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I am caring for my 83-year-old mother after a hospital stay. Several health care professionals say that her legs are strong enough, but she says she's too weak to stand. It's been 3 weeks now and she didn't get out of bed the entire time she was in the hospital (about 10 days total). I'm taking FMLA to care for her but that can't last forever. She resists anything that hurts even a little including physical therapy. When I try to talk to her about it, she gets mad at me. She is convinced that she's not going to live that long and can just spend the rest of her life in bed but in reality, she's in fairly good health for her age. Any suggestions???

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I’d talk to her doctor about sending her for inpatient rehab. You have what is sometimes called “powdered butt syndrome” Once a person has powdered your butt they often don’t want your opinions or urging. The physical therapy needs to come with you not around. And mom needs a blunt conversation that not getting up means you can’t provide care. My dad went to a new, lower baseline of walking/shuffling after each hospital stay. He became increasingly resistant to PT. It’s a frustrating road. We had to be pretty harsh with him several times, while understanding he was tired of it all. Mom isn’t motivated to try when you’re doing everything for her, it’s hard, but leaving her on her own and backing off may help
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Beatty Sep 2021
'powdered butt sydrome"' 😆 LOL

There's another kind too - where once you've helped wipe someone's butt, they expect you to always do it (even when they have recovered). What's that called?
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+1 on what Daughter just said.

Im 1965, my grandmother broke her hip. In those days, that rendered you an invalid. GM told all her friends that she would sit in bed and "my daughters will serve me" (!).

The problem was that my aunt worked and my mom had 3 kids, including a 2 year old.

Grandma was told by her daughters that she was going to this newfangled thing callled "rehab"--Medicare had just been passed. Grandma said "I can't believe you are sending me to live amongst strangers", but she DID learn to walk again with a walker and was able to live independently for a few more years.

Get your mom to rehab, asap.
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She was sent for inpatient rehab from the hospital which only lasted 2 days. She wouldn't eat and called 911 telling them she was kidnapped and abandoned (and honestly the place they sent her was horrible). She called me crying and begging me to take her home saying she would do whatever I asked, but she doesn't remember that. I don't think her doctor would send her back and her insurance won't pay for it again. I can't in good conscience leave her alone right now - I would consider that abandonment and abuse. We have a nurse coming in twice a week and PT is supposed to be twice a week but she won't cooperate. I've tried to explain that I need to go back to work and my husband and my life but it seems to fall on deaf ears. I have no siblings since we lost my sister over 20 years ago but my adult nephew stays here with her at night (of course he won't change her diaper but calls me in an emergency - I'm 10 minutes away).
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Santalynn Sep 2021
Of course you won't leave/'abandon' her; I think the idea of 'what if you went to Paris' was rhetorical: your mom would have to adapt to the situation not hold you hostage with her helplessness. Yes, falling is a serious fear/issue but she has to do her part. It sounds like on some level she's 'given up' and is depressed, waiting to die, which is sad in itself. That said, finding a 'carrot' to motivate her is a good idea but I don't think you have to do 'double back flips' to invent something; that in itself is another 'job' on you. Her medical folks must impress upon her what inactivity does, weaken her further; make it a 'freedom' conversation: you can do more when you help yourself get stronger. I think some mothers do feel their kids 'owe them' since mothering so often seems taken for granted, but it's almost 'passive aggressive' to just become 'helpless' to get taken care of like a dependent child, as long as parent is of sound mind. She Will 'hurt' at first as she exercises but it will subside as she gets stronger, even to get out of bed; dealing with gravity is a challenge for all of us! She wants to be 'Queen For A Day (from now on?! lol)' like that old TV show! Consult a psychologist or social worker for ideas how to fulfill that need without becoming her 'slave', stressing you out. Years ago I worked part time on the desk of a 'retirement' home that had independent and assisted living; I observed all the residents closely, noticing how differently each person was handling their aging. It made me start to consider 'What kind of 'old person' do I want to be?' (within whatever hand I'm dealt as the time inevitably comes.) My own mom constantly said when I was a kid, "I can't wait until I'm an ollld (she'd draw it out like that!) lady so I can have Snow White Hair." Honestly, it was almost comical; she did not get 'Snow White Hair' (but a lovely steel grey) and lots of health issues...so she was very surprised, resentful (and scared) to realize the 'Golden Years' are not necessarily so 'golden.' I understand the disappointment/fear, but it's not a license to put unreasonable demands, and guilt, on your caregivers. When I saw how frail my mom was becoming as she aged, because she never exercised, I impressed on her that unless she began to keep herself stronger she would lose her independence, something she dreaded. Anxiety seems to be a feature of your mom's fear of standing/walking, so PT folks need to work with her, assess her true capacity, help her get past her fears and build back some confidence. I'd even suggest water therapy, because the body can move more freely and build strength out of the pull of gravity bit by bit. All the best for all concerned.
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I’d say you need to find a really good carrot to get that horse to the watering hole…

Maybe a treat that she would really love or respond to? Sometimes you just need to get the ball rolling? Maybe serve tea or coffee with cake and have a friend or relative visit? Serve it in the kitchen, and say if she wants to attend, she has to come to the kitchen. Then the next day, find a different carrot. Maybe it’s a beautiful day to just sit outside.

Try thinking outside the box, and find something tempting. But don’t cave - if she thinks she can get away with it and eat her cake too, she will.
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Your Mother is holding you hostage. It's working for her.

Nephew is playing his 'male card' (no bathroom care work). It's working for him.

What would happen if you said No? "Mother, I am going home so you must get up or go back to rehab".

What if you won a trip to Paris & left tomorrow?

I'm picturing it now.. nephew shakes head, calls Doctor gets Mom re-admitted to hospital, then rehab.
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TLH026 Sep 2021
I helped raise my nephew since his mother (my sister) passed away when he was 15, and I’m grateful that he’s willing to stay here so I can sleep in my own bed. And to answer your question, if I won a trip to Paris right now, I wouldn’t go. It seems like her problem is more of a fear. When she tries to get up and stand, she either gets dizzy or feel like her legs will buckle and falls (usually on the bed - thank goodness). Her doctor just prescribed some anti-anxiety meds so we’ll see if that helps. I appreciate all the feedback!
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I agree she needs inpatient rehab. She is entitled to it under Medicare when discharged too early (as she was after 2 days) if it is within 30? days of her discharge. So time is of the essence. Check out 5 star rehabs on the medicare site. She is afraid of falling with good reason—she has become weak from being in bed and getting weaker by the day. This will not get better without her effort. Explain you are doing your part but she has to do hers and you cannot become her 24/7 caregiver for however many years she has left despite how much you love her.
Good luck. It’s not easy. I hope she finds a reason to try to get as strong as possible even if that reason is just to help you.
Key—finding a better inpatient rehab. They are out there.
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I think 'powdered butt syndrome' and 'wiped your bottom/butt' are the same thing, just a 'refined' way of saying it...some of these elders must think it's 'payback' for some of the less pretty aspects of mothering. All part of 'queenitis'? ;-}
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Was the hospital negligent with this? One thing they usually do if the patient is expected to make a full recovery is to get them out of bed a lot. Usually they do PT and OT right in the hospital to make sure they are ready or if not it’s arranged by the hospital or the doctor to have in home or outpatient PT as part of recovery. Usually the PT’s are good about insisting they try. If she’s convinced she won’t live that long maybe she needs counseling.
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I had a neighbor whose MIL never tried to get past a wheelchair and she was more senior than elderly. But the MIL participated in daily living.

Tough love may be needed if you’ve become the crutch that prevents her from dealing with reality. Stock the frig and leave. She wants to eat, she has to get to the kitchen. She needs to dress and shower, she figures it out.
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When we had patients that wouldn't get out of bed in the hospital, we used to tell them we needed to change their bed. We would take the bedding off the bed and not put it back on until evening. We also said "the doctor insists you eat all your meals in a chair at the table." Once she is out of bed a gentle massage may help warm her up for physical therapy.

Your mom may also be suffering from depression. I know that depression can make doing anything seem like climbing a mountain. Please have her evaluated by a geriatric psychiatrist. Psych medications can take awhile to build up to therapeutic levels in the blood stream. So be patient, but keep encouraging her to get up.
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Get her to use a walker, cane whatever to start going to places she likes like going out to eat, going to a movie, go het ya's hair done, get a Massage, go get a Manicure or Pedicure.

Tare a Drive to the Beach, what ever she would like to do.

As far as thinking she's dying, let her think whatever makes her happy, don't argue about it.
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I would get her a good walker and have her walk around herself for exercise every single day and tell her that the exercise is necessary. I also would take her to the senior community center for activities just so she'll have enough to engage her or schedule more visits where people can come to her or try to get her to visit outside the home.
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The longer she stays in bed the weaker she will become.

Maybe you can set a chair and tray up in her room to have meals for a week. I don't want to sound harsh but tell her if she wants to eat she needs to make an effort and must sit at the tray/table to eat. Maybe first set the chair and tray next to her bed and each day set it a little father away from the bed. After a week have her come to the family table for meals. Once you get her up get her to take a few extra steps.

If she anticipates dying she may not comply. She may, however get her wish if she doesn't get up and start moving.

FMLA will end at some point, what does mom expect you to do then? Tell her you will need to go back to work and if she hasn't made progress, she will probably be looking at moving into SNC/nursing home.

Check with her DRs and see if they can't get her in rehab. If she's like my dad she will be resistant, but it is important for her to get moving sooner rather than later. Have them also check her for depression.

I wish you the best.
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TLH026: Imho, the longer that your mother remains in bed, her leg muscles may atrophy. PT is necessary, even if it's 'baby steps.' Perhaps she can start slow and build on that.
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Sounds like depression. Or she may be scared of pain returning or falling. I would consult with her doc. An antidepressant may be helpful. Can you motivate her with a reward (i.e., a favorite food that "is too messy to eat in bed", or a ride in the car to a beauty spot, or sitting in a sunny spot to watch the birds)?
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I just spoke to my friend who is caring for her mother. Her mother insists on being in bed all day and if that is the case, she will NOT be able to walk any longer and she will have to be put into a nursing home. Tell her she must get out of bed no matter what and walk or you WILL PUT HER IN TO A NURSING HOME. That should motivate her and be prepared to do it if she doesn't cooperate.
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Daughterof1930 Sep 2021
A nursing home is a choice, often made with great heartache and with a lack of viable options. It should never be a threat
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Look for a geriatric psychiatrist. She is likely suffering from depression.

if you have to use a wheelchair to grt her to the appointment, rent one. Just get her there.

i lived through this same scenario.
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Although several suggest rehab again or PT, clearly that isn't going to work. OP said her mother didn't cooperate in rehab and won't work with PT in the home. In both cases, she will be discharged. The second time MC brought OT/PT in for my mother, she absolutely refused to do ANYthing. They tried several times, trying every trick in the book. She even went so far as to tell them YOU do it (meaning whatever they were asking her to do.) If PT hasn't ended yet, it will soon, unless she makes any effort. Mom was in MC and moved in fully mobile. Eventually she started using a rollator. Her problem was two-fold: a lot of physical inactivity (she would sit reading things over and over) and being a bit overweight. Eventually she was weak enough that she feared standing and walking and refused, so she ended up in a wheelchair. The funny part is I had to sign off on the PT paperwork when they discharged her and they listed "goals met"! What goal, making you go away?

In your profile, you stated this:

"So I bring her meals and change her diaper and clean her up, and she gets mad at me when I tell her she needs to at least try."

Let her get mad. That's her problem. As far as the rest, you ARE catering to her, so why should she bother trying? Someone suggested a table set up near the bed for meals, then moving it further and further away. Put the meals there and leave the room. Or set up the meals at the kitchen table. You can offer to assist her getting up and using the walker, but she will have to go to the food if she wants to eat. If she really wants to eat, she'll have to get up. IF she wants help getting to either table, fine, assist, but as minimal as possible. The same should be for any snacks, TV, other "activities". Leaving her alone in her room with nothing to do, no TV, company, unless she gets moving - this seems tough, but sometimes that's what it takes. We want what's best for them, but so long as they don't have to do anything to get what they want, nothing will change.

I think about all you can say to her is if she won't try, she WILL lose the ability to stand and walk. THIS will result in having to move to a facility, because you have to work. There's no argument there and don't argue the point with her. Set the deadline for return to work and give her the choice:

1) you get up and moving, either with PT or rehab
or
2) you will be in AL or NH

HER choice. She has to choose one or the other, there is NO other option for her. It's going to be tough on you, but the reality is these ARE the only 2 options. She must choose.
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Everybody else seems to know but I can't see the information, sorry - what was your mother in hospital for?
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