Old 10-23-2015, 06:08 AM #1 (permalink)
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Default Trouble with staying in bed

This may seem obvious. But, my Mother has bulbar ALS. Until recently she has been able to get up in the night to go to the bathroom. She is getting up 6-7 times a night despite very limited liquid intake through her feeding tube. Recently, she gets up and falls. We have tried putting a bell for her to ring at which point we get up and walk her to the bathroom. Not reasonable for us to get up every hour. She just will not use pull ups and is resistant to a catheter. She still tries to sneak out of bed. And, of course, she falls and the medical alert goes off. Help! Does anyone have any ideas?
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Old 10-23-2015, 06:17 AM #2 (permalink)
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Default Re: Trouble with staying in bed

rope well that's what they needed to do to me at the time
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Old 10-23-2015, 06:25 AM #3 (permalink)
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Default Re: Trouble with staying in bed

Have you spoken to her doctor about her perceived need to urinate so often? I'd try that first. I went through this with my mom (not als), and it's difficult. Once you rule out an organic problem, she needs to retrain herself. She may also be worried about the need to go, so if she wakes she wants to empty anything that's in there. Again, retraining and reassuring her that she won't wet the bed if she skips those hourly trips. Her getting out of bed is a big problem. She doesn't want to bother you so she takes the risk. I know how frustrating that is. Would it be safe for her to use a commode chair next tot he bed? Probably not if she is falling.
My mom is now in assisted living in another state (sister is caring for her) and we have the same problem with her sneaking out of bed. She's recovering from a broken hip and leg, has Parkinson's, and only has the use of one arm due to a childhood accident (81 years old) and she still manages to work her way around the half bed rail they put up to go to the bathroom at night. She also has a button, and we don't know if she conciously decides not to push it or doesn't think about it. My sister is getting worn out with the middle of the night ER trips. ARGH.
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Old 10-23-2015, 09:45 AM #4 (permalink)
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Default Re: Trouble with staying in bed

Just looking at this to make things easier on you, have you tried a commode beside the bed. Shorter trip, not a catheter, and easier than a bed pan.
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Old 10-23-2015, 01:40 PM #5 (permalink)
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Default Re: Trouble with staying in bed

Firstly welcome

I would firstly get her checked by her doctor - why does she have a very limited liquid intake? If that is to try and stop her going to the loo a lot it's not a good choice.

With medical issues aside, a commode right beside her bed may be a great solution for now. Have you been doing planning around how you will all cope when she can't walk at all? Does she use a walker now?
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Old 10-23-2015, 02:45 PM #6 (permalink)
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Default Re: Trouble with staying in bed

Assuming she can use her hands somewhat, here's an off-the-wall idea. Search on male urinary diversion system, which is designed for beds/chairs. Yes, I know she's female. Look at what they did, maybe order one ($19) and then mod or riff on the one part that's male rather than female, possibly by using one of the portable female urinals that are available, such as the UriBag.

Depending on her hand/arm abilities, she may even be able to use the female UriBag in bed and empty it into a larger container such as what the MUDS uses. There are less flex-y female urinals as well but obviously all are more difficult to use lying down. If she can sit up safely, these are all certainly options.

There may be a similar female bed system -- just haven't seen one.
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Old 10-23-2015, 04:56 PM #7 (permalink)
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Default Re: Trouble with staying in bed

we tied a bell to my dad's sheets so if he started rustling around we knew before he attempted to get up
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Old 10-23-2015, 06:59 PM #8 (permalink)
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Default Re: Trouble with staying in bed

Star that is a brilliant idea!
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Old 10-26-2015, 07:17 AM #9 (permalink)
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Default Re: Trouble with staying in bed

All great ideas! Especially the rope! We have consulted with her doctor, hospice nurse and a licensed care giver every step of the way. The limit on her liquid intake in right in line with what they advise. We changed her sleep meds based on doctors recommendations. Our caregiver and hospice nurse say that almost all there patients are on a catheter at this point. She has very limited mobility. So the use of a bedside device will not work. We negotiated a plan that she goes before bed at 8:30 and then I check on her at 7:30. Then back to bed until 9. I watch her on a monitor and watch whens she's restless. She still hits her medical alert a few times a night for many reasons including my neck hurts, oh...and I have to go pee. It's like having a baby again. With all this being said, three times last night, I though it best that we go ahead and transition into full time care. Of course, when I was with her at 7 this morning, after three hours sleep, she wrote me a note about how much loves me. We hugged and cried! Such a tough decision deciding when it i time to make a move to full care. What a terrible disease!
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Old 10-26-2015, 12:50 PM #10 (permalink)
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Default Re: Trouble with staying in bed

Son,
I disagree w/ two statements your team has made -- that most everyone at this point is cathed, and that low liquid intake is advisable. In fact, a low liquid intake is more likely to create irritation and difficulty in full emptying of the bladder, not to mention other effects that reduce the quality and duration of life. But I hope you find a good facility for her if that is the decision. There are some threads here on selecting/vetting facilities.
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Old 10-26-2015, 02:14 PM #11 (permalink)
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Default Re: Trouble with staying in bed

I agree with Laurie - restricting fluids is not a good approach to this at all.

I hope you can find a good facility. ALS is such a horrific disease and she is probably very scared over what is happening to her and this can cause a lot of restlessness at night and feeling a need for some comfort. For the caretaker it can be perceived as annoying behaviour that is for no good reason. Many PALS have a fear of passing in their sleep too. My Chris had a huge fear of this (whereas I thought that would have been a blessing and would prefer myself to just pass that way when my time comes). He would sleep with the TV going softly all night as it gave him some comfort to have the background noise and if he woke he could immediately focus his attention on whatever was showing.

You are quite correct it is like a reverse baby - the further they progress the more total care they need both physically and emotionally.

Chris went on an antidepressant and it helped him to start sleeping for the first time in well over a year.
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Old 10-27-2015, 08:28 AM #12 (permalink)
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Default Re: Trouble with staying in bed

At that point of her disease, my sister used the catheter. It was a blessing for her and all of us. It took her 3-4 weeks and a couple of UTI treatments, but once her body got used to it, that was the best thing for her. She was very happy. We also started to use a diaper even if she had the catheter. That helped with keeping the catheter in place and keeping her warm. If there was any leakage at all, she wouldn't feel it.
I agree that reducing the liquid intake should not be an option. She needs hydration... anti -depression and anti -enxiety medications were a big help.
Hope you find a good facility for her.
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