INCONTINENCE

[Plantnut]

Hi my husband has PSP & has a few episodes of fecal incontinence, which has caused him considerable distress & anxiety about going out.

Is it common with PSP?

How have others dealt with it?

[MARKJ9]

This is a stage of neurological progression of the disease. The brain is unable to control the sphincter muscles. It could later be the reverse too. Food won't move through the system smoothly as the brain loses ability to push the food through the alimentary canal (peristalsis). That might result in constipation and also often fluid build up. Do let your doctor know. It is possible that the progression of the disease can be slowed with medication.

[Plantnut in reply to MARKJ9]

Thank-you Markj; if I'm lucky & patient enough to get through to my GP switchboard I will make an appointment once I've persuaded my husband to goI appreciate you advice - I know it sounds pathetic bit sometimes another thing like this feels overwhelming & I'm so pleased to find this site to find support

[WindyGirl]

This did become an issue for my husband as well. It was very difficult to get him to wear disposable underwear because, let’s face it, no one wants to do that, right? It became a problem especially when thinking he just needed to urinate, so he would just stand and not sit on the toilet, then have a fecal accident. At some point, you will have to put your foot down. Because Barry could no longer drive by this time, I always took him wherever he needed/wanted to go. Sometimes I would refuse unless he put on the disposables. Eventually I got him to wear them at night “to protect the mattress”, although I already had a mattress pad and protector on it, as well as disposable bed pads. As he became weaker and had to use a bedside toilet, I made him sit every time.

Putting a protector of some kind on his chair may help, and if he doesn’t like it, he may be more willing to wear the underwear.

Also, having a plastic floor protector around the toilet helps. I also cut those disposable bed pads in half, then cut them to fit around the base of the toilet. Will try to include a picture.

This disease is not an easy road for either of you, and you will have to make decisions you would rather not make and sometimes be the boss you don’t want to be. It is hard to find a balance between keeping your sanity by not constantly washing out underwear and cleaning carpet and still letting him feel like he has some say in things.

I hope some of this helps.

Bed pad cut to fit around toilet base.

[Motts in reply to WindyGirl]

Excellent photo! SendingHugs... Granni B

[Plantnut in reply to WindyGirl]

Thank-you Windygirl what you've described is almost exactly where I am now!You account & suggestions are very helpful as Bob is really in denial about these episodes ever happening

At last I feel I'm not alone & have somewhere to turn - especially as I feel really mean at times when I insist that Bob goes to the toilet before we leave the house

He won't even consider wearing any incontinence protection but I'm still working on it

[WindyGirl in reply to Plantnut]

Glad you found it somewhat helpful. I also started putting a disposable pad on the floor when he stood to use the urinal just in case there was an accident of the other kind. Very beneficial. Also, the suggestions about keeping wipes and other necessities nearby are so true!! Just keep a bag (think of what you would need in a diaper bag for a little one) in the car and a small table near his bed/chair with everything handy, including ointments. When you move to a bedside toilet, keep toilet paper nearby. One, you can put it in the bedside pot to flush rather than putting it in the trash, thereby making things easier. And two, you can go through those wipes really quickly.

It makes it much less stressful for both of you if you have things nearby when accidents arise.

Lastly, keep every single plastic grocery bag you get. You’ll need them to double/triple bag soiled items for the garbage.

When he apologizes, just try your best to smile and let him know that you know he can’t help it.

That was a lot of very disorganized information but I hope it helps.

Stay strong.

[Espink50]

Medline adult briefs are the best. Makes life easier.

[Martina_MP]

It is an issue (as the pun goes). First of all, my mother wears the disposable briefs. Overnight ones can be thicker and more protective, for long periods out.

She is nonverbal and can’t communicate, so we put her on the toilet regularly and give her time. We record the date and time of her last BM on a whiteboard so that all the caregivers know and can anticipate. Listen for tummy rumblings and gas, smells, or restlessness, and do not ignore signals. 🙂

We have washable or disposeable (or a layer of each) pads on her bed atop the fitted sheet, and on her wheelchairs, and we used to have them on her corner of the sofa when she sat there. I also put one on her car seat.

We carry an emergency bag of wipes, extra pants, and disposable briefs in the car just in case.

Large adult non flushable wipes are helpful for cleanup. It can be a long process. Staying calm is important.

Sanitizing surface wipes, paper towels and cleaning solutions should be close at hand to clean the toilet and bathroom surfaces.

I buy her lots of cheap leggings/knit pants (which is what she wears every day) and have extra inventory so that if there is a big accident, we can just toss the soiled ones into the garbage. Sometimes they are just too much to deal with!

The main thing is to be understanding, reassuring, patient, matter of fact, and prepared, so it is not such a big deal. I saw my mother in law fly off the handle every time my father in law had an accident; she would yell and hit—clearly a sign of burnout.

The interesting thing is, there may be several episodes and then it may not happen for a long period of time, and then recur. So it does not necessarily get steadily worse. And you will likely get better at anticipating and getting him to the toilet quickly.

[Plantnut in reply to Martina_MP]

Again more very practical advice -all very welcome as it adds to my 'arsenal' of coping strategies!!!

[Plantnut in reply to Martina_MP]

Thank-you for such an upbeat reply - it all certainly helps me to be more positive which I've been finding difficult recentlyWhat a blessing this site is & so pleased I've found it