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?!?
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.
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.
if possible, move her to a better, kinder, more caring place, where they really want her to get better.
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.)
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.