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willnotorcannot Asked December 2018

Can we talk INCONTINENCE?

I am not a healthcare worker or expert - just a daughter, mother, wife and full time worker to help pay bills. My mom is a widow ( lost my dad 2 years ago) and stays in a wheelchair or recliner most of the time due to fear of falling for severe neuropathy ( not feeling her feet or calves ). She sleeps from about 3 am to 1 pm and many nights does not even wake up and finds everything wet when she does. I think due to the fact it is hard for her to get up and down (weight) she waits until the last minute during waking hours to get to the bathroom but at least she does get to the bathroom. Question: we have washable pads on the bed at night but at least three nights a week these pads get soaked. ANY TIPS on handling this issue would be helpful. I have her put them in a plastic garbage bin with a lid in the garage until I (once a week) wash them and bleach them. Her doctor said most people just live with incontinence until it gets too unbearable because the meds have side effects and the surgery (for her age/weight) is not recommended - and I feel sure it is because the recovery would be too hard on her. What are people doing to make sure things stay clean enough (bed, linens, these pads etc) ?

Lymie61 Dec 2018
My mom has had incontinence issues for years, kept putting off surgery but has now reached the point where it doesn't make sense anymore as well as the point where it's worse. She just doesn't get enough sensation for the need to pee to wake her up or even know a fair amount of the time when she's awake.

She has the pads for the bed as well and a waterproof barrier/ mattress pad on the mattress as well. When she was sleeping on a bed (long story) we had the mattress plastic encasement, mattress pad, incontinence pad, sheet, incontinence pad, sheet incontinence pad down every time we made the bed. That way when she wet it we could often just pull off the top layer (pad and bottom sheet) and still have a dry set already on the bed so we didn't have to make it every night. She wears Depends, yes they have simply worked best for her, all the time and we have now discovered the nighttime Depends, which when she remembers to put them on before going to sleep keep her dry through the night and the bed/couch dry in the morning! Fantastic believe me! They are more expensive so she uses the regular ones during the day, I get them at Costco when they go on sale a couple cases at a time and have now found the nighttime to be cheapest from Amazon so I have them on automatic delivery for her. Again it takes her remembering to put the right one on at night for it all to work but she is fairly good at that because waking up to a wet bed and having to wash everything is miserable.

The other issue of course is UTI when they wear incontinence undergarments all the time so even though she worries about the expense we minimize that so much and help it by buying in bulk so she doesn't try to save money by leaving them on too long. We are fortunate so far though that she doesn't have regular issues with defecating in the undergarments, she seems to get and pay attention to that urge most of the time, since we added fiber pills to her regiment so she isn't bound up that is.

I found these great small plastic garbage bags that have a light lemon scent (other scents as well) and got her a small metal garbage can with an auto close top (step on foot thing) for the bathroom and she puts the used Depends in there and ties it up each day or two to put in trash can outside so the smell isn't bad in the bathroom and when she does wet her bedding she has some powdered Oxyclean that she can either put in the washer and pre-soak everything with that and a little white vinegar (neutralizes the smell) or she can pre-soak in a big wash bin or bucket. Your medium trash can would work just fine, the sooner you get it soaking at least the better and you don't need to bleach everything then. I also gave her a spray bottle of white vinegar and water 1/2 & 1/2 to clean the waterproof barrier when she gets through to that to take away the smell and disinfect. She has a shower curtain down over the couch and then a sleeping bag on top of that and then bedding or not because she prefers sleeping on the couch or just falls asleep there and that makes clean up when she wets stuff a bigger drag especially with the sleeping bag but so be it and the shower curtain at least protects the futon mattress/couch. The spray vinegar/water cleans the shower curtain when this happens well.

Good luck and remember while this is a PIA and often embarrassing for us it's 10 times worse for them, god I hope this doesn't happen to me! But I try to look at this experience as a method of learning what to do do in case it does, the things she does or doesn't do that make it harder I will know not to do if it happens to me!
lucyinthesky Jan 2019
like the shower curtain idea...thanks.....
GraceLPC Dec 2018
I agree with dkentz72! You need to get her to a Geriatric Urologist, or just a better doctor! UTIs are so dangerous, and cause problems in old adults that young people don't realize. Falls, weakness, ...so many they always test for it in ER!

Realize that she may not feel the urge to go until her bladder is very full. Also anything that spikes blood sugar will increase her urine volume! Steroids can be a major cause!

First let's talk days! In grad school my Professor was part of a study at a NH where grad students simply offered to assist people to the bathroom every 20 minutes. They did Not Ask, " Do you need/want to go to the bathroom now?"
They asked, " Would you like me to assist you/ go with you/ bring you..to the bathroom?" Doing this, I this manner consistently decreased incontinence by 80%!
This less intrusive question, and it's frequency & routine let them to say yes before as well as when they felt an urgent need! 80% improvement!!!

I sleep the same hours as your mom. But my service dog wakes me when she needs to go out, and sure enough my bladder is full. No one likes being woken from a deep sleep. A baby monitor will allow night help to see if she is restless, and choose a time to wake her for a quick bathroom trip. A cammode at bedside is very helpful here. One of those large entry way rubber backed rugs or puzzel like pads of 1/4 inch rubber foam..for kids or workout areas can be set under it for stability, then moved in the daytime.

Yes, you need well trained help at home. Staff that will add this routine to their schedule of duties, and develop a rapport with your LO.

Also there is a medication, DPPA???, that is often given to incontinence children to keep them dry at school. You should discuss using this at night only with your new doctor. Even a good Promt Care doctor may be able to get you started on a plan until you can change primary care Doctor's.

Then institute the every 20 minute offer to assist plan and stick to it!

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surprise Dec 2018
Blue chux underpads = you chuck them in the trash afterwards! We use 3-4 large ones under mthr all the time, and when one gets wet, it goes. Not all get wet everytime, but it protects the furniture, the wheelchair, and the bed. Cheap at Sams. You might want to put her in depends overnight since that is the problem time. That's how we transitioned mthr from panties to depends full time, started with night which was worse for her.
willnotorcannot Dec 2018
Thank you - I may purchase the underpads and use several - and just throw away the ones that get soaked. She is only incontinent during nighttime for the most part and it is not every night (thankfully). I never thought of using more than one pad and the throw away kind I have seen at CVS and Publix look very thin. I will check out Blue chux - Thanks for the tips!
cwillie Dec 2018
If she's afraid to walk but still capable of standing she may be able to use a bedside commode with a sturdy bed assist rail to help her transfer. I'd also recommend some physical therapy to make sure she retains as much ability to stand, transfer and walk a few steps as is possible, if she loses that it will be nearly impossible to care for her at home. I would encourage her to use a walker/rollator as often as possible.
As for the laundry - I assume you already have a waterproof mattress cover. Washing the bed pads with bleach is usually not recommended as it will ruin the waterproof layer - check the label.
What kind of incontinence pad or pull up is she wearing, there are many that are more absorbent than those commonly found at the local drug store.

LaurenBond Dec 2018
Try calling a good local medical supply store and ask them about their incontinence products. They probably have incontinence products that are better - more absorbent and better fitting - than Walmart products (even Depends). They may have a specialist on staff who can recommend good solutions for the bed issue as well. They may even deliver!

Secondly, certain physical therapists specialize in "pelvic floor dysfunction" - the muscles that support the bottom of the pelvis, including the muscles that assist with continence. There are therapies to strengthen those muscles and hopefully regain control. I couldn't say what the possibilities might be for your mother, but it would be worthwhile to get evaluated. Start by asking her primary care doctor if they know anyone. It may take some digging to find one.

Hope this helps!
GraceLPC Dec 2018
Try major University Hospitals. If there is not one nearby, call them for a referral. They will know where graduates of their program are located.
lizzy1952 Dec 2018
I would suggest putting her in diapers that are strong enough to hold urine and or poop. I had the same issue with my parents as their health decreased. I started with just the pads on the bed. than I went to a waterproof sheet cover, that helped a lot. I I put the pads under the sheet and than also over the waterproof sheet cover. that gave them double the protection. that helped a lot. after a period of time it got to where they couldn't walk anymore so I put them both into diapers. that helped a great deal. once in a while the bed got wet but not to much. the hardest part for me was caring for the two of them at the same time. It never failed if mom screamed to me that she pooped her pants that dad would scream two minutes later that he did the same. it was tough but I did it .
good luck.....

Sanibel01 Dec 2018
Dear willnotorcannot,

Your mom's doctor is correct that there are side effects to medications. While I do not have any medical background, I would respectfully argue that incontinence and staying in wet pull-ups for long periods also has negative side effects, UTIs for one. My m-i-l in assisted living has nighttime incontinence. Staff had her on a toileting schedule waking her 3 -4 times per night to help prevent "accidents" but the sleep disruptions were having a negative impact on her mental health. With her frequent UTIs her MD prescribed a medication called Methanamine which can have negative side effects. However, the medication has greatly decreased the frequency of UTIs which in turn has decreased her nighttime incontinence. Now staff only has to get her up once a night.

Honestly sometimes I think it comes down to deciding between the lesser of two evils. M-i-l is 86 so for us it is about her quality of life.

I am so sorry you are having to deal with this.

Help2014 Dec 2018
Willnotorcannot,
We also had a mattress cover and then on top of it we purchased a dollar store tablecloth (lightweight plastic). We would keep that dry and then dispose every so often. Then we made the bed with fitted sheet and multiple waterproof bed pads.
One thing you may be able to do is one hour before bedtime, stop her drinking? Be very careful that she does not get dehydrated (be sure she drinks plenty of fluids before that) and also, let her toilet well right before bedtime. Maybe that would help, but at any rate if she is sleeping on that schedule, chances are that she will be wet. My mom slept from 7 pm to 6 am in the morning- and awoke always soaked. Sometimes her pillow too!
We did do the drinking before bedtime and toileting and it did help some but when they sleep long like that, it happens. Her sleep is most important, too. Just be diligent to keep mom clean and dry!
Thank you for your hard work! You are a blessing to your mom!!!

dkentz72 Dec 2018
Your Mother has an idiot for a doctor.

Look into in-home-care for help....NOT THE STATE, NEVER THE STATE OR REVERSE MORTGAGE!! You will be required to pay down all her savings BEFORE their assistance kicks in and then you will be given a bill once Mom leaves for greener pastures.

In-home-care has MANY services they provide if you can afford. You may need to become Mom's guardian/conservator as it sounds like Mom cannot legally sign for you to become POA. You can also get "EMERGENCY" guardianship and Conservatorship.

It is SO IMPORTANT THAT MOM IS "CLEAN" AND DRY" IN HER NETHER REGION!

Her doctor should know that if she isn't she can get an infection all of us women have suffered from at least once in our lives. BUT SHE CAN GET ONE THAT CAN ACTUALLY KILL HER!!! IF SHE HAS DIABETES IT IS EVEN MORE IMPORTANT THAT THE NETHER REGION(S) ARE CLEAN/DRY!!

Sonce Mom sleeps so long, doctor should have her on meds that will help her better with her day/night issues.

GET HER TO ANOTHER DOCTOR. ONE WHO SPECIALIZES IN SENIOR CARE!

My Mom is in assisted living now and the owner has 3 of these facilities, BUT HE ALSO HAS A CONTRACT WITH A SPECIALIST WHO EXAMS EACH RESIDENT EVERY MONTH AND HIS STAFF IS ON CALL SHOULD SOMETHING HAPPEN.

I have a patient portal to asked any question(s) once I am given the panels. I can also just give my opinion about the meds (daughter is my interpreter as she's an RN) and he will call me without charge!

DANG!! No one should ACCEPT this condition EVER.

Research Mom's medical benefits if she has any from her former employer, Medicare/Medicaid.

Research in-home-care. You should be able to get at least 32 hrs a week from Medicare and then the difference from in-home-care. Many in-home-care companies will do the billing to Medicare for you. JUST MAKE SURE THEY ARE BBB AND HAVE A GREAT STATE RATING TOO.

You can get a list from AgingCare to start. Do your homework.
AgingHelen123 Dec 2018
The Medicare website clarifies that "Medicare Part A and/or Part B MAY HELP pay for your home health care IF ... Your doctor orders home health care for you, certifying that you need in-home health care because you’re homebound and need INTERMITTENT(NOT CONTINUOUS) skilled care. 

"...it’s important to understand that Medicare DOESN'T generally cover long-term home health care, or every type of in-home care."

https://medicare.com/coverage/in-home-health-care-under-medicare/
cetude Dec 2018
most UTIs are caused by stooling in the diaper. if they are bed ridden, don't use diapers but a disposable chux, but if they are still ambulatory you will have to establish a bowel program to minimize "accidents". If they go put them in the shower and do a good cleaning of their privates before it sets in. I would say incontinent bowels are 99% of the stress of caregivers. Do note frequent administration of antibiotics will render them useless and superbug infections easily set in. Antibiotics are not without risk.. but UTIs can cause blood infections too. just do the best you can and keep them *clean*.

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