Son needs advice on how to toilet, shower and change clothing for bedridden Mom. Any suggestions?

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Son needs advice on how to toilet, shower and change clothing for bedridden Mom. Any suggestions?

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This is how my mother always advised me on getting through something embarrassing or humiliating -- "Close your eyes and think of England."

The origins of the phrase is supposedly about young, innocent women being advised how to handle sexual intercourse on their wedding nights, but my mother and I have found it to be a useful thought in many cases -- gynecological visits, childbirth, and these days, the pain that comes with having a leg wound tended to by a wound specialist.

My mother has dementia and has been hospitalized since mid-December with a septic wound. I'm not allowed to be with her, and she's understandably become combative with the nurses who are trying not to hurt her but are nonetheless inflicting pain anyway. I finally told the nurses to say to my mother, "Close your eyes and think of England," and they report success.

With your mom, a phrase like that might be the trick to mentally remove herself (and yourself) from the embarrassment of dealing with the tasks at hand. It's code for "Yeah, this is awful, but we'll get through it together."

Good luck.

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Well spoken MJ, if I arrive at the place of caregiver I know my Mom will like this phrase! Gotta keep a sense of humor I am sure to do this work!

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Clemente, Is your mom getting any help with her mental health challenges?

It is very normal for most folks (and elders especially) to be disoriented and confused when in a NEW unfamilar setting. But if mom is agitated and disoriented after several weeks in a new setting with attentive and caring staff, it is time to look to a geriatric psychiatrist to prescribe medications that will help her adapt.

It is not up to you to sacrifice your life, future and career to provide 24/7 intimate care for your mother. She will get better socialization and mental stimulation in a congregate setting. She will get care by trained staff. And you get to visit as a loving son,

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Hi, Clemente. You mention “our family” wanting to bring her home, but is anyone else realistically up for the task besides you?

Also, you mentioned getting in-home help from Medicaid. My limited understanding of that is that Medicaid doesn’t pay for full-time caregivers at home in general. (Some states have Medicaid programs that can pay a small amount for a limited number of hours to a family member or friend to provide some care.) Apparently NY or maybe just NYC is an exception.

What state are you in? Hopefully people knowledgeable about your particular state would have additional information for you.

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I know personally of one man who had to cope with this without warning or previous experience when his mother was sent home with C diff.

I saw him the morning after. He was in a bit of a state of shock. But his mother was clean and comfortable, and there he was to tell the tale, and in a way I think the shock was that he'd been faced with this challenge and had conquered and couldn't quite believe he'd done it!

There are people who can cope, and there are people who can't cope - and I could tell some tales about them too - and you don't necessarily know which you are until it comes to the crunch.

Here's the key question: what does your mother think? Is she used to receiving support with her personal care from males?

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I asked Mom once and she said adamantly no as to if she would be OK for me to clean her. I am not sure if she is cleaned at the Nursing Home by any males or not, that's a good question which may give insight into whether she may change her mind.

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One person cannot do that alone. I did this for two weeks and it was hard when my mother first became ill with what led to her being hospitalized the first time in this process I'm going through. Thankfully I had the assistance of her close friend who lives next door, who is a certified, medical technician and nursing professional, and had personal experience of caring for an incapacitated son for thirteen years, who she moved back home early on into his care. You're going to need to be trained, by competent caregivers to re-position her, bath her in bed, and deal with her toilet needs. More than likely, you'll have to have a portable toilet right next to the bed, and are always going to need a second person to help with these tasks. Plus you're always going to need home care professionals on hand at various parts of the day, with back-ups on call from the homecare network. If you have adult siblings, you will have to get them onboard to come, assist with these duties, and relieve you, because you're going to need it. You don't realize how quickly you can crack up, and just burnout, and break down, no matter how much resolve you head into this with.

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Thanks, and your answer I see has a common thread in many other discussions like these, that this work is extraordinarily hard to do over any length of time.

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It doesn't sound like you should be bringing her home. Someone cleaning an incontinent patient is going to have to look at the involved areas to be sure they are clean. Was your mother incontinent before going into the nursing home or is a recent decline? Hired home care would have to be in place nearly 24/7 to adequately deal with adequate incontinence care.

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Thank you, and yes, family is aware that Mom will need 24/7 care at this point for the incontinence. Mom was partly incontinent before the nursing home but now is completely so.

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If your mom is bedridden, how will you get her to the toilet, carry her? My husband who was completely bedridden for the last 22 months of his life, in our home, was also under hospice care. Since your mom is bedridden she may qualify for hospice. I would certainly look into that. They will come a couple times a week to give her a bed bath. I had to hire an aide to come put my husband on the bedside commode every morning so he could poop. After he was done, she would hold him up, while I cleaned him up. Worked much better than trying to clean him up while laying in the bed. There is NOTHING easy about caring for someone who is bedridden. I sure hope you think long and hard before removing mom from the facility she is in now. You will be giving up your life as you now know it. Best wishes.

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Re the possibility of hospice help, I am assuming this is a pay for service correct? How would help from a hospice be any different than simply hiring an aide to do this for Mom at home?

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I do not believe that one person can care for a bedridden patient 24 hours a day.

Do you work? Do you hope to retire someday?

We are happy to listen to the complicated backstory that is leading your family to consider taking mother out of the NH.

I think that there are other solutions to bringing her home.

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Goal is to get Medicaid to take care of Mom 24/7 at home, but if that falls through I need to be prepared to have a backup plan one of which could be 24/7 caregiver, or maybe just 12 hours/day if Mom can sleep through during the night which is a possibility.

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I’m not sure why your family would be choosing to bring her home now if she has already been settled in a nursing home, presumably because she is bedridden, since Jan but I certainly understand there are likely good reasons. I would however urge you to consider both the pluses and minuses of doing this, there is really no way one person even a trained health care worker, can do this alone full time for any extended time as well as the team of professionals she has in a NH setting. That said there is a difference between what being around “family” and professionals offer and the pluses and minuses of each are a hard choice to make.

You also mention that “our family” is hoping to bring her home which sounds like there are other family members involved and part of that decision, are they part of the solution and care team if you bring her home? There are many parts of caregiving that are a new level of intimate for a child caring for a parent, a son doing for his mom and if those jobs could be spread out between family members as well as perhaps some in home professional, unrelated care help, maybe someone that comes in a few times a week to shower her, change the bed and give everyone a care break. I use some examples here but it all depends on the patients needs so there are many variations here some that insurance may cover even or depending on the state maybe a program designed to allow LTC patients to be cared for at home and her doctor or the facility should be able to order an evaluation that will include a social worker or nurse coordinator who can give you ideas about how to provide what is needed to provide the best possible care for everyone.

If you are choosing to bring her home for yourselves as well as her happiness, kudos to you I totally understand the drive, just make sure you remain open to the possibility that in the end moving her might not be the best thing for her or you. If your mom is aware of things having you clean her up, cleaning up after her it’s going to be as hard on her, maybe even harder, as it is on you and for some the loss of dignity, if you will or the facade of control over those things is just too much and good professional “strangers” often have the skill and removed standing to make that at least tolerable for our loved one’s. Try to keep that in mind as you make this decision too. Again each situation is different and I can’t tell you what is best for you, your family and your mom I can only urge you to weigh it all out as you face these tough decisions and tell you my heart goes out to you.

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Thank you very much, it is super clear that Mom does so much better when she is at home than the times in recent years where she has been out of the house and in rehabs, hospitals, nursing homes, etc. Her mental health struggles greatly out of the house, but once back in the house she is so much better in that regards.

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I have to ask, if mom is bedridden, isn't it going to be extremely difficult to get her to sit on the toilet with a bidet arrangement, especially if her "private parts" need to be cleaned multiple times per day? Even if it's possible to get her to the toilet/bidet so often, the poor lady is going to get exhausted having to get up and down so much just to get cleaned, when it could easily be done in bed (for urine at least). For showering I second the idea of using a shower chair or commode chair with the bucket removed. However, commode chairs aren't really designed to go in the shower so would need a non-stick mat underneath the feet.

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You are probably right, and getting Mom onto a bidet several times a day is seeming more and more unfeasible as I think about it because when she is moved in the nursing home (Hoyer lift) it is painful to her. I am hoping beyond hope there is a more automated cleaning method that someone came up with, perhaps automated cleaning system like bidet I mentioned but built into her bed so she doesn't have to be removed multiple times a day which causes pain to her? It just seems that for all the technology/science breakthroughs and inventions of equipment in the health care field that is is hard to believe staff at nursing homes still in this day have to manually clean great numbers of residents. I know it sounds a little Rube Goldberg, but I could envision a hospital bed with a hatch under the buttocks area that would be opened when the patient needs to be cleaned, and have a bidet that would then clean everything up and then a warm air dryer would turn on for a few minutes. All that would be hopefully left to do is to put on a clean diaper. Considering the egregious nature of manual cleaning of huge numbers of residents daily in nursing homes in America, I can't believe no one has found a way to automate the cleaning process in this day and age. Also the cost of the labor alone to change bedridden residents multiple times daily, with nursing homes often having hundreds of residents, must be very great and impact bottom line of these NH's. The great question remains, is there not a good market to create such a device for these reasons. Does such a device not exist for use in the great number of hospitals, NH's, etc? Compared to the amazing things scientists and others have created which do vastly more complex jobs, why not an automated cleaning system for residents?

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While a bidet is a useful tool for those who are continent it won't work to clean up messes from incontinence because they aren't going to be quite so neatly contained to one area, if you've ever cleaned a baby's diaper you will understand what I mean. As caregivers we find ourselves doing things we never would have dreamed possible, I guarantee you that no daughter ever felt prepared to do those intimate tasks either.

In my opinion there is no way to clean up your mother with your eyes averted, you have to actually see what you are doing so that you can be sure everything is adequately cleaned and there are no sores or rashes developing from moisture or chafing.

I'm not really sure how you hope to accomplish showers if she is truly bedridden, aside from how you are going to be able to physically get her to the bathroom and into a shower often people at that stage aren't able to hold themselves upright on a bench or stool, and her ability to wash herself will be very limited. You might consider hiring someone to help with this task once or twice a week.

As for tech - there are special lifts, shower chairs, wheelchairs that can help with daily life, but none of them are cheap. Many (most) homes are not designed to accommodate the disabled so modifications might be necessary there too - wider doors and hallways and an all one level roll in bathroom that is large enough for her wheelchair and/or a wheeled shower chair. I think your best bet there would be to work with an OT/PT who can come to the home and guide you.

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Thank you very much for your thoughtful comments, I can see you have knowledge of the challenges that exist to do the things I may need to do if I am called upon to be the caregiver for Mom at home. Please see my comments to NewbieWife above regarding automated devices to clean Mom so I would not have to manually clean her. Have you heard if any devices exist that are used to clean #1 and #2? Though the bidet may not work as Mom's back always hurts, and lifting her out of bed onto a toilet may not work due to pain of moving her, is there not existing another automated solution for cleaning at home on the market, or used in hospitals, NH's, etc?

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I have to prepare myself for the possibility of taking care of this aspect of Mom's care at home. I pray it won't come to this, but I have to know in advance if there is a way out if I am to become Mom's sole caregiver. That's why I am hoping that a bidet that can do the things I listed may be a way out of this seriously challenging issue. Or some other answer.

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No one but you, your family and her caregiving team can know her level of ability or disability to do the things you are hoping she can do. If you can successfully invent a device that can do all you hope, you will become a billionaire and be able to hire someone to care for your Mama. The truth however, is that every person as they decline will become bedbound, and incontinent, and require total care, which will eventually mean changing her in bed and bed baths. No machine can replace the human touch and that care can communicate a lot of love. It IS hard, and awkward and embarrassing for you both at first- but you’ve entered a new phase in her care. The good news is that as she physically declines, she often will mentally as well- becoming more child like and dependent. Respect the person as an adult, but think of taking care of their needs as you would a child. It’s something that just has to be done for her to be well taken care of, and taking care of her well is how you love her. As to options, there are very few. You can place her somewhere where someone else does these things for you there, you can hire someone to help you, in your home which is also expensive- but a wonderful option if you and your family can afford it - Or you can do it yourself. For management of urine only, they have invented a device called pure wick which is an external catheter that is placed between her legs and sucks up urine into a canister. The device is about 800 dollars and is not covered by insurance or Medicare. But it does not handle stool and even with the device- she will need to be cleaned regularly. This kind of care is laborious but simply what has to be done- especially if you want her at home. My best advice is to hire someone to manage it- or, and I say this lovingly- adjust to the idea that this is the new normal and what you must now do to care for your mom. She simply will have to have this kind of care and it can become a new way to love her by meeting her needs. Everyone here is experiencing the same struggles. Much luck to you.

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Clemente, do you really want to do this? Besides the hygiene and modesty issues, living with and taking care of a bedridden person is very hard. It’s physically hard and emotionally draining, even for a kind, good parent (such as my paralyzed father, who I take care of with my sister).

What is the backstory here, if you don’t mind elaborating?

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The backstory is too difficult for me to go into, bottom line is I am in a situation where I may have to take care of Mom including this difficult situation.

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Very few people like doing this. It stinks, is disgusting and embarrassing. It is relatively recent that men were even prepared to do it for their new-born babies. No women like doing this for their mother or for their father. Forget about the ‘private parts’ stuff. Unless you are a virgin yourself, you already know all about them, just like most women know all about men’s paraphanalia.

A shower chair or toilet set raiser with a hole in the bottom should let your mother wash her own privates discretely. That is what happened in my MIL’s nursing home. A shower hose attached to the shower outlet should let you wash away feces without too much contact from you.

There are many many men who have collected their courage and risen to the occasion of doing what needs to be done. If it helps, peg on the nose, very dark glasses as well.

Have courage, this is the ‘new frontier’.

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Thanks for the straight message, I am really getting a reality check here on this question with answers from many people, and that's exactly what I need to determine what I can do and what I can't.

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Son needs advice on how to toilet, shower and change clothing for bedridden Mom. Any suggestions?

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