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Why are you afraid to be alone with her? Has she become violent? Has she threatened you? Without knowing the circumstances, it’s difficult to advise you.
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Daisy21 Apr 12, 2025
I think it's pretty clear to me. She said, and I quote, "I am completely unable to clean my... mom from incontinence."

She's totally afraid of changing a dirty diaper. Perhaps she's never had a baby. If I had never had a baby, I think I would still be afraid of it, too. But being a parent forces you to realize that it is something that must and can be done.
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If she requires this, and you are unable to do this, then you will now need caregivers (horrific in expense round the clock) or she will need placement.
It is sometimes the case for people. There's little that you can do about it. I am so sorry.
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Same. I can't clean people. For several reasons. I know millions of caregivers go through the motions out of love or duty or whatever, and they don't like it, but they are forced to do it.
I can't and I don't.
No matter how many people tell me to "deal with it" or "grow up" or "get over it". I am not Florence Nightingale. I don't wipe or scrub bodily fluids off body parts. It's hard enough to make eye contact with other humans and to answer phone calls. I cringe when people hug me.

That said, I must depend on other people to clean up. It costs a whole lot. I would work 3 jobs if I had to, just to pay for caregivers.
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ElizabethAR37 Mar 27, 2025
Please, oh please, let me make my Final Exit before I need to be "cleaned"! How could I expect someone else to do what I could not do myself?
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I’m guessing you’re afraid to be alone with mom because you fear being placed in the position of cleaning or changing her. If that’s it, understand we all have our limits, this is yours, and it’s okay. Accept it, it’s not a character flaw. More people would be wise to know what they cannot handle.
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Reply to Daughterof1930
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I had never had to wipe and clean another adult's behind, until my aunt got dementia. I get it. It's tough. Even changing her depends, I will never forget how she sat around in that loaded depend, and when I finally got it off, it was so loaded, it messed up the freshly cleaned carpet. It was hard trying to change and bathe her because she got agitated and would fib that she does it herself.
The incontinence is my big problem, too. She has a caregiver coming in, but not every day.
My own cousins who live near aunt weren't cleaning and changing her, yet expected me to take all of it on.
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Reply to Tiredniece23
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Don't be hard on yourself. I was the same way with my dad before he went to a facility. I think I was judged by a member of his side of the family about it but this does not make you a bad person. Some people feel uncomfortable doing it and it is ok! Some people can not handle the hands on part of care giving and I'm one of them.
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Is she able to sit in a shower chair at all. Perhaps I missed in your post if she is bed bound or not. This would make the situation easier even if it is once a week as frequent incontinence will be bad for her skin especially is she stays in a brief for long periods of time.. I am sorry for all you are going through.
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Reply to Riverdale
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Time for placement .
She will get washed there and behavior managed with meds .
You can’t live in fear of her and be her caregiver .It’s ok to stop hands on caregiving .
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Reply to waytomisery
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If you can not care for her you have 2 options.
1. Hire a caregiver that will come daily to help with her care. (If you need help over night then that can also be arranged.) Mom pays for the caregivers NOT you.
2. Place mom in a facility that will meet her needs. the options there would be Assisted Living or if mom has dementia then Memory Care.

You can learn to care for someone. but there are some people that have limits as to what they can do, or will do. I call that your "line in the sand" . First though is safety if you are not safe caring for anyone or if they are not safe with you caring for them then you have to hire someone to do what you are unable to do or you place them. It is not a failure but it is accepting that their care is beyond what you can personally do.
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Beethoven13 Apr 5, 2025
If she needs care with changing and toileting, that is beyond assisted living and possibly memory care. Unless you hire your own private caregiver to come to her facility to help her. You pay out of pocket on top of assisted living. Memory care may help with some hygiene but of course, costs more. Full incontinence care may mean paying for nursing home/skilled nursing care or private pay home care. It all costs $$$. Or qualify for Medicaid if the person has no or very little assets.
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Time to get her some income help or into a nursing home. Start investigating what she qualifies for (Medicaid, VA benefits, county, etc). Hopefully she doesn't have enough assets and can qualify for Medicaid. This is a reminder that it is important to think about these issues earlier than you think and plan ahead if possible.
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swmckeown76 Apr 5, 2025
Understand that she probably needs long-term care. But why would you want her to have so few assests and such a low income that she qualifies for Medicaid? I sure wouldn't have wanted that for my late father and late mother-in-law. I was thrilled that both of them could afford assisted living and then subsequently a nursing home. That also meant they could keep Medicare + a Medicare supplement, which is far better health care than Medicaid. I also didn't care whether they spent every cent on their care. As it turned out, my three siblings and I each inherited about $50K from our father. My (now deceased) husband and his three siblings each inherited about $80K from his mother. That money also helped to fund his long-term care. But you need to see an estate planning/elderlaw attorney to explore her options, sooner rather than later in case she doesn't have a will or the documents that specify her choices for healfh care and financial POAs (and alternates), If she hasn't already done so, use some of her money to prepay her funeral expenses; they're generally considered Medicaid-exempt. States prefer that an individual has paid for her/his funeral expenses.
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We all have something we can't deal with. You really shouldn't feel bad about it.

I can deal with stuff like that - I did and still do - but I couldn't deal with cutting toenails! Thankfully, my stepsister has always taken on that job when she comes up for a visit (her dad's toenails could shatter bulletproof glass from a hundred paces 😂)

If you are your mum's main carer, though, it's time to look into an alternative care plan for your mum.

Wishing you and your family all the best.
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Kittyluv Apr 5, 2025
FYI
Medicare will pay for toenail clipping every 9 weeks. The podiatrist also looks over feet and ankles for swelling other abnormalities so good other check for elderly.
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May I ask what it is your afraid of while being alone with her. That information may be useful to give you a more accurate suggestion. Is your health an issue? You would be very right to not want to topple-over yourself while caring for her. If you can't physically help her you are still needed to oversee her care, or enlist help for that work. That effort and responsibility is a great kindness in itself.
There are good reasons many folks are unable or unwilling to help parents.
We don't have to do the caring directly when we can't. It's ok to just make sure that they are being cared for by way of; safe shelter, a clean place to sleep, they are kept clean, kept dry and warm, and fed regularly.
Sometimes this thing must be done more for us than for them.
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Reply to MicheleDL
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I was afraid to do this for my brother but once I looked at videos of how to do it and just started, now it is no big deal.
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Kartyjb Apr 5, 2025
Can you recommend the videos that were most helpful?
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I use the no rinse spray foam and baby wipes...super easy to get the clean
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Reply to Evonne1954
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A few questions
Is mom using the toilet or are you changing her in bed?
Is mom fully incontinent?
A bidet toilet seat can be a great help.
A commode can help with cleaning her as the "bucket" can be removed leaving the bottom exposed for easier cleaning. And if you have a walk in shower and a hand help shower wand that can make cleaning easier.
If you are changing her in bed it is a matter of wipes, gloves and practice.

BUT..all this does not help your fear of being alone with her.
Is the fear because you will get hurt? Or you will hurt her? Or that you will not do a "good job"?
Maybe it is time to consider placing mom in a facility that can care for her with staff 24/7.
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Reply to Grandma1954
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Hello my friend,

Thanks for sharing and I completely understand how you feel. I took care of my elderly mother for the last four years of her life on a full-time basis, and that required that I help her with toileting, cleaning her, and bathing her. As it was very difficult for me to clean her in her private areas, I finally hired a nurse to help me learn how to clean my mom so as to accomplish three goals. The first was to learn how to maneuver my mom so as to keep her comfortable and maintain her dignity. The second was to learn how to clean her properly. The last was to accept, and even embrace, the uncomfortable nature of cleaning my mom. I can’t say that I actually got over the unpleasantness but having a professional work with me allowed me to keep my mom at home with me.
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Reply to tokyosteve
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Most people feel overwhelmed a bit doing things they have never done before. Sometimes, it is because of lack of knowledge. If so, check for medical videos that train home health care aides and nurses - YouTube, Cleveland Clinic, National Institutes of Health, nearest large hospital or university that trains medical professionals... Sometimes, it is fear of hurting your loved one. If your loved one has difficulty moving or a painful condition, ask doctor for physical therapy referral. The therapist can evaluate your loved one's abilities and teach you ways to position, lift, maneuver them to help with daily activities. Sometimes, it is thinking too much about the unpleasantness of bodily waste - smells, sights, textures... Use disposable gloves and a face mask if need be. Use disposable wipes and or body wash sprays for perineal (botttom) hygiene. Ligth a scented candle. Remember to wash/wipe from front of body towards back of body. Consider that you would change the diaper on a baby so he or she was clean and didn't get diaper rash; same goes for an older person. Usually, I find that just stopping the thoughts about the unpleasantness of the task and diving into the task stops this difficulty.

By the way, I am a registered nurse and do a lot of toileting as well as changing a lot of unpleasant smelling bandages in the course of my work day. It does get easier with practice.
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MiaMoor Apr 6, 2025
It's really good that there are healthcare professionals here, like yourself, who can give us great advice.
Can I add that we should make sure that our LO's dignity is preserved at all times? Plus, when Mum could still reply, I would ask her permission to carry out intimate care needs. When she could no longer respond, I would still gently explain what I was doing and why.
You would do this automatically, Taarna, but I learned from my mum, who worked with the elderly, about the importance of maintaining dignity, and later from helping both the carers and nurses who looked after Mum. Otherwise, I'm not sure whether it would have occurred to me.
I'm so grateful for everything the health care profession does for us.
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Congratulations on knowing your limits. Give yourself a pat on the back for not only recognizing that you have a problem, but also trying to find a suitable way to solve it.

Incontinence was where I drew the line in my Mom's journey in dementia. I can wipe up after a cat or a dog, but found myself unable to do the same for my Mom. I just got angry then resigned, then angry until I finally realized that it was the breaking point for me. I internalized my anger because I knew that my mother could not help herself. She was relatively super sanitary when I was growing up and would be a bit horrified if she really knew what those wet puddles on the floor really were. She would wake up at night constantly so that she could go to the bathroom and sometimes dribble on the side of the bed.

At first, my Mom used Depends and that seemed to hide the incontinence. However, somehow, she still managed to piddle, some of the times, on the floor with them on. I never did figure out how. Then it got to the point where she resented changing her Depends, because it felt dry to her touch and in her mind, it was a waste of money. So I had the uncomfortable talk about how I could no longer take care of her. I never let on that the incontinence was the breaking point...but it was.

At MC, they suggested that we use pads over the Depends. 1) less expensive than changing Depends 2) they could change the pad without having to change the Depends, hence, the change was not as noticeable to my Mom.

In addition, they put her on a toilet schedule which really cut down on the number of times they had to change her.

I would suggest that you bring caregivers to help you with your Mom. If the "clean" is #2 as well as #1, is it possible to install a bidet to help wash her?

If you are talking about cleaning up the floor, I would try a toilet schedule.

...and if it continues to be a problem for you, this might be the time to look into managed care, either by caregivers or by a facility.

I'm sorry for you. This is very hard...
Good luck!
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MiaMoor Apr 10, 2025
When Mum was having the palliative care nurses in every day, during her last weeks, they also brought in pads and said they were better than incontinence pants.
They weren't the little incontinence pads sold everywhere - like slightly thicker versions of sanitary pads - but larger pads that went inside the stretchy throwaway hospital pants/shorts. I'm not sure how good these types of pads are, though, when someone isn't immobile in bed.
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If you do not want the cost of nursing care wiping out your inheritance, you can learn to do this. My motto is, "Why pay someone else exhorbitant amounts to do what I can train myself to do?"

There are lots of youtube videos that show how to
1. Change bed linens with a patient in the bed.
2. How to change an adult diaper, and how to clean the patient before rediapering, how to use a tubular slide sheet to reposition a patient in the bed.

Medicare will pay the bulk of the cost for an adjustable electric hospital bed, mattress and alternating pressure mattress pads to prevent bed sores. Position the bed so that you can walk around at least three sides of the bed, and so that she can see a TV. Order a tubular slide sheet with handles and learn via Youtube how slide sheets work. With handles on the edges of it, it does not actually take two people to reposition a person in bed.

Order in these supplies:

First a 13 gallon Janibell adult diaper pail (foot pedal-operated)with liners. Get extra liners.

A bedside commode with liners (not that she'll use it, but it is handy to have it open next to the bed at changing time.) You'll see why below

Nitrile gloves in your size (I order a dozen boxes at a time)

Lots of paper towels. (Keep a running inventory of all supplies and order more before you get close to running out. Amazon Prime is a life-saver in terms of getting supplies quickly delivered)

Adult-sized wet wipes (I have been using the McKesson wet wipes, but I think I may check out the price of the Northshore supremes because they sent me a sample, and I think I like them better.

Tabbed Diapers in her size (we've tried a few brands and prefer the Tena Proskin stretch night diapers. We have found the Northshore Mega diapers marginally better as to overnight leaks but not worth the added per count expense, considering that changing a disposable bed pad in the morning only costs about 50¢.)

Barrier ointment (Redline Remedy Eessentials Prevent is a good one).

Scrubzz Rinse-Free Bath Sponges (get the non- irritating fragrance-free ones).

Oh, and maybe a 5-level cart on roller casters for keeping all these supplies organized and close to the bed.

A few washable incontinence bed pads, and in your laundry area have a bucket lined with one of those comode liners, and a knife in case you need to scrape a bed pad before washing.

A big box of 30" x 30" disposable bed pads. Keep a fresh one always on top of the washable bed pad to minimize the need to wash the washable bed pads.

You can't use regular bleach on the bed pads, so you need these laundry supplies always ready: Oxyclean Max Force (enzymatic) stain treatment spray, Arm and Hammer laundry detergent, OxyClean powder, and a good laundry disinfectant.

Here's my sequence:

Put on nitrile gloves:
Just in case there is a poop, lay out these things: 6 or 7 half sheets of paper towels, 2 wet wipes on top of one Scrubzz sponge.
Open the commode and make sure a liner is in place.
Let the patient know you are going to change the diaper, and roll down the top sheet and blankets.
Unfasten the diaper tabs and roll up the front part between the patent's legs.
Fasten the loose tabs down so they do not stick to the patient's skin.
When rolling a patient always have the patient's leg closest to the direction of roll straight, and the leg away from the direction of roll bent.
Roll the patient toward you, and then roll up the far side of the diaper, tucking it in close to him/her.
Roll the patent away from you, and pull the back part of the diaper flat to expose the butt.
If there is poop, you can use the front, rolled up portion of the diaper to make the first cleaning swipe.
Pull the rest of the diaper toward you, and out from under the patient, rolling it up as you go to contain anything in it. Dump it in the comode or diaper pail.
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Daisy21 Apr 11, 2025
...clean the butt. Chuck each of them into the bedside commode.

Wet the Scrubzz sponge with just a bit of water and work it into the sponge. Then use it to give your patient a most enjoyable butt bath. Work from front to back. Dont miss any of the body creases. Believe me, he or she will love it! Chuck ithe sponge into the commode. Your patient is now sparkling clean!

Use the last two half towels to dry the butt and all creases. Chuck those into the commode. Your patient will love you for keeping him/her clean and comfortable.

Believe me, with practice you can get this all done in about 5 minutes, or even less if the diaper is just wet.

Apply barrier ointment if you see any pink irritation beginning.
Check whether the disposable bed pad is at all wet or dirty. If so:

Roll the dirty pad up into a roll against the patient's back. Place a new disposable pad on the half of the bed closest you, and roll up the other half of the pad just this side of the other roll, sort of tucking it under the other roll if you can.

Unfold a new diaper but don't yet open the tabs. The tabs come from the back side around to the front. So lay out the new diaper absorbent side up alongside the patient with tabs toward the patent's head and the back of the diaper about waist high. The patient should still be lying on his/her side, facing away from you. Scrunch up the tab side of the diaper closest to the patient and tuck that whole edge of the diaper under the patient.

Roll the patient toward you. The roll of the old bed pad should now be visible to you. Just reach over the patient and finish rolling it up away from you and then finish unrolling the new pad away from you. Chuck the old pad into the diaper pail.

Roll the patient back onto his/her back. Finish fastening the diaper by bringing the front portion up between the patient's legs, unfastening the tabs, and refastening them onto the front of the diaper to make a good and symmetrical fit.

Lift the commode liner, with contents, from the commode, pull on the drawstrings to close it up, tie the drawstrings and chuck it into the diaper pail.

Don't touch anything else in the house with those gloves. Strip off your gloves inside out, and chuck them into the diaper pail. Wash your hands and also the faucet handle(s).

Go recover your patient with his/her top sheet and blankets. Change bedding as needed if any of it has gotten moist. Give your mother a hug and kiss, provided neither of you is contagious with anything.

And give yourself a pat on the back for a job well done, money saved, and for the fact that your Mom knows you care enough to do your best to keep her out of pain.

I know enough about nursing homes to know I'd rather be dead than in one.
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Incidentally, not only do I change my fully incontinent, bedfast husband's diapers, but I also bathe him with no-rinse shampoo sponges, barber him, shampoo his hair, shave him, trim his eyebrows and mustache, clean out his ear wax, insert and remove his hearing aids, cut his fingernails and toenails, and use a nose trimmer to remove his nose and ear hair.

That is all on top of all the mountain of regular cooking, dishwashing, bill paying, laundry, pet feeding, yard and garden work etc. that are now mine and mine alone.

Although he can no longer stand or walk or pee into a pee jar or withold poop, and is very very weak, he is still the lovely man I married. He knows who he is and who everyone else is, is oriented in time and space. And he can still crack a joke to make me laugh. You see, we only have each other.

Our only offspring lives far away in another state. He is married, and they both have their careers. I can't blame them. They deserve their own lives.
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MiaMoor Apr 12, 2025
Daisy, your description of your lovely husband and your relationship is really heartwarming. Your outlook, including about your adult child, is refreshing after reading so many complaints from people who choose to take care of a LO themselves, yet want to make other people equally responsible for the hands on care.
Best wishes to you and your husband.
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