PSP Association
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Why oh why????

Just had my first session of someone coming into shower S. They are so generous, I have the young girl, who sits with S on a Monday morning, coming in earlier to shower him. That the sole help I get!

Anyway, this morning, quarter of an hour before she arrived, S gets up. Even though i begged him to stay put! The the past year,at least, I have had to heave him out of bed and struggle to the bathroom. Never knows which foot to use, hands freeze etc., etc., this morning, anything was working fine. Slow, but not his normal routine. Jo arrived, while he was still on the loo, no get effort to get up, no near misses, with falling. Everything straight forward!!! I know I shouldn't be surprised, adrenaline must have kicked in. But how can I demand more help, when he has just shown that he can be showered with minimal help?

I know those of you who have carers, coming in, have all reported this type to behaviour, but it's so frustrating, especially after all the rows I had last week. Who is going to believe me now??????

Well, today, I am actually (!!!!!!!!!!!!!) taking some of my own advice. Feeling really grotty, with a cold, so am now going to use my precious four hours sitting service, in bed, hopefully fast asleep!!! I have got to get well for tomorrow, the Carers group I am going to at the moment are looking at Anger Management! As you all will no doubt agree, something I need desperately! I won't be able to go like this, too many carers there, with partners in the last part of the journey with Cancer. Although, one has a hubby with PSP!!!

Off to sleep

Lots of love


6 Replies

Hi Heady

Hope you feel better soon and able to take part in tomorrow's group.

Take care, Maddy

1 like

Bailed out of tomorrow! Feel too ill, had to make a decision early, as I have a carer coming in to look after S. Hey ho!

Lots of love



o Heady I know exactly what you mean .The nurse had been coming weekly to access Johns new med it's Memantine to help him process his thought ! I do think it is helping a little . that's the first and only med that has shown to make any improvement for him . but I Cannot keep him awake .

whenever she comes he is sat up straighter waiting for her and although struggles he can answer her most of the time.

it often happens that way , Se are having an afternoon visit now because o was having to commode so many many time during the day myself .. Then that started to ease . all I can say is they won't keep it up .mOts so frustrating .


Did manage a couple of hours of sleep. No doubt S will be back to his usual self tomorrow! Hopefully, I will be on the mend. The huge worry is he will get this rotten bug! THAT, I can do with out!!!!


Oh how i know that game well. But i think you will find that all care companies do understand that outside carers are miracle workers. If i had a pound for every time I've heard but mum/dad can't do that at home or they won't do that for me..

Give it a few days and he will be back to normal and then they will realise that you need help and perhaps they will decide that you need more help then what has been offered.

Brian for instance can't even shuffle his right foot back or fowards thats even when sitting but get him in the neuro gym he can walk some steps in the parallel bars. I do call the girl jesus because she can perform miracles.

Main thing is don't lose heart you have got your toe in the murky water of assistance. Janexx


Too little suggestion too late ....but maybe use your phone as a video cameara...

A true Day In The Life of Heady and S!

Good luck


Get some sleep whatever day it is!


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