PSP Association
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Hello all, How do you explain to my father high level care is needed now and a Nursing Home is the the next step. And Dad says No. has

An update to my last question, thanks for the replies. I need some help, my Dad is 71 now, has been in Preston Hospital on the Urology ward for a month now having had lots of set backs. Due to the care needed 24/7 Peg feeding, catheter, mobility, urine infection recently and knowing that My father is in the advanced stages of PSP. We has a family have had an assessment for Continuing Health Care, which has been good news because Dad was the only person in that Hospital they have ever had with PSP. DAD still thinks he's coming home and my MUM will cope just like before he was admitted into Hospital. Mums a new person since dad's been in Hospital, not just surviving on 2 or 3 hours if lucky of sleep a night. Mum was worn out and fell in the garden a few times, No broken bones thank god. Its going to be hard to explain still speaks and expresses his thoughts and feelings by tensing up when questioned. Nursing Home is required now to meet dads care needs, any Replies or other people who have experienced such a hard decision would be very much appreciated. Honesty37xx

7 Replies

Hi, Honesty37 -

Slightly different, but when my late father-in-law at 90+ and living on his own, it was thought better he should come and live with us - the hospital (in Essex - we live in Norfolk) and Social Services managed to convince him that they would not discharge him to going back to being on his own. He then made the choice that to come to us was the "lesser of two evils" if I can put it like that, as he certainly didn't want to stay in hospital.

If you can get the professionals on your side, then if he wants to "blame" someone it will not be you ...



A difficult situation to be in . I would suggest that you ring the Helpline of the PSP Association and ask for their help and advice -- thats what it's there for. If you are not a member, its free to join on

Scroll down the home page and click join us on the right hand side and the rest is straight forward.

Good luck



A very difficult decision. Questions to consider. Is the level of care at the hospital consistent? Will it be any better in a care home? Could you get support from your social services and the local hospice to maybe look at getting carers in your dad's home to support your mum and offer respite. Where will be your dad's last few days better for him. At a hospital, possibly in a caring hospice, a care home, your home? With support the decisions can be easier. My dad died at home earlier this month. We took him out of our local hospital due to the quality of care and lack of knowledge regarding his condition. The care was inconsistent. He died with his family around him in a familiar caring and loving setting. Have no regrets... Try and get the support and the decision might be easier.


The son.


I have looked after my husband at home for the past 2 years sadly he passed away with all his family by his side on the 12th September I am so happy that I was able to do this with help from ccarers and our local hospice He was admitted to hospital 2 weeks beforehand with a urine infection they did not seem to know a thing about his condition and nursing care was appalling we decided to discharge him and it was the best thing we could have done my husband had his memory right up to the end I have no regrets as I know he was well cared for in his own home up to the end this is giving me great comfort but I miss him dearly


Hi Honesty,

My wife 63, been in a nursing home since April,not ideal but its the best round here for miles !

If she had stayed at home,she might not have still been here,and same goes for me !

She has 24 hour care there,which I could not give at home.

In a way she"s contented,that is to I vist her,then its"why don"t you take me home and I would not leave you here! "

The home are trying to find out more about PSP and how to care for people like my wife


My father was admitted to hospital in April of this year and spent 5 weeks there. Whilst there we were told that there was no way that he would be able to live at home. My mum who has Parkinsons had almost worn herself out trying to cope and so we did take the decision as a family to look for a nursing home. It was something we said we would never do but we could not find any other way of providing the 24/7 care he required.

He had begun to realise that his needs were becoming too much for my mum to cope with and so when we all sat down and talked to him about it he agreed to try it. It isnt easy and in an ideal world he would be with us. We have tried to find the next best thing. A home close enough for one of us to visit daily, staff who are keen to find out more about PSP ( I have been in and talked to a large group of staff and provided a lot of information from the PSP Association) and where ever possible short trips out either to visit family or in to town or the park.

It was a difficult decision to make and is still hard but we have tried to make the best of a difficult situation. I would say visit as many homes as you can, check inspection reports and get someone to visit as frequently as they can when he first settles. Dad seems easier knowing that he is not being abandoned or forgotten about and he knows that in an ideal world if mum was well enough to cope, if we ( the children) all lived locally and didnt have to work he would still be at home with us.


My brother-in-law is on NHS Continuing Care. He is at home. He also has a PEG feed, no mobility, no speech or facial expression, and doubly incontinent. The Continuing Care provides a carer with him overnight, and two carers to be there at 8, 2, 6 and 9 to get him up/put him back to bed, and change his pads. My sister feeds him from a syringe at set intervals during the day (she found the PEG feed overnight a problem as he started to slip down the bed during the night as he became weaker and, in a nearly horoizontal position, found the food coming up into his mouth and from there down his windpipe). In addition, my sister pays a carer for six days a week, just to provide back-up during the day, and reassurance should anyting go wrong. It is fortunate that she can afford to pay for this extra help. It is the emotional strain that she finds difficult because so little seems to be known about the condition, and it seems to progress diffferently in each patient. The challenge recently has been balancing the drugs to suppress his saliva (which slips down his throat and nearly causes him to choke) but which also dry him up, and the drugs to prevent constipation, another symptom of the disease. If you are going to move your father to a Care Home, I think you need to be aware that he may not get the 24-hour oversight (or anything like it) that he may need as his condition deteriorates and that may be available at home with a combination of carers and your family, but also how your mother is going to feel when she is not around him to see how he is. Guilt is a very common symptom of those whose partners go into Nursing Home, and can often be as bad or worse than the strain that she is under at home. I wonder if a Nursing Home could be found that would be amenable to allowing her lots of opportunity to be with him (albeit he may be pretty miserable, at least at first), or whether your family should try out the Continuing Care option at home for a while.


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