PSP Association

An odd comfort

An odd comfort

This site has been strangely comforting for me - I say that because its awful to think that others have gone through what we did with dad but also makes you feel less alone. Because of how rare it is, I had no comparissons - we never knew when it would suddenly get worse, but that it did. And it was very very unfair - very cruel. But there are alot of people on here showing real spirit and fight just as dad did - he still used to make us laugh, although his humour did seem to become more child-like. I take my hat off to all of you. Our fight is sadly over now as dad passed away in January, but I'll never forget how he dealt with it in such a dignified and amazing way - just like everybody on here.

The day dad died I was playing hockey and my brother and mum were visiting him in hospital - he had pulled his peg tube out again. I rang my brother and he put the phone to dads ear - I told him about our match and he made the usual odd noises - as I was about to go, obviously unaware that it would be the last time I would speak to him, I told him I loved him and I could understand that he said it back - its always made me feel better to know the last thing we both said was I love you - always will dad xxx

9 Replies

Dear Louise,

Your post has made me realise how important it is that we tell people we love them. My parents were never ones for showy displays of affection although we always knew we were loved, if you know what I mean???

I often say "I love you" to Mum now, it feels good to say it and I'm sure when she's no longer here it will comfort me to know that I'd said it xxxx


Hi Kathy - yep I know exactly what you mean - I never used to say it all the time until dad got ill - and he would just give us this big grin and say it back - it was lovely - infact go give your mum a big hug now - from you and me xxx


:-) will do! xxx


Dear louise,

i hope my children will be as good to me when my time

is up, you are a creadit to your family, sadly by the time

i was told i had cbd i had lost both my parents at least

they didnt have to see me go through life like this,

take care ray


If you are the kind of dad my dad was to us they will do anything they can - its a credit to you how you are dealing with it - thats what made me want to help dad - because he just got on with it - as you are - they will be there for you because you are their dad :) x


hi louise

thanks for the reply yes my kids will do anything

for me and they seem to be takeing everything

in there stride and just getting on with there life

and helping me with mine xx


we always say i love you but now even more even though mum cant talk now and god i miss her voice i know shes saying it back. Its just so heart breaking to watch i'm crying all the time even now keys hard to see. But i'm sure you all know how i'm feeling.


I missed my dads voice - he was such a chatterbox and by the end could hardly speak - more of a grunt - but he always get out I love you :)

It is heartbreaking but just make sure you are always there and always say it. I miss my dad so much - stay strong xxx


Hi Lorra

You are not alone - I am thinking of you and know exactly how you feel. My hubby is still able to talk at the moment, although he has just had a very rough time with yet another chest infection and tummy upset. I get so tearful at times and it's only when he is asleep I am able to give way to my sorrow. Try and stay positive and even if your mom is not able to speak the words "I love you" back to you, you must surely know she does. Take care and remember that those of us who post comments on here, are always here for you and understand exactly how you feel. You take care now and try and keep your chin up. xx


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