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Tinoose Asked March 2013

I moved mom into a nursing home. Every time I visit, she tries to leave with me and has to be physically restrained. How do you deal with this?

How do you deal with this? I feel so horrible when I'm leaving, and she's very distressed. She has dementia/Alzheimer's as well as paranoid schizophrenia.

Tinoose Mar 2013
SuziQ-- I *have* done that once or twice, but it feels awful. I get to my car and start to cry and wonder if I should go back and give a proper goodbye. My mom was very similar in ability as you've described your mom. But I have to say-- in the one month that she actually lived with me, I realized that her dementia was MUCH worse than I'd ever thought it was. It was very scary, upsetting, and the relentless-ness of the whole thing drove me mad! The crazy-talk I could handle (mostly because she has reverted back to Japanese, and I don't understand or speak much Japanese), but what tore at me was not understanding what she wanted-- she'd get this very plaintive, upset look on her face, and seemed to be begging me about something, but I had no idea what she wanted/needed. While she stayed with me, she had to go to the emergency room (I found her on the floor in the morning, didn't know if she fell or just laid down there, so I took her in to get her checked over). The in-take nurse tried to use the interpreter phone service thing that hospitals use now, and the Interpreter said that my mother was just saying bits and pieces of things and wasn't making any sense at all, it was like she was saying "Fish sky and then I father move, frightened..." just random words and phrases. And then she'd say something like, "Oh, my mother is coming to get me!" It helped a little to know that, but I can't shake that somewhere inside is a very frightened and confused woman trying to figure out why no one aournd her understands her or that her "mean ol' daughter" won't give her what she wants/needs. Have you looked into an assisted living residence for your mom? It's the most home-like environment. A a regular house with anywhere from 4-8 seniors, in private or shared rooms and a team of caregivers that do things like help with bathing/hygiene, laundry, cooking, activities. Since it sounds like she doesn't really need full nursing care just yet, perhaps assisted living home for memory patients would be good for her. It sure was for my mom. I wish she was still there, but the one she happened to be in was private-pay only.... If I ever win the lottery, I will put her back on the waiting list for the home she was so blessed to live in for 2 years... I'd much rather that place than a NH.

SuziQ Mar 2013
Have you ever told her you were going to get something for her or yourself and be right back? And then leave. How sad for you. I want to put my mother in a NH. She has dementia, but can still do everyday things, except cook, clean. She can feed herself, shower and dress. But she is from the olden days where the child should take care of her until she dies. I don't know how long I can handle her strange talk and arguing before I go bonkers.

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Tinoose Mar 2013
3pinkroses-- my mom is not on ANY medications. She's not been medicated since her first diagnosis in the early 70s when she was hospitalized for 2 months. Compliance is a HUGE issue, although I've been told that they can now dispense medication in other ways than orally (like a skin patch applied to the back where they can't reach it, or lotion form, etc). My brother is her legal guardian and conservator, and he has decided not to try to force medication back when the only option we were told about by her doctor was hadol in pill form. We couldn't even get mom to take a Tylenol when she has a headache or cough syrup when she has a cough, and worried about the pill (court said we had to try but we could't force her to take medication, and we did that). I think we need to revisit this, though, because her paranoia and anxiety is a problem. SHe did VERY well in the assisted living home, surprised the heck out of me! She cried and carried on at first, of course, And tried for months to leave, but the locked door was a good deterrence. The staff there were VERY good, they'd steer her attention elsewhere or encouraged her to go outside to the back yard where she'd soon be happily gardening. She was free to come and go into the backyard, and that ended up being just fine for her. She got to the point after about 6 months or so where she would walk me to the front door, stick her head out to see where my car was, smile and say goodbye and shut the door in my face, lol! The point was, she felt at home there. There were 7-8 senior residents and a team of 9 caregivers, usually 2 at a time except overnight. So even when she was up at night, there was an awake/alert caregiver who would greet her and hang out with her until she went for her next power nap. She didn't have that when she lived with me (husband and I needed to sleep, but since I was on leave from work, I got up when she woke me up so that he could get some sleep. I ended up on her schedule and rather crazy for it, for about a month. Took another month for me to ease back into a more normal schedule after she was gone). I'm not sure what the situation is at night at the nursing home--I'm sure they have staff there, but probably not as many, and not as gentle, patient, and kind as at the assisted living place. (I get it-- 7-8 seniors is easier than the 20-30 each are assigned at the nursing home). But in any case, her confusion has increased quite a bit and it's simply not a good place for her to be.

Tinoose Mar 2013
PandaRosa-- my mom loves to garden and just be outdoors, but they don't have the staffing to let her outside in the secured yard, I guess. I keep asking, and feel like I keep getting the runaround with the amount of "I don't knows" I get when I inquire. No one seems to be available to answer my questions or let me know what's going on. Another reason I HATE this place. She's on a waiting list for an Alzheimer's unit at another facility that has earned top ratings in their state inspections-- it's a 6-month waiting list. Just passed the 1 month mark.... 5 (or hopefully less) more to go....

Tinoose Mar 2013
Thanks for all your comments. I've done the grab and run thing, brandywine, but she's quick, lol! Mentally she is gone but physcially, she's still very healthy and spry --she latches onto me and starts jogging along side me to make sure I don't leave her (she's only 79 has been in an assisted living home since 77). She's new here, has only been here since February, so I know she's still settling in, but this is just hard! It'll be easier when she's in a locked facility for Alzheimer's (the home was locked, but it was private pay only assisted living, and Medicaid does not pay for a locked assisted living, only a locked nursing home, which is why she's in a nursing home now. Physically, she doesn't need nursing care, except for the bathing thing, but mentally, she needs a lot of supervision because she wanders). This home is not a locked facility, but they have Wander Guard. But the font doors must not be on the system. The other doors lock as they are supposed to.

Mostly, I just don't know how to deal with the guilt and the heartbreak because in that moment, she is devastated that I'm leaving her and she's being restrained. What a nightmare....

brandywine1949 Mar 2013
So sorry that this is happening. If they are under staffed in this way are they taking good care of her? This is what I do when I know Mom wants to leave with me. I will be talking to her and then almost in an impulsive way, I will grab my coat and purse, hug her and make a fast exit before she knows what is going on. I know it sounds kind of silly and perhaps cold but that's what I do.

PandaRosa Mar 2013
My heart goes out to you. I trust she is taken care of at the home. Is she allowed things from the outside, a project she could work on, photos, scrapbooks?
If this is on-going, maybe the staff has an idea that could help you. Even if it is under-staffed, this can't be good for them to have your mother fussing and crying, and having to be held, calmed down. God be with you.

3pinkroses Mar 2013
Hugs and hugs to you - this is truly gut wrenching and my heart goes out to you. Do you think her doctor has her on the right meds to keep her calm? My mother had multiple mental health problems and once she was taking the proper medication; it helped tremendously with coping skills.

She was more content and much calmer. I had many conversations with the social worker as she was more helpful with my concerns than the nurse manager. Hope you can find something that helps. Take care.

Tinoose Mar 2013
I've tried that, this nursing home is understaffed, and last week there was no one at the nurses station to help by finding something for her to do. They all just block her or restrain her/hold her back. And that makes her more upset....

jeannegibbs Mar 2013
How heartbreaking! That is an extremely difficult combination of disorders. There may not be a way around this except steeling yourself.

I wonder if it would help to pre-arrange with a staff member to come get Mom on some pretext when it is time for you to leave, so that you can leave when she is elsewhere.

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