Sleeping so much

[Tttp]

Hi everyone my brother is into PSP about 7years now progressing very fast the last 6 month, just wondering if any of your loved ones are sleeping a lot he seems to get very weak and very tired been wanting to lay down 5:30 in the evening and sleeping until the next morning just wondering. Nettie

[Hidden]

My dad who is probably 5-5.5 yrs into CBD sleeps 12-14 hrs out of 24. He rarely sleeps for long periods though 3-4 hrs being the max then he wakes for a while, repeat.

Ron

[honjen43]

Hi Nettie. Think it is probably part of the process. Can guess how you are thinking as I had similar thoughts! When? How long? It all seems different for all. He will probably eat less too. My love existed on jelly and icecream for a while.

He also had periods of days of mostly sleep and then rallied for a more wakeful period once or twice. So be prepared, but enjoy what "extras" you are given!

If you are in touch with Hospice nurse, they may be helpful.

Thinking of you. Hugs

Jen xxx

[jzygirl]

I think the last few months Brian slept more then he was awake. Jane xx

[Tttp in reply to jzygirl]

Hi how long into PSP is Brian what a weird disease. Take care Nettie

[jzygirl in reply to Tttp]

Brian passed away last September. Had symptoms since about 2010. Was diagnosed with parkinsons before getting the psp diagnosis in August 2014. Jane xx

[Tttp in reply to jzygirl]

Hi Jane, sorry about the passing of your hubby it's the same time my brother started having symptoms then in September 2014 he was diagnosed with PSP, and as you know it's been down hill ever since, such a terrible disease. Wanted to ask you was your hubby ever in the service? And the last six months of Brian's life what other things were going on with him, just need a little insight. Hugs to you. Nettie

[jzygirl in reply to Tttp]

Not in the services but a bus/coach driver. The last few months he had one infection after the other. I think that's how it is with psp. Jane xx

[Tttp in reply to jzygirl]

Thanks Jane for getting back to me, the journey with PSP. Take care of yourself, many hugs. Nettie

[Melhukin]

Hi Nettie,

I've noticed my dad being very tired when we visit him. Yawning and shutting his eyes. He says he goes to bed at 6.30pm.

When we make conversation with him he is very distant. He told us the other day that's he's so fed up.

So sad watching and waiting.

X

[doglington]

my husband sleeps a lot. he sleeps through the night as well.

its been like that for a while.

love, jean x

[Brenive]

Ivor also sleeps a lot, nods off for an hour in the morning about 10am on the days we stay in , and also about 3pm each afternoon. Goes to bed about 7pm , he doesn't sleep till I go to bed at 9 or 10pm.then sleeps all night .wakes about 630am. Lovely hope this continues......Brenda xx

[Tillyhugs]

DC sleeps a lot as well he is now over 8 years with PSP. Sometimes I think he is sleeping then he will suddenly start a conversation or join in with a conversation. He is still very cheerful (thank goodness). He loves interacting with his carers.

[Tttp in reply to Tillyhugs]

Hi there sounds like my brother at times my brother has never complained this whole time always in a good mood try's to smile when I ask him to so terrible the disease take care. Nettie

[Lieve]

The last six months of his life, my dad slept more and more, partly because of the meds, but mostly because he was so worn out, so weak. He could hardly eat anymore, still making an effort every time, his legs weren't working anymore. He was so so fed up and just waiting for it to end. He told a visiting friend he was going to die soon. Two weeks later, he had woken up, taken his meds, the nurse had come and washed/dressed him, but he didn't want to get up, he was still so exhausted. The nurse had mentioned palliative care to my mum and came back after her morning rounds to check on him again, and he was gone.

Thinking of you, Nettie - these are hard days, but if your brother follows the same path, he's almost at the end.

With much love

Lieve xx

[Tttp in reply to Lieve]

I know that's on my mind the end is near

[EricaE]

Hello Nettie,

My brother has only just been diagnosed and, other than being told he has had PSP for a very long time, we're unsure as to where he is on this journey but we have noticed that for some months he's been sleeping more during the day (mostly afternoons and evenings, rarely if at all in the mornings) - nodding off in his armchair - although as far as we know he still seems to be sleeping through the night albeit he sometimes get up ealier than usual and is sometimes confused as to what time of day it is.

We've also notice bouts of apathy and he doesn't seem to be eating as much as usual - or at least not all the time.

It seems PSP is different for each person but sleeping a lot could be a common symptom.

Thinking of you,

Erica

[Tttp in reply to EricaE]

What a journey PSP is I think some of the symptoms are common everyone is so different what is so terrible is most do have their mind it's being trapped in their body and can't get out terrible. Nettie

[Kevin_1]

Hi Nettie

My Liz is the same.

I'm sorry to say PSP brings with it increasing fatigue.

Best

Kevin

[Cuttercat]

Yes, Charles goes to bed at 6 a.m. and sleeps until 8 the next morning.

Cuttercat

[Tttp in reply to Cuttercat]

Hi how long has Charles had PSP now seems like it's something different each day. Probably only to get worse down the road. Nettie

[Cuttercat in reply to Tttp]

Six years!

[abirke]

Yes! B had it for 4 years after diagnosis (who knows how long before) and his last 9 months was very sleep oriented.

AVB

[nakkdo]

My husband now needs his fourteen hours every night. Then about every ten days he will sleep for around thirty hours. I do try and wake him to get him to at least have some fluids. After a few sips he just nods off again. He has CBD.

Deb.

[Jafarrar in reply to nakkdo]

My husband sleeps off and on all day and thru the night he doest know he has been asleep. He has CBD for about 4 yrs that we know of he has not walked for 2 yrs.his eating has slowed down a lot and is incontinent. Most time he is mentally with it but some days not so much. Praying for all love to all caregivers Jenny

[horserace34]

Hi my brother has had psp now for about 6 years. He sleeps a lot or you think he is sleeping but when you start talking about him he laughs. It is difficult for them to keep eyes open due to muscles in eye lids not working. So are they asleep or just can't keep eyes open? Carole

[doglington in reply to horserace34]

yes. Chris often looks asleep because eyes are closed.

Jean x

[Epace]

My husband was diagnosed in 2016 with parkinsons moving on now PSP, what a dreadful disease. He sleeps all night and all day. I am his carer and it is so very hard to watch. Unfortunately we had two toilet mishaps this weekend / is this the start of things to come. He was such a kind loving man only 67 but now I struggle to understand what he is saying and he gets annoyed. Reading this reassures me I am not alone and letting him sleep is ok. I try to waken him time for shower, lunch but he is happily snoring, He has so much apathy now, eyes tightly closed even when eating- thinking now it is so hard work manual handling him on my own I need carers, does anyone else feel as though you letting them down getting help but my body aches.