PSP Association
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My husband's PSP is in the last stages. Eyes, speech, wheelchair bound,swallowing etc. weighs less than 100 lbs. He was put in a nursing

home when I had a ruptured appendix. He has been there for 3 mo. & I was thinking about bringing him back home as he has been getting worse & I don't want to see him die in that place. Anyone else out there that has gone thru this same thing?

6 Replies

As I said in another contribution, my brother-in-law is in the latter stages of the disease. My sister has a great deal of help at home, with 3 carers a day going in, and someone to stay overnight. It is still extrenmely demanding on my sister emotionally, as she feels she carries the full responsibility for his well-being, more so than if he was in a Nursing Home under the care of Nurses. If you are going to have your husband home, make sure you have plenty of caring support in place beforehand, a GP who is willing to come out to check up on both of you, and in addition someone who you can ask for advice and also lean on emotionally. It will obviously be a very trying period. The best of good wishes.


I had been taking care of him by myself before my appendix ruptured- giving him his shower & feeding him etc & while I was at work I paid a neighbor to come look after him, but he didn't someone there all the time. Now I think he needs someone there all the time but didn't know if she would be suitable. But after your reply I have checked up on in home caring. He is in no pain but someone told me that I should call hospice even though I am not sure what they can do.


I would highly recommend Hospice. My mother has PSP and luckily has a Hospice nurse come to her 5 days a week for showering, toileting, grooming and companionship. I cannot say enough about the love and care that they've given to my mother.


My sister was very lucky. The NHS provides something called Continuing Care for those discharged from Hospital who are viewed as terminal. However, they do not make it very widely known, for understanbable if not very ethical reasons. Maybe you could enquire from your GP as to whether it might be available to you. Also, the local Hospice should be able to give advice, as many of the symptoms, such as difficuly swallowing and so on are similar to other conditions for which they have experience. Best wishes, Melvyn


The hospice care for all their pain relief and advise you/ the home on the right care for the end stages. They are also an absolute godsend for you so do call them. I was in a terrible state of worry and exhaustion and even went to see a counsellor to try and address my worries and felt no relief from that at all but a week later a hospice nurse came along to see me and mum at the care home and oh joy, she was able to understand fully and advise us all and mum got pain relief patches, liquid medication instead of tablets and it really made things easier.The home and GPs listen to the hospice as they are experts in this type of care.It's not about withdrawing things its about keeping them comfortable. Even if you talk to one of them you will be amazed what they can do.all the best



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We put my mom in a nursing home in March,2013. She's 85 and in advance stages. Her vision and speech is failing significantly and she lost a lot of weight due to an infection caused from a broken hip. She is strapped in her wheelchair because she falls forward(and that's how the hip broke). There is no way she can be in her own home due to the care level required.


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