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My mom is bedridden and in hospice (at home) care. I cannot afford a full-time caregiver, so I participate in caring for her. The issue is that she is bed-ridden - as of recently unable to stand or walk, but insists on being seated on the commode to relieve herself. I have purchased everything I can such as moving belts, etc., but am experiencing constant back pain moving her and I fear that I won't be able to do this for long.


My mother has Alzheimer's and does not seem to understand it when I tell her to just go in her diaper and that I will clean her.


Any advice?

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Tardigrave: You should ask what the hospice nurse suggests.
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You mention that you have transfer belt and other tools. Did you work with an Occupational Therapist to learn how to safely transfer from one surface to another? Positioning your body and the patient's correctly should prevent stress on joints like the spine.
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Call Adult Protective Services (APS) to get her evaluated for placement; if she does not have finances for end-of-life care, please apply for Medicaid when you meet with the social worker. You cannot physically or financially be held responsible, so let the professionals navigate the system for an appropriate placement.

Now is the time to end your involvement so that you don't end up in a nursing home.
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Would a Hoyer lift help you? Maybe you could rent or buy such a thing.
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First I would stop calling them diapers and use the term underwear or disposable underwear, incontinence underwear, though it doesn’t sound like she is actually incontinent. This brings me to my next thought, she may be understanding what you are saying she just can grasp why you are telling her to go in a diaper. If she feels the urge to go, can express that and can hold it for any period of time it no wonder she can’t comprehend, you are telling her to do what she has fought not to do for how many years, something everything she knows has told her is bad. If the issue is getting her onto the commode from bed maybe offering a bedpan when it’s only you and making sure at least once a day there is someone there (hospice should provide) to help put her on the commode so she can stay regular. If this isn’t working and there are accidents on the bed pad (always have a bed pad or two) use the disposable underwear to prevent accidents on the bed and still offer the bed pan when you can get there in time with it. You may find that she becomes less able to hold it or maybe less aware she has to go, pee in particular and she gets used to the special underwear so you just need to change her regularly to prevent leaks but rather than training her to use them tell her your just using them in case you can’t get her to the commode or on the bedpan fast enough. I would be surprised if she didn’t know what a bedpan is and probably even used one at least after giving birth to you so this may be easier to introduce than the underwear as an option for relieving herself. Maybe have the Hospice nurse or care attendant show you how to do it most discreetly.
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I had the same problem with my dad. Since we were potty trained as children,
going in your pants is just taboo. Very hard to retrain someone with dementia to do that. Have you tried a bed pan as a compromise? At least maybe she’d feel she wasn’t doing it in her pants. Later on when my dad started loosing consciousness then we no longer had this struggle.
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My husband has dementia, is bedridden, and must use a commode to defecate. He cannot do that in bed. It is purely mechanical: sitting up relaxes the anal sphincter and releases the waste. That is very difficult to achieve in bed. And very easy to clean up. Much easier than in bed.

I hire a caregiver to help move my husband to the commode for this purpose. One person cannot to do it alone. Please hire help.

Once you get that system in place, you’ll experience less back pain. I do.

Good luck.
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It's not easy caring for a loved one, and one can easily become frustrated and resentful, especially if the mind is not right anymore. Understand that she is not intentionally trying to misunderstand you or be defiant. In many ways she is not the person you remember, but some of her is still in there. And so are certain habits. Try to take a step back and look at the person who once took care of you. Look at her in that way, as if looking to your little child. Sitting up to go to the bathroom is something your mom has always done. Imagine how difficult it is for a patient in the hospital who suddenly has to use a bed pan because they are not allowed out of bed. Some people cannot go because it's weird and embarrassing. It might be this way for your mom as well. Relieving herself into a diaper can cause skin breakdown it it's not changed right away. I suggest to follow the advice of the other contributors and see about getting help through hospice. I'm actually surprised that they haven't suggested a Hoyer lift. And try to laugh. I remember when my grandma was demented and the things she did, like starting a fire in the storage drawer of her wood stove. We took care of the issue and sat down and laughed, she included.
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Have you heard of the Pure Wick female external catheter? It is a relatively new product we’ve been using in hospitals for a few years. I recently saw that there is now a version for in-home use. I have no idea how much it costs or if it is covered by insurance but it has been an amazing step forward for nursing and it is worth looking into.
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Laineyisat Sep 2022
Great for urination, but doesn't help with the pooping!!!!
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Be happy you don’t have to change diapers. If it is too much for you get in home care
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WellPreserved Sep 2022
Many home-care providers will not "do pooh". I think what is the point of coming out to our home if they won't do head-to-toe
as needed.

I have made a good living off of "scooping poopin" as an RN in my younger years. Many co-workers would not dream of it.

I had no plans for one of my children being "bedridden." At 72, it is hard work, but, I don't mind. (But that's me. My sisters would NEVER ever clean up anyone.)
BMs also is all about the angle. Being able to sit on a commode without someone having to manually dig out hard stool out of your rump help maintain some dignity and independence.

...I'm posting a comment on Hoyer lifts seperately.
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If she is on Hospice ask Hospice to order either a Sit to Stand or a Hoyer Lift. Either will allow you to get her out of bed and onto a commode.
Hiring a caregiver that can come in to help would be an option.
Hospice can also send a Volunteer to help. While the Volunteer can not do "hands on" care they could help with other aspects like laundry, light cleaning and just sitting with her while you run to the store or just take a break.
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When my husband was completely bedridden for the last 22 months of his life, I had to hire an aide to come in the mornings to put him on the bedside commode so he could poop(he already had a permanent catheter at this point). She was not with an agency so I only had her here for an hour or so each day. She used a gait belt to get him up and on the commode and then she held him up while I cleaned him up. It was SO much easier than trying to clean him while in the bed.
You need to be careful what you wish for, as having your mother pee and poop in her diapers can create a whole lot of other issues that can be quite painful for her, so perhaps you need to ask hospice about getting her a Hoyer lift. They can supply that and Medicare will cover the cost 100%.
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Won't they supply a patient lift? I get that rules in facilities state that it needs two people to use them but caregivers at home do it solo all the time.
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WellPreserved Sep 2022
What Medicare and Medicaid pay for varies from state to state. But, no one is going to "provide" a lift on a "whim" or what ever. (Bear with me as I share a bit about our personal insight.)

I've been bucking for an Electric Hoyer for over years for my 250-pound very tall "patient". I may as well be pulling teeth that are healthy and intact without anesthesia. This is my biggest stressor right now to say the very least. My son's manual Hoyer now has a non functioning wheel.


Every facility has the policy of 2 or more trained caregivers to transfer with an ELECTRIC Lift. But it seems like no gives a "crap" (please forgive me) that elderly caregivers have no choice but to transfer a disabled love one alone. Or the other option is to send them to a home. (We won't do that as long as I can still get up and walk.)

I'll spare you the grief of issues with DME company we've been having. Let me tell you all of the medical supply companies are short staffed for trained techs who can evaluate and get all of the paperwork done and have supply chain issues. If not, you lucked out.

We have had to go around the DME, to get approval from the disability 'waiver' supervisors to purchase a new Electric Hoyer on our credit card from all places, Walmart.dot.com.

Then we will have to submit the bill for some reimbursement.
The price could be anywhere from $700 for a manual to $1,000 to $3,000.

A Lift has to be a Medical Necessity. Generally for home care you can get approval with a doctor's letter that includes a diagnosis and a letter of Medical Necessity. But, for home use, insurance(s) only want to pay for a manual lift. That means you hand pump the hydraulics to raise the patient who may or may not be comfortable in a sling of their size.

Most loan closets will NOT accept Lifts to lend due to the size and the liability. Yes, they can be rented, if available.

Agencies generally refuse to allow staff to use a Hoyer unless it is electric. So even if we can every now and then post-hospitalization staff is limited in what they are allowed or willing to do.

My son medically does need an electric one to replace the manual. Some of the reasons is due to my age, 72. What company wants to pay an extra one or 2 thousand dollars if they don't have one? They don't. There may be a cap on the amount of money they spend.

I would have mom try out a ride in a lift before you spend any money. With that said, I know that getting her out of bed onto a commode is backbreaking. I've been a caregiver for much of my life. I did not anticipate my once athletic child losing body function.

Try contacting your local Agency on Aging to see what resource options are available to you.

I'm so sorry my note is so long. I'm a very experienced, but exhausted and frustrated caregiver who loves her "patient" dearly. But the tasks are mindboggling every day even for me.
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Believe this or not, some advanced dementia patients CANNOT LEARN to release into a diaper.

My grandmother, who was visually impaired and totally nonverbal but still ambulatory for the last 4+ years over her 10 year illness, ALWAYS needed to be in her bathroom and on a ceramic commode, until she was ultimately hospitalized in the last two weeks of her life.

Assuming that she herself is without funds, if you are willing to seek outside sources of information it’s probably important to be very specific about her physical and financial needs, and to try to be open to any information you receive.

You state that you “won’t be able to do this for long”, and taking good care of yourself is a part of her care that you may be allowing to supersede the good care you take of yourself.

There are some situations in geriatric care that don’t result in good or even “satisfactory” solutions, and in such situations, you need to be looking for “the best you CAN do”, rather than the best for Mom that is harmful or dangerous for yourself.

Hoping that you find some manageable solution(s)……..
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Tardigrave I am so sorry you are going through this. It is so hard. Ask, persistently! for help from the hospice nurses. Tell them you need help. Ask for a social worker visit, even if it is just a phone call. Ask for suggestions and ideas. I wish I could offer you more. Just be persistent and outspoken, it’s ok. My prayers are with you.
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I would want to be on the toilet in that situatuin too.

My opinion is that incontinence pads/underwear are for incontinence. Not for caregiver convenience. But if mobility, lack of caregivers or lack of euipement prevents getting to a toilet, then a bedpan would be next best.

Caring for a bed-bound person is usually more than a job for one. What plans have you got to get more help?
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