How to handle PSP sufferers inner frustration?

Hi all, just looking for any advice. Dad has recently been diagnosed with PSP. Mum is at home with him. We have found when conversations get a bit too complicated for him, or if he can't find d words to express himself he gets so frustrated. When it is at its worst you can see he looses ability to control himself and shouts out at mum (and me sometimes). Today was horrible and know it really upset mum but he got so frustrated and ended up shoving her. Mum was holding back the tears. This is not the dad I know he has always been so gentle. Know this is a feature of this horrible disease and I've tried to chat with mum about separating new behaviours from the man we Love, but in the moment it can only upset her. I'm so worried about her now, she's 77 and wondering what is best to do. I know we need to prevent "conversation overload" and keep things simple to avoid this situation. Dad is on 10mg of amitriptyline,and had seemed to b helping. Has anyone any advice? Broke my heart witnessing it earlier.....

12 Replies

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  • I would definitely let your dad's doctor know of these outbursts. It could be more then just frustration, these diseases can produce all sorts of odd things.

    Ron

  • Hi Catherine

    My brother has had psp for about 6 years now. He is 62 and lives alone in sheltered accommodation. My sister and I do his cleaning, shopping, washing etc . He has got to the stage where his is hard to understand. If your dad can write and you can read his writing get him to write things down. We have a child's abc board that says the letter out loud when touched. We find these are better ways to communicate than him getting frustrated. It must be very hard to be with the person 24/7. All the best

    Carole x

  • Thank Carole, will see how we go. So hard seeing them struggle xx

  • We use a Go-Talk. Find it online. It was a big help but now Charles in last stages and rarely used it. But it is wonderful.

    Cuttercat

  • It was the same for my mum. She had PSP and she would get very frustrated and angry. It is so hard to separate the disease from the person but it is the only way to move forward. Continue to do what you are doing, giving him extra time to speak, etc. Try to talk to him about how he feels. If you can get counselling, this would be particularly helpful for your mum.

    My heart goes out to you and your family i know exactly what you are going through. It's an incredibly tough road that you are on and I send you love and strength. X

  • Does anyone know of meetings or counsel in the southern US??

  • There are monthly meetings at Emory in Atlanta. Where do you live?

  • Medication should help. I would. Talk with his doctor

  • I live in the north shore about 3o miles fro New Orleans.

  • Yes. The angry outbursts are the worst....tell your mom it is just a part of this awful disease. At first it was hard to not take them personally and get angry myself at him. My fiance has PSP and he is just 51. He repeats curse words in groups of 3 when frustrated and calls me horrible names. Sometimes he puts his hand up to me and just presses it into me when he is angry. I try to diffuse by ignoring and changing the subject. I just hug and kiss him on the cheek and tell him i love him. He snaps out if it right away and says i love you too. He doesnt apologize because i feel he is not totally aware of what he does. It truly is a rotten disease. He can no longer do a single thing with his hands but can walk rather well although his necks is hunched over and fists are rigid.

  • Do let your Fathers doctors know what is going on. We went through horribly aggressive ( physical and verbal) not long after my husband was diagnosed. They still happen but I am better at spotting them coming and have learnt to manage them. At first it was devastating - how could my wonderful loving husband hit, pinch me and say such horrible things?? I still have to remind myself this is PSP not him. U guess like all of the other symptoms you learn to manage it. There are anti psychotic meds or tranquillisers if things get too bad. Sending love to your family

    Tippy

  • Hi the best advice I can give you is learn sign language or if you have to make up sign language as you go like when they want the remote or have to go to the bathroom just simple things that will help you understand what they are saying it does not get better get a whistle for when they can no longer yell to get your attention but can stil blow the whistle or a remote doorbell so they can push the button and you can put the other part in your pocket and hear it no matter what you are doing. I was just laying in bed with my Aunt Bev eating a popcycle with her and telling her I have been racking my brain to figure out a new way for her to communicate we have done it all sign language, writing the A-Z down and let her point to the letter till she spells what she wants to say , type and speek, but now I am down to what can we do next because speech is almost no more and so is moving her hands. Most of all put your self in their shoes and think what would i do if that was me. The best thing I found to do for my Aunt is a warm water pool she can walk and move and she feels almost normal but she loves it so much.

    Lots of hugs Kryste

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