Phew, a tough evening. Some days are ok, some days have a laugh, others a feeling of normality, this evening was hard -Dad was obviously upset about things, whats happening his body, his speech, his thought processes. Hes gone from being a young 77yr old to an old 79 yr old very very quickly (sorry I know thats older than a lot here) I gently tried to talk about it, or asked him if he'd like to talk about it to me/Mum or go to someone, but he says no. He is of the older generation where they didnt really speak of their emtions, but I feel sad to think of him bottling it up so not as to upset us. He simply said "sure what can i do...there's nothing I can do" and let out a sigh. I asked him though whether he still likes getting out and about with us and he said yes and he know to keep trying as much as he can. I asked him was there anything we could do to help and he mumbled we've already done a lot.
Sorry a bit long winded but just wondering did any of your loved ones open up at all?....
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catherine_h
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It's very sad, isn't it, when communication is this hard. My guy had a couple of good appointments with a counselor, which he liked, I think, but he didn't really spill much, and he was pretty good about expressing his feelings. I do think there is sometimes, as you suggest, a generational element to it. My mother, who is a relatively healthy and communicative 90-year-old, will not speak of anything substantive or sad. When I try, she is inclined to scoff. Still, we can be happily companionable and we say "I love you." quite a lot. I'd like to know more about how she feels, but that is not her way, and I have to respect that.
Chris could talk about his feelings. He dealt with PSP by feeling he could " beat it ". When it became clear to him that he couldn't he seemed to accept it patiently. He had never been a patient man - it was an effect of PSP which was beneficial !
There were many times we had a little cry together but we both held the despair at bay because we HAD to cope ! Then, of course, He couldn't talk anyway.
Ask your dad if there is something on his bucket list that might be achievable! Even if it is only to go to a restaurant or cinema, this is achievable in a wheelchair. Yes, it's pretty tough on the organizer, but will show your dad how things can be done. Doing anything rather than being stuck in 1 place will make a difference to his self confidence and esteem!
The other thing may be embarrassment! Meeting people he knows who have not seen him for a while. My father had a stroke and would only let a few friends visit him.
My husband stuck his head in the sand! He learned to ignore the bad things in life early on as a small child. He lost his mother, brother adopted so lost too, father sick and stranger at end of war. Solution chosen for my love was send to boarding school at age 5. Other kids there must have had similar experience so not good. Hence the ostrich routine.
He would not sit and talk about his side of CBD. I had to tease it out, asking why he stopped emptying the dishwasher, why he stopped walking halfway down the hall. Answers were enlightening! His thought processes were not working well, memory short, etc.
The only time I saw that scared look on his face was after pneumonia. He had a lucid moment and I think realized where all this was going. Towards the end he seemed to accept things and was more concerned for my wellbeing. Think morphine took over at the end which may have been merciful.
Your dad is not at that place yet! Make sure he has something to look forward to!
I remember last year my dad was feeling down for a good few weeks. The manager at the care home told us that they had called a doctor out to have a chat with my dad as he was worried about dying and wanted to know what were the next steps of the disease.
When the manager explained all this to me in front of my dad that was very hard to hear especially. They had a chat with him and a nun goes in to chat too. They increased my dads depression tablets to help his moods.
I guess we are all different but so good to give your dad the opportunity to ask questions and share worries. My hubby a retired dr had researched PSP early on so sadly ‘knows’ what is coming -we have always spoken openly about his end of life wishes but this is the medic in him. I think seeing the Hospice counsellor periodically helps him enormously but this is not for everyone. Maybe he would open up to a counsellor, priest or old friend and maybe is is just the ‘strong silent type’ and prefers not too.
My Liz at 60 does not speak of it either. To some degree she knows it is pointless ans I think also she knows her illness is a pain I have to carry too and she does not want to burden me further.
Every once in a while I speak to her about it and say some of the things she might have said to me. Such as how bloody awful it is to lie there slowly deteriorating and feeling so helpless. How she does not want to burden me, but that I know how hard it must be to suffer this.
I can tell from the small smile and the nod that she is grateful I've recognised her pain told her of mine too. Then we hug.
I don't know if that would work for you or your Dad though.
They don't really talk about it. David and I never had a single chat about PSP other than to say what a bugger it was. I did the research and chatted to Doctors to find out the general order of things, and to find out how it may develop, but I never explained any of what might happen to David, and he never asked. I took the view, if he isn't asking, why should I frighten him with it all.
I did have a long chat with him to explain that as he knew PSP was a one way ticket, that he really needed to sort out his will so things went where he wanted them to (Although we were partners, David was still married to his wife, a edit separated for over 30 years, and I knew he would want her to have a share as they were still good friends). I also explained that he really needed to do Power of Attorney so that I could look after his affairs properly. He made a big effort to get all of this in place, and although I never needed to use the PoA,. It was a godsend to have it there, and of course the will made everything very easy after he had gone. It also gave me some comfort that the right decisions would be made.
I don't know why David didn't investigate or ask more questions as he used to really look into anything he might do or buy, maybe he just decided there was no point and that it would do what it did. (I don't think he gave up though)
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hello I am the wife of a newly diagnosed husband joining your lovely supportive group.
He asked the question 
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