PSP Association

Settling in

It is four weeks now since Frank arrived at care home, he left hospital, as far as i was concerned, never to leave his bed again. The care home have since managed to get him (assisted) into a wheel chair which is so good. I cannot believe how much progress he has made in this past four weeks, an occasional relapse when PSP becomes the master. He is well looked after, plenty of company and he sees more of the family now than ever before. I do feel positive about the decision that had to be made, but it does't ease my conscience when I leave after my daily visit.

8 Replies

Hello Kay

You shouldn't feel guilty at leaving Frank. It is not all about the patient. This terrible illness is about two people. The patient AND the carer. Now he is in the care home, he is being looked after by responsible and caring people who are more than qualified to deal with him. You are still providing him with emotional support and I'm sure he understands and appreciates that. Just for a moment, try and see it from his point of view. I feel if the roles were reversed you wouldn't want him to beat himself up about it. Don't have a conscience. You have done as much as you can now by ensuring he is in the best possible place.

Take care...................Love SuzieQ xx


hi kay,

hope your keeping well im glad to here frank has settled in

well and by the sound of things is getting on realy well which is great

news, its great that you can take a break as well you deserve it and

frank probly agree with that you shouldnt feel guilty about it you have

looked after frank since hes been ill and from what i read in your blogs

you have done a bloody good job of it you both take care,

ray xx


Hi Kay

It is really hard leaving them at the end of the day and I say end of the day as I can see you are still there with him every day.

I too went to see dad every day and it was always hard leaving him, but I knew if there was anything that went wrong or the staff were unsure they would ring me and I always knew, come rain or shine, I'd be going back there the next day. Dad knew that as well and I am sure Frank does.

You maybe not be there with him physically at times but you are always there for him, I have no doubt he is always there in your heart and thoughts. Don't be too hard on yourself.

Take care

Lesley x


Thank you all for such positive comments. I am almost afraid to say this, but the PSP symptoms seem to be on the decline. His speech is so much better, he is feeding himself and drinking from a proper cup. He reads the paper and chats quite happily, my daughter has said she see him smile more now. We seem to be left with (at the moment) very limited movement in his legs and bladder troubles, surgery on 23rd August, biopsy and pubic catheter put in place. I am hoping against hope that this will not set him back. He is 89 and a positive superman in my eyes.


A care facility is a loving step in helping him. When you do not have to do everything yourself you can focus on the person.


I really admire you for making such a hard decision because I even felt guilty leaving my husband for 6 hours daycare. But you obviously made the right decision; Frank has improved in so many ways and you are feeling so positive as well. And keep reminding yourself that you made the decision because you love him so much, not for any other reason.

Take care



Hi Kay - you're doing great and the darndest thing is you're beating yourself up over it. Just a thought, my Mom would not transition into a chair with me, I was worried about her, she was worried if her legs gave out she could hurt me. PSP is a team effort so all can be as healthy as possible. If I got rest, and she wasn't worried about the toll on her "baby", we all did better. Yes we finally transitioned her into a team home with lots of help. She showed improvement. I could visit and sing to her, with her, remember fond things while, the team members took care of the things she thought were a burden on me. I kidded her about out maneuvering me...she just smiled!...Best of luck...K


All such lovely messages, really appreciate the contact with fellow carers, thank you. x


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