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My 95 yo MIL with moderate dementia is more like a very very stubborn and precocious 3 yo. My husband is her only living family. The issue is that anything we try to do to make her life easier or safer is rejected. We tried a medical alert necklace. NOPE, not wearing. We tried a shower chair after she got stuck in the bath tub. She drug it out and will not use it. Asked if she prefered a walkin tub and other alternatives. NO. Got stuck in the bath a second time. Went back over why she needed to use it. NOPE. she said she doesn't want to use it. We tried to have her go to respite care while we were on vacation. She pretended she couldn 't hear us. We got her hearing aids as her hearing is awful. Will not wear and usually unplugs so they are dead.



She was a registered nurse and thinks she knows more than her doctor, so does not follow his advice. She is on aracept and takes on an irregular basis. I tried to set up a pill organizer and she would not.



She says her hair is a mess and has not been to the beauty shop for 3 or 4 years. I got her sewing scissors out once and she let me trim it. I have offered to take her to get it cut and she keeps refusing. I asked her when would you like me to take you to get your hair trimmed right after she comments what a fright it is. Don't want to go. I said, I will shampoo it and cut if for you. Where is your shampoo. She puts a ton of hairspray on it and it looks like it has not been washed in a long while.. NOPE.



We installed nanny cams in her house and she hasn't disabled them. It has been the only thing she has allowed us to do. She doesn't often hear the phone to answer it. She sometimes uses a walker after she fell and bruised her face right before going to see her doctor.



We had to steal her car keys and have the state yank her drivers license because she wanted to keep driving after having 2 black outs and being detained by the police as a confused driver. She was upset about that for 2 years. She has no memory of the blackouts, the ambulance, the week long rehab stay.



I cook meals for her and take her to the grocery store. I have to help her shop and find things. Also I put things in her cart for her so she will have enough to eat. She doesn't realize how much food to buy or maybe she is just hoping I will bring all her food to her? I live about 3 miles away. She refuses to go to assisted living and the arrangement we have now mostly works when she cooperates.



How do we get more cooperation from the world's most stubborn woman? She was very stubborn before which is one reason why her husband left her. He is now dead.

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Why is your husband allowing you to be abused like this?

Stop taking care of her. Today. If your husband wants to martyr himself, he can. This is HURTING you. If he won't stick up for you, stick up for yourself. You can't do it, she doesn't want it, let the chips fall where they may.
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After you learn all about the mechanisms of dementia, move the woman OUT of your home and into Memory Care Assisted Living where others can deal with her. And where she'd likely reign in her behavior for unrelated caregivers who won't pander to her every whim. My mother treated me like dirt and her caregivers like solid gold.

Its also a good time for a Come To Jesus meeting w your dh. Why is your indentured servitude to HIS mother a foregone conclusion? 😑

I suggest you read this 33 page booklet which has wonderful info 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

Good luck! 
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MargieRKB Apr 2023
She does not live with us. I won't let her live with us. We have stairs to get to a bathroom and she can't do stairs.
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You say she was always stubborn, and that her husband left her because of it.
She is 95 years old. She has a diagnosis of dementia.
Given those facts I think it is unlikely she will change for the better.

I think you already know enough of dementia to know that the only help now is likely for moderating your own expectations. I surely do wish you the best but I think that MIL is unlikely to change a whole lot.
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MargieRKB Apr 2023
That is what my husband does. He simply expects not much cooperation. He doesn't care about her hair, or the same clothes worn for weeks, or whatever else she's stuck on. He just monitors the cameras to see if she needs help.
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Yes, this is his mother he should be doing for her. You help him in areas she needs a woman but he does the rest.

You are dealing with a 3 yr old if she has Dementia. I so hope DH has POA. If so, read if its Immediate or do you need a doctor or two to claim she is incompetent to make informed decision. If Immediate you husband can place her in an AL now. Otherwise, he needs to get her evaluated by a Neurologist. This woman should not be left alone. It is no longer what she wants, but what she needs and that is 24/7 supervision.
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MargieRKB Apr 2023
yes we both have POA.
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I think you'd get some great insights if you educated yourself about dementia, what it is, and how and why it changes our LOs. I learned a lot from Teepa Snow videos on YouTube. She gives practical strategies so that we can have better, more productive and peaceful interactions with our LOs with dementia.

Dementia robs people of their abilities to work from reason and logic and judgment; it takes away their inhibitions, and their abiliity to empathize with people; it messes with their concept of time, sleep patterns and their memory. You trying to engage with your MIL like she is able to "improve" herself will just exhaust you because she can't do it anymore.

And it won't get better or even stay at this level. She will continue down that path which may include things like saying unspeakable things out loud (cursing, the "n" word, etc), becoming incontinent and taking off her protective briefs or stripping; hitting people, screaming, and on). This is the trajectory that my 100-yr old Aunt took on her dementia journey. So, you and your husband need to decide what your future caregiving role will be: more aids hired in-home or transitiioning her to a good facility (where she will at least have more distractions, oversight and socialization). May you receive wisdom and peace in your hearts as you consider the options.
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BurntCaregiver Apr 2023
@Geaton

With all respect to Teepa Snow and I've watched her videos many times, she is completely full of crap.
Her methods may make a very nice interaction, but she doesn't deal with elders who have reached what I call the asinine level of stubbornness.
There's no way to out-stubborn the person. The only thing that works is depriving them of attention where safe to do so, or handing the situation over to professionals in a care facility. Sometimes even that doesn't break the stubbornness.
I've been the person responsible to get a demented, stubborn elder showered, diapered, taking their medication, and cleaning up the filthy hoard.
Sometimes there needs to be a little intimidation for the greater good and to get it done.
Teepa Snow's methods work great in some passive cases of dementia. Not in others and people will respond differently to family trying to get their care needs done. I've always started out as she instructs. Many times it resulted in being sworn at, hit, kicked, bit, spit at, contents of a diaper flug at me, along with dishes, coffee cups, and anything else the senior had nearby that they could throw or swing.
Start with Teepa and finish my way. Sometimes a person has to literally be dragged kicking and screaming into the bathroom to be changed. No one can be left in a mess because it's dangerous. This can take more than one person and when someone is at this point they need to be placed in facility care with a full staff.
Homes that are hoarded have to be cleared out and either help moved in or placement.
It's a rough was but often the rough way is the only way that gets it done.
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One thing I learned through my mother - and it took too long but boy I finally learned it - is that people who complain and are unhappy are going to be unhappy and complain NO MATTER WHAT. Unless some impossible scenario is enabled, usually meaning the complaining elder wants to live with one of their children and have that child take care of every single need all day every day.

I’ve tried to get my mom the best care possible and accepted that I’m going to get complained and guilted at . It still sucks but I know she’s in the least worst scenario, and I’ve carved out some freedom for myself at least.

Sounds like your MIL needs way more help and you need your life back! It’s hard but stick to your guns changing this care situation, and remind yourself that the complaining will happen regardless.

You can outstubborn the most stubborn elder for the bigger benefit. I had to ou-stubborn my mom, and this is a woman who got kicked out of a church! I know you can do this….hugs!
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She is never going to cooperate and the stubbornness cannot be helped now.
She cannot remain living alone anymore. This has to be the top priority now.
Your MIL should be in memory care or at least in AL. I am sorry to tell you but when the stubbornness reaching the asinine level there's really nothing the family can do except wait for something to happen.
A fall or a UTI or something. Then they can have the elder placed for their own health and safety. In other words it will have to get worse before it gets better.
If the state has deemed her incompetent and has taken her driver's license away, then there's documentation of her incompetency. Put in AL or memory care.
Have her son (your husband) step up and do what he needs to do. In the meantime, you can call APS yourself and tell them about her. That she is incompetent and lost her driver's license because of dementia and that she is not safe in her living situation. They will help get her placed.
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MargieRKB Apr 2023
She is doing decently well at home. Still uses the toilet, finds food if easily accessible and seems to enjoy living on her own. Would be a nightmare in a care facility and we are delaying that until absolutely needed. I am retired, so I have time.
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Do whatever you have to do to get her to memory care now. You’re enabling her to live on her own, which could have disastrous results.

Stop respecting her wishes just because she’s your mom. You regard her as a three year old, so you be the parent and make sure she’s safe.

Good luck!
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MargieRKB Apr 2023
We are aware of the possibilities and changing the risk. At 95, she's had a good long life. Would we be able to add much more to that with memory care? I don't think memory care would do well for her yet. She would make their lives unbearable.
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dear OP,

you're living in a nightmare. it's immensely kind of you to help your MIL. your husband should do 50%, or more, of the work, and not use you as a slave!! it sounds like you're doing 90% of the work.

your MIL has dementia (it's extremely common for bad hearing to both cause, and accelerate, dementia). she makes bad decisions. she can't remember things. she refuses all your wise, kind help.

it's up to you (and your husband) how much longer you (and your husband) want to help. she won't change (suddenly become more cooperative). she'll get worse.

a 30 year-old hardly ever changes. a 95-year old? she's not suddenly going to get less stubborn.

there are many degrees of dementia. if she's considered mentally competent, and if she wants to stay in her house, she has every right to do so.

-----some elderly people are much more willing to follow a hired caregiver's instructions than family/DIL. i hope you can hire in-home caregivers.

i hope things get much, much better for you.
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We think she would do worse in a care facility and those cost so much we would both have to have high paying jobs to afford. She would make their lives miserable because she doesn't ever want to live anywhere besides her own home. The funny thing is, she fought this same battle with her parents....and lost. Right now, just providing food for her and monitoring the security cameras seems to be working. When this no longer works, we will have to make new plans.
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MeDolly Apr 2023
Her care is not your financial burden to bear. There is Medicaid that can be of assistance if she needs to go into a nursing home.

Please don't deplete your money to care for her, someday you will need it for yourself.

My mother fought going into AL, we sat patiently until something happened and it did a slight stroke, she was afraid to stay alone at night, we swooped her up and placed her in AL, she loves it! Go Figure!
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Perhaps your DH has the right approach. He “simply expects not much cooperation”. You are trying things that don’t work – hair, clothes, safety etc. You want her to be sensible and look OK.

The other approach is to work out what you are prepared to do – perhaps just go shopping with her so that she has food in the house. Expect less, and wait for things to change. Talk it through with DH. If you have cut out things that he is concerned about, you might split the tasks differently. Perhaps not – you can’t make him do more, and his approach is working so far.

Stop worrying, check the cameras, and wait for her mind (?) or body to force anything that really needs to be forced. If an accident kills her, at 95 she has had a long life doing exactly what she wanted. Not bad!
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MargieRKB Apr 2023
That's the plan!
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The difference between a three-year-old and a dementia patient is that the three-year-old grows out of it.

You aren't going to get cooperation, so what is Plan B?
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NeedHelpWithMom Apr 2023
I was thinking the same thing. One cannot compare a person with dementia to a child.
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well after the second time she got stuck in the tub I would have called the fire department to get her naked butt out. Maybe that would have been a wake up call? I could not have gotten my naked wet mom out of a tub, and she would have been humiliated to be seen that way! Save yourself and your back. Seems like she is able to use the walker if she doesn;t want to be seen by the Dr with bruises,, play on her vanity! Good luck with this,, and save yourself
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MargieRKB Apr 2023
I told her that was what was going to happen if there is a next time, but she won't remember that because in her mind it won't happen again. My husband helped get her out of the tub. She would not cooperate with me trying to get her out and I couldn't dead lift her. I am in good physical condition, but not super strong.
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Honestly, I feel sorry for all of you.

I feel sorry for you and your husband because you are slaves to his mother even if she doesn’t live in your home. I cared for my mother, so I know firsthand how difficult it is.

I feel sorry for your mother in law because she really shouldn’t be living alone.

I would like for you to read your response to BurntCaregiver again and ask yourself if you really believe what you wrote.

You say. “She is doing decently well at home.” You are delusional if you think this is true. She has dementia and could be one step away from harming herself.

Also, having cameras in her house isn’t going to protect her. It’s better than nothing but isn’t a cure all solution.

Do you and your husband watch those cameras 24/7? No, you don’t because that is impossible to do.

Plus, you live three miles away and couldn’t possibly be there immediately in an emergency.

She isn’t wearing an emergency necklace to alert medical personnel so when an accident occurs it will be a disaster if you don’t catch it on camera.

You know, your husband knows, everyone knows that your mother in law should not be living alone.

Do not refer to money as an excuse for her not being placed in a facility.

As MeDolly explained in her response, paying for her care is not your responsibility. You can apply for Medicaid.

BurntCaregiver had a great suggestion for you to call APS and report her as a vulnerable elder living alone.

Perhaps a neighbor will end up reporting her and then you may be questioned about her situation.

I truly hope that somehow this will work out well for all of you. We have seen tragic stories on this site where elderly people have been harmed because they were living alone.

Your mother in law is never going to voluntarily say that she wants to be placed in a facility. Take whatever steps necessary to ensure that she will be cared for properly.

Wishing you and your family all the best.
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You have fought the good fight and tried and tried. You will get nothing in return. She is old, stubborn and has dementia. Bad combo!

You have met some important safety things. No keys, no license. Very important. You feed her. Nanny cams. Glad you guys have POA too. You could use it now but you will need it some day soon.

As much as possible, do not engage in any arguments with her. My mom with dementia likes to say no a lot so I stopped asking and starting assertively telling instead. Like "OK it's time to do your PT" vs "would you like to do your PT". Like "You're moving into assisted living" vs "Would you like to move into AL". It has helped me and maybe it would help you.

Stop fighting the small battles. If something is super dangerous, you have to step in but if it's just small potatoes, let it go. Her hair looks like crap? You could say "Time to cut/wash/whatever your hair". If she says no, just say OK, maybe tomorrow.

Do not spend ANY of your money on her. Does she own a house? When she eventually goes into a facility, that will probably have to be sold to pay for her care.

You could bring a cleaning lady or other helpers over with you and say they are there to help YOU and if she is cooking, cleaning, doing laundry, giving her her pills, etc. she is actually helping you because it's things you don't have to do for her.

Best of luck.
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NeedHelpWithMom Apr 2023
All of this is true. As her dementia progresses, I wouldn’t want her cooking!

This is a very sad situation for the OP’s family.
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As others have said, you can't get her cooperation. She has dementia and her brain is broken. I doubt that she should be living alone. Does her doctor agree with that? Let go of things that aren't life threatening. its good she can't drive any more. You did well there.

She owns a house? If so there is money in it which should eventually be used for her care. You and your hub should definitely not be spending your money for her care.

Sooner or later there will be an emergency - a fall or something like that. Do some research in advance about suitable facilities and medicaid and unsafe discharge from hospital.

It's good of you to help her, but be aware and plan for the days ahead when she needs more than you can provide. Realize her health and cognition will get worse and become too much for you to deal with.

We have seen many here who did not want to leave their homes. For most, eventually they had to be placed in a facility.
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Lots of good advice already given.

You say that your MIL will make "their lives unbearable" in a facility. They can handle it.

The bottom line is a three year old does not live alone. So why does your MIL live alone?

I agree with Need.
If I was your MIL's neighbor, and I knew the situation, I would be the neighbor that calls APS. It will be a lot better if you address the issue yourselves.

Your MIL should not be calling the shots, She can not make safe decisions.
And you are correct she will not be happy with you for putting her in a facility. But guess what ? Kids that don't want to go to school , still get sent to school.

It is a terrible situation, I know. I had a very stubborn and narcissistic mother that I had to put in Assisted living after she almost set the house on fire putting the wrong kind of lightbulb (and wrong wattage) in an old chandelier that could not take the newer kinds of bulbs.

My mother also had stopped all hygiene. She was throwing out the meals I brought her. She was living on cookies.

Soon you will need to place your MIL in a facility. Either when she ends up in the ER, Or you end up calling APS. Then sell her house to pay for her care. When that runs out Medicaid will pay.

It's also not fair to you or your husband. Your lives are being controlled by a 3 year old who is going on 2.
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NeedHelpWithMom Apr 2023
Way, Very well said!

Margie,

I certainly hope that you take advice from a person who has been in your shoes. Way2tired is sharing her experiences with this situation and her answer is very wise.
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You say “Putting her into a facility would probably make her give up on living and she would will herself to death”. You could be wrong – some posters have found (to their surprise) that a parent has taken like a duck to water to a facility, being waited on, and lots of activities.

You could also be right. At 95 would be it such a disaster?
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My stubborn, narcissistic mother with dementia did better in AL than she did at home. She made friends. She sat by the front door and people watched who came and went. She gossiped. She convinced other residents to invite her in to show her how their rooms were decorated. She ate better. And yes she was angry for many months when I would visit. But the activities woman told me that my mother was doing that just to make me feel bad. She finally admitted to me that she needed to be there after the first year.

Your MIL may surprise you and thrive living on her anger. And not give you the satisfaction of giving up. But at 95 she may give up anyway when she can't do things for herself no matter where she lives.
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NeedHelpWithMom Apr 2023
Everything you are saying makes so much sense. Think about it. People who thrive on anger and just love complaining have many more people to complain to in a facility. They are getting the attention that they are seeking.

You’re also correct in saying that they know how to handle their personality. They are accustomed to dealing with various personalities.

So, I am sure that the staff takes everything they hear with a grain of salt. They get to know the family members and can see what is actually going on.

Plus, it won’t bother the staff as much because it isn’t their family member. They get to leave at the end of their shift and place work on the back burner.
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Thank you all for your advice and experiences. It sounds like there haven't been many success stories with mitigating stubbornness. I don't believe that APS can legally come after us for neglect. We have been to a lawyer, and in our state, it seems we would have to obtain legal guardianship to overwrite her desires and have her placed in a facility or bring in outside care givers. She threw somewhat of a fit when I had plumbers come in and fix broken toilets. When certain conditions are met (she is not there yet), the medical system should kick and and place her. Oddly enough, If i remember correctly, one of her former nursing jobs was placement coming out of a hospital. She is still in the "that means a nursing home" mode and she's not there yet. We believe that assisted living would be a great thing for her because of the social stimulation and interaction, activities, meals and safety. She will not even consider it. Her PCP highly recommended it and she said he didn't know what he was talking about. We have visited some locally for when that time comes. We have some great very close options. IN fact, one of the reasons we hoped to have her stay in respite care while we were on vacation was to introduce her to assisted living with the option of returning to her house, but she stubbornly refused to discuss it. I think she is too far gone to be rational about this. She had the same struggles with her parents that we are having with her, which I find amusing because she so hated that they would not work with her. My mother died at 95, but was clear minded and cooperative up until the end. As was my grandmother. So all of this rebellious attitude is new to me. Her next door neighbors are very close with her and they are very against her going to a care facility as their mother hated it so much. That doesn't help our case. MIL firmly believes her neighbors will care for her while we are gone on vacation.....told her doctor that her neighbors would take care of her. He thought that was depending on them too much as they both work full time.
Until that emergency call comes or she takes a severe turn for the worse, we are doing the supply food and check her cameras about every 3 to 4 hours during the day. The familiarity of her house and routine seem to kick in decently well. The house is clean, dishes done, cat fed, clothes on, bed always neatly made, favorite evening TV shows on. She is continent or this would be a different story.
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Way2tired Apr 2023
You say “ she’s still in the ‘that means a nursing home’ and she’s not there yet”.

She’s never going to get there!!!

All that you are doing for her shows she is not independent . If she behaves like a 3 year old and has to be monitored by cameras she should not be living alone .

I would call your local dept of aging . Tell them how she is a 3 year old. They will send someone out to talk to your MIL , If they decide she’s not safe living alone then that’s it .

I did that with my mother. My siblings thought my mother could still live alone. I was bringing her food and doing everything as well . Dept of aging came out and spoke with my mother. I was not there ( which is how they preferred it ). But the social worker said they talk about various emergency and non emergency scenarios and if the elderly person can not give appropriate answers as to how to handle these scenarios , or the elderly person is not able to “formulate a plan “, then They are not safe to live alone .

The social worker from the Dept of aging was scheduled to return with another person to remove my mother from her house and place her in AL that I had chosen. My mother was tipped off by a family member and Mom “lost it” and I ended up calling 911 to do an ER dump . While in the hospital she was evaluated by social worker , who deemed she could not live alone . She went to AL from the hospital.

My siblings also thought that she would not be removed from the house . My mother also kept the house neat , bed made etc . It was the conversation that the social worker had with my mother , where my mother also was like a child. That’s what was the deciding factor . You said your MIL is not rational . That should land her in AL .

And as far as PCP goes, they typically are not forceful about placement if they know the family is taking care of the person . If the elderly person comes to their office looking clean and fed etc .

The other alternative is you just STOP doing things for her . Let your husband figure out what to do with her . The social worker told me sometimes you have to stop doing for them and let them fail , to prove they can’t live alone. Stop helping with her hair etc .

Either way this woman should not be the one in control . She’s the child . Do you let a child decide where to live ?
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My apologies but I chuckled a bit at your description of her as 'like a 3 year' old. The thing is, aging is like regression to a childlike stage in a way; I've often wondered if it's Nature's way of 'softening' the decline, but it's really hard on anyone trying to take care of them.

It seems like a lot of the refusals are an attempt to hand onto autonomy. And there sounds like features of at least a degree of dementia. Otherwise I'd advise trying some of the same tactics one would with an actual 3 year old, including 'reverse psychology.' Doesn't want to wash her hair, tell her she looks gorgeous!

At 95, some folks are just 'done' with living and want to be left to their own devices. The best course may to just ensure her environment is as safe as possible, that there's nutritious easy food available, and let the chips fall where they may.

A visiting nurse might have the authority to get her evaluated, seen by a doctor who might say she belongs in professional care at a facility of some kind.

Bless you for your caring concern. There are limits to helping another, especially if they won't, or can't, cooperate. My mother was very stubborn as well, and tho admirable in some ways (the 'can do' attitude), it worked against her in the end. But my mom Would Accept Advise from a 'professional', so perhaps engage someone in a white uniform if need be, taking the focus off her family just seeming to 'take over' her life.
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You cannot reason with dementia.
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You don’t. It’s impossible. She is not just stubborn. She has dementia and needs to live in a memory care facility. It’s dangerous for her to live alone now.

”But she won’t go! She won’t do this, she won’t do that, yada yada!”

Would you allow a three-year -old to make decisions for herself?

I didn’t think so.

You need to switch mindsets. You can no longer keep trying to get her to cooperate. Forget it. Your aim now is to get her into a memory care facility before she burns the house down with her in it. Or something equally distressful.
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Post is from April. Any change now by July?
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southernwave Jul 2023
Oh!
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She is 95 and her brain is dying. Does she really need to be on Aricept?

She is only going to lose skills until she dies. Go to YouTube and look up videos by Teepa Snow. She explains everything really well.
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