PSP Association
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New poster - incontinence issues

Hi,

This is my first post on here. I generally don't like posting personal things online but given how rare this disease is and how little support there is I thought I should reach out.

My mum was diagnosed about 18 months ago but that was after about 18 months of us knowing something wasn't right but we had no idea what it was. After seeing 3 neurologists, they all agreed PSP and it all made sense.

Our main issue was falls, out of the car or backwards. And the change in eyes, she also kept smashing dishes and then withdrawing a lot.

She has been doing fairly well & remains independent in a suite in the house. She can no longer cook or drive but otherwise looks after herself as long as we are around.

But the issue of incontinence has come up. We have notice the smell of urine more and stool on the toilet seat.

Part of me is wondering if the stool is because she is unable to clean herself properly.

I have tired to talk to her about disposable underwear and wet wipes but she is telling me that she isn't having problems. Could she be leaking urine and not noticing? It is hard to get her to agree to recognizing there is a problem.

Sorry, it feels odd to be posting such personal stuff on a site where I know no one! And please forgive me if I don't reply to everyone's replies. We are in the unfortunate position of having to become care givers to both my parents right now as my dad is in the final stages of cancer and we all have toddlers! But I do appreciate everything I read!!

Finally, when my dad passes my mother will be coming to live with me. We have a room set up for her but it is a bit of a distance to the bathroom and I'm worried about the night time. Any success with a commode?

Thank you!!!

12 Replies
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You are welcome here! Your problems are something we all have had to deal with, and it seems to be a regular topic of conversation here, all quite Normal!

It is tricky when there is lack of cogniscance that there IS a problem, and how best to deal with it without upset. Or not so much lack of cogniscance but determination to manage and keep close counsel due to embarrassment.

If I had a problem with my love's behavior, I found his doctor helpful. I had begun taking him to regular appointments so Dr and I got to know each other.

If you are able, would suggest you discuss with Dr, either his or yours, to see if they can arrange a health nurse visit in home. This would open up discussion whether help is required, showering, toilet, cleaning. Your mum will probably say no as did my love, but the nurse may assess otherwise.

You have a hard road to travel with both parents affected with terminal illness. Do the best you can. Your heart will guide you and you may have to push hard for the health service you need! Maybe one of your dad's nurses might be of help. After all it is something they deal with all the time in their line of work so you would be more embarrassed than they are if discussed!

Can't help re commode, but feel they are intrusive things. Others here seem to find nappies, convenes and like more helpful. We had no experience of any until hospital was essential.

Hugs

Jen xxx

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It's a tuff one, my thoughts is buy them and place them in a basket along with a garbage can beside the toilet with a plastic bag in it so if she use it she can wrap it up and get rid of it herself if she is able . Unfortunately it will become more and more frequent . They do have women urinals . My husband use his pretty much every night/ morning. Sorry not much help. Do try to stay ahead of what she may need , don't wait , meaning shower commode,transfer chair.this is the chair I have, not cheap but has been a life saver

Invacare Ocean Attendant Propelled Standard Shower Commode

Dee in BC

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My husband has experienced some degree of urinary incontinence since the beginning of his illness. He did state that sometimes he had no feeling that he had to go , or felt it just as the flow began. I also noticed that sometimes he did not seem to realize he was wet. He also had a hard time reaching to clean himself properly. At this point his balance is very poor and I worry about the stability of a commode, but we may have to try it. I know others with mobility issues have found them useful.

Unfortunately, it continues to get worse and he now has problems with some bowel incontinence also. This is a tough one. I think perhaps if she smells of urine it is best to help her to realize it. I'm sure she would want to know. I try very hard to help protect as much of my husbands dignity as possible, for as long as I can.

Good luck to you. Your little ones will help to bring sunshine and smiles into your days.

Karyn

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Welcome. This is a problem for all at some stage and there are many graphic descriptions in past posts !!

Chris became unaware of when he had urinated some time ago.

Could you just suggest to your mother that it is very normal to need to wear a pad for " leakage " ? Its talked about a lot on TV adverts.

Because Chris was slow getting to the toilet and at risk of falling backwards as he sat down [ broken lids !!] there would be accidents. We found a good incontinence nurse but also Chris is cooperative and not embarrassed.

We have a commode but don't use it as Chris can still make it to the toilet with my help. He has a convene overnight.

Good luck. You have your hands full.

love from Jean x

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Hi - I feel for you as am in similar position. My dad has advanced PSP and my mom has multiple health issues. I also home educate my two children, and work part time. My dad's incontinence started slowly, and he wasn't aware of it. We found the incontinence nurse very helpful early on (available through district nurse service or GP). There are lots of different product options and it takes time to find something that works for you. We wouldn't be without the commode, it has wheels on and can double as a shower chair. I second the advice above of getting everything in place before you need it. Things take time, there are endless assessments to do! I'm so sorry about your dad. In the midst of it all, you need to find a way to look after yourself too - tough to do this, and it's something I need to prioritise as well - just need to find that spare minute from somewhere!

Sarah

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Welcome to the site and our extended PSP family. Where PSP is concerned... nothing is off limits. There is so much real and practical shared experience within this group, all you need to do is ask the question.

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I'm not sure your mother can "realize" that there is a problem. Instead, you'll need to address it if it's un-hygienic or unhealthy in some way. If not, then let it go.

Some in our local support group use a bidet to clean.

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Thank you all for the heartfelt advice. I've taken it all in. We are in a small community and so don't have access to much home support. But I will try suggesting different products and let her see if there is something. Otherwise I will probably have to let it go for now until it gets worse. I much appreciate it!!

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Hi just read your post and even though two months ago I wonder how you are getting on now? I too look after my mum and understand how tough it is. We want the best for our mothers but we know by doing so will only hurt their feelings. Sending hugs your way xx

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My sisters sitter told her that she wore pads for incontinence and that most everyone does now. She fought it for months but somehow agreed to them after having wet pants.

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Needed this thread or string as you say :) Our bowel incontinence almost always occurs if we've gone out and a couple of times while we were still out!!! We've had a few very long rides home!!! My husband will were the pull ups to go to Dr. appt. and he wears a pad at home - He has been able to clean himself up pretty good so far , Occassionally, I need to ask him to wash his hands again - We have gone through a couple of toilets and lids, too :{

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Hi

My mom definitely had a bad problem a year ago. However now she takes betmiga 50mg tablet (Irish name anyhow) before sleep and she takes a thyroid tablet called Eltroxin 50mg in morning. She has no issues now at all. She is able to hold it until she is assisted to the bathroom. Someone is around to bring her anytime she needs though. We leave a bell beside her chair to ring it when she needs to go.

I hope this helps.

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