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My mother has dementia and not safe when mobile, but refuses to move to a room downstairs. She gets up at all times at night and those living with her cannot adequately monitor her (she is sneaky). Cannot lock her in room. She becomes angy and demanding and impossible when trying to explain the need to move her downstairs. The room is set up with an ADA shower. My father died in this room which may be part of the problem, but she is mostly adamant that she is in command of the house and no one can tell her what to do. Common sense arguments make no matter to her at all. We feel we have to get her out of the house for two days to make the room switch so that she comes home and has no choice but everyone is terrified of how she will take this.

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You can NOT let a demented mind run the show. You will only get frustrated, she will get injured and nobody wins.

Do what you need to do to keep her safe.
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You all know how Barbara will take this. She will be “tyrannically adamant”. Why are you all “terrified”? If she hasn’t got a gun, she can yell and scream until she runs out of breath, without hurting any of you. Though ear plugs might help.

A few options:

1) Wait until she falls (down the stairs?), take her to ER at the hospital, do the switch while she is there. Or refuse to take her back.

2) Tell her that’s what you will do. It’s that or she shifts downstairs now, or else moves into a facility. Get some pamphlets about local AL and NH, give them to her to show that you are serious. Get duplicates, because she will tear up the first lot. And don’t forget the ear plugs.

3) Stop providing her food upstairs. Leave her in a mess. While you are doing what she wants, she has no reason to change. You and your family are the people who need to change.

4) Put a cup hook on the outside of her door to stop her wandering. Up high where she won’t see it and probably can’t reach it. No need for a key lock door that needs expensive installation. Then the ear plugs again while she bangs on the door.

5) Decide who “is in command of the house”, her or you. Of course it’s trickier if she owns the house – you might need to move out. But one old lady cannot control four resident adults just by being ‘adamant’. Plus the next door neighbor! You all plus sister need a family meeting to work out a joint plan.

What do you think? Yours, Margaret
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CBandLD Jan 2023
Yes, she cannot be the dictator any longer. We are sort of in a spot where she could fall and be hurt and that would be awful. The last time she did she was horribly disoriented and it took six months for her to recover emotionally - it was during Covid and the emergency situation was traumatic. She also has a reverse mortgage on her house and they require that she occupy the house and have small windows for her absence. We want her to be able to stay in her house.
The problem is that she is somewhat mobile and goes up and down the stairs. Locking her in previously seemed so cruel. That could be tried again but that sort of counts on her reasoning out that she needs to move downstairs - reasoning seems unlikely, so the move will have to be made. Period.
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Get some family members together to pick her up bodily and move her, kicking & screaming, into the room she needs to move into. The days of using logic & reasoning with a dementia patient are long over. And, if that doesn't work for whatever reason, call a medical transportation service to have her moved into a Memory Care Assisted Living Facility b/c it sounds like she's gotten to be WAY too much for you to handle at home. Living in terror of the woman in your own home needs to be put to a stop. She needs a team of people to manage her where she has no choice about things anymore. There she'll be safe and sound, and she can act as 'tyrannical' as she'd like and it will fall on deaf ears. She'll be treated with kindness & respect, but not catered to as if she's the only resident who lives there.

I suggest you read this 33 page booklet which has the best information ever about managing dementia and what to expect with an elder who's been diagnosed with it:

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580

Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.

The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2

Here is a list of useful tips from her e-book I found to be excellent:

The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience

The Do's
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment

Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently

Best of luck.
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CBandLD Jan 2023
Wow. Very useful help and information. Thank you so much.
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Make plans to do some "redecorating" including new paint, floors or whatever in her current room (doesn't matter if this ever actually happens). Move her "temporarily" to the new room, make sure to strip the current room so there's no temptation for her to return. Then buy some ear plugs.
If you have the ear of her doctor it might be helpful to ask for a little bit of calming medication to get you all past this phase - angry outbursts are good for her either.
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NeedHelpWithMom Jan 2023
Great idea about the calming meds!
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She has dementia, so it’s unfair to both her AND YOU to expect her to understand this.

Get over the “everyone is terrified” part if you are truly concerned about her safety, BUT- unless she is absolutely incapable of finding hew way to her current sleeping arrangements, expect attempts to get back upstairs.

This is a sad beginning to the loss of independence, but most of us have experienced it.

She will scream, yell, cry, say terrible things, possibly throw things. None of them are “her”. They are dementia.

Keep her safe and as comfortable as possible. Familiarize yourself with multiple types and sources of help.

You will learn to manage her but have alternatives in mind for when/if her needs increase.
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CBandLD Jan 2023
So true. She cannot understand. What has to done must be done.
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Oh boy, you have your hands full! I certainly emphasize with you but I agree with the previous posters that say that you MUST try to do whatever it takes to keep her safe. Or deal with the consequences afterwards.

Have you considered placing her in a facility? You deserve to get rest during the night.

I do understand that you may feel that it is your responsibility to do the ‘hands on’ caregiving. I cared for my mother with Parkinson’s disease and dementia in my home.

It’s extremely difficult and exhausting. I was caught up in this mindset too. If I could do it over, I would do things much differently. I know that things are never simple.

It’s always hardest to take the first step. You have done that by reaching out to this forum. Have you contacted Council on Aging to help find out what options may be available to you?

Wishing you all the best.
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CBandLD Jan 2023
You are very kind. We want to respect her dignity and allow her to stay in her home. We are particularly concerned about how to do this financially, but a facility would be expensive, too. It is hard to just ignore the tantrums but your answers and the rest demonstrate that is the hard work here.
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You're certainly on the right track about getting her into a downstairs room!

What happens when she's angry, and so what? Let her rage in solitude while you lock yourself in your own room. You're all terrified of what? An overgrown toddler? Does she throw things when she's mad? Or tear things apart? If so, she's a violent madwoman and shouldn't be living with you because you never know what will set off this behavior next time. It could even get worse.

I totally sympathize with what you are going through, but I don't understand how you and everyone else involved can be so scared. You have the power, she doesn't. You control her, she doesn't control you. Have you ever tried telling her to sit down and shut up? Turning your back and walking away?

You've been nice and tried to explain, but don't try that again because she is demented and will never understand.

Please keep us posted.
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CBandLD Jan 2023
Exactly. thank you for the confirmation.
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She has dementia. She can no longer "dictate" what is safer for her, what is easier for you to enable proper care for her.
Probably the easiest thing if you can arrange it is to place her in Respite for a few days (unless you have a family member willing to take on the full time caregiving)
The concern I have is...
(you do not mention the layout of the house. )
You say you are going to move her downstairs.
You say she has mobility problems.
Will she be away from family members?
If she is in a basement/ "apartment" /bedroom and the rest of the family is upstairs how much contact will se get on a daily basis? From the sound of it she does not seem like the type of person people will go out of their way to sit and chat or even visit for a while. Isolation can do harm for people with dementia. And Isolation, while not intentional on your part is abuse.
Now if I have this wrong and she is currently on a second floor and you are moving her to the first floor where she will more likely interact with people that is another thing.
The other concern is if she is on a lower level and she has little contact with the family is there a possibility that she will try to take the stairs to come up to the family?

Dementia...Common sense. that is like "Jumbo Shrimp", "Government Help", "Civil War" All examples of Oxymoron's.
You can not reason with her. You should not even try. Arguing with someone with dementia is an exercise in futility. It will do noting but get you both upset.
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Yet more confirmation. Thank you.
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Your Mom is passed the point of allowing her to remain in her home. At this point she should not be alone. Its no longer what she wants but what she needs. She needs 24/7 care and if no one can be there 24/7 then she needs to be placed. Her home is no longer safe.

As said, your allowing a woman who has a broken/dying brain to make informed decisions about her life.
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