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.
I find myself getting bogged down in details such as "who will pack and move her things?". Well, I know it couldn't be me if for no other reason than my health. So then I think "A company could be hired to do it" which is followed by "Mom would hate someone else boxing up her things. She would be SO pissed off! At me!" And that is where I am tempted to leave it, and continue to struggle with the "OMG WHAT AM I GOING TO DO" aspect.
But I am trying really, really hard to take it further: "Well, mom will be mad no matter what is done, so..." And even further by trying to disengage from the whole process altogether by saying, "Someone else can manage this whole thing. I have done everything I can and no one can force me to do anything."
Well, I am HOPING no one can force me to do anything. Not really sure about that, but I am going to have to make it clear to everyone that I do NOT want to be involved in this process at all.
And frankly, bad brother and his wife created the current crisis. I think they should be held accountable. Plus, they live right next door to her so they could at the very least arrange packers/movers and let them in and lock up when they leave.
I've called mom's attorney and left a message for him or his assistant to call me. I really need to be prepared with what I'm going to say so I don't flounder. I need to make clear that I cannot be involved. And I think I need to make sure they have bad brother's phone number. Yes? Anything else?
Not POA, not guardian, not hostage and not indentured servant.
"My health will not permit me to do that" is sufficient.
Mother is BPD too. It is h3ll on wheels trying to work with her. Totally detach - totally. You cannot afford the stress for several very good reasons. You are not abandoning her - you are in contact with someone who will make arrangements for her care. Not your circus, not your monkeys. And stay away from her!!!!
"My health will not permit me to do that". Perfect!
She will continue to make chaos and try to drag everyone into it as long as she is deemed competent and has the freedom to do it. Just keep away from it.
I came very close to doing this myself, but mother was placed in a geri psych hospital for a year, which saved the day.
Keep us updated!!!
I don't have a huge amount of sympathy for BB or wife, but this -
"And frankly, bad brother and his wife created the current crisis. I think they should be held accountable."
- is not good thinking for you.
Doesn't matter whose fault anything was. Doesn't matter who packs up, or whether mother likes how they stack plates. Doesn't matter who calls whom. It'll get done, and it really doesn't matter how - come to that, on the world scale of things, it doesn't even matter if it doesn't get done at all. Only two thoughts you need to have:
Mother will be fine.
And
YOU ARE NOT INVOLVED.
However...
There was no clear indication that the attorney is willing or able to initiate any sort of assistance for my mom. My mom didn't reach out to him, even though she was made aware that she would have a hearing in her future. If she doesn't engage him, I wonder how limited his options are.
You will be glad to know that I made clear that I am unable to assist my mom any further.
I just got off the phone with the social worker at the Behavioral Center where my mom is. They've arranged for the ALF where she lived until her ill-fated last move to come and assess her today. Ideally, she will end up going back there. The doc told me yesterday that if this assessment went well, she could be back at the ALF as soon as Friday, but possibly Monday. I was stressing because there is no way that a mover could be arranged and all her stuff boxed and moved and set up in the new place that quickly. Not to mention that I have NO IDEA who will do it.
I kept trying to tell the social worker that I am unable to assist my mom any further, and asked her if there are resources through the Area Office on Aging, etc., that would facilitate setting her up with a mover. She said, "Well, you'll need to call them and ask."
Why me?
I'll tell you "why me". Because at the end of the day, I am always the one in the family who manages the crises. Everyone else pulls their little turtle heads into their little turtle shells until I make everything ok. Then I get blamed and bear the brunt of my mom's anger, and all those who did nothing get the pseudo-love.
I am ready to change my name and move away.
If mom ends up without her stuff, it's not your problem.
I do have to disagree with one thing though: While it doesn't matter to me who does the packing and moving, it really does need to be done. And I don't see anyone at all picking up the ball and making it happen.
As I was just typing that, I had another one of those moments of clarity that have been blessing/plaguing me since my mom's diagnosis yesterday. My mom does have mobility issues. She does have at least the cognitive issues related to the MS. She does have Borderline Personality Disorder. But she is not helpless, contrary to what she likes people to think most of the time.
Maybe if she gets moved into the ALF apartment (one of the ones they have set up for people to use until their belongings are moved/delivered) and no one else sets up a moving company for her she will do it herself. Or at least try. She is always saying how she wants to be so independent. Well, this would be a great opportunity for her, right?
And what can be done now? Boundaries my dear! "No, I will have nothing to do with her care. Please stop calling me about her care. She will be taken care of by the state."
I had to make the painful decision to allow my mthr to make bad decisions for 8 years without my involvement. I could only work with her once her cognitive level was such that she was not herself. I fully detatched, and APS looked me up when she was wandering. The helped me go through the steps of emergency guardianship, making arrangements for moving her, etc.
The social workers told me they really like getting estranged families back together because that's their goal. The social worker is really going to pressure you because that's probably her goal too. You don't have to answer her calls. You have the great pressure of the hospital wanting to get her out of the beds since they won't be paid for after a number of days. Tell the hospital social worker that this is your last conversation, and you will not be handling anything to do with that woman from when you resigned a year ago (w/e) until she dies. That pressure will be boiling under the social worker, and after consulting with your brothers and not being able to convince them, will go for the state guardian.
You want to be able to visit as simply her daughter, respecting her autonomy. Allow the state to take on the task of managing her, and step back into your life alone.
And I know you seen an unfinished project, a thing that must be done - furnished home, no longer lived in, all her things, can't just be left like that.
But humour me. Just as a mental exercise, imagine that it's the middle of the night, and nobody's in there or anywhere near it, and it gets struck by lightning, catches fire and is burned to cinders.
And? Anybody hurt? No. On the scale of things, it isn't important.
Okay, back in the everyday world, yes, it'll have to be dealt with one way or another. I hope not by lightning! - but I hope also *not* *by* *you*.
Your mother is competent; you cannot override her wishes.
So, her wish being to return home, let's proceed on that basis.
What is required to ensure her safety and wellbeing at home?
While she's in rehab, get everything down in a documented care plan. Ask for an Occupational Therapist's assessment of her home. Ensure that what she tells you about her wishes is said in front of professionals in rehab, and matches what she tells you in private. Gather into one file information such as:
home adaptations required, their cost, time required to implement them, estimates from contractors;
services required to maintain her at home, including names, contact details and contractual terms and conditions of providers;
a formal risk assessment.
It's all about arse-covering, as we say this side of the pond. The thing is, your mother being competent is entirely entitled to make her own decisions (even if they are daft); continual nagging of her about them is borderline abuse, true; and if she is able to understand the risks and consequences then she has every right to refuse help she doesn't want.
What she has no right at all to insist on is that you do the work. You could resign your POA - read back through Tinkster's thread to see how that's done. Or you could look for a care manager, if there are any in your area.
APS are giving you a hard time and making these frightening noises because, for obvious reasons, if they can bully you into doing the care work they don't have to - hurrah. But if you can show all your workings in independently verified documentation no abuse charge is going to stick, and no one has anything to gain by bringing one.
If/when you talk to your mother and say "mother, because you are demonstrably unsafe at home I cannot support your decision to continue living there and I will therefore be forced to resign my power of attorney" how does she respond?
Or, are you able to get pre-emptive advice from a knowledgeable attorney? That might be money well-spent.
I haven't had this problem; my mother has been pretty compliant when we've told her that she needs to do something.
If she's competent,, as CM points out, she can appoint a new POA. If you go to her and say "mom, I'm really sorry, but I can't take care of you at the level that you need anymore. If you can't see that you need to be somewhere other than your home with folks other than me taking care of you, I'm going to have to resign my POA; then APS will figure out with you where you're going to live and who will care for you".
I agree with CM that an eldercare attorney, paid for by your mom is a very good option for helping to figuring out what the best solution is here.
I always think that being able to visit as a loving daughter beats giving up your life career, and playing Cinderella, hands down.
Something for mom to consider, as opposed to a nicely set up apartment in AL.
The only thing I would say, and I really do appreciate the hair-tearing frustration of it, is that you have spent a lot of time preparing for a move she didn't want to make. Visiting the ALFs, making applications, getting her house valued: these were putting the cart before the horse, rather. And if she'd rather fill the house with handrails and commodes and a stair lift - well, why not? It can be done, and it's her choice; but I can appreciate - and *she* has to too! - that you just don't want to be involved. Nobody can oblige you to agree with her!
The caretakers seem to have misunderstood their own purpose in life, which again must be beyond frustrating. They are there to accompany her (aka keep her upright) if she wants to walk around and to ensure that she is catered for - they're not nursery nurses bottle-feeding a baby, for heaven's sake. They should be keeping a care journal, sure, and escalating incidents they can't handle (to their line manager); but what the heck are they doing calling on you to do their dam' job?
If you do decide on the resigning route - but ask your lawyer - I'd have thought it would be better to step right away. That won't stop you helping in more proportionate and manageable ways, such as getting your mother a good stout file and calculator and showing her how to keep track.
The repeated falls and refusal to use her walker, though. Hmm. Her doctor is completely satisfied about her cognitive skills, yes?
Has the rehab given you much information about how she's getting on this time around?
I placed mom (dementia) in assisted living; however, after two years and much change in her, I will be bringing her home for what I expect to be her end of life time. Hospice is helping and a great source for all aspects.
My only advice is to be EXTREMELY vigilant and monitor ALL activity and personnel, if you use AL option. Having said that, it is not our fault our mother's were/are difficult at best. It is highly important to stay healthy mentally and physically for yourself.
Happy to discuss more, if you wish.
1) Have her re-evaluated. You said she is level 2. Discuss and get in writing medical diagnosis and level of care needed. 2) Contact an Elder Care lawyer. Discuss findings of medical, current financial situation, and options. Hopefully, this will lead you to the ability to become POA Guardian and Custodian. When you reach this point, you are in charge, and can do what is best for her and you.
Without the above titles, she is still her own master and you cannot "force" her to do what she does not wish.
This is like giving birth...you signed on as POA to be the responsible party.