PSP Association
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Veronica's sleep patterns seem to be getting worse. Last night she was up 7 times between 12 am and 2.45 am . Although I was up for them all last night some nights she is out of bed without my being aware of it .She is especially confused in the night and although she can tell me the time can't relate it to reality i.e. not time to get up ! I went to the doctor to see if she would prescribe a sleeping pill but she said they would be of no use . So Now the OT and community matron are arranging to have a sensor monitor put in to record what her patterns are in the night . They suggested an awake night sitter for a couple of nights to start with but then I pointed out that those could be the very nights there is little movement so this system is going to be in for two weeks . Veronica has also taken to calling for me by name in her sleep which is a ****** as I race downstairs only to find her asleep .! Does any one else have similar night patterns and has anyone had sleeping pills prescribed ? I hear her bed side light go on over the baby alarm and I have to admit that I am now not rushing down every time she gets out of bed although I know she is in danger of falling . On the other hand she often gets out of bed and falls before I can get to her - that happens in the day time too . So what on earth does one do ?

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I am slowly coming to the realization that I just cannot do it all and cannot save him from everything without sacrificing myself. And my sanity. Sad but true. At least until I get through this last year of work, I have to have some sleep. So I close my door and only get up if he calls me or I hear a crash. So far he has been fine on his own. I realize that will change as I am seeing him going downhill a bit more every week now. I'm just praying now. He is also getting a bit meaner.


I don't know Georgepa, Bruce does the same thing. I ask him, "what time is it...." but like Veronica, he may tell me it's this or that time it's time for church! etc. and of course its 3 am on a Tuesday.

B was given Zolpidem 6.26mg for sleep. doesn't work all that we are back to 75mgs. diphenhydramine, an OTC sleep aid......The days he does the gym he seems to sleep better...but soemtimes the sleeptalk/walking can be VERY tiring.....And B gets out of bed and falls at least 3x a week.

Sorry no help.

I am interested in the monitoring thing though frankly, I would shoot for an over-night




Hi Georgepa, did you get the CHC? I know you had initial assessments but can't remember how far it got. As my last post showed, Colin does the same but can't walk now but does fling his legs over the bed rail. Before CHC he was given sleeping pills of various types but they only kept him asleep for about an hour and a half and then when he got out of bed he was so groggy, he always fell. I said before, I kept a note of every time he got up and the reason and once CHC was granted I was given a night carer for 5 nights a week. This has now been increased to 6 nights. On my night I have a Motorola baby monitor by my bed so I can see what he is doing. I can also talk to him through it. Sometimes when his legs go over the rail I can tell him to get back into bed and he does it, sometimes not as at the weekend when I had to keep running downstairs.

If the CHC hasn't been granted yet, get onto SS, if it has accept the night staff or if you can pay for it, do so. Even if V sleeps through, you will have a better night's sleep knowing you don't have to worry about her. I had over two years walking round like a zombie through lack of sleep with wasted days as I tried to catch up during the day. We have had night staff for two years now and I know they have saved me from total exhaustion.........still exhausted but not totally burnt out.



I have been having carers in two nights a week for sleep in caring - they will get up 4 times in a night before it counts as an awake night which is charged a t a different rate and I have now increased it to three nights . We are only halfway through the chc funding bit - two stages to go and hopefully the monitor will add to our case . The trouble is with V a lot of it is psychological as when the carers are in she more often than not gets through the night without their help although one poor carer on her first night got blitzed with a fall and I was so tired she couldn't wake me ! The biggest benefit when they are in is that at least I know I can just roll over and go back to sleep at least 3 nights a week . Hopefully if we get the CHC I can get more night help . I take the point about sleeping pills - perhaps not such a good idea - perhaps I should have some !!

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I haven't tried it yet, as things are more or less stable now, but one young (and very impressive) geriatrician we saw proposed amyltriptaline as an antidepressant that also helps with encouraging a full night's sleep. I offer that for what it may be worth as something to discuss with your wife's doctor.


My wife's sleep has slowly been getting worse each passing month. She was diagnosed with REM Sleep Behavior Disorder (something quite common with people with Parkinsonism, such as PSP). She jerks and kicks and actually screams out, even though when awake she can only whisper. Not only does she do this at nighttime, but also when she falls asleep in her recliner during the day. Her neurologist recommends her taking either Melatonin (which is supplement found over the counter) or Clonazepam (which is behind the counter). Start with just a half of a pill, otherwise they have too much daytime sleepiness. But over time, you'll need to adjust the amount to a full tablet. We went to our cabin last weekend and I forgot this medication. She kept me up all night! Won't do that again.

As for the falls from the bed, highly recommend either using sturdy bed rails or even better, get a hospital bed that has the bed rails built in. The hospital bed also makes it a lot easier on the caregiver.


Hi George Margaret has a pattern of 3 loo visits on a good night and anything up to 8 on a bad night. I now know the bad nights usually mean constipation kicking in so it is senocot tablet and preparation for messy toilet and clothes the next day. The District Nurse thinks that the toilet visits are something to do with her water tablet for high blood pressure but I tried stopping them no change at night but BP went up so that did not work. I doze can't call it sleep next to her hospital bed so am woken by the air mattress or bed pump when she tries to get up. We tried a sensor mat to wake me if she got out of bed it worked if in right place, I have returned that as she no longer independently mobile and cot sides effective.

Ask your GP/DN to contact Marie Curie Care, they provide a night sitting service I have on average 3 nights a week if DN remember to book. Yes they do have the quiet nights but I sleep in box room and get good 8 hrs as I know if I hear anything it is covered and I do not need to get up. They also are now getting some of the wild nights so the CHC review was a formality as their comments were taken into account ( mine were'nt).

I have tried oramorph and Lozarapam both in dose recommended by GP ineffective as M is already agitated and fights them so after taking to pharmacist and GP I now double dose and occaisionally a bit more. Only snag both short acting and last for 2-3 hrs so no long sleep, but tend to calm M.

Best wishes to you and V Tim


Hi George, is V in a hospital bed? Sounds like a good idea! Thankfully, S is going through a sleep all night phase, touch wood! But that's after 4/5 years, up every 30minutes. With me having to get him up, for the past two!!! I now take sleeping pills, just the nights, when I know I have to sleep. They are only mild, but do the trick. I can wake up, if I need to and can function reasonable well, probably better, actually, because I have been asleep and not just dozing, waiting for the dreaded call!

Don't beat yourself up, about not jumping to V's every call. I'm positive I am speaking on behalf of everyone on this site. We all do it!!!!!!! We wouldn't be able to survive some days, if that wasn't the case!

I would definitely get one of these baby alarms, that you can actually see V! So you can check if you need to attend!

Tonight, or whenever you have to get up and run, remember we are all with you. Sending you our love and lots of hugs.

Lots of love



The neurologist has prescribed Tylenol #3 w/codeine for my husband to take for throat pain. He usually takes one or 2 at bedtime which keeps him asleep until about 2 AM. He is up at least 3 times between 3 and 7AM. He will get up to use the bed-side commode by himself, but he is very shaky. It takes him a long time to get up and shorts down, and it takes him a long time to go pee. When I do get up with him, I usually fall asleep in his spot waiting for him to finish.

The urologist gave him prostate med., and a med to help him not have the erg to have to go often.


My hubby just the same shouting me all night he has sleeping pills but thy don't seem to do any good I have now put him in a sleeping bag and close my door I get up twice in the night. To take him the bathroom I'm now getting a few hours sleep as he cannot get the zip undone no more falling in the night I also were ear plugs which helps As I no he's safe


My husband takes Trazodone. It is a sleep aid and is supposed to help with depression. It seems to work fairly well for him as a sleep aid. He sleeps from 9pm to 5am most nights.


Chris has been on sleep meds since first diagnosed as I made the point to the neurologist that I could cope if he slept through the night- he had always had a history of insomnia. He has taken various medications with different rates of effectiveness but for almost a year now he has had Seroquel 25mg (he currently has three tablets an hour before bed). Active ingredient is 'ketiapin' and they are used for people with bipolar type conditions they work well and I also take one with his neurologist's blessing. Then when he is actually in bed one hour later he takes two 10mg Amitriptilin an anti depressant already mentioned in a previous post. I do not see why your doctor can't prescribe these. He does not have any grogginess and sleeps around ten hours each night. I think you have to make the point that you need sleep and can't get it until Veronica is knocked out. I think doctors are reluctant to prescribe traditional sleeping pills I.e. Barbiturates, because of possibilities for suicide. But there are many medications like the ones we use which are not specifically designed to be sleep meds but do provide sleep - and cannot be used for a fatal overdose. Put your foot down with the doctor. Good luck.

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