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My mom has been losing mobility for some months and in April she had a fall and went to ER. No injuries found, but as she could no longer get off a bed (due to general decline in mobility), they recommended inpatient physical rehab. This was on April 22, and after ruling out any infections or other issues, she went into a skilled nursing rehab on April 27.



She was basically taken from hospital to this place and plopped in a bed. No one came to see us or tell us what would happen. She did get a lot
of PT and OT daily, but didn’t transfer correctly and due to arthritic knee that can’t bend, she can’t stand up straight and had a lot of fear about transfering. She has been essentially wheelchair bound since arriving there.



It wasn’t until May 9 that we got to meet with her case manager - this after we asked if we would get any reports about her therapy. (NO ONE has given us any reports without us calling and calling.) The case manager RN was very no nonsense and said she wouldn’t recommend discharge if there was a chance she would fall and go back in rehab. We understood. She told us to look into a PACE program for her, which we did, she went through the long intake process and signed up for a July 1 start.



Meantime, during all this long process, her transfers have been hit and miss. Some days it seems she is getting the hang of it, other days she goes backwards. We keep calling her social worker and the case manager and making sure they know she’s enrolled in PACE (the PACE people and SNF people probably talk to each other, but we just don’t know - no one returns our messages when we ask about her tentative discharge date of June 30).



I am increasingly anxious about my mom’s having gone backward during this period of time, and I can’t imagine they would discharge her to PACE the way she is now - but we keep calling the social worker and case manager to touch base and they just don’t ever call us. WHEN do we get another meeting with the case manager? Is this normal? We feel so in the dark. Why is there such poor communication? We’re so frustrated and we want to know what does - or doesn’t- happen on June 30. PACE is bringing equipment to our house already, which is fine, but isn’t the SNF supposed to give at least SOME update to the family about the patient’s progress yea or nay?



I just don’t think my mom is in any condition to come home at the end of this month and we really need some coherent communication from these people. On top of it she is having an arthritis flare that she never had before, in her wrists, preventing her from doing any sort of meaningful transfer work at all (she can’t grasp the grab bars) and they’re putting nothing but Aspercreme or Voltaren on apparently.



Are we wrong? Shouldn’t we have heard from a social worker or case manager since May 9th?!?

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There's probably a good chance they may keep her longer, hence the lack of communication and update. Is mom still of sound mind? If so, she may get more information then you.
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jdmason Jun 2023
We wondered that also, but in the beginning the case manager did want to meet with family so we assumed they would always want to. While my mom has no dementia diagnosis (she passes every silly questionnaire exam with flying colors and can sure draw a clock face), she is psychologically just not functioning at an adult level these days. It is sometimes impossible to get a straight answer out of her, particularly on days when she has 02 sat issues or is in arthritis pain or just has decided to be uncooperative. Sadly this has been a long slow decline for her this way. She just hasn’t got the adult maturity level right now to be trusted to give us straight answers. I don’t know what you do with such a person. I am her POA and health proxy but she is technically still “of sound mind.” But ask her any serious questions about her health care and she starts going off track immediately. I’m sure this is an avoidance tactic for her, but, we have important decisions to make about her long term well being and she is just “not there for it.”
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No, it’s not normal. You should have been notified and given a date and time to discuss your mother’s progress while in rehab.

Have you gone to visit her on a regular basis? If so, what have you witnessed? What is your mom telling you about her experience there?

My mother improved when she was in rehab. She worked really hard and it paid off. My mom had awful knees also. She was in a wheelchair after her exercises. They have intense workouts and are wiped out afterwards.

Not everyone has good results from OT and PT. Still, they should be keeping you informed. You shouldn’t have to beg them for information.

My mom’s roommate did not improve from rehab. It was decided that she was not going to be able to return to her home and that she would become a permanent resident in the long term section of the nursing home.

Best wishes to you and your mother.

As MJ states, a person is only allowed to stay in rehab for a specific amount of time. Any additional time is paid for out of pocket.

In our meeting they decided that it was best to keep mom for a couple of extra days in rehab. She paid for the additional two days herself.
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Thanks for the responses. I believe my mom is getting rehab level therapy there. She is in the dedicated rehab building of this (large) SNF. She goes to their therapy room at least 5 days a week and her PT and OT therapists are actually the most responsive people in terms of communication and I have met one of them in person. Mom tells me every day about the activities she is doing. Her PT recommended she get a cortisone shot in knee so she could progress more with exercises she needs to do and marks they would like to see her hit (ie walking a few steps with walker, which she lost the ability to do around the time of her fall). The problem is that while we had her transported to her GP at great expense and effort to get this shot, it unfortunately did not help as her knee arthritis is so severe and she can no longer bend the knee, it’s frozen in a bent position (and no one would operate on it in the past because of her severe arthritis and general physical condition).

So, she’s getting therapy and I know not everyone does well with it. She has focus and motivation issues. While she aces every dementia exam, she just doesn’t have very good judgment and grasp of her situation. She’s childlike and doesn’t take things seriously and that is a personality trait exacerbated by age (80).

My complaint really is with the extreme lack of communication from the case manager and social worker. My sister and I have left messages. We’re getting more alarmed now because this supposed discharge date is approaching. She’s starting PACE on July 1 and that means PACE becomes her medical insurance. We literally have no idea if she will actually be discharged on that day. (While her home environment is being prepared with the help of PACE, we have to arrange transport to her to get home etc so we need to know.)

My sister and I both work and I try to get there every day after work but of course no one is around but the CNAs and floor staff at that hour. But at least the social worker and case manager could return our calls?!

All I want is an assessment of progress (we know there hasn’t been much) and something official and just for someone to talk straight with us about anything whether it be negative assessment or not. It’s concerning that we went through all this to get her into PACE and home care plan, but she is going backwards physically.

Having had experience with ombudsmen (at a different facility for a differently family member), I know they’re overworked and are focused more on physical abuse of patients. (This just feels like… family abuse.)
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jdmason Jun 2023
PACE is a Medicaid funded program in NY state that is Program of All Inclusive Care for the Elderly. You get durable equipment and limited daily aide help, the person is transported to a day center for care and activities a certain number of days a week, and PACE doctor team becomes their doctor. We have been impressed with what we have seen so far of PACE, but sadly I am afraid my mom has deteriorated just in the few weeks it took to get her enrolled. They don’t do bedbound patients. My mom isn’t quite bedbound but the specter of the dreaded Hoyer lift is looming in the distance.
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they sound sloppy, uncaring, unprofessional, indifferent.
if possible, move her to a better, kinder, more caring place, where they really want her to get better.
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Unfortunately, as Igloo observed in an answer just yesterday, PACE programs are the new darling out there, and are often used inappropriately for patients who are too debilitated for them.
This results in a lot of popping back and forth from home to PACE to hospital to rehab and back again.

You are doing what you can and now is the time you must do it FULL TIME to tell them how and why PACE isn't an appropriate placement. You will need to discuss with discharge planning what you say. Get the social worker involved. Your mom may need to be considered for other placement options. because the truth may be that your mom cannot come to the level where the PACE placement would be good enough.

This is all coming close so WHOMEVER IS THE POA needs to be on this like an ant on honey.

I cannot remember what thread Igloo answered yesterday but she explained pretty thoroughly why PACE is so often used today instead of other options. If you read AC daily I hope you will come upon that thread. If I see it again today I will give you a link here.
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jdmason Jun 2023
Actually PACE probably is the most realistic placement right now. My mom does not have dementia and wants to go home. As POA I can’t make her go into a long term facility. And with her already accepted into PACE I can’t claim her home is unsafe. I feel like we have to go through this to make her see the light. It’s not going to be easy or happy. I just need to know what is happening on June 30 and I need to talk to someone at the rehab to learn that.
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The NH that Mom is in schedules care plan meetings quarterly, however they are mostly responsive if I call or text them. I rarely get calls from them unless Mom has fallen or is sick.
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JoAnn29 Jun 2023
This is Rehab. She should have care meetings every so often.
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I had to look up PACE. If Medicare is paying for Moms stay, Mom is now wracking up a bill. Medicare only Pays 100% on the first 20 days, 50% on the next 80. Moms been there 56 days. 36 are 50%. Depending on the daily charge, lets say is $400, Mom is out of pocket of about 7k. If she has a good suppliment hopefully they pay the 50% or a Part of it. If on Medicaid, they should pay the balance.

IMO the NH is milking Mom. In almost 60 days she hasn't improved and she may not. If Mom is going to be responsible for paying out of pocket, I would talk to the finance department and tell them there is no money. I will bet Mom will be discharged right away. I did this with my Mom, they released her on day 18.

You need to call the the Administrator. Tell him you have not been able to contact anyone concerning Mom. That as of July 1st she needs to be discharged because she will be receiving in home care thru Pace. I hope that you will be able to get in home PT too. Moms PCP can order it. If u get nowhere with the Administrator, call your State Ombudsman. Explain that you need Mom discharged and why.

Once Mom is home you can have her evaluated by PT in home care. You do not mention Moms age. A fall can be serious and you say Mom had prior mobility problems. She may never be as good as she was. No amt of PT is going to help.

By the way, my Mom was in rehab for 14 days before I had a care meeting that I was suppose to have within 7. That is the first time I saw her cash manager. Up to then I only dealt with the aides. I spoke to a SW once, she was worthless. The Therapist called to get some background info. My Mom sat most of the day in a wheelchair. And all I heard in the meeting was she can't remember her excerises from day to day and she does not take direction. And I kept saying...she has Dementia. But they kept her 18 days. I swore she would never go to Rehab again. Next time she would have PT at the AL where she lived.
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KNance72 Jul 2023
Exactly I told the Nuerologist My Dad would do in Home PT , OT at Home - No Rehab . It seems People get worse In these Places .
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Your mom Is a cash cow they are Milking the Insurance . What I would do Is get an appointment at her Primary care Physicians Office . Call The doctors Office and say " You Need a VNA nurse , CNA , PT and OT and when can you bring her In ? " Hire some People from Care.com . Check the Next Door Neighborhood App - Lots Of People advertise as caregivers = Perhaps you could find a Live In caregiver . Get a social worker to help you with elder services - Meals on Wheels , CNA , etc. Get your Mom Out of there . No Its Not right that the RN Has Not talked to you in 6 weeks . Report her to Medicare and tell them " you are Not getting the Information you Need " Tell the RN " You are reporting her to medicare for Lack Of Information . " get your Mom Out of there .
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Its been month since OP posted. I so hope everything got resolved by now.
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