PSP Association
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Mums Home

After 10 wks in hospital mum is home. As you're all aware she qualified for NHS cont care funding. She now has 2 carers 4 times a day and 1 carer overnight for 5 nights.

Dad is so happy to have her home and mums so happy to be home.

1st night she slept right through but 2nd night she was up all night calling out So no one got any sleep

Ive no idea how long we will be able to cope but eventually I think we will have to give in and place her in a nursing home .

5 Replies

I'm so pleased your mum is home and a care package is in place. I also hope she soon settles at night, especially when she doesn't have overnight carers. I am lucky if I get 2 hours sleep at the weekend when we don't have a carer so now I feel as if I have a hangover without any alcohol involved. I have a Crossroads sitter this afternoon and will go to bed then for a few hours.

Your mum and dad will soon get used to the routine and different carers coming into their home so let's hope your mum will be able to stay at home now.

Best wishes.


Nanna b. Thanks


Is there not a nite relaxer to help her sleep ??????


C has always been a rotten sleeper and it has got worse since PSP diagnosis. Practically the only meds he takes now are sedatives to knock him out at night. As I am the sole carer I know I cannot cope if I don't get my 8 hours so our neurologist focuses on medication to knock him out. It is not entirely successful but he has got the message and stays in bed now even if he is lying there wide awake. Talk to your doctor about this and get something prescribed which will work.


We kept mum at home it was hard carers in the day and me and my brothers took it in turns to do nights towards the end mum had enough hoisting about and they asked my mum did she want a syringe drive fitted and she put her thumbs up to it and me and my brothers didn't have a say in it cause mum agreed to have one all taken out of our hands really which I am very annoyed about, don't know what they put in it cause my mum didnt get out of bed again and died five days later and luckily I was with mum when she passed away . It's not an easy journey it's very hard and I feel for everyone who has to deal with this awful disease xxx take care xx


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