Further down the PSP road: Following a bad... - PSP Association

PSP Association

9,663 members11,572 posts

Further down the PSP road

acorneater profile image
13 Replies

Following a bad fall down the stairs my wife has recently returned home after two months in hospital.The dining room has gone and is now her bedroom.We have the bed,mattress,bath chair,walking frame,etc,but no bodily help.I've wasted many hours contacting all sorts of people until I was told I needed a dedicated social worker to sort everything out.I now have that person,but the weeks roll by and I am still trying to manage on my own with no help.

She is so unsteady on her legs especially during the night and first thing in the morning,I have to hold her up with one arm and cater for her personal needs just using one hand.Try pulling your pants up using just one hand.

Her speech,independent movement,and drooling has got worse,together with the confusion.I am constantly told to look after my own health and to take time out but this is impossible for me on my own.She now needs 24/7 help and care from professional people not a retired electrical engineer with no caring skills.

Written by
acorneater profile image
acorneater
To view profiles and participate in discussions please or .
13 Replies
kenh1 profile image
kenh1

I presume you are in the U.K. If so get on to your councillor and MP contact social services and ask them for a copy of their complaints procedure and then complain. If they are concerned about your health they should be doing something about it.

Best wishes. Ken, a retired electronics engineer and now a retired carer.

acorneater profile image
acorneater in reply tokenh1

Thanks Ken,I am expecting a call from the community team today,I will see what happens and take your advice if need be.

Cheers Acorneater.

Dadshelper profile image
Dadshelper

Keep after the powers that be. Call them everyday, make a nuisance of yourself.... the squeaky wheel gets the grease. Your situation definitely warrants help and you will need breaks from the 24/7 carer role.

Ron

It’s amazing the things we find ourselves doing for our loved ones. I had no care giving background but I figured out things quickly. Today isn’t a great day for me. I’m over tired and grouchy. I love people saying take care of yourself. I will pencil that in on my schedule which changes from hour to hour.

Tippyleaf profile image
Tippyleaf

Dear Acorneater

So sorry to hear the situation you have been left in, I can hear your love and your exhaustion. Shout loud and clear to your GP, Social worker , community nurse. You need more help . If you run out of steam it will cost NHS whole lot more than giving you both proper support now.

Sending a big hug

Love Tippy xxxx

acorneater profile image
acorneater in reply toTippyleaf

Thanks to all for your your kind words.I am waiting to do battle with the council who no doubt will try and belittle the situation ,wont have a clue about PSP ,and will give me an inadequate level of help.

AJK2001 profile image
AJK2001

Echo all of the above, but while you are waiting for the powers that be to swing into action (or inaction) you could contact a care agency yourself and get someone to come in and help, even if it's only a couple of mornings a week to get your wife up, it would give you a little breather.

I am surprised they let her come home without carers being in place (privately funded or otherwise), whenever Mum has come home from hospital / nursing home they have always checked equipment & personnel in place and been quite clear that she would be too much for me to cope with on my own & we need to fund carers to let her come home.

It sounds like the hospital have failed in their duty of care, which maybe something you want to follow up but for now think you need to contact some care agencies and get some support in for you both.

acorneater profile image
acorneater in reply toAJK2001

Thanks for your advice,I sit by the phone daily waiting for the council to contact me as opposed to me hounding them every day.I take your point about contacting care agencies,I have tried that and failed on two points.Firstly I can't find anyone local,and secondly carers will not do any lifting which is what my wife needs.

Sarah1972 profile image
Sarah1972

You and your wife have been treated disgustingly. Where abouts are you? If they do not give you the help you need then you are going to become very ill. Have you any family that can speak on your behalf and when did you last see your social worker?

Massive hugs to you x

acorneater profile image
acorneater in reply toSarah1972

Thanks Sarah,we live in rural East Anglia and sadly don't have family who can help.I am in contact with our social worker but it appears to be down to me to keep badgering the powers to be.

Sarah1972 profile image
Sarah1972 in reply toacorneater

I’m in Lowestoft are you anywhere near me? Xx

acorneater profile image
acorneater

No,we are in North Essex near the border with Cambridge.

Sarah1972 profile image
Sarah1972 in reply toacorneater

Yes a little out the way. I really hope you get the help you need, my mum is in her final stages but if there is anything you need to know then just inbox me. Hope you can find the strength to get the help you need. Have you requested continuing health care?

Not what you're looking for?

You may also like...

My mum is 70 and has PSP 😢

Hi, I’m not sure if anyone is still using this site as I have noticed posts were 4 years ago but I...
Kezzamum profile image

lack of help

A friend of mine was diagnosed with CBD last year, but started with symptoms about 4 years ago. It...
Newsymum profile image

Ever hear of the PSP "road"?

I have an analogy I use to describe PSP patients and caregivers. I call it the PSP "road". I found...

PSP: To do what's medically recommended or respect my mother's wishes? Advice needed.

Hi Again, I am in need of advice. My mother has PSP and is now having trouble swallowing even...
Callunas profile image

Psp

Hi everyone hope your all aswell as can be, I have a question I'm just wanting some advice with......
Maxine12 profile image

Moderation team

HelenPSPA profile image
HelenPSPAAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.