Can't get off the toilet independently-what now?

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I'm not sure If we're allowed to mention a product by name. I am paralyzed from the shoulders down. I use a bed pan when my caregivers are with me. I Saw this product on a pop-up add, I didn't believe it. I did some research and although it was pricey I made the investment and it works flawlessly. Google women's external catheter. It should be the first add that pops up. You will need to be able to press a button on and off. I could no longer and my sons rigged an extension so I can use my chin
 
Dee Dee, if you’re talking about the Purewick catheter, there’s more discussion about it in this thread: Too disabled for ADA? I’m glad to hear it’s working well for you. Do you use it all the time or just at night? Can you detach from it to do other things?

If you’re still able to stand using a walker or by other means, a female urinal positioned under you (by an assistant if you don’t have good hand function or need your hands to hold on to something) is really practical, especially if getting on and off the toilet is too difficult. I tried the Advantage system but had too many accidents due to improper placement. I’ve had best success with an inexpensive wide mouth jug (look up female urinals for ideas).
 
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I can't stand any more. If you have mobility, it really is just a tube hooked up on both ends. I have no idea how it would feel walking because of its positioning. I use it when I am going to be alone for a few tranquil hours. My son took apart the switch on the machine and extended the wiring to a switch I can turn on and off with my chin. It is very liberating, not announcing when you are in need of the facilities. I hate what this disease reduces us to.
 
I have a similar problem, and have resorted to using a urinal for everything except that hoped-for once-a-day big job, for which my husband still transfers me to and from toilet with the help of a Vive transfer belt. The female urinal is not perfect, requires being able to unweight your bum a little and really get it jammed in there. I drive my chair right up to the wall with a grab bar on it, tip forward as much as I dare, and hope ive got it in place. I have a diaper on, opened up, so any errors in placement aren’t catastrophic. But it does get harder to accomplish and sometimes doesn’t seem safe. I was supposed to move into an assisted living by now, but they aren’t letting anyone move in now. I still can use my arms and hands fairly well, but dread what happens when they give up.
Clothing is a big factor too, but for me I just gave up on pants. I just wear a t shirt or tshirt dress and a diaper, makes it much easier for those urgent occasions.
We haven’t used any outside help yet, and I’m confused about how it’s paid for. I thought Medicare would pay for some, and the ALS Association has said they will pay for some too. I’ve even heard of people who have family members being compensated for caregiving. Can anyone straighten me out on how this works?
 
One of you Pals has a Supra-pubic catheter that you’re happy with, and to me that sounds like a healthy option. It sounds like a lot of us limit fluid intake to avoid the frequent need to pee, I’m definitely guilty of that. I feel like being fully hydrated might make us feel overall better, if peeing wasn’t something we were trying to limit. I will be looking into that as soon as things open up a bit. Any advice or comments would be appreciated.
 
Medicare pays for skilled services. If you have a nurse coming for some reason like medication monitoring or wound care or something you can usually get an aide for bathing but not for extended periods. When the need for the nurse expires the aide goes

medicaid is state administered so varies. In some states yes family or friends can be compensated and custodial care is often available for a variable number of hours according to need and state rules.
ALSA grants are also location specific. Some are more generous than others but I think the hours are more in line with respite than a longterm solution most of the time. You would have to check in with your ALSA. If you heard about the Massachusetts program to give a large amount to an individual that was really designed to benefit a single person to whom people wanted to donate and the program died with them
 
I too now have difficulty toileting. Have an ADA toilet with an elevated seat with hand rails, but unable to now lift myself off the toilet due to weakness in my legs. My husband has to lift me up but he is not very skilled in spite of repeated training by our Parish RN who gives me Radicava Infusions, and my Comfort Keeper lady who is here 3 hours, 3 times per week.

Bought a female urinal which I thought would be perfect—pull the power chair up to the toilet, stand up with the power chair supporting my legs and urinate. Works perfectly well except my husband can’t hold/position it correctly, so I can only use this when 1 of my 2 females are here.

Have ordered a Duralife elevated bedside commode which has a maximum height of 28”. I can stand up independently from my power chair when the seat is 27” from the floor. Hoping and praying this commode is at least a temporary fix. Have to limit fluid intake!
 
Hi, I am very concerned about you all, still transferring to a toilet as you are getting weaker, and putting yourselves at greater risk of both energy expense and falling. I use a bed pan, in bed, recliner or wheelchair. We cut the diapers in half, trimming the excess plastic around the outer edge. The result is a pad that fits perfectly into the bed pan, absorbing everything for quick easy no-spill clean up.
 
I also worry about restricting fluids. Proper hydration makes you feel better in every way. I understand the issues around females not being able to pee but I don't think restricting fluids is the answer. The answer is probably different for each phase of progression and, unfortunately our budgets.

If we all had unlimited financial resources, we'd all still die but it would be a heck of a lot easier.
 
I'm in full agreement - restricting fluids is never a good strategy, and taking risks, especially when alone is really to be avoided. Falls can be so life changing. My Chris was in awful pain for the rest of his life after one fall because you often simply will not heal properly with muscles that are wasting.

That idea Dee Dee describes is a bit brilliant!
 
Hello all! I so appreciate everyone's insight, advice, experience, and concerns.

I just finished my local ALS support group meeting via ZOOM and I brought up this very same question for any local suggestions. Here is one:
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Has anyone had experience with this lift variety?
 
“Has anyone had experience with this lift variety?”

No, but it looks like a temporary fix. If you can get one on loan, that would be great. Eventually your progression will “outgrow” it.
 
Agree with Karen, it looks great! If they loan them, get one and try.
However, it's really important now to get solid plans in place on how you are going to handle toilet situations as your strength continues to decline. It's so hard to face, but the more you can plan and put in place in advance, the less likely you will find yourself in an awful crisis.
If you get that model, please let us know how it goes for you :)
 
Karen and Tillie...my thoughts as well. Why bother spending the money for a short term fix? I needed to check everyone's ideas.
 
Dear Blitz hard decisions now with the situation. You say you are alone in the afternoons. You don't want to fall. As a first step my PALS used depends.

Men have it easier vis a vis urinals! Not fair but it is what it is. My PALS said the depends were better than expected overnight.

We pay out of pocket for caregiving which allow me to work. It's probably a zero sum game at this point but the caregivers are experienced and have given me lots of help and suggestions. Don't know if you could get someone for 2 or 3 hours in the afternoon. It might give you peace of mind too.
 
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