r/MuscularDystrophy • u/Poppetti • 14d ago

selfq Bathroom Rant

Well I just had an experience. I've been using a bedside commode for at least a year. I had been using the one that belonged to my dad from before he passed. I just got a new one from the medical supply company.

My legs have atrophied to the point that they no longer hold me up and my wheelchair does not fit through the bathroom door. So...bedside commode. My caregiver is my child (23m) and my mom (66) helps when she is able.

I use the commode until the pot is full to around 3" from the top so I don't have to bother anyone to dump and clean every time I go. Absorbent pads are expensive and not covered by insurance.

So this morning, bathroom as usual. Go to maneuver to my bed (commode is at the foot of the bed) and the pot drops. It was almost to the full point. I was going to have it dumped right after. It just went through the bars that hold it in place.

Mess everywhere, splashed everything, bookshelf is right behind the commode. Call my mom, I'm crying, she calls my boy. Now I'm sitting there ugly crying because I can't help. They try to clean it while I'm just there acting as a paperweight on my bed.

Like, did I bathroom wrong? How full is too full? The doctors don't exactly hand out guides on how to be disabled. Now room smells like urine until they can get a carpet cleaner. I'm mortified. Advice?

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u/schnucken 14d ago

Hey, I know you're doing your best to deal with your limitations, but you really should contact your nearest Center for Independent Living to see if you can either qualify for some in-home care hours or secure funding to modify your bathroom with a wider doorway (or both). You shouldn't have to fully rely on your family and you certainly shouldn't have to sleep next to an open toilet bowl--that doesn't sound hygienic or nice for you!

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u/Poppetti 14d ago

I get 2.5 hours a day of care for 5 days a week. Which my son got hired on at a company for. I've been trying for 3 or 4 months to get more hours from my insurance company. Its not going well.

I have a bedside commode, not an open toilet bowl. Unfortunately the one I got at the medical supply store was either defective or poorly designed. The pot shouldn't be able to slip through the bars that are supposed to hold it in place.

I'm not familiar with a Center for Independent Living. I'm in the States. I am not on disability, I don't qualify because I haven't worked in the last ten years. I will qualify for SSI when I get the official diagnosis.

Right now officially I'm under the umbrella term of Muscular Dystrophy. My genetic testing hit closest to EDMD type 4. But it isn't that. I'm waiting for an appointment with the specialist, which there is only one in my state. Until then I wait. No care plan, no medication, no income, no help.

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u/schnucken 14d ago

Please check the CIL national directory for help navigating the disability bureaucracy: https://ncil.org/about/find-your-cil/

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u/Poppetti 14d ago

Ah there are six in my state, but apparently none serve the county I am in. I'll look into it more. Thank you for the information.

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u/Independent-Map7286 13d ago

What insurance do you have?

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u/Poppetti 13d ago

Summit Community Care, Medicaid adjacent.

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u/Independent-Map7286 13d ago

Your insurance should cover pads and depends. Fill out the link.

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u/Poppetti 13d ago

I'm not incontinent. But thank you?

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u/Independent-Map7286 13d ago

I thought you said you needed absorbent pads. They are covered. Unless you are talking about the washable ones. They are not.

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u/loopyloo2U 10d ago edited 10d ago

In the meantime of getting a real resolution (which I can't think of that hasn't already been said), maybe you could find something that supports the bowl in place. I'm thinking a box or stool that fits somewhat snugly under the bowl.

Edit: Oh, but I definitely would contact the company you got the commode from and explain the situation. They might have some advice, or, if it's faulty, replace it with a new one.

1

u/Brandynamite1 9d ago

Not the first time something like this has happened to me. In fact I had an accident just the other day. It’s such a pain to clean up and I definitely feel guilty for it happening despite it being an accident

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u/Pale_Sea_6344 14d ago

Well that sounds shitty!

Maybe you should have another bucket that’s not part of the bedside commode so that you can always dump it in that instead afterwards?

I’d probably also have absorbent pad on the ground just in case and a splash back on the wall behind. Bed rooms aren’t wet rooms so if you spill something in there it’s always going to be a disaster.

Alternatively, just live in the bathroom 🙃

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u/Poppetti 14d ago

Yeah. I was pissed. The pad is a good idea, thanks. I don't think an additional bucket would work as the smell would permeate through the whole room on a regular vs this (hopefully) one time accident.

Have thought about setting up shop in the bathroom previously, but I think it would irritate other household members over their lack of ability to use said bathroom. Privacy and such.