Daddy has been bed bound for several months now, and very weak, unable to feed himself, doubly incontinent, etc. His psp includes the slight dementia I've read doesn't happen with all psp sufferers. I asked his wife and she said he didn't ever show any emotion about the diagnosis. I remember when he told me that if the doctors were right, it was some horrible stuff (the psp) and he looked very worried. I've read a lot of sufferers are on antidepressants. Yesterday I asked him how he was doing and he looked me right in the eye and said "great"! He said it like he meant it. I left the room and cried, again for the 100 millionth time. I worry about his feelings about dying and about how much psp has destroyed him, little by little. I have no idea what to say to him and I wouldn't ever want to make him cry even to bring his whatever kind of feelings to the surface, not even if it's the bittersweet tears of verbalizing the lifelong love he and I have shared. I don't want to make him cry. So what exactly is my question I think it got lost within. Thanks for listening and for any comments. Merry Christmas to those of us who believe!!!!! I'm grateful to have Daddy here again this year. If he wants to be here then I want him here too.
He's never cried, is this ok?: Daddy has... - PSP Association
He's never cried, is this ok?
counselling time
My mum has dementia as well, this has affected her cognitive ability. Her understanding of what the illness is is greatly reduced. As a family we are obviously distraught because we see her deteriorating, but the lack of cognitive ability is seen as a blessing. I don't want her to know what is happening to her, I don't want her to have to witness her body slowly give way and be totally dependant. It is bad enough for family who observe this. Maybe it's a blessing that he doesn't quite get what is happening to him.
S has never blinked an eye about this evil illness. The apathy kicked in years ago. I wish he would give me a tiny bit.
Lots of love
Heady
My mum seems the same - it's s total mystery to me how accepting she seems to be. No grumbling - no tears.....not even a desire to talk about it. I'm not even sure that she feels in the least bit sorry for herself. Is that dementia? If so....Long may that part of this hideous disease continue! X
Same with George he does not want to talk about it, he hasn't got dementia, just does not want to talk about it, maybe it is there way of ignoring it? X
Is it because no professionals never tell you how bad things are going to get? That the patient doesn't fully understand the illness
Xx
It must be that the emotional part of the brain shuts off which is probably a good thing in a way. My husband has never discussed his condition other than asking who would look after him. Even before diagnosis when eg. his driving became dangerous, he never disclosed that he was suffering from double vision ! If only I had known, but that was his impossibly awkward phase. It's surreal to have lived with an almost unknown person for so many years, but I guess that's what we do, don't we.
I have the opposite problem. My husband keeps crying. He tells me he loves me and the tears flow. Sometimes they flow and I don't know what he is thinking. I am so sad for him. He knows he is dying and I think he is really scared. He has no idea how bad PSP can become however and I just pray he doesn't go through that. He is fading away before my eyes however. His poor hands are all shrivelled up. His arms are losing their strength. He gets no exercise at all. Nobody even talks to him. I wish he would die when I am with him but there is no guarantee that will happen. Getting to him will be such a problem. Even getting him into a Nursing Home is a problem!
Marie x
Marie my heart breaks for you and your dear husband. You'll both be in my prayers. Words just don't do justice to explain how hard psp can be, in many ways.
When I ask my mother in law whats wrong she tells me nothing and everything. I don't want to sound insensitive but we don't talk about the disease really. She realizes what it is doing to an extent but I don't think she realizes what it will do.
Seems your dad wants to face this demon alone, by alone I dont mean by himself what I mean is he does not want to burden you all with it. What a man!!!!! Maybe it is the dimentia? There are times I pray everyone with these horrendous diseases get some form of it, if only to spare them the pain and suffering they will eventually go through. I always say that I can handle them not knowing us, I cannot however handle the pain I see in their eyes.
Here we can just talk about life loose ourselves in our thoughts and some how, everyone gets it...
Keep strong
My husband cries at times, especially when he tells me he loves me. He worries about me and his children and grand children without him around to look after them. He was always like a big sheep dog rounding up the family. Never really believes we can manage without him. He knows he is dying and is expecting it any time. When I ask how he is he always says " rough ".
But he doesn't want to talk about any of it. He is very stoical and has never been self-pitying or angry about it.
love, Jean x
Reading Marie's post and Jean's, about their husbands who DO cry, gave me teary eyes and convinced me that, as everyone has written, a little dementia is far better than a lot of knowing. Also, as pzagy stated, yes my dad would want to be strong for his family and I believe at some point during his psp decline, that courage has been a factor. Sometimes I feel like I'm crying for me AND him, for how he'd feel if he was pre-psp. Mama's passing was worse, aggressive untreatable cancer, at 34 years of age, she refused pain meds so she could remain cognizant to be with her family for every moment possible, she had to say goodbye to her husband (my daddy,) me her 16 year old daughter, a 14 year old son, a 7 year old daughter, her mom, her dad, her 3 brothers and many others. And she KNEW. Those of us who remained living, were so lost without her that it took a few years of maturation for me to stop and think about how impossibly hard that was for her to say goodbye to all of us at once when she was still so young. I mean, Daddy knows but his mind seems to not let him think much about it, if at all, from what it seems anyway. Thank you all for sharing.
Gosh you have suffered. Loosing your dear Mother at such a young age must have made you into the caring person you are. I lost my Father a month after my 15th Birthday. My brother was 2 months off his 11th Birthday. At the time I thought I coped with it all really well. Not true of course. It really changed the course of my life. The same with my Brother. Sadly we have both ended up as Carers to our loved ones. My Brother never grieved for his wife. He escaped to live in Spain instead! However he is so unhappy at times and dreads going to see his daughter at Xmas. It makes him face it I suppose?
So the loss of a loved one never really leaves you. You might stop thinking of it every minute of every day but it is always there. I think if it happens when you are young it actually can make you into a more caring person.
As for PSP this is the worst thing I have come across. It so very cruel. Please talk to your Dad though. Talk about anything. It can be something on TV or anything you care to. He is probably missing you deep down. If he should cry just give him a cuddle and tell him you love him. He probably won't. That is your fear doubt it's his. I used to tell my husband not to cry, now I just give him a cuddle, tell him I love him and I always have. I usually ask him does he remember something we did in the past to distract him. He hasn't got Dementia but guess he will get it. He is forgetting where he is. Now when I visit he always tells me he wasn't expecting to see me. I think he forgets I have been there when I go. This is the most awful part because we have been together so long. He never asks about our Grandson who we looked after everyday until last year. He seldom mentions our son. When he talks about anyone it's our Granddaughter or our Daughter who has never really put herself out to do anything. It makes my son cry. What a cruel disease?
Marie x
Thank you Marie, that was so sweet and I needed it. I know you're right, I should talk more to Daddy than I do, it's just hard because he's not the same but I do try. I don't say I love you to him every day, don't want it to become rote but I did tell him tonight and he says it back to me. And your SON, your dear son... I have 2 siblings who say it's too hard for THEM to have to SEE our Dad "like this" so they stay away even though they both live close enough. I moved back home to help take care of Daddy. So, if Daddy was all concerned or impressed or whatever like that, about my siblings, yes, I'd be like your son. It would break my heart. And there's no real getting around that except, remind your dear son that this disease is corrupting his father's brain and his father's expressions of care for your daughter are coming from a diseased brain. In other words, it's the evil psp which is caring more for your daughter and not your son, NOT your husband/their father who is doing it, but the disease that's doing it. Thanks again Marie. Praying for you and yours.
Hope I didn't overstep the mark? It just seems to me that somewhere in their is your Dad. Everyone requires love and affection. You have that in abundance but what, just what, if the words you say get through? Even for a few seconds? He won't feel alone. I think we all want to be loved and to know it. We all want people to talk to us too.
My husband told me one day that nobody talks to him. I know what he means. People struggle to understand him so they tell him what is on the menu for lunch/dinner. He says what he wants and that's it! Every so often someone might ask how he is but not very often. So when I go I try to talk about the things that are happening! The news is hard as it is so depressing? We do have a few words about it every so often. If not he is disconnected in another area? Mainly it's family news. Or news about friends. Most of them have deserted us but there are a few who help me get to see him.
Hope you are well? The rest of your family too. It's so sad when some members of the family can't or won't give some time to be there. I suppose some people really can't cope? Nobody wants to see a loved one die especially in these circumstances. Maybe for some it's too much. I couldn't do it and clearly you can't so goodness knows what goes on with some people? I think they will always regret it however.
Marie x
I hope this helps a little.
To some degree PSP sufferers are protected in the later stages.
As the brain deteriorates the normal emotions can become flattened. As the hypothalamus is also affected.
There can be strong uncontrolled emotion, such as anger, but that is another process.
Generally PSP sufferers become inured or indifferent by increments.
I've expressed this poorly - please forgive me - it is a generalisation.
Yes, there are tears aplenty in the PSP world.
My heart and warm wishes go out to you.
Kevin
That fits with my observation. Chris has the deep feelings he has always had but not all the time. So he can cry and be moved but at other times is impassive and distant. He has never got angry and is very stoical and accepting of his symptoms. He has never got angry with me but sometimes seems unable to understand why I am upset or angry. Often lacks empathy. He was always an empathetic man.
Its the most frustrating thing.
Hope things are still good for you both ?
love, Jean x
Thanks Jean
Yes, its a little different for each one isn't it.
We are still good today... Liz is trying her best as am I... So another day of hugs and calm (ish). But good enough.
Love
Kevin
xx
Is this normal? Am I expecting too much?
Anybody else been told this 
SAM said “I want to go home”
