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My 86 year old mother recently fell and broke two fingers. She had surgery and the bum hand, combined with bad knees, osteoporosis, and what we now suspect are Parkinson's symptoms like freezing of the legs and feet have left her unable to stand. This means she must have help getting on a portable toilet seat next to her lift chair. Yet, she refuses to ask for help at her assisted living facility. She basically lied to us and told us the nursing assistants won't help her. She says they're mean and bossy, etc. (which some may be) My wife and I have been taking turns spending 2-3 hours a day helping get her on the potty seat, changing soaked depends, cleaning up soiled clothing, etc.

When we asked the assisted living nurses, they told us my mother tells them she doesn't need to go or she can go by herself when they ask if she needs assistance. She's really pitiful, has use of only one arm, can't stand up, has trouble swallowing. Yet when we try to arrange for help, she fights us at every turn and becomes argumentative. The only people she'll accept help from is me and my wife, and it's wearing us out. I have a full time job and don't have the time or the skills to be a full time nurse on the side. That's why we're paying other people to do it.

Anyone else have experience with an elderly parent refusing help with activities of daily living they are no longer able to perform?

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I found that strange that staff isn't helping more. Your paying a premium for their services. Of course they might not want to put someone on the commode, then waiting sev minutes, wiping, getting her redressed, and putting her back to bed, or chair. It is time consuming and usually requires 2 people. Im NOT saying this is ok. Its not. Its their job. That may be why they are mean. So she wont ask. Its easier/faster to change a brief. That requires 1 person.
But there is no excuse leaving her in soaked briefs. They can't say they thought you were doing it.
I'd have a talk with the nurse about her care. It's the staff's job.
I think you shouldntvhave to do it if you are paying the facility.
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Reply to Jasmina
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I am not impressed with an ALF that is content to leave basic care to relatives on the grounds that their resident is brushing off the aides' help. I would expect skilled, experienced aides to have worked harder on developing your mother's trust and confidence by now. It is their *job* to ensure that she is clean and comfortable, and your mother pays them handsomely to do it.

What do you think of the ALF's standards in general? You say that you can imagine some of the staff are mean and bossy. On a scale of 1-10, how acceptable would you yourself find it if you were in their hands, with your mother's degree of dependency?

The thing is, your mother needs to be able to rely on these people. And to make that happen, you and your wife need to take yourself out of the picture - go away for a couple of weeks, absent yourselves. But you won't want to do that if you actually fear how she will be treated.

And if you are anxious about it, you need to solve this: either by working with this facility to build better relationships, or possibly by looking for a better facility with better leadership and a better culture. You must bear in mind that the day may come when you and your wife *can't* supplement your mother's care, for any number of reasons. Nobody can afford to make themselves indispensable.
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Reply to Countrymouse
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Just to see it all "go to a nursing home."

Or, to look at it another way, be spent on providing her with the care she needs in her very old age.

She can't take it with her, you know. Which means, when you boil the soup right down, that you are economising on your mother's care so that - to put it charitably - she will have the satisfaction of knowing that she has left a little something to her children.

You can figure out the non-charitable version of that for yourself. I don't want to be harsh.

But, meanwhile, the ALF should be getting its finger out. What's the state of your relations with them at the moment?
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Reply to Countrymouse
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I have not had this experience.

Does your mother have dementia? Has she always been stubborn, demanding, and inconsiderate of you and your needs?

You can say "mom, we can only visit once a week; you're going to have to accept help from the staff here. That's why your're paying them". See how that goes.

My mom used to call us from her Ind. Living facility about things like broken light bulbs and ants in her kitchen. We'd tell her flat out "no mom, you have staff to do that now". When she'd say she didn't want to bother them, we pointed out that for 5K a month, she needed to bother them!!!
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Reply to BarbBrooklyn
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Sounds like you need a talk with the director of the facility.
If they are allowing her to stay in wet clothes, on a wet bed to me this sounds of negligence. (the way you have described the situation they will not change her so you do it.) I would think there is a liability issue here as well. If she were injured while you, an "untrained" layperson were helping her I would think the facility would be liable. And more so if you told the lawyer that the reason you were "helping" is because the staff refused to do so.
I have to ask you, you are there 2 to 3 hours a day, when you arrive is she dry, bedding dry, clothes clean? If so then she will allow help from someone other than you. Maybe she is refusing help when you are there because she knows you will do what needs to be done.
The staff should be checking about every 2 hours this would include toileting and re-positioning.
Also if she is having trouble swallowing she needs more than Assisted Living.
You say it will "wipe her out financially" it is her money, she either earned it or her husband did. It is to be spent on her care. Sell her house if you need more finds before she qualifies for Medicaid. This money should be used for her care.
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Reply to Grandma1954
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Yes I understand this problem as my mother has had 7 falls due to going to the bathroom on her own rather than ask for help from the carers. Have discussed with manager & carers about this problem they say they cannot force her to do anything she does not want to do they can only offer help if asked to do so. Maybe your mom would be better off with more care in a nursing home as she seems to have a lot of problems bless her. Money is insignificant when it comes to her welfare.
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Reply to frankie22
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Lots of elderly parents want to brag about how much their children do for them. Seems odd, but having you clean her up means love to her... or makes her feel like she is still in control of something when she cannot control her own body. If there is no dementia, I suggest you have another straight conversation - in your most patient, loving, sympathetic attitude and voice. "Mom, we love you and we are so sorry that you are having these physical problems. It must make you feel like you're losing control of your own life. We feel sad about it, too. But something you can control is getting someone here to help you get to the toilet in time and keep your skin clean so you don't get sores. I need you to be in charge of that. Will you do that for me? Will you please make the staff take care of things like that so I can be a better son and not feel so guilty all the time? I love you and it breaks my heart to know you're paying someone to do a job and they're not doing it. If someone is too bossy, let the manager know and they can send someone else. You are in charge of your care. You are the boss. Will you try that for me? "
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Reply to Consulting
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Has your mom been evaluated for dementia?

I mean, a real workup, not a cursory test of her memory? I'm thinking she's not "lying" to you, she's misinterpreting what is being said to her by aides; she's long thinking logically and she's not going to "learn" anything new.

That's one of the reasons I asked if she'd always been stubborn and inconsiderate of your time.

My parents were very frugal throughout their lives and saved, and saved and saved.  However, we were told, early on and often, that there would be nothing left over after their deaths, that every penny of their money was going to be spent on them.  This was not said in a mean way, just a practical one and it helped guide us when mom needed care.
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Reply to BarbBrooklyn
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When my friend, Beth, for whom I had POA, refused help from the memory care staff after she soiled herself and needed cleaning, I was advised to take her to a geri-psych ward at a hospital to find an anti-psychotic drug that would calm her down without doping her up. It took 3 1/2 weeks to find the right medication and dosage, but after that she could be worked with and was cooperative. It was a stage of her dementia that caused her to become so resistant. So, dementia may be part of what is behind your mother's resistance to others' help. Beth's geri-psych stay was covered by her health insurance, so no big deal in being able to pay for it. Good luck. You are taking on a big job in providing this care and I hope you find good advice when you need it.
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Reply to JohnnyJ
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I read your question again. She can't stand on her own, and the commode is next to the hoyer lift?
Is she being lifted to the commode by your family? If she can't stand, how are you getting her to the commode? To me that is dangerous. She could fall off and break a hip.
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Reply to Jasmina
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