Care Home

[kay1]

Husband has arrived at nursing care home, he was upset and disoriantated, one glimmer of hope i felt was when i was told that members of the staff were attending a PSP conference given by Samantha Pavey from the PSP society. For once i felt i did not have to explain all the varying symptoms of my husband to each person that he came in contact with. Please let him settle and be comfortable in his new surroundings...........................

[ray-wiffen-1958]

hi kay,

sorry your husband has had to go in too care home

all i can say is if samantha pavey has talked to them

about dealing with PSP/CBD then your in the right place

shes brillient at what she does she has helped me ever

since ive been ill with cbd and i have only praise for her

good luck,

ray

[kay1]

you just can't imagine the relief when i found out about the conference, i was disappointed that she had left before i had chance to meet her. Second visit to husband and he seemed a little more settled, but he knows he is not at home. Ray, if anyone deserves to beat the CBD you do, your attitude towards it is an example to us all.

[jillannf6]

hi kay

i am sorry your husband has had 2 go into nursing care = but you will be able to visit him adn spend quality time with him

Ray too you r really great ,,,

all the best and good luck

jill xx

[PSPA_DebbieB Partner PSPA]

Kay, thank you for sharing about your husband. I and glad he seems a bit more settled and I am sure he will receive all the support and care he needs. If you need to speak to Samantha, just give her a call and she will be more than happy to answer any questions you might have. Best wishes, Debbie

[Kathy]

Hi Kay,

Hope Hubby soon settles into his new routine. I also want to sing Samantha's praises!! I have spoken to her on the phone several times, she is a calming, reassuring voice of reason in the mad, bad world of PSP! Do give her a call

I think it is very encouraging that the staff want to find out more about PSP - that bodes well!

Take care of yourself and please keep us informed how he gets on

Love Kathy xx

[Fiona_McL]

Hi Kay,

after my mum went into a nursing home we could see her visibly relax- she was so much safer there and was getting much better care than we could organise at home. She kept talking about moving out and we arranged for her to spend some time in her own house each week, with a carer, just so she didn't feel totally cut off, but there was no doubt that the nursing home was the best place.

It's great that Samantha has already been with the staff; that can give you some confidence

Fiona

[kay1]

Fiona, this is Franks second night, when i saw him today , in the clearest speech he declared he is coming home tomorrow. He is unable to sit up, and seems to be totally bedridden, seems a lovely idea making the move gradually but just not feasible in our case. Just hoping and praying to will get accustomed to the new surroundings. He has no concept of how bad he is.

x

[MJ-Mark]

Hi Kay,

I read this last post here and was struck by the last sentence. Do you think that all psp patients have no concept of how sick they are? I ask my Dad all the time if he is aware the we can't understand him most of the time. He was always so insanely intelligent, yet I don't think he has any idea of just how sick he is. Not sure if it is because he doesn't understand or he doesn't want to understand?

MJ

[kay1]

Hi Mark, we have never discussed PSP with Frank, he just thinks he has lost the use of his legs he does know his speech isn't clear but does not know why. I tell him it is just part of the illness he has, what chance has he got of understanding PSP when "the man in the street" hasn't a clue! Age isn't on his side either, he is 89, but I cannot believe the improvement in him since he has been in care even I sometimes wonder if we have the right diagnosis trouble is with PSP symptoms are not all the same and they can vary in depth to the individual. I am sorry about your dad and as with all of us, we just have to be there for them x

x