Sleep deprivation!

Morning everyone. Just wondering how other loved ones with PSP sleep during the night... I care for my mum and the sleep issue is the one I really struggle with. Mum has been up 6/7 times during the night on and off for the last few days/weeks. We realised she had a UTI last week so she had a course of penicillin which seemed to help but now she's back to sleepless nights. She's up at least 3 times a night on a good night! And I have to resist her asking for her oramorph or lorazepam medication unnecessarily as she knows they are sedatives as a side effect. She asks for them so she doesn't wake me rather than for herself so much. Mum goes to bed at around 8:30pm so even with constant waking generally gets a decent amount of sleep, I'm the zombie! Lol. Wondering if any other people with PSP could give me their side of what's going on? Sometimes mum wakes because of pain or pillows/duvets moving etc also. Continence is also sadly becoming more of an issue for mum so these night time wake ups need to be responded to quickly. Any advice guys? Thanks! :)

36 Replies

  • That's interesting, my sister is in a nursing home with PSP fully dependant can't communicate doubly incontinent she goes to bed around 7.7.30 as fr as I know,but sometimes when I call the home she is still in bed at 10.30! I haven't asked questions about how she sleeps but speaking to the PSP help line they say that people with PSP don't sleep well at night! I am going to ask the staff that are on at night what kind of sleep pattern she has. I hope you get some help soon take care it is a terrible disease.

  • I'll be reading with interest the replies. Says she with match sticks in her eyes. S gets up at least three to four times a night, that's on good nights! I can cope if he just gets up, uses his bottle, then lays straight back down and turns the light off. But no, he seems to get up and wander, changes his pad, used or not, take his morning pills, or not! Sits there thinking for half an hour, or staggers around, trying to fall!!! I am a poor sleeper anyway, takes me ages to drop off, by the time I am back to sleep, it time for him to start all over again!

    So I am at the end of my tether as well! HELP,!!!

    Lots of love


  • We have had the same problem as you re the bottle using then emptying it and turning lights on etc means I cant get back to sleep for a while. We had a continence nurse who supplied us with a 'funnel' which leads into a bag so its only emptied in the morning as the urine collects via a tube and runs into the bags which only need replacing once a week. I don't know the name of the system but its so easy, non invasive to the patient and means I just turn over and get some sleep as I am not awake as long. It changed my life so may be worth asking for this. If you need any more details I'll find out for you. Hope it helps

  • They do a female version as well - (know your query is for your mum) x

  • Thanks heady and nannygoon for your replies. I think it's pretty common for people with PSP to wake a lot during the night, and thankfully mum usually goes straight back to sleep again once she's been to the toilet/had a drink/stopped coughing/had her pillows re adjusted. But like you heady I'm a poor sleeper at the best of times so can't get back to sleep. Thankfully mum doesn't loiter around too long when up, that must be so frustrating for you! I don't turn the light on or anything as the more stimulus you have the less likely you are to sleep again. I've only been caring for mum full time for 6 months and I'm knackered!!! How some of you care for such long periods of time is amazing, truly doth my hat to you. Even with tena pants mum is up and sometimes still wets the bed but I think I need to go back to the continence advisor about that. We tried the Tropsium chloride tablets to stop night urgency but to mixed effect and the one amitryptyline doesn't seem to do much and I'm loathe to sedate someone who's already prone to falls, particularly as I'm in the room next door constantly listening for noises .. She sometimes has bad choking fits too which can be very distressing, but the lorazepam helps calm and aids sleep too. I've realised for my sanity that I need to get additional night care and thankfully mum has a personal health budget that should cover a few nights. This is not quality time together anyway and I thinking getting a better sleep will make me a better carer. Do you have much help at home Heady?

  • Hi Kelly, no I don't have any help at the moment, bar S goes to the local Hospice once a week. I have just had an assessment from Crossroads, they have referred me to loads of people, including a full carers assessment from Social services. If he carries on, like he has the last few nights, don't think it will be long before I have to move into another room and then I will have to get a night sitter. Something I am dreading!!!

    Lots of love


  • Oh Heady, I appreciate that must be very difficult if its your partner to sleep separate. Perhaps you could just have. Couple of nights separate? Just so you get a few good nights sleep. Mum had a bad fall in August and fractured two vertebrae, she was living alone at the time and this made me decide to move back from Australia to look after her. But they wouldn't realise her from hospital without a care package so that's when she got assigned a personal health budget. We've not really used of yet but to be honest I'm exhausted, I tried to open the car door with a house key earlier and I keep forgetting things! So I think next week I'm going to try a night carer and see how that goes. I see it as not losing any quality time with my mum and the better sleep will help me be more patient and understanding in the day. I Hope you are able to work something out that works for you and S.


  • My husband is up most of the night too. He even takes Ambien CR which will let him sleep at first for about an hour or two, but then he's up and in his recliner. He doesn't wander, which is good, but he just doesn't sleep. It shows the next day in his walking, and mental abilities. He says he wants to sleep but can't.

  • hi LynnO, wow he must be exhausted. Does he nap through the day or nod off occasionally at night? Was he previously a good sleeper? Well hopefully you are at least managing to get some sleep. Does your husband just watch tv at night then?

  • HI Kelly,

    He is exhausted most of the time. I still work, but he says he doesn't nap during the day, although I'm not sure he doesn't doze every now and then. He does keep up with me on the computer writing notes during the day, so if he does doze it's not for long.

    When he does get up, he will watch tv. I tell him not to, that it probably keep him up, says it doesn't matter.

  • Hi LynnO, does he take any other sort of sleep aids like amitryptyline? Have you been to the GP about his current one not working? Mum has amitryptyline and occasionally Her lorazepam if has choking fit or oramorph if pain bad, both of which help Her sleep but still wakes up for bathroom etc.

    does your husband stay at home unsupervised? Mums a bit too unstable on her feet now and broke two vertebrae in August during a fall so i don't like to leave her alone

  • Hi Kelly 55,

    We haven't checked with any other sleep aid just yet. It's very hard to get my husband to take any pills, but we're at the point where we need to try something else. I'll bring that up next trip to the drs. So far he's ok staying home. We've talked about that a lot, and I need to work for my insurance. So I need to stay as long as possible. When I think he's reached the point where He can't be alone, I'll be home. I hope your mom's back has healed up and doesn't give her any pain.

  • Hey LynnO, yeah it does sound like something needs to be done to help him sleep. cant hurt to ask, perhaps a liquid version or patch might be available!?

    That's totally understandable about work. I had to give up my job in Australia and move back to care for mum but now I have to go back to work as my savings have gone and I get no financial support. So now it's the difficulty of working yet trying to keep mum supervised and safe. Some sufferers tend to fall more than others though and mum can't use her right arm and her eyesight has deteriorated so she's probabky at higher risk. Going to get her one of those age UK neck alarm things though as now I will have to leave her alone for short periods of time! You must be tired working and caring, hope you're managing okay!

  • At the moment I am looking daggers drawn at Brian he woke me a few times during the night and has been back to bed for a sleep and now is haveing an afternoon nap in his chair.. bah humbug Janexx

  • Jane, if Brian is asleep, so should you be!!! I know it's not easy, but I would have collapsed years ago, if I didn't take a quick nap myself!

    Lots of love


  • Hi all ,

    My husband,Roy only wakes in the night because he needs to go to the loo,well actually he uses a bottle which he can't use without my help, so that means I have to be up however many times he needs to use it! It used to be about 4x per night,then after an appointment with the GP the tablets he was taking ,to help with his water works ,were changed to alfuzosin hydrochloride....with the combination of those plus not drinking after 8pm ,if he can help it, it seems to be doing the trick for now as he only seems to need to get up 2x per night at present...I was saying that I am constantly tired but it isn't quite so bad now,although it does feel like a battle to get him up out of bed in the night! I think I have gotten used to the interrupted sleep.

    He does doze a lot during the day and that is the time I can get things done around the time for dozing for me!

    Roy has been wet a few nights and he has had a continence nurse here to show me how to use 'Conveens'. He hasn't used one yet but they are on hand just I case.


  • Jzygirl that did make me laugh! I have caught myself being a bit of a cow and accidentally on purpose waking her if she takes a nap in he recliner. This in the hope she might sleep better that night and also I can't sleep during the day (I struggle at night as it is!) so want us both to sleep at night. Just went to doctors and mum has another UTI so another week of antibiotics bless her.

    I might have to look into that tablet DenB - the one mum was on seemed to work for a couple of weeks then stopped! At least one small mercy with a man with psp is that peeing in the night *can* be slightly easier if you use those toilet aids. I saw a good site in the US for those, i showed the continence nirse the one for ladies and she said its best she's seen but mum can't use her right arm anymore and I think the logistics and coordination of trying to use it in bed might cause more harm than good! Lol

  • Waking them doesn't make them sleep better but it does make us feel better for about 30 seconds. When Brian has his hour in bed I pop to the shops for anything that we need but mainly to have fresh air and human contact. Janexx


    This is the site in case anyone interested :)

  • I hate the thought of going to bed at night George is up about 4 to 6 times a night to wee in his bottle, he has to have the light on after he has put his slippers on, I don't know why he needs his slippers on, then he will lay down and go back to sleep and leave the light on, I then get up and turn the light off, he goes back to sleep and I just lye there thinking about all that is going on and waiting for the morning to come. Keep thinking about our life before this psp think about the good and the bad times and what we had planned feeling so sad. Grandchildren come around and he just sits there they dance and sing for him, sometimes he takes notice but sometimes he seems like he does not care, which is hard. When the children come its an effort to talk to them, I find this really hard. Back to the sleep I find it really hard to get him up, I also pop out while he is in bed so I can do some shopping and some fresh air. Always rushing around always something to do, so much washing and ironing. Oh well cheer up and live one day at a time that is all we can do, sorry to go on and on love to you all. Yvonne

  • Hi Yvonne, that must be so difficult for you and George. There are do many unfair quirks to this condition. I find mum is generally unaware/unappreciative of my efforts and can have a sharp tongue at times (although I must admit her sarcastic comments are quite often really funny!) and we don't have young family members, that must be difficult. Mum does get disinterested with a lot of things, we called a dr out a few weeks ago as mum was having breathing problems and as the dr was trying to ascertain if mum needed to go to hospital, mum was craning her head round the doctors to carry on watching TV! I have to help mum get out of bed and sit on the commode so I am at least in charge of the lights thankfully. Would a small lamp or night light help alleviate that issue? Mum was up 5 times last night, one of which she called me after she'd already fallen off the bed. I've managed to cajole a family member to stay with mum tonight so I can go out and maybe have a drink or watch a movie and sleep! I can't wait! And I know I'll be more resilient and cheerful tomorrow as a result. I guess we do have to take it one day at a time and enjoy the small things. Mum still has a healthy appetite thankfully and so sure she will love her smoked haddock for lunch! :) take care x

  • Hi Yvonne and Kelly, I can relate to both of your last posts. S too has to pee with his slippers on! I would also like to know where I can buy blinkers, so S will concentrate on the issue at hand. I dread going to the doctors, when I see there is view from the window, even if it's just drain pipes coming down the wall. For an individual disease, all our loved ones show a remarkable similarity for the little things, that the books don't tell you about and others would not belive, or if they do, its just a man thing! So why are both sexes sufferering!!!

    Really tired again this morning, after a night on constant waking, S wanted to get up really early. Soon put pay to that!!! I'm not person to cross before a certain time!

    Bring on the match sticks!

    Lots of love


  • Oh Heady! I'm the same, mornings have never been my thing. My night owl persona still won't change no matter how tired I am. Can I borrow some of your matchsticks please! Guess I should get on and get mum showered and dressed and at some point this afternoon realise I haven't brushed my own teeth or hair! Haha.

    It is very interesting to read all the traits of our loved ones on here with psp, definitely learn more than you do from the standard literature!!

    Right I'm going to go and hug my mum, drink a strong coffee and power through! Thank you all for your thoughtful replies!

    Kelly :)


  • Wow, Shasha, where did you find him? I'm afraid I dont talk, or I only shout because he won't co-operate. Don't think S could cope if I started being nice at night, might encourage him to wake up more, because of sheer novelty and to check he hadn't gone completely crazy!!!

    I wish someone could explain why there is a need to go to the toilet so often at night. I understand the weak muscles, but WHY is the night time so bad????????

    Lots of love


  • Heady it is called night void. Most people get it because the legs and heart are all on the same level so the heart is more efficient when they are laying down and that incourages the waste to filter out quicker and it is even quicker if the legs are raised. Thats why if older people have swollen legs its best to have the feet raised to drain excess fluid down side is the bladder fills quicker. The only answer is to make them sleep in the chair. Hope that help answer the question. Janexx

  • To think of all the years,in our previous life, I use to have a go at him sleeping in the chair, going off and leaving him there, only to hear him coming to bed at 3am! That was what I was meant to be doing!!! Now, much to his dislike, he has to come to bed, when I want to go. Or the other way around! All the unnecessary words, exchanged or thought, for something I would love to happen now!

    When does this evil disease stop kicking us in the teeth? Every day something comes up, or said on here, that reminds you how much life has been wasted on trivia!!!!!!!!!!!!!!

    Lots of love




  • I'm sure you know how lucky you are, make sure you tell him! I know it's very difficult with PSP to express any feelings, at least it is for S, but find a way!!!!

    Lots of love


  • Wow.. It's absolutely lovely!!!

  • Kelly55, your posting and the replies so far make me realise how fortunate my wife, Roisin, and I were in the matter of night time disturbance. Until the last 6 months I could be sure to have a decent sleep 5 nights out of 7 - usually six hours with maybe a break if I heard her cough beside me. Roisin wore night-time "couches" or nappies (she also wore day-time ones but they were lighter and were changed more frequently) and I think the nourishment pumped via her PEG had a positive effect as well in helping her to sleep. Before the PEG Roisin would occasionally wake up and make it clear she wanted to go to the loo; afterwards I would change her, lightly bathe her face and arms and she would return to sleep. But in the last 6 months of her life it was breathing difficulties rather than toilet needs that kept her and me waking up 3 or 4 times most nights.

    My feeling then and now is that sleep is the one "commodity" that a carer just cannot do without. With enough sleep one can do anything; with insufficient sleep one ceases to function properly, and even risks becoming ill. So my advice is, try at all costs to get someone you trust in at least one night a week and of course preferably more. It sounds obvious but in practice I was too tired to take my own advice. You may have a long road ahead and you may not be able to control the number of times your mum wakes up, so get some relief for yourself.


  • Wow shasha that is lovely! What a patient husband. I'm much the same as yourself heady! I tend to grumble and am far from a ray of sunshine. Particularly if mum hasn't used her bell and just tried to get up herself and had a fall. I asked my sister to stay last night but my mum told me that she moaned all morning about mum waking her up in the night and wouldn't be doing that again!!!! As if its mums fault!! Needless to say I'm rather cross at her and shan't be asking her to help again.

    Thank you for sharing that Christopher, I'm glad Roisin was usually able to sleep quite well and had you there with her. My mum sometimes wakes feeling short of breath and panicky and sometimes is choking on her saliva. Do you know what caused roisins breathing issues? Anything I can do to minimise these problems!?

    I'm going to hire a PA hopefully next week to do a few nights a week, I agree that sleep is too important to everyone's sanity and it would make my relationship as daughter and carer less strained. I know it's hard heady but perhaps you should see if you can have someone for one night a week? Some places only charge £65 a night which is pretty reasonable considering, especially if you have a personal health budget.

    Lets hope we all sleep a bit better tonight :)

  • Hey Kelly! I hope the sleeping is getting better! We have recently started melatonin 5mg and also STOPPED taking amantadine.... but on the flip side he's on Modfinil(Provigil) so he acts out his dreams. He cant walk so we don't allow him to get out of bed. WE use a bed alarm and he sleeps in our living room right outside our bedroom. HEs still up 3/4 times a night. On a GREAT night he sleeps all night but then is very wet in the mornings. ... not sure what is worse.

  • Hey again! Sadly the sleeping isn't any better other than having someone in 3/4 nights a week from 10pm to 7am to allow me some sleep. Mum was never given amantadine, the side effects are quite bad apparently but she takes 6 benoldopa tablets a day. She also has amitryptiline has a mood/sleep enhancer at bedtime but I don't think it does much. I'm not sure melatonin is available as a med in the UK !? Wouldn't mind some for mum as well as me! Haha. Mum can still walk and so spends each day frequently up and down from her chair wandering aimlessly, as she's restless I guess, but I have to shadow her everywhere in case of falls. Mum has to be assisted to the commode several times a night but I now have to catheterise her before bedtime which now means between midnight and 8am she usually only wakes up twice. She wears tena pants but won't use them ver often, which I can't really blame her for. Does terry have night time pants for continence issues? They do help. Or also convenes or bedpan things? Would he be able to use one of those unaided?


  • He wears depends 24/7. he constantly has continent problems. At night we help him use the urinal but the last few weeks he doesn't even wake up to go, just wets himself/bed even when we ask if he has to go.

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