Somebody please help me!

I just don't know what to do, Keith has been standing in the toilet for two and a half hours now, nearly naked, won't sit down, won't let me help him, tried to sit him on the commode and he fought against me, he's still so strong and I can't do anything with him! He was like this again when the carer came in earlier at 5 0 clock, she is only here for half an hour and didn't get chance to help, I'm waiting to get him in his nightwear, washed and into bed, I'm so tired I'm at my wits end and am bawling my eyes out again! I really can't go on like this, it's absolute s--t! xx

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  • Pat, if he gets back to bed, just try to get through tonight, I have been there, it's just the worst thing, tomorrow , first thing call your social worker, they will deal with it, sending you my love and hugs, this is just too awful to deal with alone, but, we are expected to do it.. but I'm thinking now, call emergency services if you need help xxxx

  • Shirley he's absolutely refusing to let me get him into bed, he's being really stubborn and quite nasty, I don't know what to do! He just says NO to everything I ask him to do and stares at me as though he hates me! This is so awful I just can't cope any more, I've decided now I'll have to consider a nursing home, as much as I love him I can't live like this any longer 😒 xx

  • Pat, that is just how it was for me, I wish I could have been stronger, but I couldn't anymore, my health was really suffering, we are still finding it hard but, it's getting better and we laugh a lot more when he tells me all the gossip, takes a long time but worth it xxxxx

  • 😘 We must meet up soon....xx

  • Pat

    Is he standing there because he can't go? or thinks he needs to go but can't or really doesn't have to? When my guy was doing that, the doctor put him on a bladder control med and he didn't go as often and didn't have the urge to go either. It's almost like it was just becoming a habit. It drove me nuts and yes, it's very exhausting because you are just waiting for him because you don't want to leave him alone in case he falls. Ugh!!

    Hang in there. He is still wanting to do things on his own and at some point he won't be able to do anything for himself. I know you are exhausted. Can you get someone to sit with him while you take a break tomorrow. Talk to his doctor about the bladder urgency.

    Keep us posted and take care.

    Huge hug,

    Nikkie

  • Thanks Nikkie, he's stood there like an ironing board as though he can't bend in the middle, I keep trying to get him to pee in his bottle but he won't, the next thing to happen will be pee all over the floor and his clothes, it's happened often before but has never lasted this long!

    I will talk to the doctor or district nurse tomorrow, we've been to see the urologist today to make sure everything was OK after the pulling out of two catheters, he didn't want to distress him any more by checking with a tube, he said because he was peeing normally, there was no blood and his bladder was empty he was happy.

    I so hate this evil PSP, and just want our lives to return to normal, but that will never happen will it, it'll only get worse!

    Love Pat xx

  • I hate PSP too--no one deserves this awful disease and for us caregivers it's awful too. So exhausting! The Lord wouldn't give us anything that we couldn't handle. You got this Pat. You are strong but if you need to call for help, do so asap.

    Prayers and XOXOXO

    Nikkie

  • AMEN Nikkie!

  • Oh I just had a thought... without him knowing...(He can't see below him, right?).pour a large container of water in about the size of a pee stream into toilet.....then tell him, :wow you really do have to go" as he pees , do some behavioral things like put a warm towel against his bladder so that he has a sensation of peeing allst while listening to the trickle...continue to talk to him asking do you feel that? etc. perhaps darken the room make sure he has a wheelchair behind him and leave the room....he will relax a bit and may actually start to urinate on his own....I used to turn on sink for a flow sound and leave the room....right outside door....It worked....when he could pee...

    Your husband does not hate you, PSP hates you...it hates all of us!!!

    AVB

  • I know you would, thank you! xx

  • Good advice AVB, I've tried a few of those things but have learned a few more, thank you....xx

  • Pat, only a thought....but he may be freezing? My dad used to do this but admittedly not for so long,but it drove us mental because they so bloody stubborn, I wouldn't muck about, dial 999, you cannot carry on like this! You need help and you need it now! If I lived near you id be round quicker than you could say bloody Psp!!!!! Huge hugs darling x

  • Oops replied to the wrong person! I know you would should have been for you Satt! xx

  • Oh do I yearn for our life to be normal, and that will NEVER happen, wi it

  • Call 111 and ask for out of hours district nurse or call the emergency social services number they have a rapid response team for emergencies .there is no reason you have to deal with this on your own.

  • I will Georgepa, thank you....xx

  • I know this is awful Pat. I've just read Nikkie's post and think the same. C was the same but not aggressive. It was his enlarged prostate that was causing the problem. Once he got his convenes all the hours in the toilet stopped because he knew he could just go whenever he was able without standing for ages and without wetting himself. C always fell after about 20 minutes if I didn't catch him and let him down lightly. He then started going in the bedroom or on his way to the toilet. I nearly gave up many times during that horrible period. Unfortunately/fortunately it does pass. Unfortunately because he became unable to walk or stand, fortunately because I no longer had to continually wash trousers or the floor.

    I hope by now he and you are in bed and things look better in the morning.

    Sending you a big hug.

    X

  • NannaB, he's still stood there, I've just been through and told him that unless he lets me help him get ready for bed I was going to call the emergency team to put him to bed, when I said is that ok or are you going to come with me he said "come with you". Keep your fingers crossed and watch this space! xx

  • Nope it's not worked, he's still just standing there staring straight ahead and now says he will wait for the emergency team, I think all his sense of reasoning has gone now! πŸ˜” xx

  • Awe love him pat, sounds like he can't move, πŸ˜“ My heart goes out to you both!! I wish to god I could help you!! X

  • Did you end up calling the emergency team? I'm so sorry. What a rotten way to spend a day/night. :(

    S

  • I actually managed to get him moving by threatening to leave him standing there all night, it worked thank goodness!

    Love Pat xx

  • Hallelujah!!!!!

  • NannaB,

    I am going to respond to Pat separately, but your post got me thinking... I'm not sure if this has been addressed at all anywhere else, but did C have prostate problems prior to his PSP diagnosis? My dad did. I'm just wondering if that's a precursor somehow. It's not that it matters in the big scheme of things, but I would love to be able to figure out everything about this in the hopes that someday, someone, somewhere, somehow can figure out how to stop this disease. It's the worst.

    S

  • S, no C didn't have problems prior to diagnosis. It started about a year after diagnosis. I asked a question on here asking if having difficulty urinating is a symptom and someone replied suggesting that he sees a GP as not all symptoms are PSP. Those living with the condition can still get things they may have had if they didn't have PSP i.e. Enlarged prostate, prostate cancer, diabetes, anything in fact.

    It's good to try and find a connection. C suffered from ulcerative colitis since 1977 and I think that may be something to do with it. There are probably many causes though, like there are for cancer.

    Grandsons just arrived so the fun now starts.

    X

  • Phew, I've managed to get him into bed after 4 hours 40 minutes standing rigid in the loo, I said to him would you rather stand here all night and freeze to death cos I'm going to bed, or would you rather be tucked up in bed nice and warm, it worked thank heavens!

    Thanks all of you for your support, it means a lot to me in these trying times.....

    Love and hugs....Pat xx

  • Off to bed now and a long awaited πŸ’€πŸ˜΄ xx

  • Well done!! Wishing you "both" a peaceful night!!! X

  • πŸ€—πŸ€—πŸ€—

  • POOR YOU>I know the feeling exactly.D does exactly the same.We struggle to the loo in the wheelchair then have scary job getting on the loo and guess what he hovers and wont sit down,then finally does then stands up again!We had this 5 times yesterday,and i may add with no success.It is awful,and i feel terrible cos i shout sometimes!It is exhausting and such hard work! The sun is out though.Must go cos i am loo duty,ha ha xxxx

  • It's an absolute nightmare isn't it, you have struggled to get them to sit on the loo and then before you know it they stand straight up again and you have to start all over again! I'd defy anyone not to lose their temper in this horrible situation, some days I cope better than others depending how tired I am, last night I was very tired!

    Love to you....Pat xx

  • Pat sorry did not see your post until today we had a bad night Thursday, feeling so sorry for you, wished we all lived near each other we could all help each other out, there is an out of hours DN call them, this PSP is such a horrible thing, hope you got some sleep and you feeling better, on Monday get on the phone, and I hope you can get yourself sorted out before you break. Sending you a big hug. George always says he needs a poo we could be in the loo 20 times a day, you don't want to get upset, but when you are so tired, it's hard, we are all with you pat. Xxxxxxx

  • Thanks Yvonne, I'm going to do some phone calls on Monday and see what happens then!

    Love and big hugs....Pat xx

  • Try and have a bit of a rest Pat this weekend, I am not doing anything, sitting down doing nothing, only up and down with George. Wouldn't it be lovely to put us all on an aeroplane and take us all to somewhere warm, and have our loved ones cared for, I bet when we came back there would not be a problem, getting any funding and help for us xxxcc✈️✈️

  • Now wouldn't that be lovely Yvonne, a complete rest in the sun!

    You're right, if the shoe was on the other foot things would be a lot different wouldn't they?

    πŸ€”πŸ€”πŸ€” xx

  • Hi Patriciapmr

    anymore than a half hour standing to attention by the loo call the ambulance service 999 they will help move him safely to bed. They will also get you help if they consider it is bowel or bladder issue. The more you call them the more evidence you have if you need to get CHC or other assistance.

    As others have said it could be a bowel issue but equally his brain may have "frozen" stuck in a situation M would freeze usually as getting her from her chair told it is a PSP symptom only way out is to put patient in safety and wait for re-boot.

    Hope you have had a reasonable night best wishes Tim

  • Thanks Tim,

    Keith slept all night and so did I so I'm feeling a bit less stressed today! We've already got Fast track CHC (down to me not giving in!) I'm going to call them on Monday and the DN, we'll see what they come up with!

    Love....Pat xx

  • Exactly call 999 you can't be standing for hours upon hours, way too tiring for all!! X

  • Hi Pat, sorry to be late on parade. Hope you managed to get a good nights sleep, after all the trauma on the evening. If it happens again, I would only leave him for half an hour, any longer then call the emergency district nurses or the Rapid Response team. Definitely contact the DN's Monday morning. Also your contact at the hospice, I presume you are under their wing, for any advice.

    Life is getting impossible here as well. S is off to respite again on Tuesday. It was booked a while ago, in case we couldn't get the one in Paignton. My CHC manager didn't want me to cancel, as she knows how close to the edge I am. I have finally admitted to all n sundry, that I can't cope any longer, so at long last, people are communicating and trying to put extra help in. Don't know what shape that will take, gone past even being able to say what I need, just asked them to sort it!!! I think it will end up with him in a home, sooner rather than later. I feel such a failure, after all the hard work I have done, to end up like this, is heartbreaking. I know it's PSP that's won, rather than me lost, but that doesn't stop the guilt does it????

    Thinking of you and sending big hug.

    Lots of love

    Heady

  • Heady you've just described exactly how I'm feeling, I just can't and don't want to go on any longer, it's driving me nuts, PSP has won sadly! I can't think of anything that would make things easier for me apart from a care home. It's not what I wanted, I've tried my best to cope but it's all getting too much for me! I'm sure I've aged ten years in the past year, I'm exhausted and I don't like what I am turning in to and yes I feel terribly guilty but I'm not strong enough for this awful disease!....πŸ˜₯xx

  • PSP is stronger than all of us put together. We all know we can't win the war with this hateful disease, but it's the way it's distroys Carers as well as the victim that is so cruel.

    We all fight these never ending battles for the basics of life, putting food into the body and getting rid of the waste. I can cope with the movement gone, even to some degree the lack of communication, but sort of life does someone have, if they can't eat or Poo?

    I keep looking at my dog, if I let him live like S is, it would be me they would be carting off to stay at Her Majesty's Pleasure. Yet S has had to a form signed to say, if he dies, then leave him alone. Can you imagine a vet giving CPR to an old, sick animal? The world has gone crazy and I want to get off the roundabout.

    I hope all the professionals know how you are feeling. No one can help you if they don't know. Pat, you only to make that real effort to tell the first person, after that the genie is out of the bottle and now I can't stop telling all, that I am very near to the end. I know they have listened, whether I get the help I need, is yet to be seen!!!

    Lots of love

    Heady

  • I'm thinking of you Heady, I think we are dealing with the same thing at the moment, I'm going to tell all on Monday!

    Lots of love....Pat xx

  • Make sure you get them all to talk to each other, so they can do all the worrying and hopefully come up with a plan. I can't say I feel any better now I have told the truth about me coping, but I don't feel quite so alone

    Let me know how you get on!

    Lots of love

    Heady

  • I think they have a good idea already they've seen me break down and cry so many times before, I'll keep you updated and please let me know how you're going on! 😘😘😘

  • I am totally rung out at the moment. It's been an emotional few days. I don't suppose anything will happen for a couple of weeks as they know he will be in respite next week, so safe.

    Big hugs

    Lots of love

    Heady

  • Heady no way you should feel guilty, you have done all you can and there comes a time when PSP decides the future for you. Let people sort things for you if possible, hard to let go but there is a human limit to do what you are doing 24/7.

    Take care and big hugs

    Kate xx

  • I know there is Kate, but that doesn't make the decision easier does it, I can't help but feel guilty of even thinking of putting my lovely Keith in a care home, I so wish there was another solution to this! xx

  • Thanks Kate! How are things with you?

    Lots of love

    Heady

  • Hi Haedy, feel like I've entered a different world since Ben's fall, certainly hurried things along and he is now totally dependent on me for everything. Will have to get weekly respite sorted but at the moment the builder and plumber are still around and the hose is chaos. Once they gave finished I feel I can start to get things organised. Hope your last couple of days have been a bit better, this is awful isn't it and I'm not as far down this lonely road as you and many others. Take care now.

    Love Kate xxx

  • A bit dyslexic there xx

  • Hi Kate, I do feel for you, learning to suddenly cope with everything for Ben AND builders still in. Both situations are a complete nightmare, but both together...... hope Tescos have enough vehicles to deliver the wine!!!!

    Sending big hugs and lots of love

    Heady

  • Not dre they will Heady, the temptation to drown my sorrows sometimes gets the better of me although I know I should be looking after my own health. Easier said than done.

    Love Kate xxx

  • Know that feeling, start the day, promising to be good, fail more days than I succeed!!!

    Lots of love

    Heady

  • Heady, you gave me good advice when I was in your shoes - you told me that I had NOT failed, now take your own advice for the sake of BOTH of you. Think not that you have failed, rather think that you have won because you have lasted so long caring for S against huge odds !

    You will both feel safer and more relaxed when things settle, as long as you can find a good home. No, of course it is not what any of us want, but there comes a time when the choice is made for you.

    You have been strong for both of you, now be strong doing the hardest thing of all.

    xx

  • Thanks NanBabs. It so hard isn't it, this being strong lark! Not sure I have the strength or energy at the moment. I will preserve for a bit longer and hope that they can put some more help in place. I was bold as to suggest I needed a full time Carer. Which they are going to ask CHC if that's possible. So the comprise might be doable!!!

    I have started thinking in the short term. Keeping him at home until Christmas, then see where we are. Allowing that I get extra help, well that's today's plan!

    Thanks for your support.

    Lots of love

    Heady

  • Hi Heady,

    A full time carer sounds wonderful, I`m keeping my fingers crossed for you both. There is always more than one solution to similar problems and I really hope you can find the one that suits you best (at least for the near future ).

    Hang on in there !

    xx

  • Heady, that is just how I felt weeks ago, hubby is now permanently in a nursing home, I spend lots of time with him, put him to bed and tuck him up most nights, I will never forgive myself for failing to cope but, we both know it had to be and he is settling , we bring him to my daughters every weekend for the day and we have a lovely time but it really makes me realise that it was impossible to carry on the way we were, I so relate to what you are going through xxx

  • Only just seen this post. So sorry, Pat. I know this will come for us too. Chris freezes occasionally and glares at me but, so far not for long. I am taking note of all the responses for the future.

    You have done so well and been tested beyond endurance. Please don't beat yourself up because its too much. Few can keep going alone with this dreadful disease.

    Love and a big hug, Jean x

  • Thank you Jean, sending you a big hug too!....Pat xx

  • Pat don't feel bad, Keith will be able to get the care he needs, and you can see him as much as you can, will more than likely benefit you both, it must be hard, someone that you have loved had children with, ups and downs just going, but you are only human you will burn yourself out, and the love will come back when you are not tired and you can give Keith your undivided time xxxxx Yvonne xxxxx

  • You've said it all in one Yvonne, thank you....xx

  • Hi Pat! I haven't reach this part of the Hell road of PSP, yet, so I don't have any helpful advice. But, I wanted to send to you all my well wishes and Huge (((((((HUGS))))))). God bless you and take care of you. Gracie girl.

  • And you too 😘😘😘

  • Pat I hope you are ok now, it's no wonder you are at your wits end and don't know where to turn, I think I would be in blind panic too. Thanks to all who advised the best way to deal with issues such as this, you are such a great help to us who have not had to deal with crisis situations yet.

    Big hugs

    Kate xx

  • Thank you Kate 😘

  • What a terrible time you have had, Pat. Just think of what my daughter said to me, "Dad would have been dead by now, without you". You have fought PSP knowing that it was a losing battle but have carried on fighting none the less. You have shown love and care, ,( OK, interspersed by a bit of irritation now and again, - haven't we all!?) If it wasn't for you, your husband probably wouldn't be here at all, and despite his illness, he will have had many enjoyable times, thanks to you. I know its hard, but try to think of all the positive things you have done, all the obstacles you have overcome, the love and loyalty you have shown. Give yourself a big pat on the back, girl and maybe raise a glass of something nice to yourself. Big hug.X

  • What a lovely post, thank you! 😘😘😘

  • Been there! Charles is 6 feet 4 and 213 pounds. I just can't help him. He stands for the longest time trying to urinate, etc. I get so I try to sleep standing up. Just kidding.

    So sorry, let me know how you are doing. Tomorrow is another day. With PSP it's hell.

    Cuttercat

  • I considered fastening myself somehow to the door and trying to sleep standing up, then I thought no, bad idea!

    Things are back to PSP normal now, at least he's responding to me again!

    Love and hugs....Pat xx

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