My 93 year old mother has always been strong willed. The characteristic served her well until she got dementia. Now, this strength is being turned against her. She has been in Memory Care for nearly two months and despite being on medication for combativeness, she still refuses to let the aides help her do almost anything.
For example, she has urinary and more recently fecal incontinence, but she won’t let them change her brief without a physical fight. She won’t let them wake her, help her dress, make the bed, bring her food or wheel her to the dining room. With my own eyes, I’ve seen the staff unsuccessfully try techniques to deflect and persuade her. Yet Mom is consistently resistant and has lost weight to the extent that last week I accepted the services of hospice for her.
In spite of it all, she says that she likes the facility.
The situation is heartbreaking and frustrating at the same time.
Does anyone have advice on managing her behaviors before it is too late?

I work as a receptionist in a Memory Care facility and we deal with the same issues all the time. In fact, last night, a resident's son called and he was furious b/c his mother was supposed to have been weighed and she wasn't. Why wasn't she? Because she was screaming at the top of her lungs DO NOT TOUCH ME and therefore, the staff could not touch her. What people refuse to understand sometimes is that residents have RIGHTS. The staff cannot sit on someone to force a brief change, or a weigh in, or a shower, or whatever needs to be done. And if the resident WAS forced into doing something she didn't want to do, then the MC would be at fault for THAT as well! So it's a no win situation. And very frustrating for all concerned!

We have another resident who stinks to high heaven because she refuses to shower. She also refuses the help of an aide to shower. She doesn't need help, she insists, yet refuses to bathe! Her daughter calls daily to blame US that her mother smells and has greasy hair! I tell her every day that her mother has rights, and we are just abiding by those rights.

Sigh. What a mess this dementia is, isn't it? I HATE it with every ounce of my being. My mother has dementia as well and lives in MC, but is not combative (at least not yet, anyway) and I am grateful. She IS stubborn, however, and refuses to ask for help in transferring from wheelchair to toilet/chair, etc., and has taken 4 falls over the past few months as a result. She took 36 falls for being stubborn in Assisted Living while she lived there for 5 years.

You can't save a person from herself, and that's the truth. If your mother is willing to have hospice come in rather than play by the rules, then she will die on HER terms. That's how you have to look at it, I think. There is no other way, really. There are some behaviors that NO medicine on earth will fix, right?

Best of luck, my friend.
Helpful Answer (21)
Reply to lealonnie1
againx100 Dec 12, 2019
Excellent way to put it here!

Dementia is such an evil thing. I'd rather die than be so confused and unhappy with ZERO quality of life. It's sooo sad.
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Call a Care Conference and brainstorm with the staff how you can compromise. If Mom is able to make her bed, of she’s not a fall risk, have them let her. Who cares if there aren’t “hospital corners” when she’s done. My mom had a tray in her room for all three meals because she was anti social. Get her an alarm clock with a pleasant alarm. They’re hard to ignore. Have the staff bring a tray into her room and not try to persuade her to eat it. It’s hard, if you’re hungry tonskt there and ignore the food.

Try giving her as much independence as she can safely handle and she may become more cooperative.
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Reply to Ahmijoy
EverHopeful1 Dec 12, 2019
I have called for meetings with the staff before and they have asked for my suggestions. (They do seem willing to try, but seem almost as stomped as me.) Honestly, I came up empty, but don’t want to be the inflexible family member with the unmanageable resident. Instead I want to go back with them with actionable suggestions.
Sadly, some of your suggestions may be problematic for Mom’s situation because of our financial limitations and her stubbornness and possible agnosnosia (unawareness of her deficits due to a stroke and dementia). For example:
- Consistently feeding her in her room since they charge to do that. Currently, we are overextended paying $6,000+ a month for her care. We just can’t manage a penny more!
- Letting her decide when to change her brief is no longer possible. She will sit in feces and urine until it risks risks her health with UTIs, breakdown of skin, and is frankly nauseating.
However, I believe that your other suggestions have real potential. For example:
- The alarm clock idea is brilliant!
- The concern about the bed is less about neat corners and more about mom sleeping in urine soaked sheets. However, maybe I can suggest the aides change the sheets when she is out of the room.
Again, thanks for brainstorming! That is exactly what I need!
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Thanks for those answers.
When my MIL was in assisted living and nursing home care, we spent a LOT of time cleaning up the food she kept taking to her room ( for the later that never came) and doing other clean up, to include padding the new “lift chair” that she could never learn to use and apparently neither could the staff.
In the nursing home, her room smelled so awful and the padding kept disappearing from the chair ( so much that we had to throw the chair out within less than a year).
We kept paying to get her hair done and the znext day it was a disaster (finally I caught her at the sink splashing water on her hair).
Finally, after we kept cleaning and insisting that the smell issue be added to the care plan and addressed, and after we added our suggestions to resolve the issue, that improved.
When we would advise staff of physician appointments or other commitments, sometimes she would be ready for them, but I learned to arrive early and bring my own supplies to clean her up and take fresh clothes for her to wear (her closet was packed, but never with her nice clothes for some reason).
No one explained that my fastidious MIL had a “right” to live in filth that would have gotten me arrested at home.
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Reply to Jo123456

My mom too will refuse almost everything at first, her shower, dinner, snack, help with dressing, physical therapy, a ride in the mountains, on and on. I sit calmly and talk about the thing she is refusing or something else entirely. Then she gives in. I offered yesterday to put some music on for her because I could tell she was not following the movie the care giver had started for her. She said she doesn't like music. I put it on anyway very very softly, and she said, "oh I guess some music is nice". So I turned it up and she started tapping her feet and moving her arms. Perhaps the staff are hurried, as they have many more people to bathe, change depends, feed, etc. I've observed that one care giver for my mom will offer her a snack, my mom refuses, and the care giver lists the snacks available - at least 4. Then my mom will choose one of them and be happy. I wonder if some choices could be given to your mom. A shower, cleaned with a cloth, or sprayed with disinfectant (not really - I just can't think of another option). Soup, a sandwich, or the full meal. I don't know what the choices could be about changing the depends. Maybe to do it herself, have some help, or sit in the stinky room with the other stinky people (again, not really). I do know how frustrating the negativity can be and wonder just what my mom is really refusing because she always loved her baths and showers. I think she might be refusing to be helped. She want to make her own decisions, so the choice making works well with her.
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Reply to ArtistDaughter

We were able to have Mom's Ativan compounded into a Cream that could be administered like a gentle massage to the back of her neck when her negative behavior escalated and she was refusing to take her oral medications. It is absorbed thru the skin and allowed her to gently de-escalate.
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Reply to smlord

This might be a silly question, but has she always been a good bather. Liked to take a daily shower and get clean or was she a once a week shower taker and the rest of the time wash up at the sink? I ask because my Mom (although not in a facility)just doesn't do the showering thing every day. That said, my Aunt who was 88 yrs old when she passed away last year- used to get her shower every day and towards the end she did too.
Dementia takes away a lot from people but to tell someone don't touch me, might just be one of the last things giving them control and not eating and especially not going in the dining room. Did she just become anti social? Maybe she is an introvert. I don't know, I wish I could find some words of comfort for you. Would she let you give her a sponge bath ?
I'm sorry this is happening with your Mom.
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Reply to Rbuser1
EverHopeful1 Dec 13, 2019
She has always been stubborn, but not to this extent. She bathed and when I was a child insisted that I bathe too!
If you can get her to open her mouth -and I realize that might not be possible- give her CBD oil. It won’t cause any problem and just might help. What have you got to lose?
Thats how my cousin looked at it when she started her own mother on it. Her mom is on hospice over two years now. Has Parkinson’s and dementia. Was not speaking, had Parkinson’s mask and shuffle. Came out of it. She progressively got better until a bad fall back in July landed her in a hospital bed. She stopped talking again. Cousin changed the cbd oil to a full spectrum one. First one didn’t have THC. Her mom is doing better again. Out of the bed.
CBD oil works on our canabinoid receptors. Every living organism has receptors. I use it for anxiety and pain. It works for me. I would probably have never tried it if my cousin hadn’t told me about it and I hadn’t seen first hand the change in her mom.
I give it to my 93 yr old aunt and her old dog. It’s in small things in her case that I notice a difference in the 93 yr old. Small positive things like wanting to sit in the sunshine. Waking every morning and opening her garage and unlocking her door knowing her caretaker will be there soon.
You will have to give it to her yourself as the staff won’t be able to unless you can get her dr to write orders for it. Both aunts drs know and approve that they take it but they aren’t in a facility where others are in control ( or trying to be in your mom’s case).
Make sure you get a quality product. My cousin researched extensively and this was before CBD was widely available. I have been on it 18 months. It’s been a great help to me. Oh and you will know fairly soon that it is helping. It’s not something that you have to wonder about like the current Alz meds. I also give those to 93 yr old with no idea if they really help.
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Reply to 97yroldmom

I started a daily routine of handing my mom a warm, moistened facial cloth. And saying , “try this, they’re new, wash your face. Doesn’t that feel good! Go ahead wash your neck and behind your ears. Feels good doesn’t it? That’s right, nothing like a warm cloth in the morning!” See how that goes and try for her to use another warm wet cloth under the arms and a warm sudsy hand wash. Good luck.
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Reply to GAinPA
EverHopeful1 Dec 14, 2019
I will try this!
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Also, she might respond to having her hair gently combed or brushed first. A tube of lip balm. If you can get the hands: warm soapy wash maybe a gentle nail cleaning. A little one on one, relaxing ritual at first. I know it is inconceivable, but anything to de-escalate the situation might be a way to start. (I feel your frustration.)
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Reply to GAinPA

EverHopeful1: So sorry to hear that. Is her physician a primary care doc or a specialist? A neurologist would be needed. I do realize that a medication balance is required and this approach may not work at all, Prayers sent to you. I know how difficult that this can be. Losing one's mental faculties is horrible.
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Reply to Llamalover47

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