Sleep or lack of!!: Dear All We are hitting... - PSP Association

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Sleep or lack of!!

Tippyleaf
Tippyleaf

Dear All

We are hitting a new era of agitation in the daytime and at night. Daytime I am managing but the nights are exhausting. So looking to the experts ( you guys)

for ideas to improve my husband’s sleep.

I give his night time sedation (Clonazapam)at 8pm in the hope it will settle him. Put him to bed around 10pm and on a good night he is settled by midnight. No fluids after 6pm except with medication. No computer after 6pm and I try to get him out of the house every day.

We use essential oils to pulse spots, CPAP for his sleep apnea. I give painkillers and antihistamines to reduce pain and itching. He listens to sleep meditation tape.

We use a conveen twice a week but he can not tolerate this in bed and rips it off ( ouch) so he gets up at least 2hrly to pee. Sometimes he gets up thinking he needs to pee but can’t.

He has a hospital bed which goes up and down like a fairground ride plus there is a bed sensor ( life saver)

His best sleep is usually between 3.30-5am.

Any suggestion gratefully received from a very tired Tippy

Xxxx

27 Replies
oldestnewest

So sorry Tippy, we must be close to the same stage. Just this past week, sleep has be hard to come by for any long amount of time. Is he still mobile at all? S uses a wheelchair most of the time and I stand by to help transfer. I have to provide a walking escort during the night the few steps to the toilet. We use melatonin at night. What essential oils are you using? Lavender?

Tippyleaf
Tippyleaf in reply to Khartt

My husband can still walk short distances ie to the toilet. I am using a slumber essential oil on pulse spots and lavender in his CPAP filter. Hadn’t thought of melatonin so that is a good suggestion

Many thanks Tippy xx

Recently a friend of mine has had this problem. Her doctor reccommend magnesium. Ask your medical team.

Ooh soooooo sorry Tippy! Sleep deprivation is a killer, I know. Sounds like your trying just about everything, however I’d ask the gp for stronger sedation for night time, failing that, I think you have chc? Respite perhaps? Hugs lovely x

Do you have your main meal at lunchtime? We have recently changed to this regime and it seems to have helped Ian to settle more easily for the night.

Hope you both have some relief soon.

Much love

Juliet x

JCRy
JCRy in reply to JCRy

Actually, Ian is on Pregabalin for pain, as well as Clonazepam for sleeping. X

Tippyleaf
Tippyleaf in reply to JCRy

Hi Juliet

A mixture of meals but good idea and I will look at that one and see if there is any correlation. Once we get on a bad run like this difficult to tell what is going on. Just hope I can get him out of this nasty sleepless groove!!!

Thank you, love Tippy

Have you looked at getting a hand held urine bottle or even a bedside potty. Least if he got up he doesn't need to go far, hopefully letting you sleep. Boy do I remember the every 2-3 hr nighttime nature calls. Getting interrupted sleep is hard to do for long.

Ron

Tippyleaf
Tippyleaf in reply to Dadshelper

Hi Ron

My husband insists on going to the toilet I have a bottle and commode and he will use neither, at night he is mostly wet by the time he reaches the toilet , so all that effort all those falls without his desired outcome such a waste of energy for both of us!!! But I haven’t offered the bottle for at least a week so will try again.

Thank you

Love Tippy

Tippy this is a horrible stage George has clonazapan, larazapan, and zopiclone, doesn’t always work but 5 out of 7 nights we sleep. Hope you had a good night xxxxx

And midazolam Yvonne. Xxx

Sorry beautiful lady I forgot that 💕❤️💕

Dear Tippy, I know that Bev (NannaB) had night careers for four nights a week, may be a good idea to private message her. It gave her the chance to get some good nights sleep. I was lucky with Ben, he mostly slept fairly well during the night and always wore a convene up until the last few weeks when he began to get sores. He was in bed by eight for the last few months as he was so tired. I know on the odd nights that he was agitated it was really difficult to hold it all together, sleep deprivation doesn't help with patience.

Love Kate.

ps, there is a great little travel urine bag that folds really neatly and is easier to use than bottles, it's called 'Uribag' and is useful at home or when out and about,very discreet.

Tippyleaf
Tippyleaf in reply to Katiebow

Hi Katie

You are right about the sleep deprivation, usually I cope well without a great deal of sleep but currently being pushed into a whole new league!!! But

I have a long weekend live in care booked for mid October holding onto that thought - 3 nights ( and days) sleep!! We have a uribag for when using the convene but my husband refuses to use any bottle!!!

Love Tippy

Katiebow
Katiebow in reply to Tippyleaf

If only they could see that they can help themselves and make their lives easier, it's so sad Tippy when they have been strong independent people.

Love Kate xxx

Tippyleaf
Tippyleaf in reply to Katiebow

So true Katie their non PSP selves would do things very differently!!!

Lots of love

Tippy

Xxx

Tippy,

None of the drugs listed above helped Ruth. But 15mg mirtazapine at night seems to work pretty well.

Richard x

Tippyleaf
Tippyleaf in reply to Richard33

Thank you for the recommendation much appreciated

Love Tippy

Sorry Tippy, got no useful advice. We never got any sleep until Steve learnt to use a pad and then finally moved to a cathater. Take daytime naps when you can. If you are not get having help in, then I suggest you start thinking about it soon, least there is not quite so much pressure on you. Find out about respite care as well. None of us can do this alone, please don’t wait until you crash, before accepting care help, like I did. It wasn’t one of my brightest moves. I still want to curl under a rock, when I think of the damage it caused us both!

Sending big hug and much love

Lots of love

Anne

Tippyleaf
Tippyleaf in reply to Heady

Hi Anne we have CHC funding but no might care this I think I need to review. Luckily I am a good mapper and can get back to sleep between night time

events. Have never needed too much sleep but oh boy this now being tested!!!

Xxx

Oh Tippy,

I think it’s time you ask your GP for a better sleeping aid, as sleepless night is a major energy zapper.

We went through that phase with my B and luckily after a lot of trial and error (and begging for him to cooperate) we have settled with Conveen.

Love n hugs,

Mx

Tippyleaf
Tippyleaf in reply to Megabrew88

Thanks Megabrew we manage a conveen in the daytime roughly twice a week but at night he just rips it off. The drive to get to the toilet is so destructive but have no idea how to break it! Arrggghhh

Love Tippy

Hi Tippy,

Hubby may benefit from something on top of the clonazepam? (And maybe give clonazepam later?) Just looking at Yvonne's post with all that George is taking.)

We tried every drug we could to get G to stop getting up every 2 hours to pee. He just couldn't get used to condom catheter eirher - so hard to break that deep deep training if they are still mobile and think they can get to the toilet!

He had a Lifeline (safety alert) so I would sleep in another room several nights a week to get caught up. I would much rather have slept worth hubby, but I had to preserve my health to look after him.

Good luck! Xxx

Anne G.

Thank you GP has given me a short supply of double dose Clonazepam I know this has a cumulative effect so hoping it will kick in soon!!!! I too sleep in another room and sprint out of bed every time his bed sensor goes off.

Reading everyone’s replies I think this agitation and lack of sleep is a PSP thing!!! But somehow we have to get some 😴

Love Tippy

Tippy, we are at that stage too. W goes to bed at 7pm and sleeps soundly to 10pm, then he's up for his first trip to the toilet. Then from midnight/1am its every 2hrs and we've had a few nights when it's every hour from 2am. We are still in the same bed as I'm afraid of not hearing him or getting to him in time if we were in separate rooms. However he starts on new medication (Desmopressin) next week which hopefully will give us both a full night's sleep. In sympathy with you. Nanny857xx

Tippyleaf
Tippyleaf in reply to Nanny857

You are good to still be in the same room - I gave up

On that 18mths ago ( my hubby hates it but I needed sleep even back then!). We have a bed sensor so I know if he tries to get up or leans out of bed etc.

Wishing you a peaceful night

Love Tippy

Thanks. Just about to put the earplugs in to shut out the sound of him snoring lol.

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