Not sleeping

[Cinderella80]

My mum has PSP which is very hard in itself to take care with. Sleeping has become a big issue. The other week I didn't get any sleep for four days straight and during the day I'm constantly busy with mum and house work so I don't get any time for a rest. I'm lucky I get something to eat sometimes. I have to sleep in her bed because she wakes constantly all night for the toilet. I don't give her any liquids past a certain time in the evening but still she wakes. Even when she manages to sleep my brain is constantly on alert in case she wakes. Is there any advice on how to get her and myself a good nights sleep. I haven't had a good nights sleep in two and a half years now. Would be grateful for any advice. Thank you.

[Motts]

Have you asked her doctor? I recently asked my doctor for a prescription to help me sleep... she did not think it was a good idea because if l get up to use the bathroom in the middle of the night l could be groggy and have another fall. Unfortunately sometimes there are just no easy answers. Sending you & your mom hugs... Granni B

[Zerachiel]

It may be worth asking your doctor to refer your mum to the local incontinence team; it is possible she has urinary retention and never empties her bladder properly, they will do an ultrasound to see if this is the case and may be able to advise how to deal with it allowing her and you to sleep better.

[daddysgirl1916]

Hello,

I remember that feeling of being exhausted all the time. You’re not alone, so many others are going through this with you. I used to take comfort in that.

Has your mum had a referral from the incontinence team? They do scans etc and provide pads, or sometimes a catheter is needed. Speak to your doctor about this if your mum has a constant urge to go to the toilet.

Do you receive any help at home? Any care calls? Again if it’s only you doing everything it can drain you physically and mentally and and relieving some of that pressure makes the world of difference. It’s not for everyone but it’s an option. You can speak to your doctor or go on to your local council site and look for adult social care.

I hope you get the help you need and a good nights sleep..

Sending love and prayers

Rita

Xxx

[Birdman42]

Hi Cinderella80. Unfortunately all us careers have been there at one stage and unless you have been a carer nobody can really understand how you feel and how exhausted you can get. Enough of the sympathy. Have you been referred to a hospice? with PSP and other long term conditions the hospice is not just for the palliative and end of life care but for the whole journey. They have a range of interdisciplinary teams that will help you, the carer, as well as your mother, ours has a day centre, physio, Thai Chi, councillors, nurses, volunteers, all of which you can tap into - if nothing else it gets you out into an environment where people know and fully understand what you are going through they will not judge just help you . I cannot speak highly enough of the support they give on a weekly (if you want it) basis not just a fleeting periodic visit. I know you are exhausted but make the effort it will be worth it. Take care or yourself. Alan

[Hastings2021]

I feel for you, I went through exactly the same thing with my husband, sometimes he would wake to go but didn't I think he was frightened of having an accident and wouldn't wear a pad. It wasn't until he became bed bound he went into a care home that I slept a little. He passed away 5 weeks ago and still have trouble sleeping now, hopefully it will get better soon. How about they go for respite even for a week for you to catch up on some 😴 love and hugs x

[Nodbod]

Hi, so sorry you're having to go through this. It's really not easy, I went through this with my dad but for far less time. I imagine if it's been two years there's not a huge amount of advice anyone can give. In case it is worth something, I did get some respite by persuading him to wear incontinence pants and he would use those in the night. There were some issues with him tearing them up in the morning (not knowing why) but he was safe and in bed rather than trying to go to the loo and falling, and a morning clear up was way better than picking him up off the floor during the night.

Please don't feel like you're failing by getting more help. My dad moved to a care home over six months ago, I felt so guilty but when I realised that he had two or three nurses/carers helping him do what I used to do on my own, I realised he was in a better and safer place.

I also totally agree with the idea of respite, get yourself some rest and you might even find that your mum finds it really beneficial too.

You're doing an amazing job. xxx

[Cinderella80]

Thankyou all for taking the the time out to reply. I am so grateful.

[Aprilfool20 in reply to Cinderella80]

If she sees the incontinece team ask about catheterisation. I have one and although I have had problems with blocking ,isleep through the night so does my hubby. It is also good if we go out as I’m not constantly on type look for the loo .

[Cinderella80]

We don't really have a team looking out for mum. We only have the dementia service and I don't think they know what to do. District nurse phones once a month to hear how she is getting on but if I do raise any concerns about mum they don't want to hear it. They just say tell your gp. And if I do contact the gp they say we need the district nurses to let us know. It's like no one can be bothered to do their jobs. Our gp was no help in advice he just said that's what the internet is for and told me to research stuff myself. I just want mum to live as full a life as possible. I don't want her to suffer so I will bear the not sleeping for mum. Thanks for all your help and advice.

[HARRADL]

Completely understood. I feel for you. Please consider all the help you can get. Even consider psws or a studenr coming in so you can nap in the afternoon. We put my mom down to nap at 2 for one hour and I or my dad nap too.

Definately need to search out support. As things change, you need greater help and be open to people coming in to support you with clean up and personal support for your mom. Self care is definitely key too.

Keeping my mom from cat napping all day was helpful as then she napped in the afternoon and would wake only a couple of times. Not always though.

Like the others, I would inquire about incontinence. At night, no liquid after supper, toilet her, and now she has a pullup or diaper on.

A psw also suggested a catheter. My mom doesn't walk anymore so getting up to the washroom several times became problematic.

Lots to consider, try and change up as things progress.

Good luck!

[Cinderella80]

Thanks for your reply's. I try not to let my mum nap too much during the day. She has a routine. She exercises at 2 she lays down for an hour in the afternoon and about 1ans half hours in the evening as she gets stubborn and doesn't listen. While she has a lay down I can get on with other things around the home otherwise the house would become a big mess. I don't want her to have a catheter. It's not necessarily that she needs to sit on the commode but the fact she cannot sleep at night very well I think. Thanks for your support everyone.

[AmandaF]

I am sorry to hear about your mum and you. I think sleep disturbance is one of the hardest symptoms to deal with; for good reason it is used as a method of torture. My own mum used to seem almost demented with lack of sleep and all her other motor skills would be made worse by tiredness. Mentally it is extremely difficult for you to deal with extreme fatique as well as everything else.

Unfortunately, I did not find any drug or any other method to help with my mum's sleep problems. I think it's deeply part of the neurological illness and in my mum's case did not respond to medication. Perhaps fresh air and the exertion of going out in the wheelchair helped the most.

Do you think your mum s approaching the time when she might accept incontinence products, perhaps at night? It's a big step and she understandably be resistent but it might help you both. Perhaps to get the advice of an incontinence specialist, as others suggest on this thread.

Anyway, I am terribly sorry and hope you find some respite very soon.

[Yana_1506]

hello, maybe someone told this advice but my mom has also psp/cbd and not sleeping , she started take Bondormin and it helps for now.