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zeenna2002 Asked May 2020

What to do with my elderly mom who kicks every caregiver out and doesn't want to be placed anywhere?

My elderly mom with dementia kicks every single caregiver out and does not want to be placed anywhere. I feel that I will be trapped as long as she lives. I try to explain to her all the damages she is doing. She has dementia and does not have any reasoning. She keeps falling and getting injured but insists that she is fine. I watch her many hours and so does my daughter. We are very tired. I have a special needs son who is 36 and a dog that I take care of. What do other people with the same situation do?

carebear864 Jun 2020
she may need an ultimatum - she either lets someone help with her or she needs to go to assisted living or a nursing home. It has to be said that it's to protect her. She isn't going to understand why she needs it. She isn't aware of the changes that have happened. Both my mom and dad came to live with me 5 years ago. My mom had physical problems and my dad dementia and he couldn't care for my mom anymore. It was very difficult for them as well as me in the beginning. They felt they lost their independence and I had to give up my job and all the things that made my life. But it has been worth while for the time spent together. My mom passed 2 years ago and I still have my dad. His dementia is worse but doable most of the time. He wouldn't be able to handle a nursing home. I have a caregiver come in to help 3 mornings a week so that I can run errands and take a little bit of a break to exercise and connect with friends. If I don't take care of myself I can't take care of him.
I hope this helps
good luck

SpoiledONe Jun 2020
I have almost the exact same thing going on with my mother. She turns into an angry person who hates anything and everyone who is trying to do something to her; things that have to be done. My love for my mother is tested so much but i cannot ever stop providing for her just as she did for me and everything else she did. I have to see her behavior as illogical and irrational but not unreasonable; she has dementia. I have heard so many people say that they would kill themselves if they could if they ever developed dementia and acted that way. they also say they dont want anyone to have to care for them like that. But. I did not choose my mother and i did not choose that she have this miserable end of life disaster to her. I make me so sad to see her knowing the kind of person that she was. It is not fair and it is not her fault. I believe that she does have a part of her mind that knows what is going on and is so angry that she is having to withstand the dysfunction and disability of her mind and body. Like she is in some prison with torcher a part of her daily punishment. She cannot stop it so she does what anyone would likely do, disobey, appose, threaten, yell, hit, cuss, etc. She is trying to protect her dignity but she does not even know that her dignity was taken away and very few people even look at her a person with feelings, hopes, and desires. She cannot communicate so how would anyone know that she even thinks. I will tell you that it takes a whole lot of love and patience to find it. I know that she hurts because i see it when someone is stripping her to put on her night gown. she is afraid and confused. she is attempting to defend herself like a woman being raped; I am sure of that. Now she has to go through it every time and the caregiver soon loses any feelings other than get it done and get her to sleep. Ash GOD why and there is no answer. But it could be just at test to see if you will abandon the person who tended to you when you acted in a similar way as an infant. My mother would never abandon me even if the situation swapped and she was taking care of me with Dementia. I have seen every person in her life just disappear knowing that the one thing she can do it be happy to see them; that's one thing about my mother that is exactly like it was before she developed Dementia; she was a joy to be around and brought a smile to everyone she met. Now even her children want to put her away where they dont have to feel guilty that I am the only one who really cares about her dignity and happiness. Believe me it is a sacrifice and it has caused my family to splinter; no it has caused my family to abandon me and the matriarch of the family, my mother. If there is a Hell I dont want to see because I would likely try to comfort and care for the same people that have left me here alone to do the impossible; make my mothers last days as good as they can be. My suffering is nothing compared to hers and so many others.
But if you have a lot of money and a good job, a house, a dog, other things to do for your own life, then, turn your back on your mother and let her suffer. I know one thing, it takes about 10 days for her memory to dissappear from your mind; a little longer for the guilt to fade. you will save so much money and have so much more time to enjoy your life. Her suffering will soon end when she passes away alone in some cold nursing home. As you can tell this has possibly destroyed my happiness and my joy in life; caring for my mother. I know it and I have been told to forget about your mother, you have your own life to live. I suppose it is only the ones that are so hurt by the symptoms of dementia would provide the best care for them. I suppose that i will pass with my mother, we will be together always.
Isthisrealyreal Jun 2020
Not everyone can afford 24/7 caregivers and just manage the hired help. Trying to make others feel guilty about facility placement is just cruel. Maybe this attitude is what turned your family against you. You don't even do the care, so you don't have a clue what a solo person with no hired help, trying to work to pay the bills and take care of a failing loved one has to go through.

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Lockett2166 May 2020
Why, why, why do people allow this behavior? It cannot and must not ever be tolerated. When you have done everything kindly, reasonably and with medical intervention and nothing changes, then why are you allowing it. She cannot stay with you because YOU will be destroyed and why would you allow that. There are means but have to be sought out. You cannot have her with you especially since you have a special needs son and dog. Don't let her destroy you. Take care of yourself - do NOT put up with it
NYDaughterInLaw May 2020
Thought provoking answer, Lockett! It is completely unreasonable for anyone to expect someone else to be their 24/7 caregiver and completely unreasonable for anyone to accept being someone's 24/7 caregiver. That nothing changes is a big red flag, which too many caregivers choose to ignore. And they ignore the red flag and give into the unreasonable demands at their peril, and usually at the cost of their health, relationships/marriages or both.
Llamalover47 May 2020
The elderly mom doesn't get to decide anything. Explain the situation ahead of time to the caregiver.

DKelso34 May 2020
"my two cents" reply is great. When you shop for the caregiver..tell her what she is in for. If she stays, then reward her well. She will be "like Gold" take good care of her financially. Not everyone can be tough and enjoy.

my2cents May 2020
Explain her behavior before the caregiver starts working. You need one with thick hide and knows how to stand their ground. If mom tells them to leave, the response is I'm not here to work for you - I'm working for your daughter. Caregiver is still in the home and can go about their tasks, but remain available to watch her, help her if he asks. If mom tells her to leave, caregiver can find another way to reply, as well, like I'm waiting on your daughter because she said she'd pick up something for me at the store. Some of them already have a knack of rerouting the conversations. Or call caregiver a friend of yours - she's coming buy to wait on a package that is coming. Then always refer to my friend so-and-so who is coming to help you with some chores.

Don't call this person 'her' caregiver - call her my housekeeper or something. Evidently mom still has enough memory to know she doesn't want someone caring for her - so make it about you.
DJHN9hyi May 2020
Excellent reply. I am a professional caregiver and when I care for a client like this I'm never there as a "caregiver". I am " the housekeeper" there to help the daughter. I also tell them I'm there for them as well should they need anything. I usually ask if I can have lunch with them and we talk and they get to know me. It takes a while but they eventually come around. Best of luck.
ArtistDaughter May 2020
When my mom had care givers from an agency they were not allowed to leave until their shifts were over. Sometimes when I got home I found them sitting on the porch, saying she kicked them out. I did finally find a few who would stick it out. They knew how to convince her that the house needed cleaned, the laundry needed done, and whatever else, and by law they were not allowed to leave. They could also joke with her. Now in assisted living she is really happy, even though she had insisted she would never go there. Right now is not a good time to find a place for her, but do start looking. Continue trying to find a care giver who will be able to stay.

Isthisrealyreal May 2020
Zeenna, you have had luck with 1 caregiver. I would continue to try new people until you find another one that can deal with your difficult mom.

It will probably take time and feel harder than just doing it yourself, but keep at it, you will eventually find someone that can deal with an ornery, difficult woman.

Be sure and talk to the current successful caregiver and find out how she/he deals with moms outbursts and give new people some tools to help them get used to her.

You can do this! You just have to remember that mom isn't making decisions about this, it is all you. Let her rant and rave and have tantrums. Deal with it as you would a 2 year old using these tactics to manipulate the situation. She doesn't have to be happy about the arrangements, she just has to be taken care of.

Edit: be sure that the new people know that she will tell them to leave and have a plan for their actions. When mom tells you to leave just go tidy up the ???? and make yourself unseen while listening for a need. They need to know that you are the only one that can hire or fire.

Taarna May 2020
Talk to her doctor. Your mother may be lashing out because she feels anxiety. Having a regular routine helps. Limiting the number of caregivers - so the number of "strangers" she encounters is low - may help as well. She may also need to have an anti-anxiety medication to help her relax.

Beatty May 2020
When you say you watch her (due to the falls) is that you having to be at her house? Or does Mother live with you?

Tante1946 May 2020
You should ABSOLUTELY call Adult Protective Services and let them know that as much as you love your mother, you must REFUSE to let her stay in your home any longer. Tell them you need help to get her out of your home. It is in your mother's best interest to live where she can get the proper care. Then, get yourself into therapy, or a group for caretakers, to deal with your own feelings about what you are going through. Take a long, hard look at what is happening to you right now. Take any help you can get to have her placed where she will be best served and visit her often. Get yourself physically and emotionally healthy so you can be strong in your relationship with her, because it's not going to get easier. When you've done those things, take this time to prepare yourself for when you are in the position your mother is in. How will you age differently?

Beekee May 2020
Get her on psychiatric drugs--Wellbutrin or others. Maybe a CBD gummy bear crumbled into her yogurt so she'll take a nap when you want her to. Research and call local rehabs and memory care, so you'll be ready for a transfer the next time she is hospitalized. Explore Durable POA--an attorney doesn't have to cost a fortune. Find an attorney with their own small practice, instead of a large firm.

Midkid58 May 2020
My MIL is right there with your mom.

She hates everybody except her daughter, and only tolerates my hubby. Her oldest son is MIA.

So far, SIL Is doing OK managing her. I am not even allowed in MIL's home anymore and DH is furious with me for not 'trying hard enough'--well, SHE kicked ME out and told me to never come back, so yes, I do look terrible to the rest of the family, but you cannot force caregiving on someone.

As long as she doesn't fall again---she's ok being home alone. I think she has a twice a week aide and a housekeeper. She doesn't DO anything at all.

DH just frets over how bad she is--a visit to her puts him in a foul mood for days. He is actually just waiting for another fall that will put her in a NH. She should have moved to an Assisted Living 10 years ago, when she would have had some interest in making friends or being social, but now she refuses to even talk about it.

I guess we're in the WFTF category. My DH gets mid-night calls from work and when the home line rings at 2 am, my heart stops---one night it will be that she's fallen.
DILKimba May 2020
Midkid58-We are primary caregivers for my MIL/FIL and got them into Memory Care and AL last year. It is STILL a lot of work. My BIL lives out of state. I told my DH 18 mos ago, "You know, I know we will do the the lion's share of the work due to proximity, but there is no reason that your brother can't do the finances from afar." SO we talked to him and he and his wife agreed to do that. That really has been helpful. My MIL is not my biggest fan either, and will often rebel against something if she thinks it was my idea. SO I do a LOT of the work in the background and let her son rush in to "save the day" with my ideas and the work I've done. It helps my husband, uses my gifts and talents and what she doesn't know won't hurt her, and WILL help him. ;-) SO even if your MIL throws you out and doesn't want you in her house, you can still offer to take some of the load from your DH and your SIL while you WFTF. Like you could do the research on places in the area, find out about policy's admission criteria, etc. I did that. I did a lot of research online, narrowed it down to the ones I thought might be a good fit, then took my DH to go see the ones that I thought were best. Then we just kinda held that in our backpocket so to speak, until the crisis happened. Then we knew exactly where we wanted them to go. He was able to tell his dad "I've been looking around and this is what I found and feel is the best fit, let's go look." Same thing when it was time to ratchet up the care. We had a second tier place--that I actually would have done the first time, but it wasn't my choice. SO even though you can't be hands on, there is lots you can do, if you choose to, to help. I don't do it "for them", I do it for my husband and my BIL.
NYDaughterInLaw May 2020
"I have tried. It didn’t work out. My mom doesn’t want anybody." You mean she doesn't want anybody but you?

Your mother doesn't get to dictate how you spend your time and live your life unless you allow her to do so. Establishing healthy boundaries with ones parents is hard. I speak from experience watching my husband do it with his parents. Sooner or later, it must be done. The choice is yours as to doing it proactively or reactively. With my inlaws, I did it reactively after burning myself out to the point of getting sick. My husband also did it reactively when I insisted that things could no longer continue, which is a long story in itself.

In home is not working despite your best efforts? Then she needs a senior care setting where progressive care is available. She is not going to get better. Her needs are only going to increase.

Given the pandemic, you have more time to research senior living options available to her in her budget range. A lot of information is available on this forum for free, including senior care specialists that are free of charge.
dogparkmomma May 2020
Facilities are taking new patients so if the situation presents itself, and placement is possible, it could be done. However, the restrictions of no visitors are an issue especially for new residents. There are facilities that have not had any cases. And now facilities are testing residents and staff. I will say I am glad my mother is in a facility already. My FIL was in memory care for a year before he died last week. It would have been very hard to have had him at our house as he had been failing with dementia.
Beatty May 2020
I think reasoning, understanding & empathy for other's situations can be the first things to disappear with dementia.

Familiar things, familiar people is what they want & trust. That's understandable - but it's not a practical solution for you to provide everything. To be blunt: Dementia is progressive. You may wear yourself out. You will need more hands-on caregivers.

So the question then is how & where? In-home? Or time to move into a care setting? Or some councelling to get more advice - with somewhere experienced with eldercare issues? That can be the hardest thing. Choosing the direction.

NYDaughterInLaw May 2020
Stop explaining. You said it yourself - she "...does not have any reasoning..." so what do you expect?

You are enabling her to continue this way. It is unfair of you to place your daughter in the situation for hours at a time, as I'm sure the young lady has other things she would rather be doing.

Instead of calling a helper a caregiver, how about you make believe that the caregiver is your friend and you want to introduce your friend to your mother? I knew a woman who did this successfully with her mother who was a young widow and had early onset Alzheimer's. The women hit it off, and my friend's mother never knew that her daughter paid this woman to be her friend. That may buy you some time during this pandemic to find other living arrangements for your mother, and give you and your daughter some much needed respite.
zeenna2002 May 2020
I have tried. It didn’t work out. My mom doesn’t want anybody.
Geaton777 May 2020
zeenna, I commend you for trying to keep all the plates spinning and your burn out is totally understandable. We on this forum will try to give you guidance on how to get your life back. To do this, we need more information:

- are you your mom's durable PoA? If not, is anyone? With her dementia, a PoA has the legal authority to have her placed, even if she is not cooperative (it's where she needs to be for her own protection). With her falling and dementia, she will most likely be recommended for Memory Care. If she has funds the durable PoA can choose a facility and get her in on private pay. If she hasn't many assets you can apply for Medicaid for her.
- if no one is PoA for her, you can choose to pursue guardianship through the courts. Not sure how long or expensive a process this may be, but it means you will have the authority to make all decisions for her. If you are not up to this, you can contact social services and discuss whether she qualifies for some in-home services (which will help you but it's not a permanent solution). The county can pursue guardianship and then they will get her into a facility and have control over all her care, medical and finances.

If your mom falls again and requires a trip to the ER, you can refuse to have her returned to your home on the basis of an "unsafe discharge". Don't let them pressure you into taking her back, even temporarily. The hospital social worker will start the process of placing her and gaining guardianship.

I'm not sure what can be done during the covid problems as nursing homes are locked down for now. But you can start by calling social services to see if they can provide any relief for you at all. Please do not feel any guilt over any of this. You've done as much as is possible to help her and now you've hit a wall. May you have quick success in resettling her elsewhere, and have peace in your heart that this solution is best for everyone.

Beatty May 2020
Yep. What I call the WFTF club (waiting for the fall).

Sadly, membership is up this year.

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