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.
Anyway, we aren't mom's guardians, so I don't see how we can force her to move.
Please keep us posted on how you're doing. Don't let your mom ruin your lives!
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?
Right about this time, the house next door to me became available at sheriff's auction. We all talked about it, and it sure seemed like a great idea at the time: Mom and my brother right next door, team effort and all that good stuff. So mom had me buy the house at auction for about 1/3 market value.
We had the stair lift installed for her and performed our due diligence to make it as safe for her as possible. It's a very nice house. Not fancy, but it's in a historic district and an outstanding, engaged neighborhood. She has done nothing but complain about the house since she moved in.
My mother is also a racist. She will probably never get used to living in a diverse community. She mentions the "diversity" in her complaints about the house, using what is, to me, offensive language. Meh. I hate this.
Anyway, the house belongs to her.
We are concerned that because my brother lives there with her he has set a precedent of sorts. In other words, since he went down the path of being her caregiver, that now he has no choice or option unless she can be convinced to go to Assisted Living. And that if she digs in, which we believe she will, she will NEVER agree to it. And brother will have no escape.
Ultimately you guys are really going to have to decide whether you want to continue to help her like you are or if you can essentially walk away from her care and let the chips fall where they may, which would theoretically force her into some other kind of care situation. I don't know about her owning the house - I'm sure others will chime in with more info. I thought you owned the home she was in...but if you and your brother want her to move somewhere, your brother is going to have to find another place to live. I'd say start there, which may force her hand to get more help.
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.
I'm going to be pretty blunt here. I'm sure her life has been difficult and disappointing to her, Countrymouse. But my mom was sad and miserable well before the MS. If I could tell you the number of times she told us she never wanted children, and how relieved she was once we were grown and gone. Or how I stopped going to school dances altogether because the day afterwards she was always filled with rage towards me, telling me horrible things about myself.
She and her partner fought constantly because of essentially all the things I described in my original post. For those 35-ish years she was gone, every single phone call consisted of her crying about how mean he is or whispering about how much she hated him and ALWAYS about how unhappy she was. When I would suggest her coming back here, she said that she had put too much time into it, and would see it through to the end.
"It" was her partner leaving her money.
She does not have a proper medical support network in place here. She ends up at the emergency room for a UTI or pneumonia, has a hospital stay, connects with a doctor there, follows up once (because we insist), then resolves to never see the doctor again. THREE different health care systems here will no longer send OT/PT, social workers, etc. because they show up at the scheduled time and she won't allow them in. She's essentially getting herself blacklisted.
The thing is, she truly cannot be left alone for more than an hour or two. She falls a lot. She sits and gnaws on her jealousies of everyone as well as past and imagined injustices. She cannot operate the stove. She won't stay off the stair lift when there's no one there. She refuses to call me when she needs something. And through it all, she's horrible to those of us who have done everything we can and are bending over backwards to try to keep her safe and healthy.
She wants to die. She's tired of dragging her body around (her words). We just found out that she has been ordering all these "supplements" thinking she could find something that would kill her. She isn't allowed any access to her medications, because she was hoarding the painkillers and other pills with the intention of "ending it". When we figured out what she was doing, she lied about it initially. Then she admitted it, but said she flushed them. We believe that is a lie too. She is probably only alive right now because she has forgotten where she stashed them.
I'm sure she doesn't want our input. She has never wanted anyone's input. But the fact of the matter is, she has been unable to live on her own for 25+ years. Unless we can somehow convince her to go to assisted living willingly, it seems we are stuck with this situation. How do you hand over responsibility? It sounds like abandonment.
I don't see how we can stop trying to help her when she needs us for essentially everything, even though she thinks she doesn't. She can go to the bathroom by herself and dress herself. And read if she wants to. Mostly she wants to just sit and chew on bad thoughts until she gives herself diarrhea. And then she needs help with the bathroom. She won't allow helpers in the house, so that leaves it to us, unless we abandon our mom and let her starve or die in squalor.
That's not going to happen.
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.
I don't want to give the impression that I've always had this anger. Even when I knew I was being treated badly, I just chalked it up to the MS, felt horribly sorry that life had dealt her a crappy hand, and did everything in my power to try to make her life more happy/bearable. All from a distance, of course, as she had moved away.
The anger has only come out since I've experienced first-hand how miserable, hateful, venomous and spiteful she is. And the more compassion you have or the more you try to do/arrange for her (at HER request), the worse she treats you.
I mentioned that I have COPD. Because of that, I have limitations even on my best days. When it's as cold out as it has been here lately, I can't go outside at all. My best friend comes in on Tuesdays to dust, vacuum, do some grocery shopping and sometimes get dinner started while I sit at my desk and do my job. My mom LOVES my friend. Or at least she says she does. I always check with my mom prior to my friend's visit to see if she would like her to pick anything up for her.
I texted my brother tonight to ask him to tell mom my friend is coming and to see if she'd like anything picked up. He said she has already gone to bed and isn't speaking to him. I can guarantee she will let HER choosing not to speak to him keep her from making a request, then will blame him for it.
Anyway, my mom is anti-MS Society, anti-Support Groups of any kind. She will not participate. Oh, and anti-counseling.
Mom is very, very good at seeming ok in front of third parties. Unfortunately, healthcare folks tend to blame everything on my mom's MS.
We definitely need to turn over mom's care to someone. We just don't know how to make this happen for sure. We want her to be safe, and at the same time we need to extricate ourselves from this situation without abandoning her. Here is the current plan. Input welcome.
There is a one bedroom opening in the Assisted Living residence living building on the campus where she last had rehab. It was the only place over all these decades that she didn't complain about. I called them last week, told them she had stayed in their rehab center recently and asked them if they could do an initial assessment based upon the case notes they had on her. I did this because mom said, "I don't want to live under your thumb anymore. I hate this f***ing house. I want to move to Assisted Living". Strike while the iron is hot, right?
So by the time they called me back today to let me know they'd done that, and that one unit is open, mom had changed her stance to "You can't make me leave my house. I'm not going anywhere. I explained the situation, kindly, and she told me that's more common than I might think. We went ahead and made an appointment for mom to see the place, ask some questions and have lunch there. Because she is so angry at my brother and me, my niece (the STNA) is going to take her.
We are hoping that by Wednesday, she will at least agree to go with my niece to look.
I have also scheduled a long term care consultation with the Ombudsman at the local Department on Aging. They will come to my mom's house and talk to mom and us. Hopefully that will be a good person with which to share our concerns, and we will be very clear about the fact that we cannot do this any more.
The last resort thing is to get her into a hospital somehow and when the social worker talks to us about her release, explain what's going on.
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.
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.
You made some conscious choices about her care. Your motives were compassionate and loving. The outcome is not what you anticipated. This is not working out. It does not appear to be best for your mother, and it certainly is not best for you or your brother.
You sincerely thought you were doing the right things for Mom. Gold stars for great intentions.
But continuing to do the same things that are clearly not working doesn't make sense.
You and your brother caring for her is enabling her to think that she can get by on her own. That can work just fine in many situations. But not with your mother's cognitive limitations. Stop enabling her. Let her face the reality of her limitations.
But, of course, you don't want to turn your back while she falls down the steps or fails to eat for days. That is where CM's suggestion about turning this over to professionals comes in.
One approach would be to wait until her next hospitalization. Immediately talk to the discharge coordinator and the social worker and explain that your brother has been living with her but he has plans to move out. You have been trying to keep an eye on her but you can no longer do that. If she returns to her home she will NOT have family doing the caregiving.
You don't have guardianship. You can't say where she lives, but you can say what you are willing to do. Make it absolutely clear that you cannot continue to provide caregiving services. Mother would be returning to a home with no help. Also mention her history of not allowing outside help into the house. Don't be intimidated or guilted into backing down. What you have been doing is NOT working and you need to do something else.
Another approach would be to get in touch with your state's chapter of the National Multiple Sclerosis Society. See if they have a social worker you could make an appointment with and find out about what resources may be able to help out here.
Discuss this situation with her doctor, if you have a HIPAA waiver and can do so. If the doctor cannot talk to you he or she can still receive information from you. Let the doctor know what is going on and that there will be a change in your mother's care arrangements.
You are absolutely right. You cannot go on this way. I don't know if any responses have hit on anything that seems right to you yet. I hope we have at least empowered you to take this bull by the horns!
Keep us informed, please.
You may well need to wait for a fall or other "event" for a change to be able to be effected.
It seems to me you have a viable plan in place to at least get the ball rolling!
I'm not surprised that your mother is anti-MS Society. Also anti-counseling. But that should stop YOU from consulting with them. She might be anti-Department of Aging, too, but I'm glad that didn't stop you.
An MS caregiver support group would be for YOU and your brother, not your mother.
Psychotherapist Pauline Boss advises that it is not necessary and often not safe for daughters and sons who were abused in childhood to do hands-on caregiving for the person who abused them. Your poor brother cleaning his Mom's poop up, dredging up the abuse from his childhood! He absolutely needs out of this situation, and soon! Here is what Dr. Boss recommends:
"If the patient is financially abel, set up a plan for professional care. If not, talk with the county social worker to find out about alternatives."
"Each case is different, but with most, I encourage some kind of continued management -- often through a social worker --to make sure that the caregiving team or the nursing home professional are treating your family member well. This may be the best you can do given your history together."
It is OK to do the best you can do. Your upbringing was apparently dysfunctional. In spite of that you sound like like very decent caring people. Face your limitations and do the best you can!
When I did that for a friend's Mother, the manager stood facing the Mother, I was behind her, facing the manager. When she was asked, 'do you want the apartment', she replied, well, ' yes, but I want to wait'.
Without any family authority, no POA, with a lot of head-shaking unseen, a yes a no, then we walked down to the office and she got the apartment.
My place as advocate, without authority, was to encourage her in the direction of:
"What do you want?", With every roadblock, redirected to "What do you want?".
Keep it short, don't make the process a long ordeal, be sure the person is fed, watered, and medicated properly. The family was not there, but they moved her in. This may not work for everyone. I did not really know what I was doing, but I was just all for what this lady wanted.
Hope this helps. I totally understand when the family is too concerned, enmeshed, or just cannot take action. Get help.
She is not a plant, not a dog.
Instead" make sure you have ambulated her to the bathroom, give plenty of fluids, make her comfortable when visiting the apartment".
In agreement with others, pre-arrange the transaction with management. They know not to give her too many choices.
Is there anything stopping you from making a decision for your mom, for your brother, for yourself?
I am asking now, because you might want to have a witness and tape recordings from here on out, or she may be able to take you both out with her.
Tomorrow 1/20 is Assisted Living visit day. We have no idea if she will go or not. We made the appointment when she said she wanted to go "live somewhere", meaning AL apartment. When the pendulum made the swing in the other direction and she was saying "you can't make me leave my home (the home she says she hates and it's all my fault she has it)", we did NOT cancel the AL tour appointment.
But we also haven't mentioned it to her again.
Bad people that we are, we plan to take advantage of her cognitive issues and get her up and ready to go in the morning: "Remember? They're expecting you, and Cindy (my caregiving brother's STNA daughter) is taking you because I have to go to work later and don't want you to feel rushed."
Depending on how THAT conversation goes, comments about how lucky she is at the timing of this 1 bedroom apartment coming available just when she wanted it.
She still won't call me. Still isn't talking to my brother, who lives with her. Hopefully, she will put on her fakey face tomorrow and be "sweet and lovely" while she's there with my niece. IF, in fact, she is willing to go.
I want to thank Babalou for a paragraph that she wrote, above. I took a photo of the screen and cropped it so that I could pull it up on my phone at a moment's notice. It says exactly what I need to be able to say. I'm also trying to memorize it:
" 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 assisted living. If you hate it, we can hire an agency to care for you here. But brother is turning in his notice."
Babalou also said the following:
"Yes, you're 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."
At this point, our primary concern is that she is in a safe place and has good care. I don't think of that as abandoning her, even though she might. Her partner left her money so that she COULD go to assisted living.
Our worries regarding abandonment are related to the current situation. We are worried that she will fall, etc. while my brother is at work and he will be liable, even though mom won't allow anyone to come in and stay with her. Is his going to work and leaving her alone considered abandonment?
Also, once you move in with someone as their caregiver, isn't there an responsibility of continuing their care? He can't just pick up and leave (nor would he, as far as I know) knowing she cannot be alone. He's concerned that his saying that he can no longer do this will open him up to abandonment charges.
We've never done this before (caregiving). One day it was life as usual, and the next day we had mom. It was a crisis situation then, and it has remained so. The impact of this on all of us, mom included, is NOT good. If all this can happen in 7 months, what will the next 7 do to us???
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.
When I read situations like yours Tinkster I can only think of what lies ahead for me, and my sister. My mom has dementia and I will say that when my mom gets into her behaviors that are very challenging, I sit her down and try to have a heart to heart talk with her. I do wonder if she'll remember and believe or not she does. I let her know that there's going to come a time when my sister and I will no longer be able to care for her because we're not going to know what to do for her to make her feel better. She sits, listens and even tells me she understands. We stay in close contact with my mom's doctor because they're the ones that need to document her health and you will need this documentation one day. Well my advice to you is get her to see her primary physican and tell the doctor what you and your bother are going through. The doctor has to recommend what direction to take with your mom. This is not a healthly or safe behavior for her nor you and your brother.
God bless,
I recall your post upthread about the house your mom was living in. It seemed like you bought it, but for her use. I would double, even triple check on the General Warranty Deed of the house, just to make sure who is the legal owner according to the deed. Sometimes, things get mixed up and things that were discussed at the time get changed. I'd make sure and get a copy for myself. The deed should be available on the County's register of deed and land titles.