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.
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acorneater
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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.
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.
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.
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.
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.
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.
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?
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.
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?
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Sister in the UK with CBD
PSP Article in the New York Times
mum was told august this year she has psp
Leaving PSP sufferers on their own
I'm so angry at PSP.
