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Mindgee Asked September 2018

Declining from difficulty standing, to not able to stand on her own. What care type is available if Mom cannot stand on her own?

HI - My mother has difficulty standing easily; and has a care giver with her from 10:30 - 3:30 M-F; but evenings, and weekends, she is pretty much on her own. She gets up every two hours, throughout the night. She can do this today; but had difficulty two nights ago, and I am concerned about the decline, and needing help through the night. Her long term care insurance covers the assistance during the day, but it will be way over the top of her daily $$ limit if she needs it 24/7. I don't believe Assisted Living provides 24/7 with someone right there helping her to the rest room; helping her to stand, through the night. I don't know what someone does in this situation. If she can't stand at some point, too tired at night, she would still need to do that if she were in a mobility chair. She still needs to stand to move to a commode; even a bedside commode.


When she was in a nursing facility healing from a hip replacement, there with little to no support to her through out the night; she remained in bed, and used her diaper, and was humiliated. Repeatedly. She then was eventually able to get up on her own, into a wheel chair herself into the bathroom, and try to make it, and didn't, many a time -- and the staff left her there, until they were able to get to her. It was not their fault, but they had low staffing. There is no one-on-one of course through the night.


What is going to be available to her, if she cannot stand on her own at some point? It is not far away.

trying42 Sep 2018
Hi Mindgee,

My Mom lost the ability to get to the bathroom on her own (even a bedside commode) and so we started having someone with her 24/7 (for the days - I took a leave from work and my brother does Saturdays, and we pay someone to be with her at night). This is very expensive ($22/hr) but I couldn't figure out what else to do to keep her safe. And she got a palliative diagnosis back in March, so she won't need her savings for very much longer.

My Mom wore a call button on a lanyard in AL, and there is a call button here in the palliative unit in the hospital, but she would never think to push it, she would never think she would require help, she would always (if we weren't there) just try to go on her own and would likely fall.

And like your Mom, mine would be up every 1-2 hrs at night.

Sending best wishes to you and to your Mom.

anonymous594015 Sep 2018
If she is on her own on evenings and weekends, how would she get out of the house in an emergency?
Each state is different, by NY offers a Nursing Home Transition and Diversion program under Community Medicaid that will provide for an overnight aide. (If you can find one!)
Maybe it's time to look into qualifying for Community Medicaid in your state? Most states find it cost efficient to help people stay out of the nursing home.

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cwillie Sep 2018
No MC, AL or NH is likely going to be able to help her make it to the bathroom on time, no matter the staffing level it takes time for someone to respond to the call button and it sounds like she doesn't have the ability to wait. I think she needs to face the reality that refusing to accept the necessary changes (such as the bed rail, commode and even going in her incontinence product) is preferable to having to move to a facility where she will have to make all of those changes and more.

rocketjcat Sep 2018
If you and she would like to try water therapy, tell the PTs that she already sees. Mom had water therapy for a while and there was a “chair” that she sat in which swung around and lowered her into the water because she was a fall/slip risk to walk in.

TNtechie Sep 2018
Warm water exercise is very good for the elderly. Water supports body weight while still providing a gentle resistance. It also offers a lot of pain relief for arthritis. If there's not a community center or health club that provides a warm water pool, try rehab facilities - our local rehab has outpatient "classes". For attire, check out swim shirts and swim shorts/pants on sites like Amazon.
Mindgee Sep 2018
Hi TNtechie,
Great suggestions -- She has neuropathy, severely, and wants to swim, but it is very risky to go in and out of a pool; she does get PT twice a week; and she is fairly strong in her exercises -- I'd love for her to be able to swim... I will check into it. Thank you!
cwillie Sep 2018
I can think of a few strategies that might help to push the problem farther off into the future

Does she have a bed assist rail or other device to help her get up?

She could use a bedside commode.

You could work toward reducing or eliminating the night time need to get up to pee either by tackling the root cause or by looking at medication that would help her sleep through without waking up (of course she would need to depend on an incontinence product)

I can't say enough about PT, there are some very simple exercises that would greatly improve her ability to stand and transfer.
Mindgee Sep 2018
Hi Cwillie,
She does't have a bed assist rail, and probably shoudl have one; so far she has refused it. but so far, she can eventually stand; but the time is coming she may not... and, she won't use a bedside commode either... She has had accupuncture for her bladder issue, and is on a bladder control medicine, and has Depends, but I am mainly worried about her mobility, at night, on her own - and how people handle the one-on-one requirement; and if she can't get out of bed on her own eventually, what happens? What would assisted living do? or even a nursing home? Thank you!
anonymous839718 Sep 2018
There is a possibility that a facility may require that the family provide a personal caregiver.
Mindgee Sep 2018
Hi UsedupDIL - I wondered if that may be the only way this can be handled. Thanks --
Sunnygirl1 Sep 2018
It's my understanding that states have their own rules on who qualify by need and ability. Like, in my state, I think that you have to be able to transfer from wheelchair to bed with a one person assist. If you need more, they can't meet your needs. There should be a button to press for help during the night in AL. Also, they allow one incontinence, but with 2, they can't accommodate you. So, unless she needs Memory Care, I'd explore nursing homes, too. They should be able to explain what they can accommodate and her doctor will likely need to sign off on it.

If she is not able to walk unassisted, I would not leave her alone for any period of time. It's very risky in case of fire.
Mindgee Sep 2018
Hi Sunnygirl1 -- That sounds like what I was thinking as the only option. She doesn't want to leave her house, and if I were to keep her at home, I'd need to hire someone at night; which would be very cost-prohibitive -- the only option is a nursing home... That's where we will be. Her weight which isn't really extraordinary, is probably the impactful in her ability to stand, and I can't get her to control what she chooses to eat.. It really is hard to imagine how this will not be into a AL or NH.. just will be the hardest conversation ever, and very hard to convince her she will need it, and have to overrule her. I have POA, and a brother and sister who are watching this closely, so I don't want to mis-step in her care, when she gets to that point. I will start looking into NH so I am prepared. I am also going to push her for a weight management program - It would help her a lot.. thank you!

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