Bathroom Problems??

[zjillian]

I am stuck with a worsening of my husband's PSP bathroom -ing problems at night. He paces at night and urinates everywhere and has large bowel movements and I wonder how others are handling these problems at night. If he has pampers on he rips them off. I do not want to have to lock him in a room; he would start screaming and pounding on the door. Help!

[easterncedar]

Oh, dear. What a nightmare. I was feeling a bit stressed because his foot started bleeding as we were going to bed last night and I had to do some floor and foot cleaning and bandaging, and then in the dead of night he woke up choking and threw up, so more cleaning. I am still one-handed, which does add to the difficulty, but this is so minor compared to your problem. How long has this been going on with your husband? My only thought, I'm sorry to say, is to ask whether he could be sedated. I hope someone else can help. I'm sending sympathy, for what that is worth. Hang on! Easterncedar

[zjillian]

Thank you for your response. It's funny but as I was reading your note I was thinking "Oh my does she have a hard situation why should I complain." It is hard to hold on to the fact that all of us are dealing with impossible problems. My husband has had PSP for 8 years now and the bathroom problems have gotten progressively harder. He take many pills but nothing really holds him for long. I think I just need to accept this and clean-up the house every morning. Thank you again,

Jill

[msomaya]

Hi, my dad has had similar problems.. He used to rip the diapers too, so only thing we did at that point of time was to have plastic below the fitted sheets.. And to avoid falls we have locked up the bed... It's become like a cage.. Hate to see dad like that.. But he is so stubborn that he didn't leave us with a choice.. He always wants to be independent even in this state. He has had so many falls that the only way we had to make sure he doesn't fall is either to tie him up or make a bed with a cage... And even the chair he sits has a flap with a lock so that he cant get up without us being around....

.Now we have to use external catheters for his urination.. Sometimes he doesn't urinate and his blood pressure shoots up and he starts feeling restless...

Wish you lots of strength and hugs.. Hope everyone here the strength to bear all of it...

[NannaB]

Oh dear! I think this is the one thing that got me saying,"I can't do this anymore". I ended up talking up the carpet in the bedroom and putting a rubber backed mat by the bed. I locked the bedroom door to keep him in one place, got single beds but stayed next to him and used Kylie sheets to save the rest of the linen and made sure I got up every time he got out of bed to try and catch whatever he did. I had 2and a half years of hardly any sleep. I started to log everything that happened at night and when I reached my lowest point, took him and the log to the GP. My husband was given sleeping pills which kept him asleep for 2 hours. He also had various prostate investigations which showed it was enlarged. He is on Tamsulosin pills which stop the feeling of the urge to go so he didn't get up so often. Time has passed now and he is in a hospital bed with sides, wears a convene sheath (which he does pull off sometimes) and I sit him on the toilet at about midday if we are home. Sometimes he performs then but if he doesn't he knows he doesn't need to, so doesn't get so agitated. He hated it when he soiled himself. He still knows when he wants to go but we don't always get him to the toilet in time. We have a commode but he hates it so I try to let him sit on the toilet. We now have continuing health care and are fortunate enough to have a night nurse every weeknight so at least I can have a good night which enables me to cope during the day. I well remember what it was like and still have some events during the day so really feel for you both.

Nanna B

[dkt48]

Hello dear. I am also struggling with my husbands bathroom problems. In trying to avoid falls in the night, the hospice nurse is trying to get my husband to use an external catheter but he will hold it all night, pull it off at daylight then urinate in his diapers and all over the bed. He is also stubborn and defiant at times. Also instead of constipation he has the opposite problem and in volumes. I know this is wrong, but there are days I've actually prayed for constipation. As for the catheter, I'm sure it's going to take time to get him used to it. I pray for all caretakers and PSP patients daily. This is a monstrous disease! I send my heartfelt love to you and your loved one and pray for a better tomorrow for you both.

[zjillian]

Thank you so very very very much for your responses to my question. I really really really wish we could all get together in person. To just see and talk with someone who is going through this would be such a relief. To bake you all cookies and have a cup of coffee and cry and laugh together. You have all given me things to think about and alternatives. But more than that, it is sharing the problems that helps me the most. That I am not a bad wife for having BAD feelings about all of this and that others struggle with these situations as well. That there is just moving ahead and not looking too hard at where we are headed . Today I woke up to no big mess to clean up and it was like a holiday. Small pleasures. Even complaining makes me feel guilty, like I am not tough enough...or being selfish..or a spoiled little girl. But to hear others...this is a gift. Thank you all for taking the precious time to respond.

Jill

[peterjones in reply to zjillian]

hi jill no mate you are not a bad wife for the feelings that you feel mate I think its only natural if the truth was known I think every carer that is on here would feel the same way I know I would if I were one mate I cant give you a solution to your problem you could say to him if you make the mess then you will have to clean it up yourself I have had enough that might make him take on board what your saying mate I have not got to that stage yet which i have been dreading the thought of and I hope I do not get to it either I help around the house if I can without falling over which is always on the cards I have had 90 falls now since last sept when averaged out I do not think its to bad just as bit painful afterwards sometimes but thats life i guess I go to,phsio and balance group but it does not seem to stay in my head

about which way to turn and getting your feet going after shuffling around then over I go but I still consider myself lucky to have so few problems at the moment that is mate

aqpart from swallowing and having pureed food and that horrible wallpaper paste called thickeners but on the whole its not to bad I can still get around by mobility scooter or walker so I cant complain there are a few other things as well but nothing really that compares with your problem which I think you should try the shock treatment and tell him what I said to you about 3 hours ago I would give it a try it might slow him down a bit or it might not make any difference at all but at least you have voiced what you are thinking take care best of luck its up to you mate sorry I could not be of more help, sometimes its better to be cruel than kind peter jones queensland Australia psp sufferer

[zjillian in reply to peterjones]

Thank you for your help! It sounds like you are a wise person and are dealing with a lot yourself. I appreciate you taking time to write such support. And I will try the shock treatment. I do think it gets his attention if I finally blow. Take care with your falls...wrap yourself in foam, and treat yourself like a valuable glass vase.

Jill

Costa Rica

[peterjones in reply to zjillian]

thanks jill for comments I hope it works out for you I personally cant think of anything worse than having to clean up after someone even if they cant help it\\\\\\\ your bloods worth bottling mate stick with it matey you are a rare breed you carers peter jones queensland Australia psp sufferer

[jzygirl]

Jill never ever feel bad for having such thoughts it's all part of being human. I am so lucky the only toilet problem I have is urine and as he cant wear a convene we are stuck with pads and because he does not call out or get out of bed at night we do tend to have a soggy bed in the morning and I always think its my birthday if the bed is dry. Think everyone needs to look in the mirror and say what a good job I've done today.

Sending pats on the back to you all. Janexx

[Heady in reply to jzygirl]

Hi Jane, you are so right. I spent a bad day last week, felt everything I was trying to get across to my husband, was sounding "what about me". Felt very guilty and a failure. But I'm not a failure, I have absolutely nothing to feel guilty about. I lost my temper, SO WHAT!!!! Jill, we all feel like you do. I suppose it goes with the territory! We love our men and will anything for them. It means doing all the things that we are having to doing now and I'm afraid that means occasionally we lose our cool and struggle to cope. But we have to reminding ourselves that we are all doing a brilliant job and our loved ones are grateful!!!!

Lots of love

Heady

[jzygirl]

I don't think many people really understand what carers go thru on a daily basis and we are the first ones to pick holes in what we have done. At the moment Brian is still able to say thanks for what I do for him and he always tells me to look in the mirror and say what a good job you have done today. Think about what you have achieved and not what you have not done. Good advice from someone that knows. Hugs to all Janex

[zjillian in reply to jzygirl]

Thank you so very much for your reply. It is so comforting to know I am not the only one out there in this situation,

Jill

[goldcap in reply to jzygirl]

Jane, your Brian is a remarkable man. Shows you the kind of man he was before PSP got a firm grasp on him. My husband rarely says thanks, never please, and frequently becomes violent and tries to hurt me if he get agitated, which is often. It does not help to know that he probably cannot control his behavior. I sometimes, (no just about always) wonder why he is this way and others are not. I asked him how it feels to him when he acts this way and he said it is the only way he can express himself. We have tried so many medications none of which seem to make a difference and some even made him a lot worse. He is on medication which helps somewhat but not nearly enough. I can't help but wonder if as he loses his ability to control himself , if it is actually not just his real personality coming through. That's an awful thing to think isn't it? I try to be kind and gentle to him but it does not always work. Funny when he takes a bad fall and hurts himself which is frequently, they (nurses, medics etc.) cast a suspicious eye my way and no one seems to take in the bruises up and down my arms and around my neck. For the first time am starting to feel like maybe I cannot take care of him anymore and this makes me cry. So maybe I will take your guy's advice and give myself a little pep talk

Jgc

[jzygirl in reply to goldcap]

Hi goldcap yes I'm lucky in that way (he does have his moments). I get a smile and good morning beautiful every morning. He always answers the carer's how are you with a better for seeing you and then he asks how they are. At night he asks them if they've had a long day and when they go he always tells them to be careful and have a good night's sleep. I hope it carries on. Even the girls say its a pleasure to come in to see to him. Janex

[Valbri]

Thank you zJillian and all of you who have replied to her post about bathroom problems. I dread the nights and the mornings. The bed, the pads, the sheets, the floor are all urine drenched by morning but not the diaper as he takes that off. He used to be able to handle the urinal but not now even though he still tries, We sleep in the same room but I don't always hear him. Physically I have COPD (emphysema) and a bad back (I need a walker) and wear out very quickly. Every morning I hear myself saying "I can't do this anymore". I do have help but it is never enough.It is reassuring to know that the problems are similar.

[mummybear in reply to Valbri]

Hi Valbri, I only came onto the site today to say farewell, but read your post and thought to reply. It got to the stage at 4 years for me that i looked at myself and thought i cant do this anymore! my back was bad and every other bone in my body hurt, also hubby didnt talk for nearly all of those 4 years and was TV addicted, i was given a little more help but he started to get worse quickly after i was looking at nursing homes so i decided to try a bit harder, i'm glad i did as he passed at home within 6 months. in your case your may be older as i'm 55 and with COPD it will be twice as hard. If you cant get more help i suggest you talk with the Nurse to see what options are available to you, it may be a home for hubby close by, or do they have units outside of homes for couples as you could do with the help yourself? you can only ask! no harm in that? whatever you choose it a individual thing and it should be your choice alone, dont be pushed into anything. I hope Christmas is an easier one for you both, give hubby a hug from me as everyone loves a hug. all the best Maggie

[zjillian]

Is any type of catheter a possibility. There are many types for exterior, to permanent...have you asked your doctor about this. It sounds overwhelming with your own physical problems. Not doable at all. I am so sorry for your problems,

Jill

Costa Rica

[goldcap]

OK, what is with the HUGE bowel movements? My husband has then as well. Must be a PSP thing. Often he has to go urgently and we cannot get him on the toilet quick enough and he soils himself. He is always embarrassed by this but I always say it's ok. I finally got him to wear "diapers" at night. He had a bedside urinal which worked well for awhile but now he gets disorientated and forgets to reach for it or does not wake up. I think because I always made a big production out of getting him up, cleaning him, and changing the bed, when he just wants to go back to sleep (which is not an option because I sleep in the bed with him) that he finally gave in.

I guess I am "lucky" he cannot pace only stumble if he gets up.

I wish you a good night's sleep and dry sheets in the morning!

[mummybear]

I suggest you get onto your Nurse and start a daily dose of movicol because his bowels are not working properly, this may need to be varied for a while, always expect the unexpected as things go downhill, eyesight, food intake, weight loss. Most of all, always tell him you love him and never forget the Hugs and a few jokes to boot. sadly i was just a bit to busy being a carer and the strong one and feel only now that hubby has passed, that i was not a loving comfort as much as i should have been. but we may all feel like that as the workload becomes unbearable some days. all the best to you both and for Christmas too. xx

[zjillian]

The giant bowel movements (like an elephant or dinosaur ) are called mega-colon. My husband has them and nothing much has worked. It is a type of constipation (I think), the usual constipation stuff seems to help a bit especially hydration, which I always forget. Good luck, just another gift of PSP.

Jill