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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 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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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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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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Does she actually need a NH environment, rather than AL?
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Barb, the answer to your question is maybe. The AL says helping with bathroom activities is a service they provide. In reality, my mother would definitely qualify for a NH. But it's a financial issue. She owns her home and has a little money in the bank, so she doesn't qualify for medicaid. We can afford to keep her in assisted living. If we have to place her in a nursing home, it will wipe her out financially.  She will become one of those people who scrimped and saved all her life just to see it all go to a nursing home.
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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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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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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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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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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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My mother has Alzheimer’s and an ileostomy (similar to a colostomy) and is in AL with my father, who also has some dementia. I often get caught in “loops” with them because Mom finds it increasingly difficult to care for her ostomy, disagrees with Dad about his help, but they both agree that the staff won’t be able to help “properly” because the staff “doesn’t know” how to do it “right.” Mind you, they’ve never allowed the staff to help, they just “know” this. I think “doing it right” just means doing it their way. I’ve been assured the staff can help with this, but my parents just won’t allow it. It’s a tricky place to be. In AL they do give patients the choice of what level of assistance to receive. So for now I’ve taken to just listenening to their complaints rather than trying to “fix it” until my folks truly cannot care for the ostomy. At that point, if they still refuse assistance from AL it will be time for Mom to move to Skilled Care. As was noted by someone else, I do not mind their money going to this care, I’ve always thought this was what their money was for-their care. Perhaps your mother could benefit from at least a short stay in skilled care till she recovers from her injuries. Then an assessment can be made whethe she is appropriate to return to AL. The folks at my parents’ facility have always told me that when they lose their ADLs it will be time to step up the level of care. It can be difficult to know what to do. I wish you comfort and clarity as you move forward.
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Rwbpiano,
Several good points in previous answers. I would only add this:
See an attorney who specializes in Elder Law. Depending on your State Medicaid rules, she may be able to qualify, even with a home and other assets.
If she is not married, the home may have to be listed for sale, unless she plans to return to it. If she has not pre-paid for a funeral plan, that can be done now and still qualify for Medicaid--saving you having to pay for it later.
You really need to take this step now, because her condition may deteriorate to the point that she no longer qualifies to be in AL and has to go to NH.
At the same attorney visit, you can have her update or at least review her will, POAs, etc.
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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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Bathroom activities are probably one of the last habits to give up when you are unable to do it by yourself. I walk behind my husband to make sure he doesn't fall when he goes to the bathroom and I let him do his own thing when he brushes his teeth and shaves even though he has difficulty doing the most simplest things. My mother had a visiting care giver that would come daily just to visit, make her tea and make sure she didn't fall. After a month, she became a close friend and my mother enjoyed having her come telling her about her past life and memories. Is it possible for you to establish such a friendship between a care giver and your Mom? Someone who is not there to help with her daily activities but to enjoy her company. After a while, she may take help from her visiting helper.
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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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That is difficult it is a matter of her pride she as your mother wants you as her daughter to appear strong and independent just be patient she may eventually be willing to take your help.
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Jasmina voiced my same concern - 'She can't stand on her own'- ??? If that is the situation, I also agree with others stating she may need to be in a Nursing Home, rather than AL! Perhaps the assistants at the Assisted Living facility are also resistant to providing the proper care to a patient that needs greater care then they generally provide. Sounds like it's a failure too on behalf of the AL if they are not informing you of her increased needs beyond their normal services in their facility.

I would also speak with her physician and inform the doctor of the increased challenges. Allow them to guide you to making the right decision regarding the level of care needed.
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If Mom was in AL or a NH, she would not be one to ask for help going to the bathroom. She would try to do it herself, just because she thinks she can.

My Mom has refused help (and still does sometimes -- even from me). For Mom, I think it is a matter of modesty. The aides know how to deal with patients like this, or at least they should... What we have had to do initially, was get Mom safely in the toilet, then step out to give her privacy, checking on her frequently until she is finished.
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Rwbpiano,
My 85 yr old Mother acts exactly the same way. I was forced to place her and my stepfather in a group home. Mom has diabetes 3 Alzheimer's (I didn't know that diabetes could do this). Dr told Mom she had 1 chance left and if anything happened he would place her in a nursing facility.

I tried my best to keep her home (we live out of State) and it's a very long story re: my siblings/step-siblings!!

Mom becomes angry because she was the care giver/protector all her life. Put everybody first, so now that the situation has been reversed, it's very hard on her.

Before my husband/I placed them in this marvelous group home, the only person she would allow to help is my step-father, not every single time!

When she was taken from the hospital to the group home, she became even more belligerent as well as my step-father (progressive dementia).

They have been in this group home for almost 2 months; some days are really good, some good, some bad and some very bad. My Dad was in the Navy, but I never heard Mom use a sailor's mouth until now!

The staff gets the same treatment from her/him as family members, BUT the staff doesn't have the "guilt" reflex the family has.

I couldn't let myself be there when Mom was brought from the hospital to the group home; I felt that I had let Mom down even though I knew that day would come soon.

Professional caregivers have the training, experience to cope with these issues. The group home I have Mom/stepfather, the staff are absolutely amazing. I cannot express my thanks enough to them. The really great thing about the staff/owners is they are all Romanian and they treat the residents of this home just like their culture dictates for care of their elder family members.

Since I live out of State, the owner/manager will text me pictures, she will text or call regarding any issues and visa versa.

I was told that it takes at the very least, 3 months for residents to truly accept they are home.

Mom still has days that she gets angry when people try to help her physically as well as her personal needs. She has begun to accept the help a bit more each day.

We all like to think that "we" will never be like our parent(s) as we get older, but a strange thing happens; one day we look in the mirror and we have become our parent in more ways than we ever imagined.

If Mom is still home, instead of doing the job sit back and watch the caregivers work; it could be they aren't doing the job they're being paid to do. Maybe they're mistreating her like she tells you.

Have nanny cams placed in the house, security which gives a report as to how many times the exterior doors were opened/closed. A cam at these doors will help to confirm if the caregivers are staying for the time they're being paid. If COX communications serves your area, they have a great security system to help with this situation.

Mom could be telling you the truth and the caregivers are lying, but either way you need to see for yourself who's telling the truth; then you'll know what the next step needs to be taken.
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