What do you say?

Hi all

What do you say when the Psp sufferer keeps saying everything's getting worse? And they are totally totally fed up!

They keep saying they wish they were dead!

It's very difficult in how you respond especially when your not sure if they understand the full meaning of psp!

Once again I'm starting to lose the plot and don't know where to turn except to all of you wonderful people


6 Replies

  • I've also had comments from Ben to the same effect. I know he hasn't read up on the implications of PSP as I think he would rather not know but he is finding the loss of of independence and the limitations that this awful condition has had on his once very busy life. My heart breaks for him and our life together. Not what we expected in our retirement. All we can do is soldier on and try to deal with things that are thrown at us as best we can. Xx

  • Hey Satt, mum has times like that too .. She's been much better since i moved in to live with her but also getting appropriate pain meds and acupuncture have helped. Also trying to stay positive, I hate to feel I'm avoiding subjects of deterioration but I don't know what to day if I'm honest. So I try to make a joke and give her food she enjoys to cheer her up. She also has half a sertraline anti depressant daily and an amitryptyline which helps with nerve pain and mood... Xx

  • My husband is always saying things like "Won't be long now" and "I'd be better off dead". It's so hard trying to find an answer, he too won't read up about the progression of PSP, he'll start to read the information but then closes the book quickly so I'm sure he's still in denial!

    Yesterday he said to one of his carers " One day when you arrive I'll be back to normal". I don't know which is worse, being positive or giving in, I try to respond as positively as I can but it's heartbreaking to witness his confusion, how I wish I could take all this away from him but I can't!

    The only thing we can do is try to make life as normal as possible however hard that may be, sorry I haven't been able to answer your question more positively, keep doing what you're doing in the best way you can....

    Thinking of you and sending you love and hugs....Pat xx

  • Hi Satt, sorry can't help you, except to say, we are all here for you! I don't think there is anywhere else to turn to, bar the people who know and live with this ############## disease! The professionals.....................? Now you really are talking about people who don't understand the full meaning of PSP!

    Sending you huge hug!!!

    Lots of love


  • Today we took a drive over to W's brother and his wife. When W was asked how he was doing he said not too bad, but at times I just wonder how long M (me) will have me around. That's the first time I heard him express his feelings and I felt awful that he was worrying about me instead of himself. To keep the tears back I joked that he would have me around for a long time yet. This doesn't help you Satt but just keep doing your best that's all we can do. Big hug xx

  • Well dr's aren't great but they may be able to give your mate antidepressants. Not really abig fan but it might help


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