How to talk and treat them.

My Mum has PSP I belong to the association, I read up on research and follow this horrid disease. But when it come to how do I talk to and treat members around her seem to stick their head in the sand like denial. I always ask how she and she always say she's ok.... but she has never spoken of it like she doesn't want to know the outcome. I don't want to talk about what's going to happen in fear of upsetting her. I don't want to treat her like she's an old and dying lady. So I just carry on as normal (NOT in denial though) and in a way I make jokes with her with things that have happened due to PSP. It breaks my heart knowing what is too come (let alone Mum who is the sufferer!) and I don't want to be someone to remind her everyday that she has PSP...but should she talk? 3yrs on Mum hasn't really spoken about it...... "PSP sufferers how do you want to be treated? do you want to talk about it? do you want us to treat you old and dying? or live day to day?" I know everyone is different but can you let me in on how you feel and how you want to be I can maybe approach my mum more to her needs she may be fine how things are? I don't know or avoiding it. Sadly I can only do this through skype or email as I am across the miles.......I have joined mum to the PSP association and I know there is lots of help out there.....its the how to approach her. It like when someone dies people tend to avoid you but is this the right thing to do?

Thank you in advance


14 Replies

  • Hi there - I will leave this open to answers from PSP sufferers, but as a carer, I think it's a mixture - one day we talk about 'issues', the next we don't at all and concentrate on the good stuff. Or in the same conversation, when you're skyping, talk about both, or just about good things... Easy for me to say because I live with my dad right now, so everything is mixed in and I am quite a direct person.

    When I arrived here a year ago, not much was talked about, just reactions on events, like a fall, what medication... it was all a bit much for my mum to deal with. She didn't really want to read up on it either. I called a meeting with my parents and my brother to talk about EVERYTHING, from care homes, doctors to the coffee table after the funeral. Two hours of it, a lot was said, and we were all exhausted! But it had to be done. They both still have to fill in the living will forms and then we have some kind of 'manual' (silly word) for the future, whatever it brings. I downloaded the brochure for Primary Caregivers from the PSP and made copies for my parents and their caregivers, it has a lot of simple facts in it. Maybe that can be a starting point of a conversation? This is a link where you can download the brochure That said, we will all die one day but we don't want to be reminded of it every day...

    Good luck - it's not easy.


  • Thank you Lieve I will down load the link OX

  • Hi troubles we have always had an open aproach to life and death. So it is easier for us. We don't make a big thing over him having "PSP" it is just part and parcel of our life. He likes it because all our friends treat him the same as before diognoses. After asking him your question he said treat me the same as always. He knows the basics like he will probably end up confined to bed with lack of communication etc but as he said that day is not here yet.

    Post diognoses we did go through a bad patch where he wouldn't eat much was frightened of choking. Stopped walking fightened of falling. But after having a screaming match and me saying ok so your going to die but the way you are going it will be next week instead of a few years. As he said that woke him up and now he lives as normal as he can.

    Brian said don't make a big thing about anything and we will be happy.


  • Thank you so much Jzygirl and Brian. I was hoping on an answer like yours. You sound a very loving couple. Ox

  • hi

    what might help is to contact your local hospice, many of them now do'nt just offer services to cancer pts. they are professional and are able to discuss decision making with the pt in a way that is positive and reassuring. as a mum i know that your mum is just not wanting you to be upset.

    i have found with my own child who is her thirties we do'nt keep talking about the disease but as things happen she is told but always with a positive slant.



  • Thank you Julie I know Mum probably wouldn't want me to worry n being so far away too, just I wouldn't my own children. But Mum hasn't even talked to her sisters n like me we don't know how she feels. My father is in denial n has no patients and gets cross at her for trying to do stuff and really feel as much as he loves her really doesn't help and shuts it out and certainly wouldn't ask for help and have strangers in his home as he would call them. He thinks Mum is Dependant on him now! When I Skype I never get the chance to talk to my mum as he talks for her and when she does try to talk, take her time he shuts her down. The miles certainly don't help. Thank for your reply ox

  • Hi Trouble, I agree with Julie, get in touch with the local Hospice. They normally run a 12 week Day Course, which I am fighting like mad to get S back for his 3rd session. They run groups for Carrers that may help your father. Also the support they give you, well I can't fault it. During The Day Course, they will try and talk to your Mum about her wishes and try to get her to make some sort of living will. Once in their hands, they act as if they will be there, through thick and thin, which I am finding very comforting. Nothing is too much trouble, I am treated like the most important person in S's life. Not like the NHS, where I had to fight, for them even to talk to me about an appointment he had!!!!

    As for how you treat your Mum, as near as normal as is possible! If you are constantly teasing her, carry on, OK, so the jokes are different, that doesn't matter. We went away recently, in a big family group. S had no skin on his face, due to a fall. The ribbing he got, well, it was relentless, but he loved every minute, he was being treated totally as normal!!! Long may that last.

    Lots of love


  • Thank u Heady.... Hospice seems to be the way to go. This will have to be something I arrange as my father would not this....he already says why my mother wants to go to these PSP meeting he doesn't know! There is no cure!.... And seem to forget its not all about him. When my mum has no choice but to rely on Dad taking her there. I will look up the local Hospice and try talk to them time difference between country may be a problem... But once I have I will have to talk my Dad around. Thank u for your advice ox

  • I think, what you have to get across to your Dad, that Hospices are for the living!!! Not for those about to die. Yes, of course it's life limiting illnesses, but that is totally different. I can't stress how much help they have been., since getting involved. Wish it had happened a long time ago! My life and stress levels would be a lot better!

    Lots of love


  • Hi Troubles, my partner G doesn't want to know anything about psp, so I have appointments with the GP especially to talk about G and the progression of PSP, consultants write to me with their view as G gets very upset if anything about it is discussed in front of her, which tends to put her back a few paces.

    As for talking to her, I know I am much more patient than I used to be, occasionally she says "I'm not well am I?" My reply is that she is having s bit of a rough time at the moment. She knows she can't walk unaided, and outside now uses a wheelchair, which unfortunately we don't do enough as I have cervical spine disease and am in lots of pain before I get the wheelchair involved! But on the whole PSP is not mentioned so I talk to her as normal.

    We both blame the PSP when things get hard, as if it were a Person, G thinks this is funny and can laugh herself out of any guilt she's feeling for having not making it to the toilet in time. G is now on a soft diet and things need chopping up for her but I don't make a deal out of this, I've recently started putting a spoon on her tray alongside a knife and fork, so she doesn't have to struggle, again this hasn't been discussed, I've just done it.

    I would rather she wanted to know as that would take some stress away, but feel very lucky that she goes to the hospice once a week, that the hospice has a counsellor that I can talk to to get things off my chest, and the hospice carers day where I meet people who are all going through the same situation although with their loved ones having different diseases.

    Hope this helps

  • Thank u it does help. Just need to work on my father to except help for my Mum ox

  • I'm considerably younger than G, & it's taken me a long time to accept help, I felt it was my responsibility for the care, but in January the GP told me I was clinically depressed & not far off a total breakdown. That shocked me into accepting the help & realising that G going to day centre wasn't a failure, but good for both of us.

    The hospice worked on me to go to the carers day, eventually in May I made the leap & went, and how I wish I went earlier!!

    Better late than ever, so do please push your father, it really will benefit him.

  • My husband has PSP, he can't c much anymore, either peripherally or focus, his balance has gone, I wash and dress him, he can walk with my help, he chokes most days so a lot of our food is soft or smoothies, his voice is very low so not much conversation but we do laugh at things that happen daily, and the doctor has asked him if he wants to b resuscitated and he said no. I dont encourage maudlin thoughts or words, rightly or wrongly, but I think he knows he's not going to get better. There's no one way to deal with this horridness, everyone is different so just do what's seems right for you and your mum. God bless.

  • Thank you Duffer. Everyone is so caring ox

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