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.
As said, your allowing a woman who has a broken/dying brain to make informed decisions about her life.
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.
Maybe time for a facility.
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.
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.
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.
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.
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.
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
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.
Do what you need to do to keep her safe.