleep at night. He has no problem at all napping throughout the day and evening.
Oh Jeff,so very difficult and no "for sure" solutions... 😫. Frustration and exhaustion are the worst.
My hubby was having an up-down-up time the night he had his massive stroke; in fact, heartbreakingly, one of the very last things I said to him was a nag about not staying in bed...😔
I have had problems sleeping through the night in the past. I do understand it. I suspect once parked in from of the TV he goes to sleep. He tells me he doesn’t but he also denies sleeping most of the day as well. The disease has made his self awareness clueless.
I'm so sorry Jeff166. The goings on in the brain of PSP is not ours to know...at least not until more research is done. Looking back when my son Jeff was alive, I think I would FORGET and EXPECT logical answers and logical behavior. That's what happened to me.
I have a feeling that your "losing it" with Larry was instantly forgotten by him. As a caregiver there was much for me to to feel guilty about, however I don't think my impatience, losing it, was noted by my son (except in that instant). Maybe before the PSP had progressed, but as it increased I think the brain had already destroyed that part.
I remember when Jeff, my son, was still fairly new into the disease. We had gone for a medical appointment for him (he could walk, he could talk logically, etc) and when we came out to my car another car had scraped the entire side of my car (2010 Prius) and not left a note. I was UPSET, but Jeff said nothing (which was not his compassionate nature), I then realized that my son was slowly changing, his brain. Later came the compulsiveness of the watch, of time, calling me from the other room and not remembering why, etc, etc.
I remember how HORRIBLE this disease was, and how I did not know if I was going to end up with a nervous breakdown. I felt at my wits end.
In this country, USA, we don't have universal health care. Money helps to hire help, but when you don't have it, then I think your only "out" (so you can stay helping Larry) is to "lose it". It keeps us sane and allows us to "stay".
For what it's worth I hold you in high esteem for being there against all odds and great hurdles/challenges.
I had as restful a sleep as I could last night after he went downstairs at 10 after being in bed for two hours. I slept 7 hours. Was up at 3 with his cries of help. Going down he had to pee. He claims he is awake all night. I doubt it.
Jeff I absolutely feel your pain. This lack of sleep will make you ill. I presume you have tried all the usual tricks - trying to keep him awake in the day, night sedation etc - not that any of that works in our house!!’
Is there anyway you can get some help in. I am having 5 ‘ nights off “ next week and the mere thought has kept me calmer ( apart from little rant earlier!) for the last couple of weeks.
We feel guilty for nagging and guilty for letting them do it there way arrrgghhh.
I really hope the pattern will break soon in the interim take all the help you can get
I haven’t tried night sedation. After he sleeps most of the day I am sure he isn’t very tired. Who would be. At least I have this place to rant. It’s a big help.
Poor you it is so hard but be kind to yourself you are doing a great job. But do try to get some help as we all need to sleep. Thinking of you and sending hugs
I am letting him know this isn’t sustainable on my part. He apologizes and asks me not to be mad at him. I’m not mad at him. I am annoyed when he sleeps all day. If he didn’t have this disease he would stay up most nights until 2 or 3 then sleep 4 or 5 hours and get up. Then nap a few times during the day. This is the way he would like to live his life. I can’t do it. I have let him know that.
Hi Jeff, please, please remember it's not against the law to shout at your partner! In my house it use to be obligatory to do so!!! PSP effects both you and Larry. Neither of you are responsible for your actions at times.
Are you getting enough help,or you struggling with this alone? You sound very tired and in desparate need of some time out. This is not you failing, but recognising that if you want to look after Larry properly, you HAVE to accept help in the caring of him.
I don’t have anyone to help yet. For the most part they would sit here and do nothing. I’ll see how things go. I will talk to his GP to see about a possible sleep aid for him.
Where abouts are you Jeff? If in UK get your GP to refer you to the local Hospice. They are there to help those with life limiting illnesses to live. Get in touch with Social Services about finding some care, ask if Larry is entitled to CHC yet. It's never to early to start the ball rolling, but if you crash, due to exhaustion. Larry WILL suffer big time. Please don't let this happen to you.
I’m in the USA where we are free of a decent healthcare system. Having someone in at night to watch him would get expensive fast. I also have no idea who or what would show up. These are minimum wage paying jobs. The placement agency would take most of the money.
So sorry Jeff, for some reason I thought you were in the UK. That really sucks that there is no help. Can you find a good friend to at least sit with him for the odd hour, so you can catch up on some much needed sleep.
I do take advantage of his afternoon ly downs to at least go prone for an hour or so. I am not readily able to fall asleep in the day. He was trying not to sleep today with not much luck.
I’m in the US as well. North Carolina. I hired help out of my pocket for just an hour or two to help me get groceries etc. you know we don’t get anything like the UK does. When Hospice came in they helped a little. But I know how it is.
I miss Charles so much and also feel guilty but PSP changes your character
Ask your doctor for Trazadone. It helped Charles so much. I wish we’d had it sooner. Good nights sleep always.
Yes, Trazedone may be helpful. I’m in the US too~ in Ca. My husband has PSP and he “slid”? off his bed not too long ago injured his leg and ended up in nursing home for a few weeks. I encouraged him to remain there as I feel it’s all too much for me at this point. But, oh no, he is at home again.I really think this dreadful disease is taking me down too. I try to be very nice and other times I lose it.....
Did you know that if a person is in a hosp on “observation” status rather than a real admission then if they are to go to a nsg home then Medicare etc won’t pay?! Just a pearl of knowledge I recently learned.
Also he was just referred to palliative care but not accepted because they don’t cover PSP! ( or Parkinson’s). So much for that!
Anyway, I think you are doing a great job!!!! And with all the sleep interruptions.....
Sending you tons of positive support and hugs.....
Hi Anne, a reminder that in the USA whatever "help" we get outside of family and close friends are paid for out of our own pockets. We do not have the perks that the UK and Canada and perhaps other civilized countries offer.
Long Term Care Insurance is the way to insure funds when a devastating disease like PSP strikes, but many of us in the USA (the majority) do not have. I took it out in the year 2003 (following my mom's debilitating illness which led to her death and decimated my parent's savings) and have paid $183 monthly, to this day. I have never had to use it, thank goodness, but keep paying because I figure the older I get the odds of accessing it go up.
My son did not have Long Term Care insurance (LTC). It all came from his savings or mine.
My husband has LTC insurance too and I have just filed our first claim for him. Not everyone can get it though~ a person needs to be in good health when applying. I’m happy for you that you do have it..
Hi. No one else would believe it would they? We live in a very peculiar world that others just do not understand. I have a friend who has a husband with PSP and the first thing we say or text each other is 'Did you have a good night?' or 'Had a good/awful night'. Trouble was this morning my daughter text and asked among other things 'Did you have a goodnight?' I replied and finished with 'Good night. Love Mum'. She text back 'Oh Mum I am so sorry it must have been awful if you are saying good night already to me at this time in the morning'. !!!!! Have you read the book 'The Selfish Pigs guide to Caring'. The author really undertsnads and it just made me giggle. Did me the world of good.Hope that you have a vetter night tomorrow. Love AliBee
The only people who understand are those who have gone through it. My neighbor’s wife died of melanoma 3 years ago. He knows. He was her care giver. Then I have everyone here.
It all sounds so familiar Jeff. I look back now and think ` why couldn`t I cope without losing my temper sometimes`. Well, it is because I`m only human - and so are you. so go easy on yourself and accept that you are suffering too but in a different way.
That’s my take away from this website. I lose it because I’m human and under this daily low grade stress takes its toll. If I out live him I will be devastated. I have speculated on who’s outliving who.
oh so familiar! You're right, it's a common scenario. It's so hard to keep calm when all you need is sleep! I hope you can get some rest while he is napping. I sometimes found myself literally sleeping for seconds at a time while I was walking at work. Lack of sleep is a killer. Easier said than done, but do try to take care of yourself. It's like on the airplane - put your mask on first before trying to help your kid. If you are out, he's a goner.
It’s not just him it’s also all the other things that need to be done that don’t get done because of lack of energy. I do get lots done. There’s still lots that need to be done. The list is always the most pressing fire to put out.
I am now down for my nap. I wish I could sleep during the day. That’s eluded me most of my life. The best I get is to drift along the edge for 20 minutes if I am lucky.
Hi Jeff I do sympathise with you. Not getting sleep makes our caring role so much more difficult. I have to help W get to the bathroom several times during the night, but to add to that he wakes me up asking what time it is or he attempts to get out of bed but doesn't know why and can't get back in! The last two does my head in and next morning the least wee thing really annoys me and I'm afraid I just lose it with him. On a positive note (I hope) he starts new meds tomorrow to help with his over active bladder. (Fingers crossed)
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
A real shitty day, literally.
My husband is coming out of hospital today and I am scared I will not cope.
