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She says she doesn't know if she will be able to get up and walk at all at home. It's as if she's either given up once she's home or deliberately messing with me which has happened before. Any input is greatly appreciated.

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Why are you bringing her home if she can’t or won’t walk? Do you have adequate help to deal with such a scenario?
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Sorry Mum, but if you cannot walk, you cannot move home with me.
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NeedHelpWithMom Feb 2019
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I deal with this constantly! My mom has Parkinson’s and falls. She does home health and improves. As soon as it’s over, back to saying that she can’t. As many times as physical therapist and occupational therapist says to her use it or lose it. doesn’t seem to sink in or as you say they want us to believe they can’t do it. Of course at their age and health issues it is hard for them. I do sympathize but nevertheless it is very hard to deal with. I understand completely how you feel. I hope she and my mom will realize that they must do their part to have a better quality of life.

You know sometimes I feel that if it is such a struggle to get old, that I would rather not live as long! She’s 93. God bless her an all elderly people. God bless us, their caregivers too!!!
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PharSytid Feb 2019
Hi NeedHelp-
thank you for you reply. My mom is only 72 !
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Is Medicare discharging her because she hit a plateau. See if she can have PT at home.

Here is how I look at PT/OT in rehab if just for getting strength back.

They only get therapy in the morning and maybe afternoon. For my Mom, because she was a fall risk, she was in a wheelchair for the rest of the time. I was told that she would never walk with her walker without someone with her at all times. She got back to her AL and within 24 hrs was walking all over with her walker unassisted. To me you can't get your strength back with 2 hrs or less of therapy a day.

I am saying this because Mom may do better being home. Really, why would anyone want to stay in rehab.
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Isthisrealyreal Feb 2019
My dad was in a 1st class rehab that worked him well. The hard part to give up was the made to order food, 15 different people stopping in to check on him and basically having to do nothing for himself except rehab and walk.

He thought he had finally been placed on his throne where he believed he rightly belonged. Temper tantrums galore when he found out it was temporary.

I had to hound him to move once he finished in home pt and ot.

That is why this person wanted to stay in rehab.
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Hello e1-
thank you for replies. I cannot figure out why my mother plays invalid right when she gets back home. I cannot figure out what she is hoping to gain by doing this . It comes across to me as a very deliberate, selfish, nasty behavior meant specifically for me - am I saying she does it to make my role as her caregiver more difficult than necessary? YES, YES that is what I am saying. Why would she do that? I have know idea. Ugh!
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Midkid58 Feb 2019
My mother did/does the exact same thing. Is compliant in rehab, totally uncooperative when home. I have no idea why she literally "CHOOSES" to be slumped over and unable to lift her head to see when 15 minutes of her exercises twice a day had her standing straight and walking well with a walker.

Sympathy? Laziness? I don't know why. She's always been this way--self absorbed and wanting all attention on her. She WANTS to go the wheelchair route but brother has said the day she does this is the day she moves to a NH.
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125 feet sounds like a very specific distance. In fact, it sounds like the sort of a distance that a person might walk when being assessed for discharge, in a safe, flat environment, attended by a physical or occupational therapist and one or more aides saying lots of encouraging and sympathetic things, and having to do it just the once.

It probably feels a bit different when you're contemplating how to get up from your chair and walk to the bathroom, round the furniture, over carpeting, through doorways, with a tired and possibly cross and certainly stressed out daughter suspecting you of being intentionally difficult.

Does your mother want to be discharged home? Thinking about the whole situation completely afresh, do you think she might do better in a facility?
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Judysai422 Feb 2019
I would add that it might be very helpful to have in home PT to ascertain what needs to be done to make the house safe and to get your mom used to the surroundings. It was so helpful for my mom in a similar situation. Also an OT assessment might help.
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Phar, I went back and read some of your other posts.

You sure sound burned out. You sounded like you though it might be time for placement.

What your mother may be saying is " I can walk here with the help they give me; I don't think I can do as well at home".

Maybe mom wants to stay in a place with assistance. Has anyone asked her?

What do YOU want to see happen?
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Sometimes it's all about fear of falling and getting hurt again. My mother had one hip and both knee joint replacement surgeries that required using a walker for an extended period following each surgery. She had complete rehabs following each surgery where she worked at home doing assigned exercises. But when she took a hard fall and injured her knee last fall she didn't want to use the walker. Since Mom had a "history" with the walker, I expected her to take off using it with no problems. She would use the walker to stand but wouldn't take any steps. First she complained the injured knee hurt too much when she tried to move, then that she "couldn't" place enough weight on the injured knee even after the doctor had cleared it for her full weight. We started in home PT because the knee had stiffened from non-use and she could not completely straighten her leg. She had also developed a habit of only putting weight on the ball of her foot so she could keep the knee flexed. Walking on the ball of your foot is like wearing high heels - it puts a lot of extra strain on the front of the knee - which makes it hurt if you're 87 and recovering from an injury. PT tech explained Mom is "protecting" that injured knee and is fearful of falling again. PT has focused on restoring flexibility in the knee and getting Mom to trust it again. She is walking with the walker again but only when I'm with her and I need to remind her to put weight on her whole foot. She is physically able but it's taking a lot more time to regain her confidence than I would have believed prior to this injury. She still tells me occasionally that she "just can't" walk down the hall and then walks down the hall after I tell her "sure you can, you walked from your room to here and you can walk back too". Mom gets to use her wheelchair when she attends day care because the walking distances are much longer but inside the house I require Mom use the walker exclusively. She's slowly improving and I still believe she will eventually use the walker independently, at least in the house.

I suggest you clear the walkways where your mother really needs to walk, like from bed/bedroom to toilet or bedroom to exterior door and focus on encouraging Mom to walk those paths with you close by or maybe even let her hold your arm. Tell her she's doing well during and after the walk. When she says "can't" remind her of previous successes. Get her up and walking every couple of hours so she maintains and/or builds endurance. You might even want to consider installing handrails down the hall and around her bedroom and bath.
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I think we are living the same lives.

My mother fears falling. She is on one of the supposed "safer" anticoagulants and has fallen - albeit with someone right there with her, and she is scared to death of doing it. Believe me, I get that.

I myself, at 47, have fallen in my home. I was alone, fell down the stupid stairs hitting my head the whole way. Could have knocked me right out. So, I am fully aware of the fear, it's real, and it's frightening especially if youre 81 and something thins your already frail blood.

Your mom may actually be telling the truth. She may not be able to walk at home. Because there is no one there on either side of her, being that literal catch-all if she buckles. I am living the same thing right now. My mom is an absolute whiz on her walker now. I helped train her - stand up straight, look forward not down, keep your weight even - she's great at it. But when I leave she will stay in bed and not move all night except for a plastic toilet that she can slide over to easily.

It's fear based. And we can't fully realize or understand it at our age or place in life. My own ideas are that my mom should be fighting like hell and saying, "Well, yeah I take this blood thinner, so I'm going to make d*&! sure I don't fall!" I even told her that her mindset should really be one of, "I'm not gonna let that happen to me," certainly if she can help it and for the most part she can. They anticipate my mom can get her stamina and mobility back based on what they diagnosed. But, she has to be willing.

PT is great for getting the strength and flexibility there, and when they see that she can walk 125 feet they grant the "improvement" grade. I know this because my mom was just assessed the other day.

But nobody gets into their mind and their psyche except themselves. I told my mom the other day out of sheer frustration, "You don't think about walking you think about falling." The look on her face told me that I was right.
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My husband with dementia was in hospital during a lockdown. He had been about to be released and didn’t get sick but had an additional 2 weeks there. During this time when the nurses had extra work and were taking extra precautions, they gave him a wheelchair to get around with rather than them having to worry about him falling. So he got it in his mind that he couldn’t walk and wasn’t going to at home - I told him he wasn’t coming home then and we’d have to find a nursing home. He started walking pretty quickly after that.
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cetude Feb 2019
Most very aged people will totally lose their mobility if they stay in a hospital that long. Wheelchair bound also means losing mobility. It sounds like he did not suffer Alzheimer's disease; if he did, then is in earlier stages of it. You are actually very fortunate he did not catch other bugs there.
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I tend to believe your mom, and this is why. The Federal government penalizes a healthcare facility for "preventable" injuries including falls. While they are preventable, they still happen despite the best of interventions. I seen research that shows bed alarms are only 20% effective..at best. I use a floor alarm for my mom and this was very effective to prevent falls at night---but this 20% effective rate is probably true when you have a hall full of patients (as opposed to just one person) and the nurse can't get there on time. Even so, over 90% of the times when my mom fell is when I was with her. Sometimes she just takes it on herself to just try to sit as though a chair were behind her but only a bare floor..or it can happen so fast it could not have been stopped on time. There was one instance she feel straight back and it was so fast I could not stop it. It happened REAL fast. luckily no brain bleed or damage. By the grace of God actually. Nurses will also get punished by administration for falls, so the SAFEST bet is to keep them in bed. True they won't fall..but it also makes the patients much weaker to the point they lose their mobility. Federal law says they don't fall all is well. When a person loses the capacity to be mobile and stay in bed all the time it fulfills Federal guidelines of no falling. Just think about that. I will keep my mom out of a hospital. I will use the Emergency Room but no hospitalization and she's on Hospice. I try to keep my mom mobile because it makes her care a lot easier and increases quality of life for HER.
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anonymous272157 Feb 2019
I agree with you about some SNF or even rehabs. It seems like my aunt is being taught dependence at rehab, not at all what I expected. We tested her ourselves, and she's MUCH better than reported. We are taking her out today, and bringing her to a memory care place nearby where we live. Whole different attitude there!
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She might be just scared that she will not be able to and end up falling.
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Moskop Feb 2019
I agree that she may be afraid of falling. Try to get her a walker, try to get her to walk to meals at a table. Try to keep her out of a wheelchair.
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Make sure before you bring Mom Home, Everything is the way you want it to be with Mom. Mom can get an aide for 21 days on Medicare, Perhaps this is Best from the Rest so you can See if Mom Can Stand.
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.can you have family to help ..either buy or get a wheel chair.i was lucky in my area outer bout 5 miles at the most there was a place that give you a chair for free all you had to do was fill out paper work .& then when no need for it anymore all you had to do was return it ... my mom gave up &stayed in bed .that saturday that i got the chair we had to take her to the hospital bout maybe march 10th ..came home monday stayed in bed was on the 12th ..she went on hospice march 17th then 4-9 passed .but she might be at the end of her road .if dementia or so..
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I agree that I do not want to where I am a burden on my child.
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I would believe her and ask her why if this is a big change. My mom is a fall risk and is unsteady on her feet. Shes fallen a few times. She uses a walker and we have a portable wheelchair as well. She wears a buzzer to call for help to get up for anything. This demands 24/7 care now. If you can not give mom this then maybe time to talk about assisted living. One thing that helped alot was having PT at home. They will assess living space and helped us set up the house for mom. Ask her doctor to prescribe this and OT if appropriate along with aides to help you with her bathing etc.
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She can walk in the nursing home just fine. But now she cant???? She is walking quite a distance. Thats no small feet.
Hmmm What is the payoff in telling you that? Seems to me she has someone to order about, get her things and wait on her hand and foot. Who wouldnt want their own personal servant? Its fun to order someone about. Except the person ordered about doesnt feel that way, they are worn out!

To combat that, Id say dinner is served in our dining room/kitchen. You want it, you can walk there. Ill see you there. I made something nice. Then we will have a nice meal. And walk away. No fighting, no begging, no cajoling, and no special tray. Nothing. If tantrums enter the picture, walk away. No talking back. She can choose to join or not. She probably wont like that at first. She'll learn.

If she wants something she can get it. She can walk and help some around the house. You are taking care of her. No need to become the personal slave. She cant argue if you refuse to allow it.
She basically declared Im not going to do anything. You will be doing all of the running and fetching for me. I cant wait.

If you give in you are contributing to her decline. An elderly person has to keep moving or they will loose strength and then ability to do move about. You dont want to contribute to her decline. You are helping her keep active and live a longer life.

She has proven she is able to walk quite far, and get around quite well. Good for her! So many cant. Thats a good thing. Active is good.
PT/OT wants the elderly active.

It is in in her best interest and your sanity to nip that attitude in the bud. Or she will run you ragged. Stay strong.

I cant imagine she would be that depressed coming home? Its usually going into the hospital/home that makes them scared or want to give up.
You will know if she tries to order you about. You have ypur answer then. If she doesnt, then you need to find out what other issues may be going on. Good luck.
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anonymous828521 May 2019
So true, well said Jasmina. (My home is my last refuge, it's unthinkable that I would bring my narcissist mother to live here). I'm sorry for how that sounds, but I know my limits. I hope it works out for PharSytid, good luck.
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This same thing happened when my mom left rehab. She was there for walking also. I had to help her to car when released. Like really help, and make sure she didn't fall. I'm going through all this again now. Can barely walk or get up. I'm struggling to help her up cause I have nerve damage in neck and bad back. We are supposed to start PT, in home today but she is going to cancel cause she don't want them to see how she can't get up or walk well. My main concern is her falling which is huge risk. I hope I can talk her into letting pt come today and get it started or I know she will go back to a rehab. I'm guessing if she says she can't walk, its true and she wants you to know ahead of time. Best of luck and prayers
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The facility must do a home visit with your mom before discharge. You drive mom home and pt person follows. He or she observes mom enter home (by climbing stairs or whatever else is required. She observes mom move about house and can determine if any modifications need to be made. When this was done for dad, we added railings to the front steps, a grab bar inside storm door to assist stepping up over threshold, a chair to rest in just inside the door, a new chair with arms for in the kitchen, grab bars in the bath, a higher toilet seat, and a half bed rail and a slight rearrangment of furniture to accommodate his walker. Also, once they saw the distance from the bedroom and livingroom to the toilet, they knew he needed to do more walking. On another rehab stint, the pt person could also observe my mother's effect on him as she was encouraging him to ditch the walker altogether when he wasn't ready for that. On that visit, dad had been up since 4 am worried about the home visit because he thought it was discharge day. He didn't think he was ready, but was trying to trust that the facility knew what they were doing. Deep down he knew it was too much. As aggravating as it is, it's good that your mom is voicing her worries. If you have a few more days, try to stop by and help your mom walk (after they have okayed you on technique) so she can log in more time on her feet so she can feel more ready. This requires dialogue with pt so you are supplementing mom's pt schedule, not overloading it. The facility should arrange for pt in the home through Medicare to help her progress as well.
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Isthisrealyreal Feb 2019
Lynina2, in AZ you cannot remove a patient from rehab, if you do Medicare says they are to well for rehab. They are promptly discharged if you decide to override them.

I couldn't take my dad to pick an AL, he had to go site unseen.
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Oh geez mom, I am sorry to hear you can't. Guess it's time for placement because I CAN'T care for an invalid.

As much effort as she puts in, is as much effort as you put in.

Either she will make the effort or be placed, make it her choice, then she can only complain about herself.
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I'm assuming she has been in the facility for rehab specifically? When you say skilled NH my first though was if she is living in a NH why is she coming home but if she was there specifically for rehab with the expectation she would go home when ready that's different. I'm curious about what landed her in rehab in the first place, was it a fall or a broken hip, something like that? I can certainly see fear being a factor and if that's combined with the knowledge and maybe even pleasure of being waited on... My question would be though does she have any interest in independence? Does she have friends or a social life at all, does she like to go out for any reason or is she perfectly happy lying in bed and being waited on? I mean prior to whatever landed her in rehab. Is she meeting the mark of 124ft because she wants out or is she saying she wont be able to walk at home because she is ready for permanent residency in a NH or AL? If she doesn't want to stay I would be clear that if she isn't well enough and able to walk around on her own at home she isn't ready to be there and if she doesn't think she will ever be able to walk around and do things for herself at home (even though she is at the NH) it's probably time to look at a place like the one she's in that offer permanent residency so she can have the proper help and care. I would offer to her and insist with the rehab and or doctor, that a PT/OT assessment should be done if and when she does come home both to make the house safe for her and asses her ability at home to get around and if they say she is capable and the rehab people are saying she's capable, she probably is. But if she still feels she can't and they can't find a reason for that she will either have to work on finding and fixing the reason for that (geriatric psyc perhaps) or again back to finding a living situation that meets her needs because if she isn't mobile on her own around the house then it doesn't meet her needs.

There may certainly be a part of this that is the rehab moving her out of the rehab bed or she may just be passing the milestones with flying colors, if telling them she doesn't feel she can walk unassisted when she gets home doesn't elicit attempts by the PT/OT staff to help her feel more secure about it or at least get the bottom of why I lean more toward them getting her to meet minimums and moving her out which gives you the other possibility of pushing back on whether or not she is ready or not, don't just take their word for it you do have some ability to push back here and don't have to simply take their word or first word/assessment on everything. Medicare allows for challenges, doctors can challenge and I think you can ask for a second evaluation and be present for it to see just how capable she is. You could then bring out the insistence with her and PT that she doesn't think she can walk at home, attempt to force them a bit on helping you deal with that.
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Lymie61 Feb 2019
Sorry just noticed you said you were "bringing her home today", ignore the parts about working with the facility she's in or any pre-release stuff. I would still have the discussions with her but get VNA with a PT/OT evaluation and then probably sessions in there asap. Doctor can order it if they haven't already.
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Have you actually seen her walk. I only ask because my mom would tell son's & others me too she walked today & went so many feet. When I started watching she actually hobbled with difficulty. I understand different situations. No matter how much you try to tell them to move they just don't. Now mine is bedridden in NH. Your mom is young, hopefully if she thinks she will go to a NH & lose all assets & freedom she will change her mind. My heart goes out to you. Good luck.
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Why don't you keep her in a facility where medical professionals can take care of her?
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ImageIMP Mar 2019
Sorry... If I'd had any way I could handle it, my Mom would have come home with me... She was injured in several facilities that were supposed to care for her - as well as a lot of other issues that were deficiencies but not physically injurious. I will never trust any facility to "take care of" anyone I care about without my constant oversight and advocacy. As it was, a CNA "professional" let her slip, break her leg, and it ended up killing her... If you can handle it - have the resources, support, environmnet, will - I'd encourage her to come home, but if she's cognizant enough to understand, impress on her that it depends on her willingness to do her part as well.
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My mother did the same thing, I had to have a heart to heart. Explained that the less she uses the weaker she will be to enjoy the things she loves to do. I also had refused to eat for three days and got hospice involved and she miraculously recovered and began doing the things she needs and can do, every day is still a challenge with trying to play helpless but I continue to remind her and prob her with queues. I am told this is all part of dementia and her stage, some days better than others, take one day at a time.
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Hire a private duty nurse: They are NOT Independent Contractors (i.e. 1099). You are the employer and there are some things that you need to do. You can do it on your own or use a service like HomePay (part of Care.com) which is about $1,000/year:
Let HomePay take care of all your household payroll and tax needs.
Call 888-273-3356 for a free consultation or Visit care.com/homepay, for more information and a video tour of their services. I am not affiliated with this company, but they have a great website that may help your mom get the extra care she needs if you are not there.

Here is some useful information that I got off their website:
The household employer compliance checklist:
Compliance helps protect you from expensive tax and legal problems, may entitle you to tax breaks, and provides your employee with critical short-term and long-term financial benefits. Families are required by law to meet the obligations outlined below:
1. Obtain household employer tax IDs (federal and state)
2. File New Hire Report
3. Calculate employee tax withholdings and track all federal and state employer taxes
4. Prepare and distribute paystubs
5. File quarterly state employment tax returns and remit state tax dollars (employee withholdings as well as state employer taxes)
6. File federal 1040-ES four times per year and remit federal taxes (employee withholdings as well as federal employer taxes)
7. Prepare and distribute Form W-2 at year end
8. Prepare and file all required year-end forms with the state and the Social Security Administration
9. Prepare Schedule H and file with federal income tax return

Extra stuff to think about:
1. Child or Dependent Care Tax Credit: This tax credit allows families to itemize care-related expenses on Form 2441 when filing a federal income tax return. 
2. Workers’ compensation insurance: Many states require household employers to carry workers’ compensation insurance. This protects your employee against financial issues resulting from work-related illness or injury. A workers’ comp policy can usually be obtained from your existing homeowner ’s insurance carrier.
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She's messing with you - she is planning a guilt trip & this is her first step - why are you bringing her home because she obviously does better with professionals?

Could you provide more details so we can give you specific help?
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Just wondering how you're both getting on? Any developments?
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Agree with 'Moecam' that your mother is messing with you. (It's hard to understand, but my mother does it constantly). Please don't let her run you down & ruin your life.
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