Are there restrictions on family members being actively involved in the care of loved ones living in a nursing home? -

Are there restrictions on family members being actively involved in the care of loved ones living in a nursing home?


We cared for Mom - who has Alzheimer's - in her home for several years. It reached a point that Dad's health was suffering and he decided after mom's last hospital stay to not bring her back home.
Mom is pretty advanced in her dementia. She rarely speaks. If she does she is not able to communicate. She can answer yes and no questions, but your never sure she is really answering the question you asked.
She is completely incontinent and is unable to tell you she has a mess in her pants. She still feeds herself, but has to be handed her utensil sometimes. And there are days we need to actually feed her some of her food. She has a Parkinsonian response from the brain damage - which means she goes backward instead of forward and has trouble with lines on the floor and doorways. She is a large woman - over 200 lbs - I think around 250. She wears 2x clothes. And has arthritis in her knees, spurs on at Achilles and plantar. The many steps of standing are confusing and painful.
Mom stands for me. She walks with me. The staff at the nursing home have great difficulty. They go too fast. They expect her to understand things she is not capable of understanding. And when she does not stand they say she is uncooperative and refusing. One day she was beginning a gout attack, someone had sent her shoes to laundry and they stood her in her sock feet on a slick floor and determined she was unable to stand and needed a lift. Dad and I allowed the lift during the gout attack, but then wanted to return to her standing and walking.
Unfortunately, this was soon after we had moved in and lots of staff got in the habit of her not standing and they are insisting it is unsafe for her to stand.
When we first moved in staff tolerated my being actively involved in Mom's care. She continues to stand and walk well with me. But not when I am not there. They continue to do things that do not work . They don't even give her a chance to stand but turn and pivot her pretty much tossing her in the bed scaring her half to death. That is hard to watch when she stands with me, walks to the bed, and sits down. I have been present with 1st shift the most and they are comfortable with me. And when I can't be there - mom has more problems but they are able to stand and walk her. Second shift will not listen and have begun pushing me out being a part of the transfers. I got a bit insistent - mistake I should gave kept my mouth shut been glad 1st shift was reasonable. Now 2nd shift has gotten management to say I cannot be a part of transfers. Unfortunately just as this was coming to a head Mom had a fall with myself and another cna. Which gives them a way to say she is unsafe with me. The cna was behind her and the chair got caught. She could not get it under Mom.
I go every day. I have actively cared for my mom for years. I am thankful for the care they give - but when I am there I want to card for my mom. Management says it is their policy that family not be involved in transfers. Well what they call transfers are far more traumatic and dangerous for everyone than a calm walk to bed. Standing is hard. But once she is up she is fine. I have had therapists tell me that it is a part of the Parkinson Ian response because it is the simultaneous forward and up motion of standing that is so confusing to her. Once she is there - all is good. It is necessary to believe she will stand and get her there. They don't believe she will stand and they let go of her and switch to a lift or they throw her to whatever the target is and leave her there.
Can they legally prevent me from continuing to stand and walk her?

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The nursing home setting is an impossible place for communication and cooperation. My husband has worked in a couple and we have dealt with a couple withh Mom and it is always the same thing. Each department has different aims for the same individual and each shift has conflicting ways for meeting their aims and they all think yhey are the ones doing it right and everyone else is wrong. It is a flaw in the overallsystem and i suspect a lot of it comes from the laws behind the entire system. Geography has a huge impact on culture. And it is the laws that set the geography that nursing homes exist in. It is the laws that are the framework the culture is based on and the culture is bad. The geography of all these departments responsible for all these different facets of care is not conducive to communication or cooperation.

Yes we were penalized. Mom most of all. But that penalty was a consequence of an overall situation - not a planned punishment by staff. That makes it more frustrating - not less.
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It's terribly shameful that we get penalized for trying to get our parent better care. The same thing happened to me.
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She walked with PT Thursday. They said she did good. They did their evaluation with the staff she does the worst with right after she had a shot in her ankle and put her in a hoyer because she wouldnt put any weight on that ankle. The next day shes all good and that is just ignored. SO VERY MADDENING. essentially ignored because it is not being weighed in now. Oh there is kind conversation. It was a very frustrating day and i am glad there is a place to vent.
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This facility is the closest thing our area has to a memory care facility.

It is just so frustrating because if i had all the information i needed when she was admitted this would not be happening. Physical Therapy should have done an evaluation immediately on all her transfers and how she did them, made their recomendations and the care plan should have been written from that. The cnas should have learned from PT what her cues are and how best to do this.
If it had been coming from PT it would have made sense. But now its just all a mess. She will be in the hoyer all wkend. I am not sure what she will be able to do by Monday. PT did not see her yesterday or today. 4 days never standing. She will only know hoyer cues. After all they said Tues that was positive and affirming. MADDENING
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I am sorry you are experiencing all the problems with her care and understanding her needs. Is there a Memory Care facility near you? They are specially trained to meet the needs of the Cognitively Impaired.
Good Luck.
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Don't blame yourself at all. You are there and you are trying and doing the best you can and you care. I only hope to have someone doing those things for me when my day comes. Your mother is blessed.
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Today therapy came down to work with Mom while I was there. We had good talk. I was able to explain that Mom had gotten a shot in her ankle yesterday a few hours before they did their evaluation. I am not sure why Dad did not tell them at the time. They specifically asked how she does stand - what are her cues, what things throw her off. They wanted to see her stand so we went in the bathroom where she does her best stand and they were flabbergasted.
The motion of leaning forward and coming up is very frightening to Mom. In the bathroom they become 2 separate things. She leans forward to the bar - and then we 123 UP. The thing is she had to much farther back from the bar than most would think. The lean has to done . To reach that bar is a stretch but hands on her elbows and assuring her you are doing it with her - she does it. And if the stand is done immediately it will happen.
So we took her for a walk - once again WELL SHE CAN WALK
Then we took her down to therapy. They wanted her stand using the parallel bar, but the first time they tried she was too close so that was a no go. And once its no - its no. They took something - called a standing trainer maybe? - she wouldn't at first but the gal hung a pillow case in front of her crooked and she went up. Nothing is allowed to be crooked in my mothers world. She stood for about 30 seconds. And they tried a 2nd time and got a no. I looked and said i thought the chair had moved forward. They pulled it back a bit and up she went.

Their goal is to get her using the Stand Aid , which she flatly refuses at the moment. They said they will establish cues with her and write out the exact verbage for staff to use , and train staff how to stand her.
They said she should still be able to stand from the toilet and walk every day. She may be able to walk to bed from the toilet in the evening also.
Well that heads things in a better direction anyway. We'll see how it goes.

Thank you so much for all your help in getting my perspective better. I had a nice talk with some management today. I dont think i am the ogre of the Alzheimers area.

2nd shift will always believe she wasnt standing for them because my working with her in the morning gave herconflicting messages. Its ok. I know that the way they took her hands not her elbows , guided from the sides not the back, held only the gait belt not her pants, and alwys had her too close to what she was holding is ALWAYS a no. ALWAYS . If I was trying to stand her the way they were trying to stand her it would not have worked either. But it is not useful to go there with them . We are headed towards a best case scenario at this point and i would way rather go forward.
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Today has gone better than expectd. More later.
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Ok all that said.
I wish i had talked this through with you all sooner. You have helped - but it doesnt matter anymore.
They decided therapy needed yo re-evaluate. Therapy evaluated her with a 2nd shift perso so you know how that went. Now she is a hoyer and she wont ealk or stand.
Largely this is my fault and you will recognize the things i did wrong. It didnt have to go this way and if i had a ll the information when i needed it this is not the way would have gone. But that to - is my fault.
Here is the thing. I try to see what is needed to get done whatever needs done. And i dont mind stepping up. In some situations that is good. In some not so much
At 52 i ought to know when it is good and when it is not.
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It is a battle you are right. And it is the disease to battle not those helping her. A good reminder.
I tried. I really really tried to approach things that way. And honestly i think that the 1st shift people view me positively. Not 2nd. I could never get the message communicated in a positive way. That was my job and i failed.
My goals. Hmmm. Yes we know there is a time when she wont walk. It is not now. Very recently she was walking at least 90 to a hundred feet. There are shiny floors here. With lines that she doesnt want to cross. She has never walked as far here. I was shooting for a several short walks a day.
That wont happen because not everyone is working toward that.
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