Feeling scared

Just when things seem to be progressing smoothly,the unexpected happens.Don's PSP has for a year now been progressing steadily but slowly.Now,in the last 3 days several things have changed.Incontinence has worsened,he doesn't even seem to know he has peed.He has slept 12 hrs on 2 occasions. Today while eating breakfast at 1:00 in the afternoon,he kept slumping over to the right in his chair(he has forever slumped to the left when he slumped).Seems weak and disoriented. Don't know if this is a phase or a major decline.

34 Replies

  • Get him checked for a urine infection. That's the biggest cause of sudden decline.

    Lots of love


  • It is frightening, I know, but that's all I do know. My guy did seem to slump on one side for long periods and then suddenly the other. He also often was unaware he had wet himself, and that went on for a couple of years. The sleep patterns were extremely variable the last 18 months or so, lots of sleep for days and then periods of very little. It could be that he will rally; it could be the beginning of a steep decline, as you say. This isn't so helpful, except to let you know you aren't alone. love and peace, ec

  • Thank you,ec, for sharing your similar experiences.That is reassuring to me.I know I must remember-One day at a time.

  • Yes agree with heady could be the start of a urine infection, I hate PSP so much xxxx

  • Yes Yvonne,it is certainly a hateful disease.Would that we had known how our retirement would be spent,what would we have done differently? I don't know the answer to that.

  • So true one day at a time. Its been a long day today. He couldn't help at all getting him on the comode. I nearly dropped him.

  • Jafarrar I was wondering if I should transport him to the commode in his wheelchair but that walking is really the only exercise he gets and I feel it important that he walks as long as he can.I have had near misses also.

  • I struggle with that dilemma too. I feel that if I let him he will just become weaker and weaker. I know thats inevitable really but we try to hold it back !!!

  • Keep him safe we did that used wheekchait until Gwent became unable a nd had thecwheelie commode . That's when we started usng a wheelie hoist .

    Too wavy for nd but I Krotons it in a corner wheelied him to it . Hoisted rmofed trousers and swapped wheelchair for commode . The reversed .

  • We had and still gave episodes like that switching off for dats as many as ten days .then switch back on ,

  • It is hard to know what is best. Chip use to walk to the bathroom. But he can not stand at all by his self. I have to pull him up and hold him up to change him very hard to do. Trying to get a hospital bed. He can not get on our bed too high. We have a lift chair it helps some. Have a Blessed day.

  • Jan

    My husband used to slump to one side but sometimes he went to the other side. I have no idea why. He had incontinence long before I realised it too. I don't know if your husband is the kind who covers things up but mine certainly did. Looking back there were things he never told me. I am not sure if that was PSP or his personality. He has pretty much always been like that so I think it's the second option!

    Your husband could have an infection as Heady has said or it might be that his condition is worsening. Check for infection before you do anything else.

    We are all here for you Jan. We can't make your husband better but we can help with advice?

    Love to you both.

    Marie x

  • Marie I do think his condition is worsening.I keep trying to imagine what next week or next month will bring and I should stop doing that.I just feel so alone-we always did things together and worked out problems together and now I have to rely on myself.

    He doesn't try to cover up his incontinence I don't think-he really does not know that he has wet.When I was helping him out of bed this morning and noticed his shirt was wet,I asked him if he was sweating and he said yes.Soon I realized it was pee.He seems oblivious to it.

  • Jan and all of you who have posted...don't drive yourself mad wondering all the time what is going to happen next. Nobody is the same and people have different symptoms. There are similarities of course but you have no idea what the future brings. Just take each day as it comes and deal with that.

    Jan I know exactly how lonely it is. I think we all do. It is also very hard to see the person you love gradually drift away from you. PSP indeed any neurological condition which is terminal is one of the toughest things you will face. Just remember the man you love. He is still inside that body even if he can't remember things as he once did.

    Good luck to all of you who responded. One of the worse things is feeling alone. My heart goes out to you all.

    Marie x

  • It is scary sounds like what is happening here. Sometimes when a bad decline happens he will improve for a bit but not completely where he was before. Chip won't look at me or anyone he just looks down his head slumped over. It breaks my heart.

  • Don sometimes stares at me and when I ask him if he needs something he says no.He never instigates any conversation.When I try to converse with him or just ask a simple question I often don't get an answer.

  • He might be aboe to see even . John yes to TfL me the tv was blank he couldn't see it

  • This is true-he is blind in one eye since childhood.Also his eyes close involuntarily much of the time.It's like the old saying "blind in one eye and can't see out the other"

  • I am so sorry. I am on high alert every minute and lately my heart races every time he moves. My husband has also been declining lately, but not to the degree of Don. I have noticed that he does not drink a lot of fluids unless I push them. I have been watching his fluid intake and that has helped, maybe coincidence. It's so sad because it would be great to know how they feel or think and often they just don't know. They are leaving us a little at a time. There is just no way out. Just SAD.


  • Karyn I think Don gets enough water as he has a handful of pills to swallow 3 times per day.Sometimes I crush those that I can and mix them with applesauce.But I think it is good that he gets the water.

    I can't imagine any feeling other than sadness anymore.

  • Nothing helpful to add except I am experiencing the same.

    Check for urinary infection first.

    It is heartbreaking. Chris sleeps a lot. He doesn't realise he is incontinent.

    We can only do our best to keep them comfortable but it is a lonely road.

    Jean x

  • Sounds a bit like my Dad. Three days ago his head was lolling to the left, (first time this happened) and he was very weak. Said he felt awful.The next day he was back to normal.

  • Phases like this seem to happen, make sure at least a litre of fluid intake and constant walks to the toilet. You can buy urine dip sticks on line and these are good to keep an eye on how the waterworks are going.

  • feeling the same, my poor man is in hospital after having another operation he had a infection in his hip. The care home really let him down took hours to get a doctor feel so angry 😠 with them.He's in such pain and I won't get him back to where he was. PSP is taking him from me bit by bit.feeling heartbroken. He also leans to the left.

  • Thanks to all for the input.I had just stated that he never instigates conversation when he said to me "We need to put out our flag today" (for Memorial Day) Praise God!

  • It is surprising what will trigger one to initiate a request or conversation. My husband out of the blue Sunday morning asked me if I had gotten the food ready for the church picnic. I had no Intention of going . It is so much work to get hubby in the van take along cooler lawn chairs etc. I guess he saw it on the overhead the previous Sunday. I couldn't believe it. Was not sure if he was aware of what goes on. Needless to say I put together the stuff for a picnic. We have to believe our loved ones are aware even if they can not express it or respond. We had a lovely time. It felt normal for a few hours. The hope of these moments to confirm he is still there is what keeps me going. You never know if today is the day you may catch a glimpse of his old self. Hope springs eternal. Take each day as it comes may be a lot of good days ahead as well as tough ones.

  • Noella you are so right. I hope you had a good picnic. Sounds as though you did. I am so very glad for you. My husband definitely knew a lot of what was going on. Sometimes he just didn't want to talk or couldn't at other times.

    Take care and love to you.

    Marie x

  • You said it so well. Hoping to see even a little of what was.Chip and I use to laugh a lot now no laughter. No smile.

  • Oh Jan, it shows he knows more than you think he might? Just because he can't communicate for whatever reason doesn't mean he doesn't know what is happening? I remember days when I couldn't get many words from my husband and then other days when he would instigate a conversation. Not a long one but a conversation none the less. We all have those moments and they bring a smile to our faces. Treasure them.

    Love to you.

    Marie x

  • This is happing now with my brother he slumps in his chair a lot says he has to pee then can't, seems to want to sleep a lot and does doesn't seem aware when he does have to go to the bathroom , noticed last week he had a slight tremer in his left hand which is new for him, my sister en law called me in a panic a while ago I ran over there she said his hand was really shaking when I got over there his pause was up there 136 per min and sweating really a lot the ridgetness has now gone into his arm I don't know what to make of this all I know since December he has really been progressing down hill also his color doesn't look the same. Nettie

  • So sorry to hear

  • My love had a few episodes like that - suddenly rigid and sweating, temps up and down. The extreme symptoms tended to last about an hour The first time it scared me terribly, and I nearly called the ambulance. After that I mostly rolled with it, just tried to sooth him. The doctor gave him a prescription for tizanadine, to reduce muscle spasms and agitation, and that seemed to help shorten the episodes. Peace, ec

  • May our Lord watch over you both may his peace and mercy cover you today and always in Jesus precious name I pray Amen.

  • Ben certainly declined when he had a UTI and never really go back to where he was when it had cleared. I have a terrible job to keep his fluid intake up, much as I try he never manages to take enough liquid each day and I know that puts him at greater risk of UTI's. His mobility has really taken a dive and he also slumps to one side and the physio seems to think that it's the contraction of his neck muscles causing it. He is to have an intense course of physio to try to release and relax the muscles in his neck. I think the poor chap is sick to death of all the medical visitors..

    Love Kate xxx

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