How long can he keep using the portable ur... - PSP Association
How long can he keep using the portable urinal? Hubby can't get to toilet alone and uses a urinal at night but now splashes and spills a lot
It is a problem in PSP. It life long. Why not try some yoga partculrly to get some blood to brain and some for nerves
Hi...Frank used a portable urinal until about a month before he passed away. He had a catheter fitted on one of his visits to A & E because he hadn't passed urine for nearly 24hrs. The catheter obviously solved that problem.
As for the urinal....I got one for him because I was at the end of my tether, mopping up all the time & wiping down the tiles in the bathroom. Not the best thing to have to do especially in the middle of the night. Because of his balance & lack of co-ordination, I had to hold the bottle for him to make sure he & it were safe. This was not a problem for us but maybe not everyone is comfortable with that. We managed this way for about 12mths. It also made it easier during the night when his mobility was worse as it meant he didn't have to walk to the toilet.
Hope this helps. Take care & try to keep smiling. Love Hazel B xx
We have grab rails all round the bathroom for my husband as his mobility is extremely restricted.We tried the urinal but it was not a very good solution for our long term problem. As he can't see down to where he is passing urine,I have found that during the day the best thing for my husband is a bucket sat on top of the toilet. Of course we still have accidents but this has cut down considerably the amount of mopping up the bathroom. I empty the bucket and keep a disinfectant spray to spray the bucket after use.The 'toilet ' has been a real problem for us and like you get to the end of my tether BUT less now.We met with a Continence nurse who went through the options for us for during the night and I now put a convene and night bag on him for his urine. This has meant he can stay in bed all night with no need to get up for the toilet and we both get an uninterrupted sleep with no fears of him falling. We use the convene and a day bag when we go out for any length of time and this has made such a difference too. I hope this helps....we all need support from each other coping with this awful disease.
Take care, Bell.
Hi Rosemarie
We also had this problem for some time and it does prove stressful having to continually mop up. However, about six weeks ago it was suggested by one of the Nurses at Tony's Day Centre that he should try using a Conveen sheath. I had no idea what they were and found a lot of information from the Internet. They have proved a great success and means when the day bag is replaced with the larger night bag, both of us get more rest as I am not constantly worrying about him falling. It also means that when we go out I am not worrying about getting him to the loo before he has an "accident". They are easily fitted and hubby is very comfortable using them. From our point of view they have been very successful and certainly worth consideration if your hubby agrees. Hope this information is helpful.
Best of luck and once again, to everyone out there - stay strong and ask for help when you need it.
Take care...................SuzieQ xx
Hi there - unfortunately this is just part of the PSP process -it's two fold - 1) looking down is difficult so they cannot see the toliet and 2) the mobility gets to so bad that they cannot get to the bathroom on their own. Eventually we had to stand with my dad and hold him and the urinal for him to go. Or we put him on the portal camode and held the urinal for him. There just comes a time when they can no longer use the bathroom on their own and it is very dangerous as well. They can slip and fall. We always had a pad under my dad when we stood him and under the camode as well just in case. Definately helped with the mess - we took dad to the bathroom as long as we could but when he could no longer make it - we used the camode - -My advice is to try to make it to the bathroom as long as you can but then move to the other options as mobility becomes more difficult. Maintaining dignity is also very important I think it is much worse to "go" on yourself then always trying to make it to the bathroon. Also -there may come a time when they are unable to release and therefore retain urine - -very dangerous - -and will need to have a catheter. Be sure to measure input and output - it can tell you a lot about what is going on from infections to hydration etc.
Hope this helps,
Danielle
Thank you so much for the great replies. I think your answers just helped me to see that this is just the "new normal" of PSP and everything works for awhile until it doesn't. He is resistant to other options right now, and I've tried to be understanding about it. I guess I didn't say at what stage of the urinal situation we are at right now. We use the urinal by the bedside at night because he was falling in the bathroom too much. It's just that it is getting harder to stand (can't go sitting down) and I usually hear him and help, but I was sound asleep when he fell into the urinal and sent it (half full) flying across the room, dripping down the drapes and wall and onto the carpet. I was just happy it didn't do the other direction and drown me! Anyway, I will try to stick with this method and pray he accepts some of the options you've all mentioned. You are all really kind and helpful.
Thank you so much for understanding.
Rosemarie
Hello Rosemairie, Just a post script I have decided to put at the beginning:- I was advised to take up all the carpeting and put down easy clean flooring which was also safer for Chris to walk on. The double benefit was that whenever we had an accident of any description i could always say "well, thank goodness for easy clean floors and washing machines"! It didn't do anything for the trapped sciatic nerve which occurred because of too much manual lifting. I guess i always tried to be one jump ahead of the "game" and started looking at the implications of the next step before we got there. Chris started to get stressed about drips and spillages in the bed when he used a bottle during the night, so we got some waterproof bed sheets. The continence nurse should be able to help you with that. I was offered 2 a year, but they dry very quickly and I didn't need any more than that. He started to dribble and this worried him so we got some male incontinence pads- again contact the continence nurse I think their new name is "bladder and bowel nurse specialist".
He felt much more confident with the pads. We had just started thinking about the conveen sheaths and our carer was very keen for him to try them, but he took another turn for the worse and developed another bout of pneumonia from which he never recovered. It always took me by surprise to realize that he had advanced into the next stage and towards the end he was deteriorating very rapidly. I feel it is important to remember that every body is an individual and will progress through this lousy disease at different rates. Hope this might be of some help.You are in my thoughts.
Teena2
Oh, Teena2, I am so sorry. That I won't know or understand how advanced the disease is my biggest fear right now. You were doing everything right in trying to be ahead of "game" as you say. Again, I am so sorry about your Chris.
Dear Teena2,
I wound up holding my brother's penis to pee and changed his diapers. Neither of those options were his life long dream. I just tried to do it with some dignity. I never looked directly at his stuff, covered him when people came in the room, and acted like it was just another thing to do.
In the beginning he ripped out all of his tubes and IVs to just get to the bathroom and to prove he could do it himself. God love him, in the end he let me help him.
My brother went fast at
with this disease. We only knew in the last stages.
I hope you are surviving.
J.
I just want to believe there is a reward in heaven for that love and devotion, but in the end it's just having that kind of love in your life is probably the real reward.
Hi All,
I have found this blog really helpful. My husband a few months ago started urinating on the floor in the bathroom and over the toilet rather than in it. He said he couldn't help it, it just happened. After talking with the GP he was started on oxybutinin which worked until a few days ago when he started being incontinent at night. He refuses to use the commode or the urinal he has by the bed. I think it is time we started getting some advice from the continence nurse maybe he will take some advice from her!
Peter2, I know what you mean. My husband is so reluctant to change anything or make living adjustments. I have been thinking more about Dlera's comments and she has a good point that dignity is important...they have lost so much already. Good luck and let us know if your husband gets on board with the new idea. My husband's dr gave him Detrol but it made him dizzy. I am using the pads the others have mentioned now and I will try and "ease" into a longer range plan as not to make him feel bad.
Hi RosemarieLyn,
The dignity of the sufferer is so important. We have had some interesting situation with using toilets for the disabled when we have been out. But the worst time was whilst we were on holiday and he needed to go and off he went to the Mens. I waited for ages. I was getting to the point of asking one of the men going in if they could check on him. My husband appeared really annoyed and in a state, saying he couldn't go. This rang alarm bells and I thought www would be off for a hospital visit. The problem was nothing so serious, it was, he couldn't undo his trousers. We got sorted. Since then I ensure he uses the disabled toilets. Will keep you updated.
Hi Everyone,
I thought I would update (and thank everyone again) on the urinal situation. He is still using the bathroom during the day and I just check frequently for spills and splashes. The real problem was trying to use the urinal at night because he struggles to stand up (can't go sitting down!).
I used some of the tips provided by the wonderful folks who offered ideas. I set the urinal in a bucket on the night stand so that any spills will go there. I ordered a heavy-duty mobility device called a couch cane and anchored it under the nightstand (reinforced with books for extra weight). This allows him to get up on his own and, so far so good, urinate standing.
I know this solution is a temporary fix because one day he might not be able to stand at all. Again, thanks to everyone for brainstorming this with me!
Blessing to all of you! ----Rosemarie
My husband wakes up two to three times each night having to urinate. I have been getting up with him to steady him in the bathroom. After weeks of sleep deprivation I was told about something called a condom catheter. It is put on the penis, secured with tape and has an accompanying flow tube and a bag that hangs on the side of the bed where the urine gathers. It is emptied each morning and has saved my sanity. In the US you need a doctor's prescription and a surgical supply store.Medicare pays for it. Hope this helps someone in a similar boat. Edmee
Hi Edmee,
Was it difficult to convince your husband of the need for the condom catheter? So far my husband has been reluctant, and the sleep issue is still a problem here. I can do it if he only gets up twice, but after that I am exhausted the next day. Rosemarie
aren't we an inventive group lol . "needs must "
The catheter sheath has been a godsend for both of us ., It takes the pressure off both of us ..
When we started to use it at first we used the stand to hold the night bag which you disguard each morning . Then when we were given on long termloan a hospital bed another godsend " which I can also lower I I undo the tap on the bag and the urine goes through the bag straight into a bowl or any suitable container . Easy to empty and keep clean and can also reuse the bag after it has been cleaned through which saves the NHS " Waste not want not ..
dorothy-thompson
Hi Rosemarielynn
I have just picked up this blog - I haven't been getting them for some time (?) Anyway, I would just like share with you and everyone else, our experience of night -time trips to the bathroom. Like many of your loved ones, my husband fell over, wet the bed, peed on the floor and suffered all the indignancies of PSP, until, through this forum, I found out about Conveen sheaths. They have been an absolute godsend. My husband wears them at night, so we both get our sleep. He also wears them durng the day and when we go out. They are simple and convenient to use and do exactly what they say on the tin, so to speak!
They are available on prescription, just tell your doctors you want them, problem solved.
With a few tweaks though as my husband insists on taking it off in the mornings and the bathroom floor does get a bit wet, but it's very quickly dealt with and anything is worth a night of uninterrupted sleep.
Good luck and take care.
dorothy-thompson
Thanks, dorothy. He is still insisting on the urinal, but I know I will soon have to go another route. So glad it all worked well for you, dorothy. Sleep is precious! Take care. Rosemarie
