Urinary Incontinence

[Khartt]

Questions for my forum friends:

Seems like this has come on fast. It started with a little dribbling on the way to the toilet, like he waited too long to go, then couldn't hold it. Then there were a few messy days, where he just missed the toilet. We got a riser seat so he could sit down, and that helps some. Now in the last few weeks, he's making huge messes, like gets to the toilet and can't sit down fast enough so he just pees right on the floor! I do my best to be have a urinal handy in case I need to catch it. Last night he used his urinal at th bedside but proceeded to drop it in the floor (yes it was full). Ok, so yes there is a question in here. Is this the beginning of him losing all bladder control? Is it normal for this to come on so fast?

We had his weekly visit with OT yesterday, she recommended trying re-train the bladder with regularly scheduled trips. Has this worked for anyone? She also said cut off the water drinking after supper time, but he refuses, he is obsessed with his water cup and gets angry if I try to cut him off.

For those of you that have used or are using convenes, is that something he could use only at night?

I'm afraid we're beginning that time of up every hour at night...

[Karynleitner]

I’m so sorry. My husbands incontinence begain similarly at the very beginning of the disease, before he was diagnosed with PSP. He is now double incontinent .

We use convenes at night. I was somewhat reluctant, but it’s working out nicely. We has been using incontinence underwear with a bad in it. It worked OK, but he was drenched in the morning. He began getting awful pressure sores due also to his not moving . We began using the convenes so his skin remains dry at night.

I know what you’re going through. We had to remove the carpeting from our bedroom from all the urine he left trying to get to the bathroom.

Best of luck to you.

[Marie_14]

Similar to my husband but thankfully he didn't pull the convenes off until about a month before he died. He couldn't walk then so no urine all over the place. If you can try using it during the day too perhaps he will get used to not having to go to the toilet all the time?

Tell him how great they are and there will be no more problems with going to the toilet. My hubby didn't want to use one in the day but accepted what I said thank goodness.

Good luck!

Marie x

[doglington]

The only thing that worked for us was the convene. Once he accepted it they were particularly useful during the day.

I remember that time of dribbling so well. I don't think the bladder can be retrained in PSP. It was distressing for him anyway. The convene stops the embarrassment outside.

Jean xx

[rs25]

This is definitely very challenging and tiring on different levels. My mom has gone through all of this from dribbling to full on messes. What we did was time how long in between her “accidents”. Then we would have her go before that time to avoid the accidents. Even if she said she didn’t need to go, we would have her sit, so we could “train” her bladder. Nights were the most difficult as we had to set alarms and continue the process.

Thankfully, we have someone come and take over night duties now - as most everyone here knows, caring for someone with very little sleep is very taxing.

Cutting off water is difficult because of all the medicines she has to take.

Good luck

[Hidden]

I bought a case of 50 plastic urinals. There are 6 on his bed head board. As for elsewhere in the house I have one in the living room. One in the 2nd floor bathroom. When he has to urinate I put one on him or hand him one. His urgency when he has to go is intense. There isn’t time to get to a bathroom. It’s helped.

[Boyce3600]

Sorry, but what are Convenes?

[DeborahRamsden3602 in reply to Boyce3600]

I was also wondering

[Evertonian]

A catheter could be the answer

[DeborahRamsden3602]

My mom(73) now 10 months into her PSP diagnosis has no bladder control. She retains urine and ends up sitting for hours at night on the toilet. We have had to resort to urinary catheters which have been life changing. It means fewer night time trips to the toilets...which are difficult when shes zonked out with her sleeping tabs. We saw a urologist and he placed it. It's a silicone catheter so can stay in place for 3 months. It does take a lot of getting used to. Very uncomfortable for quite some time. But we now know how to change them ourselves in an emergency. Maybe something to consider???

Take care.

Debs

[Nanny857]

Hi Khartt, we are in a similar position. W was referred to a urologist, he prescribed Merabegron tablets but they haven't worked. W is still getting up several times during the night. Met with our neurologist last week and he has written to our GP recommending another medication, Desmopressin. He says this will shut down the kidneys at night and we should get a full night's sleep. Fingers crossed it works, W starts it next week. Oh for a full night's sleep, bliss. Hope you get something that helps. Lots of love Nanny857xx

[Tippyleaf in reply to Nanny857]

Do let us know how the Desmopressin goes!! My hubby now on 3 waterworks tablets inc Mirabegrom plus had a 12 week. Course of PTNS Acupuncture Now having monthly top ups but his urgency is intense day and night.

Good luck 🤞 for you both

Love Tippy

[Nanny857 in reply to Tippyleaf]

Thanks Tippy will keep you informed. xx

[PSomani]

Hi. Am facing that with my mum too.

We are using a combination of adult diapers and recently periodic catheterisation - silicone catheter. Diapers need to be changed frequently since they could be a source of infection.

Mum now seems to be more at ease post catheterisation and sleeps also at times - which was not the case earlier.

Her medicines for calming the muscles around the urinary bladder don’t seem to be working much since the catheter volumes are huge at times.

Most folks would know but still sharing that while the urge to urinate may be felt by the patient, not being able to pass urine over a period could result in a bacteria infection which is risky on account of the chance of it being spread to the blood which tends to cause a Multi-organ failure.

Hence anyone on diuretics should be careful or on any Meds to manage sodium levels .

Best wishes to you both on this tough and arduous journey .

Anshuman