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

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.

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,

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.

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?

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.

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.

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.

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.

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.

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.

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.

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.

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?

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’.