constantly asleep

[Sayer]

My wife, Pat is now into her fifth/sixth year of PSP. In addition to sleeping at night , she has started sleeping much of the day away. Is this through boredom or is her 'system' starting to shut down?

Worried

[honjen43]

Hello Sayer

[honjen43]

Hello Sayer Yes, it can be a symptom of the body shutting. May also pay to check if she has anunderlying infection as this can also cause tiredness. How well is she eating? And breathing? All could cause her to sleep more.

Suggest you should check in with her nurse and/or doctor, just to rule out anything that can be controlled.

It is a difficult time for you, knowing that she will not recover and trying to pick what is happening. Have been there too.

It may just be a time for her body to sleep and recover from the latest onslaught! In a few days you may find she is more awake. It is hard not knowing!!!

Hugs,

Jen xxx

[GonnaMissDaddy]

I'll weigh in on this although I don't know for sure what sleeping more means. I do know my dad, 10 years with psp, 81 years of age, has been sleeping all but about half the 24 hour day, and for the last several months he only gets out of bed, via hover lift, to sit in his lifting recliner for a couple or few hours a day. He's very weak and getting prone to starting signs of bed sores. All that said, for the last week, he was improved, the whole week and us 3 carers noticed it, individually and apart from each other at different times of the day. Then just as suddenly from out of nowhere, yesterday he was very weak and mostly unresponsive again. I've read that many with psp are on antidepressants so you may want to consider talking to her doctor about that if you haven't already? I'm sorry for the agony and heartbreak you're going through. I hope and pray she gets better, as sometimes does happen, usually as a surprise.

[Julieandrog]

Hi

Same here with Rog, bizarrely makes them easier to care for but sad watching them. I just feel when asleep they are at peace.

Julie xx

[easterncedar]

My sweetheart was sleeping like that for a few weeks last winter, and the very experienced aide told me that this was a trend that would continue to the end. Then he woke up and came back, and he has been alert and lively and active for the past 10 months. Impossible to generalize with psp, I think. Hang on, love and peace, Easterncedar

[Richanne]

Jon was only diagnosed in April this year but has been sleepy in the day for several years, I guess within the time his symptoms first started, 4-5 years ago. I remember getting furious with him for going to sleep at the table at lunch time even while I was talking to him! In fact he's better than that now but still can sleep any time if not being stimulated. Fortunately he still sleeps well at night too. So as far as we can see it's been a symptom of the disease, not due to medication.

[Marie_14 in reply to Richanne]

Richanne

My husband was the same. Neither of us knew he had anything wrong with him at the time. He never fell asleep at the table but spent most of the evening asleep then went to bed and slept again. Looking back it was PSP. Then we had never heard of it! Wish I could still say the same thing. I used to get so cross that he was always asleep because it was so lonely. Now I would willingly have him sleep across from me if he was otherwise alright.

Marie x

[Richanne in reply to Marie_14]

I find it lonely too, Marie. Jon still snoozes at any time so I frequently say something to him, only to find him asleep. End of conversation.

Even awake, he doesn't talk much! Oh well, at least we are still able to get around with only a cane or walker. And we've made it to Tasmania for two months near our son who works in Hobart. The journeys another story!

All the best

Rx

[Marie_14 in reply to Richanne]

Richanne

I went to the Care Home to visit my husband today. He fell asleep after about 20mins! Didn't wake up until I was almost due to go home. He looked awful today and had been sick last night it seems. Now I will worry until I see him again!

Marie x

[Richanne in reply to Marie_14]

What a wasted visit for you.

What's he like if you wake him, to point out that you're there for a visit? I can wake Jon to speak to him but he generally goes back to sleep pretty well straight away.

[Marie_14 in reply to Richanne]

Usually he manages to stay awake but keeps asking me when I am going! He really wants to sleep. On Sunday he was well and looking at TV. Today he just didn't want to know. He looked so ill when I got there I knew at once something was wrong. He didn't tell me he had been sick but I went to speak to the Manager and when I came back to him he was out for the count. He really wasn't interested in anything. They say if he is sick again they will ring the doctor to come and see him tomorrow. I just hope they don't send him into hospital.

As we still haven't heard about CHC...11 weeks since he was assessed they are getting fed up! They are a Residential Care Home not a Nursing Home and they can't give him the Care he needs. I was told lots of others have had CHC granted within 6 weeks! So I am just lost as to why we are being kept in the dark. Maybe they hope he will die first?

Marie x

[Richanne in reply to Marie_14]

And how far down the PSP road is he? Since first symptoms? Since diagnosis?

[Marie_14 in reply to Richanne]

Richanne

He was only diagnosed a year ago. However his walking was really bad for 12 months before that. Then there is all the sleeping which goes back years. I was told by a nurse he is in the final stages. The consultant told me last week there are no stages!! That has to be rubbish? Everyone tells us something different.

Marie x

[Richanne in reply to Marie_14]

From what I have been reading on this forum, there are definitely stages but they are not the same for everyone. Nor is the speed of progression the same.

I feel that Jon's disease has progressed quite a lot in the last year but he can still walk with a cane, though in danger of losing his balance always, so I usually hold his hand. He's safer with his walker.

I have started thickening his drinks and that is preventing a lot of coughing. And he is getting gradually more forgetful.

His eyesight is too poor to read a book but he has begun to enjoy audiobooks. He can't manage the controls on my iPad though. So when we get back I will look into RNIB audiobooks for him. I guess the control system will be suited to the visually impaired.

He left the hot tap running last night and flooded the bathroom right onto the hall carpet. But he's gentle and loving so it's easy to live with so far.

Rx

[doglington]

My husband sleeps at night and at every opportunity during the day. He can stay awake in company but still dozes. He often says he will be " going " soon but still eats well.

Jean x

[Cuttercat in reply to doglington]

Charles eats well. Ice cream is keeping him alive

[steph02]

I blame it on the weather, I too find myself am falling asleep whilst watching the TV. and find it hard to stay awake. although ok when in he company of other people. strange because i have only been like this for a few weeks.

[Hidden in reply to steph02]

Steph

Lot of thinking on how to go about this ? My guys was never really a talker before this crappie disease.how and what do you feel ??do you dream when your asleep, are you fully aware of what's happening to you and around you. I'm sorry this bleep disease is doing this to you .. (( hugs))

[enzo501]

My wife is in about the same time frame ...not yet as drowsey in the day ...she gets about 12 hrs sleep a night ...I am told by our neurologist that this horrible disease burns alot of calories with the constant pulsating of her leg and all the anxieties it produces ...I advise you to let her sleep ...it's aplace where there is NO pain and as little negative energy as can be expected ..Good luck ...jeff

[Cuttercat]

Charles sleeps 14 hours at night and now 4 - 6 hours a day. It is normal for PSP but sad as wekk