New here - my father has PSP

Hello, I’ve just joined this board. I don’t expect easy answers, but just wanted somewhere where people know what it’s like.

My father has PSP & my mother is his carer (with assistance a couple of times per day). He’s currently in hospital recovering from pneumonia, had a nasal feeding tube fitted a couple of days but pulled it out today. Chokes when he eats. The hospital recommend a PEG, and don’t think he’ll be well/mobile enough to get out of bed again.

He finds it very hard to speak, but he can still understand, so the fitting of a tube is his decision.

I live a couple of hours away, so visit for a weekend when I can, but otherwise keep in touch by phone. I feel helpless not being there, but there really isn’t much I could do in any case.

Thanks for letting me vent a little.

18 Replies

oldestnewest
  • As long as he knows your calling and talking with your Mother that's a good thing and your Mom has someone to talk to. When you talk to both of them just talking about of course how your Dad and Mom are doing and your every day life. So that, they know what is going on with you.

    Pneumonia is a hard thing to get rid of I had it and I was in the hospital for eight days then was home for seven weeks.

    Just hang in there everyone knows it's hard for you to be there every day you do have your responsibility.

  • Thanks for replying. I think the infection is cleared, but he’s still coughing and seems a bit up and down. We’re going up to visit later this week.

  • Welcome to the site. Pneumonia can be hard to shake when you are otherwise healthy. I am sure your parents appreciate the calls and visits when you can!

    Ron

  • Like most people who have a family member with PSP, I just wish I could make it better!

  • Welcome to the site my husband has PSP, horrible illness. I am sure your mum knows that you are just at the end of the phone, if she needs you, at least you visit when you can. Yvonne xxx

  • There are never easy answers but there is advice and support to help guide you through PSP which is priceless. You'll help your Dad loads just by joining the forum and reading posts, not everything will apply to you but it prepares you for what's to come and how to deal with it.

  • Thank you. His PSP is already very advanced. I don’t know how much more there is to come.

  • So is my mum's, we've gone from eating one weekend to having a Peg fitted. The rate of progression has just been shocking. We're all in the same boat, not knowing when exactly the next change will take place but we know it will.

  • Before he went into hospital ten days ago with a chest infection that turned out to be pneumonia, he spent his days sitting in a chair, and ate normal food, although my mother had to feed him. Now they want to fit a PEG and say he won’t get out of bed again. It’s been that way before — he has an infection or something, and there’s a step change in his condition.

    Last year it was a urinary tract infection. Before it, my mother could get him from wheelchair to car & they could go to a pub for lunch a couple of times a week. Afterwards she couldn’t manage it & he wasn’t up to eating out in any case.

  • All we can do is hang in there and be there for them, support them and love them. All the best.

  • Sounds as though we're at the same stage. My dad is in respite care for two weeks, and he's gone downhill so quickly in one week. He was talking and eating and now he can't talk and is choking on everything, can't breathe and is now having a nebuliser. He looks awful. Thinking PEG tube isn't far away. The change has been so rapid and shocking. It's so sad. I know how you must be feeling!

  • It helps just to know you are not alone. Its a bleak prospect and you can only do your best to support your parents.

    They will appreciate your caring.

    love from Jean x

  • Hello,

    I'm so sorry that your Dad has PSP.

    I'm sure your Dad and Mum know that you're doing what you can to support them.

    My brother has PSP - diagnosed a month ago. I live a couple of hours away and so it's my sister and her husband who provide the day to day support. Even though I visit as often and stay for as long as I can, call him twice a day and try to support my sister supporting him, I recognise those feelings of helplessness - and in my case guilt - that I'm not doing, can't do more.

    But as others have said - your visits and calls will be a great support to them and giving your mum someone to talk to invaluable.

    Here - as others have also said - you'll find advice and guidance and hopefully (as I have) some comfort from being able to talk to people who understand.

    Erica x

  • I’m sorry to hear about your brother. It’s such a horrible illness.

  • Thank you.

  • Venting is so good for you. Please stay in tough 🙏💛

  • So sorry to hear about your dad having PSP. My husband was diagnosed last year and unfortunately had deteriorated quite rapidly since Christmas. He can eat food if I cut it up small and feed him but recently has been coughing and choking while he is eating. This is a horrible cruel disease and so hard to live with. He sounds very similar to my husband in that he understands everything but finds it hard to communicate. Hope you find this site helpful. Take care

  • It’s a dreadful disease. Try to take care of yourself, and arrange a little time off if you possibly can, even if it’s just the odd hour from time to time.

You may also like...