Question Re:incontinence

CS 63

I realize that incontinence is extremely likely as dementia progresses.  My DH is not there yet but his bathroom habits have started to change.  He flushes the toilet many times while urinating and/or having a bowel movement.  When I casually mentioned this he said that he is worried about overflowing/plugging the toilet.  I have also noticed that he doesn't always wipe adequately.  He is still with it, most always, hygiene wise and would be embarassed if I pointed that out to him.  If he were to become incontinent while he's still with it enough to know what's going on I'm worried that it will be a game changer.

For those of you who have an incontinent loved one, were they aware of what was happening and how did they/you deal with it?

60 falcon

Others will add to this, but here's where my DW is at and what I'm doing.  She hasn't been wiping adequately, or not at all, for months now. She's peed on the floors a few times and once on the nightstand by our bed. She's forgotten to pull her pants and or underwear down before going a few times (once while in a store bathroom). Sometimes she just can't hold it until we find a bathroom. Sometimes she uses the toilet when the lid is down.  And, sometimes she's actually incontinent, maybe every other day or so.  Aside from the not wiping adequately, these behaviors came on kind of fast, like in the last couple weeks. I was kind of hopeful that these behaviors (and other new problems) were caused by a UTI, so I asked the doc to order the lab test. Unfortunately it was negative, so I guess what I'm seeing is just more progression. 

I made the switch to Depends for her a week ago or so. Thankfully she doesn't know or care that they aren't normal underwear, though that's what I call them.  They help quite a lot.  I'm frequently having her use the bathroom to try to minimize problems. She allows me to be in the bathroom with her and I can tell her how to wipe, but she refuses to put the dirty toilet paper in the toilet.  It ends up wherever.  That's totally frustrating to me.  She has allowed me to wipe her at least once.

I've taken the advice of people here to stock up on wipes and gloves, packed a bag with spare clothes and shoes, wipes, depends, gloves, trash bags, etc. The bag is in the car. I'm always keeping track of which stores have family restrooms.  I can't just let her use a public bathroom without my direct help anymore.  Frequent bathroom reminders seem to help. I need to somehow restrict her intake of fluids in the evenings but that's not so easy.  I'm going to be buying some sort of bed alarm so I can be sure to be up to direct her to the bathroom at night.

I'm afraid DW is on the "doorstep"of total incontinence.  When she has an accident, she really doesn't know that what she did was wrong, and she doesn't care! I'm really not liking the fact that I'm a member of the "blue glove" club.

Others with more experience will probably chime in.  

LadyTexan

Over the past several months (at least), 

• DH was struggling in the bathroom. He knew he had to go, but was struggling with the mechanics. He was not wiping adequately as evidenced by the soiled underpants in the laundry.
• I switched him to disposable briefs. He did not seem to notice or care...until he did. Then he protested passionately. I reminded him the disposable briefs were saving me from doing so much laundry, but that didn't fly after a while.
• I inserted myself into the water closet with DH when he went to the bathroom. He accepted my assistance after a while because I was persistent. DH is a private man. I noticed DH started heading to the bathroom when I was not nearby to accompany him. Of course, that led to messes and mishaps. For example, DH is not aware where his body is in relation to other things, he frequently was not sitting on the toilet when he pooped. 
• On occasion, DH would state he didn't know what happened, the poop just fell out.

Since DH was discharged from the hospital on Thursday, it is a whole new ball game at our house, 

• DH is unaware of, if and when he has had a bowel movement.
• DH recognizes he has an urge to urinate, but cannot control his bladder.
• It seems, for DH, the fecal incontinence came before the urinary incontinence.

Although, DH is in the severe stage of Alzheimer's Disease, he is with it enough to realize he is losing the ability to control his bodily functions. WARNING: There is no way to sugar-coat this, it is destroying him. He is distraught that I have to assist him and clean him. It depresses him and angers him.

When DH is upset by accidents and mishaps, I use compassion or humor, depending on the day. For example, I remind him, its just poop, its no big deal. Today, he was especially sullen and frustrated that it was a real sh1t show here and I spent quite awhile cleaning him and both bathrooms as a result. I reminded him that I love him and that if the shoe were on the other foot, I know he would do the same for me. He seemed comforted by that message. 

I will be candid, incontinence is the straw that might break him. Long timers here know that DH was devastated losing his livelihood, losing his driving privileges, and giving up his firearms. So far, incontinence has been worse.

Having said all of that: keep in mind, this is our experience. Your experience will likely be different. You may not have the difficulties we are having. Our situation is exacerbated because my husband is currently mentally off balance (he is getting treatment).

I am grateful for the disposable briefs. I am grateful there is a place to discuss incontinence candidly.

Doityourselfer

My husband's experience with incontinence began when he had occasional leaks in his underwear, peeing around the toilet, didn't know where our bathroom was (2018), sitting on the toilet to pee (2019), frequently peeing in his washable incontinence briefs (early 2020), and he began using disposable briefs consistently (March 2020 to present) and didn't notice the change.  I put the disposables on him while he holds onto the wall to keep his balance. Fecal incontinence began October 2020.  He recognizes the urge to go most of the time.  Using disposable briefs hasn't been an issue so far.

Joe C.

As others have described the decline in bathroom abilities has been a process that goes back about 4 years. Initially she no longer understood that she should flush the TP, she would either throw it in the trash or leave it on the sink. Maybe 3 years ago she started forget to pull the pants & underwear down before sitting, at this point I started going into the bathroom to help her. Maybe about 2 years ago she stopped wiping her backside because it grossed her out so I assumed that responsibility. I have believed that DW is on the verge of total incontinence for over two years but fortunately she has only had occasional accidents. If I am vigilant on reminding her to use the bathroom I can avoid her having an accident. I have both washable and disposable incontinence underwear but at this point I only use the when we are going to someone else home or a long car ride.

lqadams

My husband started with incontinence a year ago. Unfortunately,  while staying at a motel. That was a horrid situation. We no longer travel. I have not been able to find any disposable underwear/diaper that can contain the urine from a 233 lb man. After he rises in a.m. he goes into bathroom and puts his wet jerseys and shirt on floor and Depends (with extra pad) in trash. I put new Depends on him, a robe then set him down to eat. Then I strip the bed, usually only the bottom sheet. I fold a disposable waterproof pad inside of a large towel and pin them together. Put that under a clean sheet. Then start laundry. I need to do laundry every day so house doesn't smell like a urinal. I hang up the sheets and towels to dry. My electric bill had become outrageous. 

During the day I try to have him use the bathroom every 2 hours. Quite often it makes no difference. I don't believe he can even sense that he has urinated in his Depends. Twice now he was unaware that he had pooped. 

I think incontinence is the most difficult part of dementia.  My husband has Lewy Body and he is having more trouble walking now. So between inability to walk, even with good walker, and his incontinence, we can no longer go anywhere together.

This is such a life changing, horrendous disease. I tell people that I am the only employee in a nursing home facility. And the pay stinks.

Ed1937

My wife is much like falcon's. She occasionally has a BM without realizing it. Maybe twice a week she needs help in the bathroom, but she will not allow me to wipe her. Thankfully we have a shower next to the toilet, and once or twice a week I have to get her in there to get her clean. She doesn't like it, but I get her clean.

I think one of the hardest things is that she doesn't always know where to go. I caught her trying to use a dining room chair or a chair in the kitchen as the toilet. Thankfully I have caught her in time (so far). One time I didn't catch her, and he sat on the bed to pee. It could have been worse.

Last fall she went into the bedroom, and shut the door. I heard a loud noise, and went in to see what happened. She opened the bottom drawer of the chest of drawers, and sat in the drawer. It broke, and had to be repaired. But she could have toppled the whole chest of drawers over on her. She no longer goes in there without my being there.

I usually tell her to wash her hands after wiping. Sometimes this upsets her, and she tells me she is not stupid. Other times she obviously is ready to walk out of the bathroom without washing.

Beachfan

My DH is solid stage 6, but so far, not "incontinent" as I would describe it.  He knows when he has to use the toilet, but doesn't know where it's located or what to do once there.  My only recourse is to be vigilant 24/7. He will usually pace from room to room and talk to himself which is a good indicator that he has to "go".   For at least the last 4-5 years, he has not used a toilet anywhere independently.  He has had several "incidents" (I would not consider them accidents as they would not have occurred if I had been on high(er) alert.)  Thankfully, for now, he sleeps through the night, sits to use the toilet, only requires toileting about 4 times in 24 hours,  and doesn't resist my total physical assistance. When and if the time comes that he sits and wets and/or soils himself without seeming to realize what is happening, I will consider him "incontinent" and move to Depends.   I am trying to stave off the inevitable for as long as possible.  It's exhausting to monitor his every move, but it beats the clean up afterward.  Good luck; the bathroom maze is one of the more complicated aspects of Alzheimer's disease.

Paris20

My husband had prostate cancer 12 years ago. The prostatectomy made him more prone to accidents but they were very rare. Now, however, since he has had Alzheimer’s for several years, the urinary incontinence is a real problem. I put one large pad under the sheet and two on top of the sheet. Our mattress is also covered. I bought nighttime disposable pinstripe underwear, calling them his «Yankee panties.»  As an avid NY Yankees fan, my husband wears those pinstripes proudly. As a suggestion to the manufacturers, perhaps insignia disposables could create more patient compliance. I know I’d wear Law & Order briefs if Lenny Briscoe’s face were on them. LOL

Lgw

I've been lucky so far as my husband has not fought the depends. He has "enjoyed" the security of those. However the problem with him not seeming to control bowel movements has continued to get worse. He takes 2-3 Imodium pills every few days. I know I need to contact his doctor but I dread taking him in.

Beachfan

Paris20,

I think you may be on to something!  When the time comes, I will take some Philadelphia Phillies disposables, maybe with the Fanatic on them.  DH cheered on those d$#m Phillies until he couldn't cheer them on anymore.  Spring training was on his bucket list and we made it to Clearwater about 4 times before the bottom fell out.  I put the baseball games on TV as background noise, but sadly, no reaction from DH.  

Ed1937

Paris, you should start your own company. That's a brilliant idea!

aod326

Hi CS. The idea of how PWD is going to react regarding comments about anything toileting related is often worse than the reality. I too dreaded how DH would react when, for example, I suggested Depends, but he was fine. 

You might try just saying matter-of-factly, not disapprovingly, you've noticed marks when you're doing laundry, looks like maybe we need to pay more attention. 

On a practical note, do you have disposable wipes by the toilet? I know they are awful for plumbing and the environment (I actually have a foam dispenser that just requires TP, but that's not going to work for someone with dementia!), but one's priorities as a caregiver are different.

Good luck.

Suzzin

My mom started wearing depends when the carers were there all day, and they would just put her in them. She uses them most of the time now, other times she likes to wear my dad's jockey shorts. We went through a time when she would pull the depends apart and flush them, blocking the toilet, but she seems used to them now. If she doesn't have them on she will have an accident but doesn't respond to it.

Dad isn't completely incontinent but he dribbles significantly. He also refuses to change his shorts (and most days doesn't wear underwear) so he often stinks of stale urine. I'm trying to find out how to talk to him about it. I bought men's depends but he laughed and said he doesn't need them, and I can't leave them in the bathroom to be discreet because my mom will wear them and they are too big to be useful to her. They have just moved to assisted living and I really wish he would change his shorts because no one wants to be friends with the smelly old guy.

Ed1937

Not sure if this will be useful to anyone, but here's what I did with my wife. She was becoming urine incontinent, so I just went out and bought a pack of Always incontinent underwear for women. I brought them in the house, and asked her if she would try them. She said she would, and I made sure her underwear were never to be found again, even though she never asked for them. She still wears them even though she is becoming more and more fecal incontinent. I don't think she needs anything more at this point.

CS 63

Thanks for your candid response!  My DH, 56 years old,  has some similarities to yours, he has been hung up on driving for a number of years now.  It is his main depressive issue, some days he is sad about it and lately has been more angry about it. He hasn't driven in 2 years.  He really misses driving his motorcycle and keeps reminiscing about him and his friend, from more than 35 years ago,  and all the good times they had and even though they were kind of reckless on the bikes they and nobody else were hurt, so he doesn't understand how there could be a problem now.  He agreed to sell his bike this spring and I quickly had his brother come and get it and take it away, he tells me daily how he misses it and wishes we didn't sell it.  DH started having seizures a few weeks ago and is waiting for an MRI which is scheduled for Aug 12.  The silver lining is that I have told him that no decisions regarding riding his motorcycle can be made until the MRI results are back.  It buys me almost 2 months, although he was sad today and said that he is tired of waiting. On the topic of incontinence, which was my original post, thanks for sharing your experiences, I will just have to wait and see what happens but am now better prepared.

CS 63

Thanks for sharing!  It helps to see where other people are with this issue.

CS 63

Thanks for sharing, how old is your husband, mine just turned 56.  Wondering if age is a determining factor in how they react.

CS 63

Thanks for your response, I can relate in that my husband is 6'2 and 205 lbs.  His bladder seems to be huge and can hold alot of urine, so when he becomes incontinent I'm sure I'll have problems finding briefs to hold it all.  The other issue I have is that quite a few years ago he decided that wearing underwear was bothering him and no matter what type we tried nothing was comfortable.  So switching from nothing to Depends will definitely be an adjustment.

CS 63

Oh boy,  thanks for the warning regarding using other items than the toilet!  I will definitely keep an eye open from now on!

CS 63

Thanks for your response.   I do think that I  might be worrying more than necessary.  He has adjusted to me cutting his finger and toe nails, helping him getting his clothes on the right way and most recently flossing his teeth. Perhaps he will adjust to help with toileting better than I am anticipating.  I have thought about getting wipes and saying that I am using them and perhaps he might want to as well.  We live in the country and are on a septic system so may have to have it pumped more often!

CS 63

Just wanted to comment on all of my replies.  I thought I was replying to individual posts and they would show up below each post. ,apparently I was wrong and they all showed up, one after the other, at the end of the thread.  This might seem confusing/random for those of you following this.  Next time I will just post one big response to everybody.

LadyTexan

@CS63, regarding the replies, most of us have done the same. I don't understand the purpose of the [reply] button. I am still confused on how to properly use the [quote] button.

Gig Harbor

You might consider changing out your toilet seat for a bidet seat. You would need access to an electrical outlet so you could plug it in and have warm water. They come with a remote control and every time he uses it you can use the remote to spray him with warm water. It will also dry him off. It saves the need for toilet paper and wipes and avoids plugging up the toilet.

French

For the moment flushing is random. Sometimes He flush before peeing, and after, he often forget.

Wiping begins to be forgotten or badly done and once he had a lot of poop left.

I also wonder how fast it will decline and I'm really not in a hurry