Mom was just hospitalized for extreme lethargy. Tests revealed that her hemoglobin levels were very low and a stomach lining issue was revealed to be the culprit. She was treated and almost immediately her personality returned and she looked and sounded 10x better. After a few days she was discharged and sent to a short-term rehab facility to receive some therapy.
Now, despite no medical reason for it, she is claiming that she has "lost use of her legs" and refuses to even try to sit upright, even to eat. Today she even begged me to feed her, which I refused to do because there's no reason at all that she needs to be fed by someone else. When I try to raise her bed she carries on like it's torture even though it's a mere four or five inches.
I'm at my wit's end with this, as is everyone else. Again, there's no medical reason why she cannot sit up and at least try to move around, it appears that she just doesn't feel like it or fears the pain involved. I tried to explain that this will pass after some repeated movement (she was walking rather well just a few weeks ago and she hasn't suffered any sort of injury) but she just won't do it. I think she's totally blowing a real opportunity here and it's maddening to watch. I'm even beginning to become hesitant to visit her for long as I just can't stand to see her lying there like a lump trying to eat while lying down almost flat on her back.
Her mother died shortly after breaking her hip in a fall and I believe this is why she's totally terrified of moving. I've explained this to every single healthcare person she's worked with but it hasn't helped at all. I firmly believe she needs to be forced into a sitting position for a while just to prove to her it won't kill her but they either can't or won't do it, mainly because she wails in a total panic if anyone tries. I just can't get through to her and it's miserable. Anyone ever encounter a situation similar to this?
That turned into refusing to stand. PT again, got her to stand, but she continued refusing.
Then it became refusing to sit up, which degenerated into refusing to transfer or assist with her own transfers or scooting herself up in bed. She would sit there and pretend she couldn't cough to clear her lungs because she had slumped down. It was unreal. I can't get my head around somebody who would sit there and obviously need to cough but won't because of the need to put on a show.
Now, over the period of about 6-8 months mom is completely immobile. She won't even try to hold a cup if you offer it. I caught her reaching for and holding onto a full cup of ice water and sipping from the straw when she didn't think anybody was looking.
She is 100% max assist on everything, which includes using a lift to get her out of bed.
I think it started out as part of her bipolar/borderline/narcissistic mental illness and has progressed really fast due to the dementia. The dementia really will take these abilities away in time, but the mental illness got it started way too early. By becoming totally helpless on her own, she has lost muscle tone and control that won't come back because of the dementia. It was a very slippery slope and nobody could stop it.
Having a loved one with mental illness and dementia is doubly painful and difficult.
I do understand now the frustration you expressed on your other post.
I think the fear that she may also die because she saw her mother die after a fall is a legitimate one, especially if she was a child at that time. Those ingrained memories can sometimes become distorted or more intense over the years. The circumstances are different, but that's not always how the brain stores them. For her, it's a legitimate fear, so I would treat it as such and deal with it on that level.
It seems she's calmer in your presence, and you are very devoted to being there with her. I recall that when the therapists come is a questionable issue rather than a set time, but I'm wondering if you could get perhaps one day's schedule from them ahead of time, come early and spend time with your mother listening to her favorite music, or doing other things that relax her.
Petting animals is soothing but if there's no animal therapy, you could buy a nice stuffed animal (with no buttons or things that could be pulled off) and leave it with her. I've found that artificial fur can provide a substitute for real fur. (There's a reason children like cuddly, soft, stuffed animals.)
That way she might not be as tense and fearful when therapy starts.
I'm also wondering if they're forcing her to stand; if so that's probably part of the problem, if not the terror. My mother experienced that; one of the male therapists decided she wouldn't cooperate and advised that therapy be discontinued.
My sister, father and I got together, asked for a family consult, and came prepared to politely and diplomatically challenge that conclusion, which we did. Before that though, we took her for an appointment with her orthopedic surgeon who was angry that the therapists had been forcing her to walk on her broken leg.
He advised that she should be on a non weight bearing status for 6 weeks. With that statement from him, we then met with several of the staff and politely backed them down with their accusations of Mom's noncompliance.
End result: the therapist who said Mom wouldn't cooperate was moved to another facility; a very personable young woman with a lot of patience became mom's therapy, and we moved forward.
For your mother, the therapists can easily give her strengthening exercises either while seated or on one of the very large therapy mattresses that can be raised and lowered.
If she's afraid to stand from her wheelchair, she can be transferred by slide board directly onto the raised platform. That might allay some of her fears.
What kind of treat can you provide her after a successful therapy session? More music, a favorite tv program, tour around the facility, a stroll outside to the garden....what would she enjoy doing that's relaxing? I used to take my mother and then my father to the music room and play for them, either before or after therapy.
What's the progress on psychiatric involvement? Without challenging anyone else's suggestions, which are good, I think that the fear of falling she faces is the kind of trauma that anyone can face after traumatic events. I've always thought that even civilians, especially elders, have their own kinds of PTSD episodes. Perhaps you might even be able to find a geriatric psychiatrist who addresses this issue.
You could also tell her that falling doesn't necessarily result in death. My father fell at age 94 and broke one hip, fell the next year at age 95 and broke the other hip. After that he decided he wasn't going to break any more hips because (a) he only had two hips and both had been broken, and (2) he intended to live to be 100. He's very determined though; not everyone has that mental fortitude. But perhaps just sharing his story may encourage your mother that life after fall can be relatively normal and doesn't have to result in death.
I am aware though of all the dire post fall statistics; they were presented to us as a kind of horror story.
It takes a different approach to re-program the emotional and physical response to certain thoughts and triggers - after the triggers are identified! I don't know if that would even be remotely possible with a dementia patient, as it requires learning and remembering. There are thought and breathing exercises that have to be done on a fairly consistent basis to work.
The suffering patient has to put in a lot of effort to improve.
Based on what I've seen with my mom and other peoples' stories here, geriatric psychs don't have a lot of tools to work with. All they can do is try to control symptoms. All you can do is provide in-the-moment reassurance and keep trying what seems like a good idea at the time.
It really is trial & error in these kinds of situations and learning how to appeal to the emotional part of the brain, which is not as easy as one would hope. Rewards, praise, more attention for complying than not complying are definitely good tools to use. Give no attention whatsoever to undesirable behaviors unless it's a safety matter.
Nobody is probably ever going to stop that inner monolog going on that reinforces the mistaken thoughts of "I'm going to fall & die if I move". If mom has a history of allowing herself to indulge in catastrophic thinking, it probably won't change now.
As long as you know she's safe may be the win possible here.
They've done a good job at recognizing this as being her central problem. She's supposed to see a mental health professional tomorrow who might try to prescribe something that might alleviate the panic. When I try to discuss it with her she's VERY evasive and tries to either change the subject or tells me "tomorrow". Today I intentionally left her and the therapists alone (they're very good and very patient BTW) thinking that maybe I was somehow holding her back, but when i arrived they told me it was same old, same old.
IMO if we can break through the wall in her head we can at least get her to a point where she could use her wheelchair and gain some functionality. She's made definite progress physically and mentally, but this issue is still the main sticking point hindering her recovery.
Today I tried to have a nice calm happy sort of talk about her physical pain. Where it specifically hurts when she tries to do a specific thing, what hurts all the time, what makes it feel better and so on. But she's always very vague and evasive about it. I mean maybe she pulled something or tore something and it really hurts, but she's not pinpointing anything so it's tough to tell. And when I prod re: her fear of falling she's even more evasive. Right now I think she has no confidence at all in her ability to not fall down and injure herself and it's become so overwhelming she's locked up with fear even when she's in a position where it's totally impossible to fall at all.