PSP Association

Back after a break

Hi Everyone

I can't believe it is nearly 2 years since I have posted anything or visited this forum.

The last year in particular has been very hard and at the end of each day I just had the energy to go to bed. Very sadly at the end of last year my husband lost his 5 year battle with PSP. We managed to care for him at home until the last 6 weeks of his life, when the care he needed was beyond that that we were able to provide at home.

The staff of the care home he went into were brilliant, and whilst it wasn't what we had wanted, it did allow me to spend more time with him without being involved in all the care he was requiring. I feel he and I had "quality time" together albeit very difficult in the end stage of PSP. He now is at peace.

I hope to be able to join in the various discussions and perhaps catch up with old friends.

Love to all of you


9 Replies

Hi please may I ask what the point was like when it was decided he go into a carehome that you could no longer cope because I feel I am reaching this point with J.

It would be very helpful xxxx


Its a sad fact but you will just know. I have just placed Steve into a nursing home last week so still fresh. I couldn't carry on - physically or mentally. Tears were flowing and even though Steve didn't want to go the last fall onto me was the breaking point. The hardest thing is actually sitting with the health visitor and social services and admitting I couldn't carry on. No easy answer I am afraid but deep down you will admit that your loved one needs a team and not just you. Settling in but very hard on both of us. Hope you can admit to yourself when its time and feeling sorry for anyone in your position. Its the saddest thing ever. Love to you all xxxxx


Had to do the same thing with P last October and it still hurts today, even though, like you, I knew it was the only thing to do. I am not a quitter and to admit I couldn`t continue was so hard.

P is well cared for but it`s not home. Enjoy your quality time without all the stress of the physical caring role and try not to feel guilty.


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A very brave decision, not easily made, but I am sure, in the long run, it will be the best for both of you. X

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Hi Peter2, I'm sorry your husband has left you but as you say, he has lost the battle but he is now at peace and free from this horrible condition. I hope you are finding there is life after PSP and remembering more of the good times before PSP.

Good to hear from you.



hi nannab

i agree with what u ha ve said

;;lol jill



So sorry for your loss. 5 Years is a long time you are a very loving strong person.


Thank you for your post and that you are intending to help support others who are, or will be facing the same horrible decision when they are no longer able to cope. We are nowhere near that point but it is something that really concerns me, when I feel I can no longer care for Ben at home. Fills me with dread but hearing your story gives me hope. Thank you again.

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So sorry to hear of your loss. Take care. Rx


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