Things cannot continue this way. What can we do?

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I've posted a couple of times before. This is an update and a plea for help.


Mom is 76 and has had MS for 50+ years. She moved away from her family 35 years ago with a man who became her caregiver. They were very secretive about her health and needs, so we never had a clear picture of how she was doing.


Her partner passed away, and mom was brought back to the area where her family lives. We acquired the house next door to mine with the intention of making this a group family effort. My brother moved in with her, stair lifts were installed (it's a 2 story house). I pay her bills, manage appointments, etc. and my brother does the hands-on caregiving. I have severe COPD, and the accompanying limitations.


My brother works a part time job mid afternoon to about 10 PM. I have a corporate job that I, thankfully, work from my home office. I work about 60 hours a week.


Mom insists on using the stair lift on her own when she knows it's unsafe to do so. Initially, she was lying about using it, but we caught her at it several times. She won't stop. She has chronic UTIs, but frankly it's hard to tell the difference between that weird behavior and her status quo.


Many, many PT/OT people have been sent packing. Same as the visiting nurse she agreed to that her doctor set up. It was supposed to be M/W/F. The nurse came on Monday and it was fine. The nurse returned on Wednesday and mom went nuts on her and ordered her out of the house. We're getting used to constantly apologizing for her.


She really shouldn't be left alone when my brother goes to work. When it's warmer out, I can go sit with her (even though she resents it and is abusive the whole time), but I can't do that in the winter because of my lungs. She refuses to allow a third party come in and sit with her.


Lately, she has been saying that she wants to "get out from under my thumb". My "thumb" being that I remind her that it's not safe to use the stair lift when she's alone or asking her what she had for dinner. She said she would like to move to an apartment or assisted living so that she "wouldn't be a burden" to us. Of course, any time she has been in rehab or when her partner would take advantage of a respite opportunity, it's been total tears the whole time: "Get me out of here", "I hate it here", "I want to go home".


She has been hospitalized three times since she came back into our lives last June, and had a couple of weeks of rehab after each hospitalization. Hated the first two. Really liked the last place, which also has a residence facility next door. Talked to her about that place. She was gung ho.


I called them last week and explained the situation. The person I spoke to consulted with the rehab staff, looked at mom's record of her recent stay and said she would likely be "level 2 care" Assisted Living (there are 2 higher levels of care above this) and lo and behold they have ONE 1 bedroom apartment that will be available after carpeting is replaced tomorrow.


Now all of a sudden, mom is totally against it. She says she doesn't want to leave her house (which she tells us literally dozens of times a week how much she hates it and that she wants an apartment). Won't let anyone come to the house to help her. She is defiant. Talks non-stop about wanting to die.


We cannot go on like this. This is killing my brother, and it's killing me. She sabotages our every attempt to keep her safe and as healthy as she can be. She lies. She tries to pit me against my brother and vice versa (but we are wise to it, and have made her aware that there are no secrets between us).


To be completely honest, she has always been a miserable person. She has never been a loving, affectionate mom. She seems hell bent on self-destruction and it appears she wants to take us with her.


I refuse. My brother refuses. This has got to stop. What options do we have? My brother has no intention of abandoning her, but he can't continue like this. Please help.

Answers 1 to 10 of 10
Top Answer
I'm with Pam on this one. You've tried your best and she's fighting you at every step. Get her out of your home and into a care facility, where staff can manage her and you can visit when you feel like it. She sounds like a totally miserable human being, which is her choice. But she doesn't have the right to turn your life and your brother's life into a miserable hell too. And good for you and your brother for sticking together in this! That's a rare success story we hardly ever hear about on these boards.

Please keep us posted on how you're doing. Don't let your mom ruin your lives!
My dear, you need to read about FOG. Fear, obligation and guilt. You and your brother are dealing with an inadequalely medicated mentally ill person.

She is not going anywhere willingly. Your brother will become disabled or worse due to the stress of caregiving. You need to confront her, togeter.

" Mom, we can't do this any more. You need professional caregivers, three shifts of them. We've tried and it's not working out. You can go to assissted living. If you hate it, we can hire an agency to care for you here. But brother is turning in his notice.

Yes, youre abandoning her, for her own good and for yours. Agree with her, admit to it. Using the A word won't kill you. Caring for her will.
Call the MD asap and get tranquility meds for the move. Ativan is fast acting, good for transport. You will also need an appropriate med for her bi-polar swings in order for her to stay in AL. Stay AWAY for two weeks. I do this when my sister has a move; it gives staff time to settle her in.
Can you get her into a hospital (suspected UTI or aggressive behavior) and then refuse to accept her back into your care? That's one way other folks have managed to get a parent out of their care. And my mom is 96, so you could be dealing with this for another 20 years...
Update:

I have become superstitious for the first time in my life. I'm afraid if I talk about this, I will jinx it, but here goes anyway...

Mom pitched a fit when my brother told her this morning that niece was coming to pick her up to take her to the AL tour. My mom cares VERY much about how she appears to outsiders, so he said, "Well, I'm sorry you don't recall this appointment, but you should definitely keep it. You know you like that place. What if you want to move there in the future and they think "I remember her. She's the one who stood us up."?

So she went. Very grudgingly. My niece tells me that she was angry the whole drive there. Niece reminds her that when niece was doing mom's hair last Sunday, that she was complaining about not living on her own in a little apartment, and that we made this appointment that day as she requested.

That settled her down a bit. And of course once they arrived, mom put on the Totally Awesome Sweet Lady act for the tour and such. Niece said that the 1 BR apartment is the perfect size for mom, and that she really loved it. And was tickled that it is getting brand new carpeting this week.

Long story short, mom put down her deposit and is supposed to start moving in next week. Possibly Monday.

When I heard this, I cried. I cried like a baby.

Please send positive vibes that mom will go through with this, that she will be happy there and that my other brother doesn't try to do anything to take advantage of the situation.
Me, I'd join an MS families' support group and start again.

The thing is, your mother has been living with this nightmare disease for virtually all of her adult life. A miserable person? Not affectionate and loving? Voted with her feet and left you all to your own devices 35 years ago? Well, it must have been pretty rough on you kids. But not much less rough on her, don't you think?

She doesn't *want* your input. She moved back in a weak moment after losing her partner and caregiver, but she's been independent of you - and, I'm not unsympathetic to your feelings too, expected you to do without her without much thought to the cost of that for you - for all the previous time.

If she is financially independent, and by now has a proper medical support network in place locally, then your brother and you should hand responsibility formally over to a care manager or case worker. Your brother could move out - or with any luck move back to his previous home? - and resume normal living.

I don't mean make a drama of it, I just mean beat an orderly retreat and start letting her run her own life again, with professional support taking the place of her partner. If you stop trying to help her, she'll have to stop fighting you. That could turn out pretty well.
Countrymouse, you asked what my brother wants. I didn't feel I could speak for him without asking him. His response:

I want mom to go to assisted living at whatever level she needs. She has broken me, and I am doing my best to stick it out until we find a solution. It's taking everything I've got to not just abandon her and this horrible situation. This was a mistake. We just wanted to honor the promise she extracted from us for decades to never put her in a nursing home. It's emotional blackmail, and it's rotten thing to pound into kids as they're growing up.

One story I need to tell: I try very hard to let all the meanness and nastiness roll off my back. But one night recently, I awoke to the sound of her moving around so I went to see if she was ok. There was poop EVERYWHERE. All over her, the bathroom, hallway, her bedroom, the bedclothes. Everywhere. She was upset about it, and I minimalized it and said, "Well don't worry about it. Let's just get you and the bed cleaned up and then I'll tackle the rest of it."

The whole time, she is having a two-voice conversation with herself and crying about wanting to die, hating living in the house, asking why I am doing this to her, wanting to go away somewhere, and cussing ME out with foul language that until last June I had NO idea my mom even knew.

We got her and the bed cleaned up, I tucked her in, and then I started cleaning up the rest of the mess. It was the worst smelling thing I have ever experienced. It was a huge job, so I had quite a while to think. Here's the memory that came to mind.

When I was about 7 years old, I started sleepwalking, and sometimes I would go into a hall closet to pee, then apparently just go back to bed, none the wiser. The next day, my mom would yell and scream and berate me the whole time I was cleaning it up, telling me that even a dog wouldn't do something so nasty. And she told the neighbor lady who told her kids. You can imagine the hell my life became at school.

And that's the irony I was struck by as I cleaned up my mom's poop at 3 am.
For the past couple of months, I've been reading about detachment: What it means. How to do it. Etc. I spent a lot of time last night reading over the replies here and digging into my heart and brain to figure out where I am.

My mom has made her way in this world through pity. People feeling sorry for her and doing everything they could to enable her, take care of all of her needs (even when she was able to do so) and make sure she had whatever she wanted or needed. Growing up, the thing that made me the saddest in my young life was feeling sorry for my mom and wanting to do everything I could to make up for the lousy hand she was dealt. I even found that as I traveled the world in the military and throughout my life, every new vista... every new experience... was tainted by the sadness that I was experiencing something my mom never would. That sadness really kept me from living life with as much happiness and enjoyment as I could/should have.

During my thinking time last night, I finally realized that mom chose her own path. Yes, she has had MS for half a century plus. She has mobility issues, but other than that is more healthy than I am! Now I've known a LOT of people with chronic illness over my lifetime, and other than my mom, they all CHOSE to live as full a life as possible. I have a quadriplegic friend who is the director of the area abilities center. I know someone who lost their sight through illness at the age of 17, but they adapted and continued to LIVE. And for Pete's sake, look at Stephen Hawking!

My mom CHOSE to not live well and happily. She CHOSE to not find ways to enrich her life and make it better, for whatever reason. And any time anyone invested love, time, care and even money in trying to MAKE her life better, she resisted and even became abusive towards them.

I've become convinced that being happy would make her miserable, as crazy as that sounds.

In my ignorance, I spent my life trying to make her happy, do nice things for her, took her on her one and only plane trip, took her to a concert, tried to find ways to make her life better all from a distance. When she came here to live, I just knew that being able to be hands-on with her situation I could make a difference.

But deep inside, she knew what I didn't.

I'm convinced she has always known that if she didn't have something to worry about, something to be angry or upset about... If she was HAPPY... then people would no longer pity her or feel sorry for her, and that would mean she lost her power over all of us. And she sure didn't want THAT!

So with all that in mind, and fueled by the lighter load my shoulders are carrying today, I decided to call my mom this morning. As I've mentioned, I tried calling her all week, to no avail. I wanted to reach out today to remind her that I won't be handling her bills, etc. anymore, and to give her a heads-up that the process included sending her a form by certified mail.

I called. She answered. She sounded wary... almost nervous. I told her I was glad to finally be able to reach her. I said, "When we spoke Sunday, I let you know that I will no longer be taking care of your bill paying and such. I found that part of that process -- since it was a legal arrangement -- is that I send you a form by certified mail that makes it official."

She was surprised, and it seemed like she might have thought my reluctance to continue as POA would blow over or something. But she said, "That's good. That's really too much for you to take on anyway."

Now THAT, my friends, was the test for me. LOL! It wasn't "too much for me to take on". It was only a problem because she was difficult. I decided not to engage (I'm detaching. Remember?) though I did say, "Yes, given the way things are, it's really better for me that I not continue."

I gave her a quick overview of the bill/payment/account sheet she'll be getting along with the POA resignation, and I mentioned that I included the contact info for the tax preparer I used for her taxes this year. She started to talk about "I don't work. I don't file taxes. I don't need to contact someone to help with that.", which was an oft repeated argument from her.

I could feel my chest tightening, my heart racing, my throat closing up, my stomach clenching. I started to panic. What if whoever picks up taking care of this stuff for her doesn't get her taxes done because she says she doesn't need to? She'll get in trouble with the IRS! She will owe penalties! MAYBE SHE WILL GO TO JAIL!

Breathe. Detach. Detach. Detach.

So I said, "I'm sure that whoever you trust to take over for me will see to it that what needs to be done is done, just as I have."

I don't care what happens.

Sanity begins the moment you admit you're powerless over other people. I only have power over myself, and today is my first step towards finding that power and using it to build the best and happiest life for myself that I can.



I can't tell you how much I appreciate this input. It hasn't been easy for my brother and I to stick together on this. Mom has been playing one of us against the other our whole lives, and we have to keep reminding ourselves that now that we see it and understand what's been going on, that we won't buy into it. We both share EVERYTHING she says to us, and have made clear to her that we do so. We both also immediately put a stop to any negative conversation about the sibling who isn't present. She hates that. She is always the "BFF" of whoever is in room, you know? It's no wonder she has no friends and never has been able to keep one.

Blannie, the hospital plan you suggested was the only thing I was able to come up with when talking to my brother earlier today. I said that if we could just get her admitted long enough, then she could go to rehab. And that when release time came, we would just make clear that home isn't an option.

But can we do that if home is HER HOUSE?
What does your brother want to do?

Forget abandonment, in criminal terms anyway. Your mother is a consenting adult. If she refuses assistance, you are not responsible for the consequences.

Your feeling that you would be abandoning her, in moral terms that is, though… well now. She's got both of you good and tangled in her own web of unhappiness, hasn't she.

Well. Since she won't allow outside helpers in, then maybe you and your brother can get support for yourselves - especially your brother, of course, since he's the one doing the spade work (for good reasons, I know, I'm not criticising!). He could commission assistance with personal care, and be there to let the people in - telling her that they have come to help him, not her, which is true. It's just an idea - help with physical tasks might take a bit of the pressure of him.

You both need strategies for coping with someone you feel responsible for but can't control. Do you and your brother have access to counselling of any kind? Do you belong to a support group for MS families?

There is one outstandingly good reason why it is worth the battle to get outsiders involved in your mother's care. And that - which jumps out of every sentence you've written - is that you are absolutely furious with this lady. How could you not be? She buggers off thirty five years ago, spends the intervening time developing habits of responsibility in you, and then comes back to bite you in the whatever. It's not what you'd call endearing. But it's also not a good basis for care.

Normally, I'd suggest trying somehow to get clarity from the person being looked after about what *they* would like to happen. But with your mother that's obviously not going to work. She is fighting the world, it sounds as if she really is as unhappy as she says she is, and she is, as you recognise, pulling you in with her.

So since you can't make her happy, you're trying to make her safe and keep her health stable. But. You can't do those things either, not unless she is certifiably insane or lacking mental capacity, without her consent. You can't stop her using the stair lift. You can't stop her hoarding painkillers or other medications.

I assume that any idea of getting her in front of a psychiatrist is a cruel joke? But there's nothing to stop you or your brother consulting one, about how to care for her without being destroyed in the process. You need to protect yourselves. There will be ways forward, don't give up hope.

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