jhon

[laila123]

my jhon canrt have the peg he was sent home on the 6 jan on the path way for dying i pulled him through now he hardly speaks i miss that with him hope you are all ok as this sight keeps me going i dont feel so alone

[easterncedar]

You are definitely not alone, Laila. I hope you are comforted knowing how much you are doing for your loved one. This can be such a long and painful goodbye, but there are worse things that people suffer, and being able to care for someone you love is no small grace. Hang on. I'm sending you a hug. Please stay in touch. Love and peace, Easterncedar

[jillannf6 in reply to easterncedar]

.hi laila

i am so sorry that your husband ha sheen sent home - 2 die?

it is a strange world we are in now i think

i do not believe in an afterlifebut believe that wherever love is Go d is too

so our spirit `i believe lives on after us in this world

Is your husband fully aware of his situation or lis he in denial`/

i don't want to quiz you too much bt i hav e PSP and know what it is like - i get so frustrated that i cannot type properly any more - i cannot write anything down any way - but it si the least of my worreis about this PSP . i h ave the slow sort i am pretty sure as i am still here upright most of the time apart form when i am plat on mhy back or face having fallen over too many times l;ike yesterday was a bad day for falling an dthign scan only stay the same

enough of this -ve writing but i do feel 4 you and your husband and family\

i was 64 when dxd and am now 69 (going on 21)

and i hope to get to my early 70s now!

lol jill

and hug sand xx to you and urs

[Hidden]

I know something of how you feel, Laila. Gradually, over a period of about 18 months my wife, Roisin, lost the ability to eat, speak or write. I now think I began to grieve for the loss of her during that period. The amazing thing was that she remained so brave and so involved, even though communication was a grunt, a wave or by thumb. Even now, after six months without her physical presence, I selfishly long for a return to those days when I was able to look after her. I am sure Roisin doesn't, it must have been hell for her.

Bon courage (as they say in France where I live),

Christopher

[laila123 in reply to Hidden]

thanck so much for those kind words yes your right im grieving noe it is sad to see him traped in this body but i would rather he was here not at all at least i can cuddle him

[Pippalina]

Laila, have as many cuddles as you can, this is one of the many things I miss since Eddie was releases from this evil disease.Try and keep strong, thinking of you.x

[laila123 in reply to Pippalina]

your right always kiss cuddle him hope you are ok

[nannygoon]

Dear John, I was with my Sister Rose(81) on the 4th of April, she didn't have a peg either but I think she just gave up eating being on the purried diet. Sit with him and keep talking to him say everything you need to say as you will feel better when he has gone that you did .I willpray for you both and hope he has a peacefull end. God bless.

[nannygoon]

Sorry Laila I called you jhon! Stay strong and keep posting on this site it is a great comfort.

[laila123]

hi everyone i need your help for the last 2 years i have to fight for pads social workers going of sick grting an extension in the bathroom and the last steaw when i was told today that jhon has only 4 week left going to the hocpice as they have a waiting list dont get me wrong its a good place it seem that psp is not as important i myself have started to rock boats for it to be put in the cralicalem so people can be aware of this terrible ilnees if you could take it upon yourself to send me a letter highlight what its like to live with summone with this illness as i wont to take it tom my mp and get him to adress this in parlimen t my jhon going down hill i only have a shell there but i still wisper to him and chat in hope he still here me i have read all of your stories and shed a tear on the way hope you can help my adress is 34 meadoside ave bolton bl22ss once again thancks