How much sleep?

[Cinnylou]

I understand that as disease progresses, sleep time increases as well. My husband has CBD. I got a text at work yesterday from his carer telling me that he wouldn’t open his eyes or respond to her. He’s done this before, so I told her to just let him sleep. The hospice aid showed up to bathe him. Ended up bathing him in the bed. But they both got him up to sit out on the couch in the living room. The carer couldn’t really get him to eat or drink much. He just kept falling back to sleep. He ended up being that way the whole day.

I guess my question is...should we let sleeping dogs lie? When my son was a baby I was always told to never wake a sleeping baby. Is this the same? If he’s rested, won’t he wake up then? Or is there harm in the possibility of letting him sleep too much? I don’t want to do anything to make his matters worse, but on my day off last week I let him sleep until he was ready to wake up on his own, and he seemed to be in more chipper spirits and ate and drank well. How many hours a day do your loved ones sleep? Could he just be declining more? Thoughts?

[doglington]

Chris slept a lot. As PSP advanced he just slept in his chair, at the day centre or anywhere.

I got him up until he was on palliative care but he still slept. He also slept at night. Other times he was awake more. I just went with the flow !

I felt sorry for those who were caring for those who are up and down all night !

love, Jean xx

[kenh1 in reply to doglington]

My thoughts entirely, on only four occasions was I woken during the seven years I cared for my wife. When she slept it meant she was comfortable it meant she had peace of mind and most importantly she was free from pain, and I having had a good nights sleep was able to be a much better carer throughout the day. As someone pointed out on one of my previous posts even God had to rest. Wishing you all a good night's rest.

Love. Ken 🌝

[HilsandR in reply to doglington]

Exactly the same as Rod, Jean. I'd get him up, showered, dressed and down for breakfast and 2 minutes after putting his porridge in front of him he'd be dozing off, often leaning into it. Like you I just went with the flow. The sense of fatigue was obviously overwhelming for him and totally out of his control. He loved to feel the sun on him so that's where I sat him, either in his chair by the patio doors with the sun streaming in or weather permitting, on the patio. Looking out into the garden now, sun filling the patio, oh how I miss seeing him there but I can at least smile knowing how much he enjoyed the warmth of the sun. Hope you're enjoying this lovely bit of late summer.

Love Hils

x

[doglington in reply to HilsandR]

I had his bed in my " garden room ". It has a lovely outlook of our lush

( overgrown ) garden. Now I think of him all the time as he dozed here , listening to his classical music.

It's a beautiful autumn.

Love Jean xx

[HilsandR in reply to doglington]

It's comforting to think back and realise that when they were dozing they were at least in some kind of peace, well I hope that was the case. Yes, it really is a beautiful autumn. I'm going to RHS Wisley tomorrow with my daughter and little granddaughter. I am sure the colours there will be turning, which is always beautiful, but mainly going so that Maisie can have a little play in the children's play area opened by the Duchess of Cambridge earlier in the year. Must make the most of the sunny days whilst they last and being with the little ones is always such a tonic, definitely keeps me on the straight and narrow.

Love Hils

X

[doglington in reply to HilsandR]

Oh, it will be lovely at Wisley.

I've just heard that my son's wife gave birth to a little boy last

night !!!!

Guess where I'm going this weekend. . . .

love, Jean xxx

[SewBears in reply to doglington]

Congratulations! Enjoy your new grand baby!

[HilsandR in reply to doglington]

Such lovely news, Jean, congratulations! I am sure the little fella will bring you great joy and add a new chapter in your life. Life keeps going on, doesn't it, and the birth of a grandchild makes it all worth it, eh? Enjoy those first cuddles.

With love,

Hils

X

[doglington in reply to HilsandR]

I love cuddling babies anyway but this one is very special as his dad is 52 and so he is real bonus !

Love Jean xx

[Nanny857 in reply to doglington]

That's lovely news Jean, congratulations on your new grandson. Enjoy.

Lots of love, Marion.

Nanny857xx

[doglington in reply to Nanny857]

Thanks Marion.

love Jean xxx

[HilsandR in reply to doglington]

That's so heartwarming, Jean, such an exciting time for you all.

Love

Hils

X

[Marie_14 in reply to doglington]

Jean

Congratulations to you and the baby's parents. Love to your little Grandson. You will love him to pieces as you do your other little ones. I am delighted for you.

Marie x x

[Hidden]

If he is sleeping a lot he needs it. The more Larry sleeps the better shape he seems to be in.

[Railfan]

I think your Neurologist might be able to answer that. My own experience is that I wake up at night after just a few hours of sleep. I'm awake for a couple more and then back to sleep before my wife even knew I was awake. When it becomes later in the morning, opening my eyes and responses to external stimulus are nearly non existent. My mind is at a near conscious state but at the same time, I really don't want to wake up. For me, still early in the progress, even a small bit of food or sugary drink will make me want to close my eyes unless I can find something that makes me active.

[Karynleitner in reply to Railfan]

Thanks for your response. It was interesting g to me because I often think my husband is often awake at night.

[Rowan8831]

Here are my thoughts.

I think let sleeping dogs lie is a good policy! My husband has had CBD for 7 years and sometimes sleeps a lot and sometimes is more wakeful. Goodness knows why. We just go with the flow now. It is difficult when you have carers as they are usually tasked with doing certain activities so feel they have to get on with them.

As his CBD has progressed he has had more difficulty opening his eyes when he wants to and that makes it a bit more complicated but the carers are good at reading this now.

Sleep is healing.

Wishing you both all the best..... xx

[doglington]

It is important to remember that closed eves don't necessarily mean he is asleep.

[Karynleitner in reply to doglington]

Yes, I definitely see that with my husband. I believe he is in the final stage of PSP.

[Katiebow]

I let Ben sleep as much as he liked, I was lucky in that he seemed that he was asleep for most of the night and so I could sleep too ( albeit on the sofa in the next room with door open and baby monitor by my ear) if he was unwell he would be restless but otherwise quiet and peaceful. I had no need to keep him awake and felt it was a blessing for him to be peaceful in his reclining chair in the daytime or early bed and there for the night.

Love Kate xx

[HilsandR]

My husband had PSP and slept a heck of a lot. It's the disease and out of their control. Its so hard, I know, but we just have to go with the flow with the things we can't change - I guess that's probably true of all life's ups and downs.

Best wishes,

Hils

x

[SewBears]

It’s the same here with hubby as it is with everyone else. Some days he’ll sleep all day and all night but there are times when he doesn’t sleep at all. I go with the flow and I can accomplish a lot during the sleepy times. I spend as much time as I can with him during the awake times. I don’t think of it as him declining as I tell myself this is the new normal and he needs the rest. Denial maybe?

Xoxo from I SewBears

[Cinnylou]

I appreciate everybody’s responses! And everyone seems to be of like mind to just let him sleep. So I guess we’ll just roll with it. Now to get that through to his carer.......🤔

[Jdjdjd]

Just read your post, so I hope you’re now back to his usual self, my husband has CBD too and sleeps a lot, but if I can’t wake him or find he’s not communicating as much ie very lethargic and non responsive it usually indicates an infection, so I always get him checked by the gp same day otherwise he can end up in A&E, I have just purchased a new thermometer, same as the paramedics use and check his temperature every morning; and any doubt I give paracetamol, it has good results for me

Hope you’re doing ok yourself 😘

Janet