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My mother is in her 90s and has moderate to severe dementia. She lives with my younger sister who is able to help her bathe, and sometimes toilet, help her wash her hair, etc. I don’t mind taking my turn, which I have just finished for four months, but when it comes to those personal things, I would just rather not be involved. My mom gets extremely embarrassed and self-conscious even if I help her dress from time to time. It’s getting very hard for her to put on socks or sometimes pull a light sweater, jacket, shirt or pants on, but if I try to help her she insists she can do it herself when clearly she cannot. As far as personally helping her bathe, wash, trim toenails etc. I would rather not do any of those things. My sister doesn’t like it either but she does it anyway. Is there something wrong with me? It’s not a constant thing... my mom has good and bad days, but I just don’t think I could ever be a private duty nurse. God bless them!

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No, not a question of something wrong with you. While I found patient care, all aspects of it, easy and actually a joy, it was difficult for me when my own mother required help with catheter, etc. In fact, my parents who were otherwise free and open were, as far as body, nakedness, etc. quite private. I could tell it bothered my mother. This made any discomfort the worse for me. What you and your sister are experiencing is real, and it is difficult, and you are not alone, even among medical professionals. Everyone is different. You know, even in a very close relationship husband/wife, there are the bathroom door open types and the bathroom door closed, no matter how much intimacy involved otherwise.
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sjplegacy Oct 2020
You're right... spousal intimacy is one thing, having to change adult diapers is another. I did it, it had to be done. Even in MC I assumed that role. It was the least I could do to contribute to her care. Didn't like it.
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First off, I absolutely love your city. It is such a beautiful, charming place. One of my favorite places to visit.

Not everyone is cut out to be a caregiver. It is completely okay that you are not good dealing with this stuff.

Is it possible to help your sister in different ways so that she gets a break?

Does mom have the money to hire a bath aid a couple of times a week?

Thinking out of the box can help you, help your sister, help your mom in a meaningful way that is comfortable for everyone.

Bathroom help is my deal breaker, I just can not deal with it. Knowing your limits and acknowledging that you just can't do it is so helpful and the beginning of finding solutions. Best of luck.
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I couldn't do it either. Anything related to poop and I'm out.
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willnotorcannot Oct 2020
SAME
It is hard for me to visit with my mom on days she has bed pads drying everywhere. Urine reeks. I fabreeze the garbage cans and area as often as I can because she does not seem to smell it.
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At her age and with a diagnosis of moderate to severe dementia, your mom might qualify for Hospice care. Have you thought about that? That way an aide would come about twice a week to bathe her and of course a nurse would come once a week to begin with, to check her vitals and such. Just because someone is under Hospice care doesn't mean that death is right around the corner. My husband was under their care for 22 months before he passed away a month ago. They would also supply any and all equipment your mom might need and any medications as well, with it all be covered under her Medicare. Might be worth looking into. It would certainly help out you and your sister.
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I don't think Dementia alone can get you Hospice. My Mom lived 6 yrs after diagnosis. We called Hospice in when she was actively dying.

I am with you. Bathing wasn't too bad just I was afraid Mom would fall and being short, I had no leverage to get her back up. In the beginning I allowed her to wash herself but had to tell her where. I eventually did it myself. She sat on a shower chair and I sprayed her down. Then suds her up and sprayed her down again. It was the toileting I could stand. I wish I had known a couple of things when I had to do it. First, I didn't know the pull ups ripped down the side. When I asked an aide how she got Mom in and out of the bathroom so quickly she told me how to put clean pull ups on without taking off the slacks.

When it comes to trimming toenails, Medicare pays to have them done by a Podiatrist every 10 weeks.

No, there is nothing wrong with you. I really wonder where my RN daughter came from. You should hear some of the things she has had to do. Her take on it, part of the job. Nope, I wouldn't be a nurse.
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worriedinCali Oct 2020
A person can get hospice with just a dementia diagnosis. They can be accepted when their physical condition starts to decline.
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No, there is nothing wrong with being uncomfortable with cleaning your mom. I could full-on bathe my elder care clients, but something about washing my mom..I just couldn't.

I remember going up to her place one day, and she was standing next to her bed, stark naked and YB was sponge bathing her, as she held on to her bedpost. It was a most unsettling sight. It was really warm in there, so not a problem with her getting chilled--it was just--so weird. I mean, YB just got right down there in the undercarriage and all...he is an EMT and sees everything, but this was our mother.

Still bothers me, the image is burned in my mind. She actually said to me "Oh, come on in and visit with us". No ma'am, no thanks.

If this is not something you can do, please find an agency for care that does provide this. I would have happily paid anything to have mother have a good bath.

Luckily she recouped to the point she could once again take a shower sitting on a shower chair.
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cherokeegrrl54 Oct 2020
Oh mid, thank you for making me laugh out loud!! As i was reading, i was picturing the scene in my mind....and what you were feeling. Hope youre doing better! Love and blessings. Liz
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Listen, before the plague when we'd go visit my mother in her Memory Care ALF, we'd arrive at her room right after she'd taken a big poop and her room reeked. I couldn't even SIT in there, never mind help her toilet!

There's nothing 'wrong with you' that isn't wrong with the vast majority of us. Poop stinks. Personal hygiene is called 'personal' because it's something that should be done by the person herself, not someone else.

Be kind to yourself. You're human so accept your imperfections and laugh them off like I do.
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???

How did you manage over those four months?

Just about the difficulties with dressing - there may be tips and tricks (or, said cautiously, gadgets) which would make tasks easier for her. It is much *better* for her to manage independently as far as she can. Is there anything specific she struggles with?

As an example: one inventive older gentleman, with severe arthritis but living alone, hung his sleeveless padded jacket on a coat hanger from a cupboard handle. Then he could slip one arm through, turn his back, and have the other armhole at just the right height to get the rest on. He still needed some support (e.g. hanging the jacket on the hanger at bed-time!) but he didn't have to call for help just because he felt chilly.

There can't possibly be anything "wrong" with you because you find certain tasks off-putting and don't want to do them. It's a bit like saying "am I a bad person because I can't stand gardening?" Of course not. Some people are born to it, most people can manage some of it with or without enthusiasm, and some people can't stick it at any price. It takes all sorts to make a world.
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mally1 Oct 2020
Yeah, I'll clean the horse stalls, someone else do the gardening - weird, isn't it?
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I think I may have already mentioned this to you but as it came up on this thread I’ll repeat. My DH aunt, 94 with dementia has been on HH for several years. Recently when I asked about her getting an extra bath, they said it would be easier on hospice. I asked would she qualify for hospice. They assured me she would as her dementia diagnosis was not reversible. They would use that health issue to qualify her and provide her with her dementia medication but not her other routine meds. She can keep her geriatric primary for all else and the hospice doctor will treat the dementia OR she can use the hospice doc for all.
On the bathing. I’m not up for that either. I’ve wiped a few butts but not my forte. I noticed my mom’s grands did not have a problem when it was needed. Somehow I felt proud of them that they were unaffected but for me it was a nightmare.
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NeedHelpWithMom Oct 2020
I hated emptying the bedside commode. I have never been a big eater anytime in my lifetime but when I dealt with that, I barely ate anything.

Thank you for acknowledging those who did tough jobs in your family.

Caregivers don’t receive enough praise and sometimes they are not even recognized. I felt very taken for granted in my caregiver days.
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Everyone would rather not do any of the personal and hygiene care. It's absolutely disgusting and I'm a professional caregiver. We just do it though. Some people are totally not able to and they shouldn't. Everyone is not the same and everyone isn't cut out to be a caregiver. No one enjoys doing the gross parts though. So you're not alone.
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If someone throws up and I have to clean it, I throw up, too - how does that help?
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graygrammie Oct 2020
Exactly. I only add to the mess.
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It is very hard to do. I was the hands on caregiver for my mom for many years. I never got used to it. Perhaps some do it better than others but no one wants to do this. Some say that they do want to. I wonder...

Sure, I learned to go through the motions. That’s all. It’s hard for the parents and it’s hard for the child. I wouldn’t want my kids taking care of me.

My daughters saw me care for my mom and said they would care for me. I stopped them mid sentence and said, no you won’t!
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This is tricky, I know. But if you do help your mom under these circumstances, some people find that time almost sacred. It's meaningful to clean up your mom's poop even when you don't enjoy it. But after she passes away you'll have these impt memories. If Mom says she can do it herself, maybe you could say, "Aw, come on, I'm happy to help you." Maybe she's picking up on your reticence to help? And, are you male or female?
Both you and your sister will have these memories for a long time, and I don't think living with the regret that you didn't help as much as you should have will be helpful to you. However, if your sister is OK with the arrangement you have, then...OK. But it's gotta be hard on her as well...
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InFamilyService Oct 2020
I shower my husband's 92 year old aunt every week. At first she was hesitant and embarrassed. She has mid stage dementia but does not remember how to shower. We started calling it her "spa" days and now she looks forward to our special time together. Her hair gets washed and blown dry /styled. Lots of lotion and powder, perfume making her feel wonderful.
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I’ve yet to meet anyone who just loves changing dirty diapers, for anyone of any age. I did it for my mother in her last days because that was what was needed. I certainly wasn’t going to leave her dirty and wait for someone else to come.

I helped my mother shower, and she was upset about her reflection in the bathroom mirror, partly because of her mastectomy. I stripped myself, which helped to avoid getting my own clothes wet, and I told her that I felt much the same about how much better my daughters’ bodies looked, aged about 20. We commiserated together about the scars of time (mine were old appendectomy and a long abdominal hysterectomy scar).

When MIL2 was in care, the attendants who showered her on a shower chair, soaped up a face cloth and handed it to her to wash between her legs, then rinsed it out and gave her the wet cloth to get the soap off. That is a good method if you can.
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Caregiving is a hard job and can be unpleasant at times. My niece and I share the not so pleasant stuff. She handles the poop, I handle the urine, mucous, and other personal things. I do not like it but it has to be done. I would rather rub my mom back with nice lotion, comb and cut her hair but these not so pleasant things have to be done. Not everyone is cut out for caregiving and it is ok to decline. There are others things you can do to help your sister. Why not discuss other options with her such as shopping, errands, bills, washing her clothes. appointments. I can't handle vomiting, I would be in the bathroom throwing up. I would ask brother or niece to clean it up. I do other things they do not like to do, my niece almost throws up with mucous. Find something you would enjoy doing for your mom and go from there. Good luck.
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My wife is late stage FTD.
She requires 24/7 hands-on assist with every ADL by 2-persons.
She can't communicate, express,herself or even comprehend.
She doesn't know much of anything except that she is hungry and she hates to soil herself.
She will clench and hold it if not on a toilet and thus release when she can longer hold. She is expressionless, but you can see the defeated look.
And she does not like to be touched especially in private areas.
She has an automatic bidet toilet seat and a modified wheel-chair shower seat.
Commercial shower chairs have a toilet-like hole in the seat, the wheels are small and will run over feet, your or theirs.
We replaced a wheel chair seat with a plastic web seat that allows the spray to hit her entire undercarriage.
The wheel chair large wheels allow for easier transport and the front guide wheels are at a distance to not run over feet.
We wipe her dry with a front to back swipe of dry terry cloth.
Never wipes that do not absorb. They spread bacteria while claiming antibacterial.

No undies, No trauma of pulling down or ripping off pull-ups and then replacing them. No UTIs. Toileted every hour. Sits and sleeps on bedpads in case of a rare accident.

7 years of noninvasive care,
Again, no UTIs, she has dignity and we enjoy her presence.
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There is nothing wrong with you.. I helped my mom for a short time but when it becomes a daily thing I hired help. Now I am not miserable, sad or mad anymore you can only do so much, some more than others.
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Beatty Oct 2020
Very wise 🦉
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There is nothing wrong with you.

You can say no to personal hygiene.

Everybody has their line in the sand. My sister won't even push a commode!

My retired Dr told me he occasionally assisted his wife with her Mother (with dementia). Then they moved Granny in. This became assisted showering, assisted toileting, then anal supps every 2-3 days when all other milder laxatives failed.

When his son came to stay he thought he would look after Granny & give his parents a well needed break. He was told she needed a bit of help to eat & in the bathroom. When he found out the actual details, he sat them down, looked them in the eye & said No. Asked them what was their line in the sand? Was SO far behind them but they were so burnt out they couldn't see or remember it. Just looking at the next teaspoon, the next supp. Not at the big picture: which was Granny needed more help. More aides. (Actually went into SNF).

Sorry for that long winded story. That Dr visit ran well over & he apologized to me but it was invaluable advice. Look up sometimes at the big picture.

Do you & your sister need to reassess & get more help?
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Riley2166 Oct 2020
What is SNF??????????????/
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Nothing wrong... reason why there are sooo many professions out there. Caregiving is a gift so help in whatever you can... God bless u
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For my mom, I helped with toileting, but handed her the toilet paper and told her where to wipe. I did clean her with washcloth with gloves on. Gloves can get you past anything just about. I had to remove small pieces of hardened poop from her once, with gloves. It had to be done, so I did it. For washing, she really could not stand the shower so I had to do that with her on the toilet. And yes, you are saying to yourself, OMG. I do not think I could do these things for my dad, however. I keep thinking about it, whether I could do it if it becomes necessary, but that's a tough one. We did get my mom home healthcare aides through Medicaid eventually, but there were a few months before that happened, since it takes about 3 months to get that together.
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Mom never recovered after an operation. We suddenly found ourselves having to provide 24/7 care, including washing her in the shower. Even though we had palliative care help, we had to bath her a lot ourselves as she was incontinent. My siblings and I took turns. I had no problem doing this. I don't know how my brother did it, but he had no problem washing her either. She was mortified. Very sad. Perhaps it was his training as an Army Medic. I don't know. Mom has since passed, and I'm caring for my father on my own. He's getting weaker. If it ever comes to washing him, I (like you) don't know if I can do it. There's a mental block whenever I think about it.

Do you have palliative care for your mom? Would include a nurse, and someone to help wash her 2x a week.
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Don't feel bad, not everyone is capable of doing certain hygienic things.  I didn't think I could bathe my mother either and thank God my husbands cousin because she did caretaking as a job so she said she would be glad to help me out.  My mother loves talking to her and I don't have to feel "funny" about washing my mother.  She comes 2 times a week to bathe my mother.  Now I do take my mother to get her hair done about every 4 to 5 weeks (not much more needed because as they age they don't sweat much).  I also take her to get her toenails done about every 10 weeks.  IF your mother is capable of getting into a car, is it possible to take her to get hair/nails dones?  IF so......do it.  otherwise take your mothers funds and have someone come in 2 times a week to wash her.  I guess we will all feel embarrassed about having our children to take care of us hygienically.......so it would be worth having someone else to come in and bathe her.  I wish you luck.....but please don't feel bad about not being able to do it.
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kimbo56kdm Oct 2020
Wow, thanks for sharing this information. It literally helped me know how to handle these problems with my mom! She won’t let me help with hygiene n nails. Taking her to get them done is an option I hadn’t considered because we always did our own. This solves that because I know that will make her feel special!
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Absolutely nothing wrong with you to my opinion!

My 81 year old mom lives with us in her 2 rooms, we built her a brand new personal bathroom with a shower and everything is adjusted to her needs.

After cleaning After her several times a day for roughly 8 months, scratching feces from the wall, door knobs, night stand etc and situations where she showed me her poop covered hands I decided that’s it for me.

Since July a caregiver comes in 4 days a week for 2-3 hours, and man, she saved my life. Lynn is the most wonderful person I could wish for to look after my old mom.

I can only recommend having someone coming in for the special things. My relationship with my mother deteriorated big time, also because she sadly still treats me like an underling and servant.... but well. What can I do. I’m glad that her essential needs are taken care of in a professional and always kind and patient way.

Best wishes from Nova Scotia, Canada. ❤️
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Seaglass415 Oct 2020
I have some of those issues with my mom as well. I can’t start with that level of intimate care. Once I cross that line, there is no line for my mom. She will demand care that she doesn’t care that she wouldn’t ask of anyone else

Some of us grew up with loving supportive moms who were hands on and involved in our childhoods but that wasn’t me. My relationship with her wasn’t filled with hugs and she was never too keen on the idea of taking care of me if I got sick and that has made it hard for me to be compassionate but I am careful to be sure she has the care she needs.

I love my mother and get along with her better now then I ever did in my younger days but it’s harder to be sympathetic when you know you are being manipulated.

I never had a problem when I took care of my dad while he was suffering from Alzheimer’s but then he never asked for help he didn’t need or tried to use his illness to get sympathy.
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I struggle as well. Thank all for your support! Incense and plug in air fresheners at least help me a bit.
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There is nothing wrong with the way you feel. But you need to fine away to do it inspite of your feeling. Someone has to do those personal things and over time it will call a riff between you and your sister. Have you considered counseling?
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Isthisrealyreal Oct 2020
Wouldn't hiring someone to do this be more comfortable for everyone? I can't get past the physical reaction and it is embarrassing for everyone as I gag my way through this. My poor sister was mortified and I couldn't help it. So depending on what the situation is, I don't know if you can just find a way. I couldn't.
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We have a home health aide that comes in to shower my mom twice a week because 1. The shower is in the 2nd floor and her balance is poor and I’m not comfortable on the stairs with her and 2. If she needs assistance in the shower? She has no shame, but I do. I have no desire to clean her private areas because most likely she is very capable of cleaning them herself.
We’ve been down this road before so I keep my distance. When push comes to shove, I’ll do what I have to, but it’s hard when you know you are being manipulated.
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O, I felt nauseated and terribly sad reading these comments. i hope and pray i never become demented. None of my ancestors ever did until just a month or less before death.My por daughter no longer thinks nor speaks rationally and sometimes even incoherently. however, she is not incontinent and she can shower with only a little assistance.Nevertheless, I refuse to be her caretaker. She is in an excellent facility where i can visit her weekly and bring her anything she thinks she needs.I knew i could not and would not try to be a caregiver at age 86. now, I know I could never ever be a caregiver. May God have mercy1
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You are not alone, I do everything for my Mother she has LBD going on 4 years. She can’t walk or stand without me holding her up with the walker, I put her in front of me grab the walker and hold her up and steer she basically just slides along. I dress her, diaper, feed, cut her hair, (that was my Profession before I had to leave to be her 24/7/365 caregiver) I even have to help her push out poop, and wipe her. I did try to cut her toenails but they are very thick so now we visit the doctor and I did give her a bath but that job I just hate so she has a bath with a home health aide. I am 65 years old she is 92 and still thinks she can control me, she would like me to do everything for her, I told her I do enough plus she has lived under my roof now 30 years.
so you are not alone with your feelings about bathing your mom.
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There is nothing wrong with you. Multiples of people feel this way. I would no more be an engineer than I could be a rocket scientist building a moon ship. Some things our minds and bodies just can't tolerate well. Yet in other areas, I would excel beyond belief. We are not all cut out to do certain things. I don't think I could handle this too well either. Don't feel bad because you are normal. Try to find someone who can/will do these things and if that is not possible, perhaps it is time to think of placing her into a facility where she is cared for. You cannot constantly upset and berate yourself for not being able to do certain things.
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There is absolutely nothing wrong with you! We all have things that just gross us out. For me, it was earwax and toenails - not that I loved any of the other personal hygiene either. I made sure that both my husband and my mom had regular podiatry and ENT appointments so I didn't have to deal with either issue. My Mom was a RN but I definitely did NOT inherit that gene!
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