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?
I've worked in rehab my entire adult life and sometimes patients are flung into a chair or a bed because when they are gotten up to transfer their knees start to buckle and a fall is imminent. If a staff member has ahold of your mom and your mom's body begins to send cues that she could fall it's safer to fling her into her chair or her bed than to stand there and coax her to move her feet while she crumples to the ground. And it's not actually a "fling". Staff has control over her body, she's not going to fall. It's just a safer and faster manuever to get her into a chair than to depend upon your mom to make the transfer herself. And when I say "faster" I mean that it's faster than staff holding your mom up waiting for your mom to move her feet. The longer she's up on her feet the bigger the risk of a fall.
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.
With any form of dementia, mobility declines. My MIL not only needed two aides and a Hoyer lift, she had a wheelchair that tilted back to support her head and keep her from falling out. It's the progression of the disease.
I would abide by the rules of the Staff at the nursing home. You have to think of it this way, this isn't their first rodeo and they have dealt with hundreds of patients. And there are liability issues.
When my Mom was in long-term-care, I would just remove myself from Mom's room when it was time for the Staff to tend to her. I mainly went to have a short visit with Mom and pick up her laundry. Sadly my Mom [98] didn't know if I was there or not from one day to the next.
I will write more complete individual replies later. I really need sleep at the moment. Today has been hard. But i did not want to postpone my thanks
Good Luck.
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