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?
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'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.
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
What i had wanted to happen was to show them what her cues were explain what her triggers were and step out of the pucture. To begin 2 cnas came down . They leared her cues and trigers. The day they were going to do it and me watch - only 1 came down. Then Mom came down with a gout attack anda lift was used a few days. 1st shift did not document the gout. 2nd shift didnt know about it.i wasnt there for 2nd shift that week. The whole thing fell apart. And i never had 2 cnas with me again in 1st shift.
Anyway - had i known what you are telling me ,my ENTIRE approachwould have been different. Am i not supposed to know that for some reason? It makes NO sense to me that something that could result in sanctions and fines wad NEVER explained.
Even when the Asstant Director of Nurses came down and told me i couldnt do this - aftwr the fall - she made it sound like a company policy NEVER mentioned.
I should not have had to get that information but i'm glad i did.
When Mom was first in the hospital - i was in the room when she was cared for. She was SUPER weak and i would help hold her up on her side for changes. I was always on her front side. She had a small reddened area when we were admitted. I asked at every change how that was doing. Every time i was told ut was good. The day Mom was released she was stronger. i was told it looked pretty good. I was able to lean over and look. She had an inch long half inch wide completely RAW place oozing wtith blood dots. FAR worse than when we went in.
At the last nursing home and in the hospital i did not always arrive early. If breakfast had started there was someone feeding her without her teeth in. We finally left them sitting on her table with a note. By then she was eating on her own again. Several times the note and teeth were pushed aside and she was eating without them.
Usually Dad took her teeth out in the evening. But if he wasnt able to he would me tion it to someone or leave note. Nearly always they were still in when I arrived in the morning.
She has 9 teeth of her own thatneed brushed daily. That is not something cnas are able to remember.
The wound is a blatant disregard. The teeth are details that are easy to miss. The were missed entirely too much at that location. An overheard conversation made it clear to me that teeth were far less than a priority.
All thst said - in general i do trust the cnas . Many have been caring and diligent. I have also seen uncaring ones which reflects on them not the profession. It is a tremendously hard job and i respect those who are able to do it.
When mom was put on a sliding scale for her insulin , it was administered wrong. When i questioned it the RN insisted what she was doing was right. She read me the order which could be interpretted 2 ways. She refused to contact the docto and gave her the wrong dose. I did contact the doctor. The next day she smiled sweetly at me said - oh we got the insulin figured out. She gave it to her the way i had said - and thst was that. And by the way we had a very pleasant conversation both days. I also always ask how much insulin she is getting.
Things happen . Generally i would say that woman is a good nurse. I am glad i was here.
I mistakes. Everyne does. I will be here as much as i can. I will be as involved as i can be because that is what gives me the knowledge to know when something is not right. I want to observe good nurses and cnas so I know when something is not right.
Each of us does what we are able to do and what is right for us and our loved one. I am glad you did all you could. You are a good daughter.
Mom never asks for us. We are always here during the day except maybe a couple of hours . For the level of dementia she is atshe smiles more and is calmer than most. I willdo this for her as long and as much as i can.
Also i watch them do things that trigger negative responses from her. Then they say she wont do what they want. There are cues they could do that would get a positive response. And everyone working with her used the same ones those cues would remain effective. But they dont.
When she is walking with myself or a staff member who does use her cues and does avoid the triggers it is not a shuffling frightening walk. It is a good walk. She looks down not up. But she does lift her feet and she does walk. During the gout attack that was not the case.
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.
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.
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.
Good Luck.
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
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.