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.
Babalou, my niece is able to use her professional skills when dealing with mom, because she hasn't really been a "grandma" to her. She's only ever seen her a handful of times since she's been older than a toddler.
I had some interesting feelings this evening that I thought I would try to explain here to see if anyone knows what I mean. I feel myself stepping backwards from my mom. Not in a bad way, but in what I hope is a positive way for both of us. If I had to draw a picture of what the word "mom" means to me, it would be a picture of a very fine necklace chain, knotted up so badly that you feel it will never be functional again.
In my head, I keep going over and over decades of stuff. Every time my brain dredges something else up, I hold it out, try to examine it honestly from all sides, then put it away. Hopefully forever. Seems like it's dawning on me, finally, that she has never been a 'present' parent. She didn't protect me from my dad's beatings. She was hateful and jealous towards me. She abandoned all of us to pursue a relationship with someone she didn't even care for, initially, in hopes of a monetary payday down the road.
And yet all these years, I have given my mom a pass because of the MS. No matter what happened, I would blame the MS and just feel sorry for her. And I always figured that my next accomplishment would be the thing that would make her love me like a regular mom.
I'm not one of those "poor, pitiful me" folks. Whatever path brought me to where I am, I am grateful for it. I'm smart, hard-working, an accomplished writer/artist and corporate executive. I'm honest to a fault, compassionate, a good friend and surprisingly able to love people AND allow them to love me. I'm happy with the person I am, for the most part. I just wish I hadn't been in denial for so long...
On some level, I guess I truly believed that this would be my chance for that closeness we never had. That I would be able to help her find happiness, finally. Neither of those things were EVER possible. I really don't think she has any idea how to love anyone, or what that even means. And her lack of happiness has nothing to do with the world around her and everything to do with what's inside her. And there is really nothing I or anyone can do about that.
I think that I'm on the verge of beginning my grieving process. And for that to begin, I had to come to terms with the things my relationship with my mom would NEVER be. And that is what I'm grieving. I will never have that mom from the tampon commercial who talks to her daughter about that "not so fresh feeling", then gives her a hug. I'll never have the mom who just wants to sit and talk about silly stuff. I'll never have the mom who says, "I love you" with any conviction or without it being in response to my saying it at the end of a phone call.
Do not pay heed to her if she backs down, do not engage in arguments about it, - keep packing her things and move her on the arranged day, Stay calm and enlist your niece to help, and get some meds to calm her down for the move if necessary.
Well done - you are getting there.
vstefans: She definitely has cognitive impairment, from the MS or from something else. She refers to it as "My short term memory problem. It's from the MS." We know it's a lot more than that.
Now that we may finally be on the path to getting her into an appropriate environment, another trainwreck is on the horizon: Brother #2. If you like horror stories, take a look here:
https://www.agingcare.com/discussions/Protecting-Mom-and-her-finances-from-sibling-194298.htm
Today, my mom moved to the AL facility. Based on what we have learned about her, we knew to:
1) Hire professional movers so that it would be organized, quick and professional
2) Make sure that we took all of her necessities, plus things important to her, such as the book she is currently reading. NOTHING EXTRA. Other things can be taken to her later as she thinks of them.
3) Not leave until EVERYTHING was put away. No boxes/bins remained. For my mom, boxes with things in them MUST BE UNPACKED IMMEDIATELY. Empty boxes MUST BE PACKED WITH THINGS IMMEDIATELY. With zero boxes sitting around, it becomes a non-issue.
I just spoke to her on the phone, and she sounds happy as a clam. Of course, no idea how long it will last, but I have a good feeling about this.
I have to say, knowing that she is in a safe, wonderful place and not next door to me is such a relief... Well, there are simply NO words. I actually feel the weight lifting from my shoulders. Literally.
Maybe I will be able to sleep tonight.
My mom has been doing SO well at the Assisted Living facility! She has gained weight: When she came here from out of state, she weighed high 80s, low 90s. She now weighs 125 lbs, which is perfect on her. In fact, she had to buy all new clothes because she outgrew what she had.
She has made some friends at the ALF. She has been pretty compliant. The staff there has totally stayed on top of her UTIs and other health issues that pop up. She finally took delivery on the powered chair she wanted (but still refuses to use).
Eight months. Eight decent, mostly peaceful months... Well, pull up a chair and pop some corn. You are not going to believe this!
Some of you may recall that in addition to my brother #1 (the caregiver who lived with mom next door for those few months), there is a brother #2. Brother #2 is an alcoholic with a horrible temper. He was recently released from prison where he served time for Class II Felony Assault. Domestic violence against his wife. Not the first time, and certainly won't be the last. After his release from prison, he moved back home with the wife he abuses. They live in a trailer park in a very rural area about 45 minutes from me.
[I want to mention here that my brother is the only person I've ever personally known in my 60 years on earth who has been to prison. Just stating this because I think it's important for context.]
Last week, I was talking to my mom on the phone and she kept giggling. I didn't ask her what was funny or anything, as I knew it was a passive-aggressive way for her to bring something up. Finally she said (without my asking or prompting), "No... I don't think I'll tell you just yet. (Sing-song voice): You're not gonna like it!"
At this point I want to interject that I have spent these last eight months learning how NOT to let my mom manipulate, guilt and abuse me. She spends a good portion of our phone calls and in-person visits figuratively poking me with a sharp stick in the guise of sweetness and light. I have learned not to bite. Very empowering, but it drives her crazy. She has complained a lot about me being "bossy", and finally told me that she doesn't want my advice. I am holding her to that.
Anyway, her teasing and taunts about her Big Secret fell on deaf ears. I just wasn't playing into it. Finally she said with a sigh, "Well, I suppose I might as well tell you. I'm moving next door to brother #2 and his wife. I'm going to buy a trailer and live on my own."
This is NOT a good thing. Alcoholic brother with a short fuse combined with my mom's behavior? There is no way this will end well. Not to mention the fact that my mom will be living alone (next door, but kind of around a bend and not super close), will have access to a stove and... Well, a million things.
Part of what we pay for at the ALF is administration of meds. She cannot do that for herself. She swears she can. She shouldn't have access to a stove unsupervised (for both physical and mental reasons). She cannot manage her health care. She needs assistance with some aspects of personal care, as well. Historically, she would never allow "outsiders" to come in to her home for any of those things.
Her memory and/or cognitive abilities are weak: It can take over ten minutes to successfully give her a phone number, have her write it down and have it be right. I give her regular updates (plus whenever she asks, which is several times week) on her finances: It's common for her to not remember thirty seconds later how much money I told her she has in her checking account. Just yesterday I was telling her "You have $X in checking, and there are three bills coming due before your next Social Security check is deposited. They total $Y. That leaves you with a balance of $Z". I couldn't help her understand the subtraction aspect.
I have financial power of attorney and I handle all of her bills and banking. I'm very organized, honest and meticulous.
Both of my brother have money issues, and my mom has been known to "loan" (read: give) them money from time to time. Not five or ten bucks. Hundreds up through thousands of bucks. We three siblings each received an inheritance of about $30K from a cousin a few years ago. Both of my brothers blew through theirs in mere weeks. Amazon, eating out, shopping trips. I am so glad I have FPO. Hopefully that will keep everything above board.
(continued in next post)
She has no concept of what all is involved. She has never done this before. Someone has ALWAYS taken care of these things for her. She will slyly wedge out-loud musings into our conversations, never coming out and directly asking for advice, help or input. The most I am doing is pointing her to the person or entity she needs to talk to.
I have NOT volunteered to assist with this in any way whatsoever, and I will not. I am totally against it, and I have done what I can to be on record as being totally against it. In fact, I spoke to the ALF before she had even given her notice and told them what her plans were. I told them about my concerns (her living alone, even if it's right next door to brother #2, his alcoholism, felony domestic violence prison time, etc.).
I have to confess that even though it is freeing, I still struggle with some degree of guilt. I'm able to talk myself down from that most days. I'm trying to find any potential grain of good that could possibly come out of this, and the only thing I can come up with is that mom won't be going through her funds as quickly if she leaves the ALF.
Another wrinkle here is that brother #1 and I are estranged from brother #2 and his wife. Have been for years. On some level, he and I feel that because mom knows we are estranged, she is essentially saying that she chooses him -- the abusive alcoholic that she feels sorry for -- over the two of us. That hurts. It really hurts. And any visits to my mom there by me will have to be carefully planned to avoid contact with them. They scare the crap out of me.
Wish us luck...
Last night on the phone, after trying a million different ways to get me to voice my unhappiness about the situation, I finally said, "There really isn't any reason to discuss how I feel about it. You know how I feel, and this is your choice. You have a right to make your own decisions, even bad ones." She didn't bring it up again.
For f***'s sake.
Tinkster, I just don't know what else to say.
Do you think this will actually happen? Has the ALF accepted her notice?
Your mother is bent on self-destruction. I honestly, truly do not see what more you and brother 1 can do for her. I also am at a loss to understand why she feels driven to behave so hurtfully towards the two of you. Perhaps that too is part of her self-destruction.
But from the point of view of the ALF, do they not have a duty to discuss her plans on leaving? And how do they react to the prospect she has in mind? I know she's a free agent, but she's also a vulnerable resident. Have they lodged any kind of objection?
You are behaving absolutely correctly. I wish I thought that would be a comforting thing to say, but I don't suppose it really helps. I'm so sorry.
So I just got off the phone with the Executive Director of the ALF. I kept it brief and to the point, telling her about brother #2's history, the fact that my mom plans to live next door to him and reminding her of my mom's physical state. I told her that I am concerned about my brother's temper, alcoholism, mom living alone and falling, burning herself or burning the place down trying to cook, not taking her meds properly, etc.
I explained that I understand that my mom has free will and the right to make her own decisions, even bad ones, and that I want to make sure I'm on the record saying this is a very bad idea.
She agreed that it's a horrible idea, but emphasized that I am right when I say that really no one can stop her.
A friend of mine sent me a graphic the other day, and it has become my touchstone. It says: "You are not required to set yourself on fire to keep others warm". Words to live by. I hope nothing horrible happens with my mom, but I know in my heart beyond a shadow of a doubt that I have done my duty. I've gone above and beyond, and endured life-changing abusive behavior from my mom.
This has changed me. It has cleared my eyes and my heart and shown me truths that I've spent a lifetime rejecting. It broke me, but I *will* emerge stronger for it.
I am sad for her. Sad for me. Sad for us as a family that we are so broken. I can only hope that moving forward I will be mindful of every day, grateful for blessings and treat those I love a million times better than my mom treated me.
Is your mom even capable of arranging to purchase a mobile home? Does this mobile home actually exist?
I guess we shall see if she can arrange all this. Yes, the mobile home does exist and it will be ready for move-in around the end of September. I am assuming that brother #2 and the missus will be assisting my mom with some things. Not convinced they will do much better with stuff than mom would.
Keep us updated!
1. How old is your mother, and does she have the financial resources to purchase a trailer?
2. My thoughts are that since she's been living in a facility, as well as what might be apparent to any loan officer that there might be some cognitive issues, that the officer will recognize that she doesn't have the capacity to live alone nor be responsible for mortgage payments. The former isn't the responsibility of the loan officer, but the latter is, and it's critical.
3. Another issue is zoning. Someone can't just park a trailer on a lot on which a house already exists (if I'm understanding correctly) or even on a vacant lot.
4. I'm wondering if she really plans to go through with this or is just "yanking your chain" to reassert control.
5. I do think you're right in distancing yourself from what could be an impending disaster, IF she actually gets a loan and manages to get a trailer parked next to Brother #2.
6. Given a potential disaster, I'd make sure I documented everything I did whether it's as a daughter or proxy. There could very well come a time when (false) allegations are made against you.
7. I'm wondering also if she'll retaliate against you by executing a new POA appointing Bro # 2.
8 You might also check your brother's prison record to see what his parole conditions are. I assume he hasn't volunteered to care for your mother, but if he has, it could be that his criminal history prevents him from assuming care for anyone but himself, or from handling someone's money.
You might want to contact his parole officer to see if there are any restrictions that could keep him away from your mother.
And yes, Brother #1 and I are both staying out of it. Heck, his time as a live-in with her really messed him up, and he doesn't even visit her much. Last time he went to see her was Mother's Day, I believe. I try to go every weekend, my health/weather willing (I have severe COPD), and do some shopping for her and such.
Garden Artist: All good questions. My mom will be doing a rent-to-own, though she may just decide to buy it outright. No loan. It's at a mobile home park or manufactured home park or whatever designation they've given it. I do document EVERYTHING. After all, I am bossy and meticulous in case you haven't heard ;-)
My mom would have to be a special level of crazy to give either of my brothers access or control related to her money. She knows that. It's a fact, and not just my opinion. Neither brother can manage money and I'm Frugal Fanny: I have a paid off mortgage, no credit card or personal loan debt. Just one student loan and the loan for my little car I planned for for six years and finally bought. I put $300/wk in savings on top of my 401k and IRAs. I taught financial literacy classes to women at the local university.
I am wondering though if I should tell her attorney what she's doing. I did let her financial advisor know, as I talk to him about every week anyway. He's with a large investment firm and manages her portfolio.
I found once professionals were involved everything went in the right direction. I would talk to the social worker attached to the facility, all her financial people including her bank manager, her doctor, her lawyer - you get the ideas. -and work with them to develop a plan tat will be in her interests. I wonder if she needs a guardian. Good luck to you.
It is as though mother has been saying "prove you love me. No, *prove* it. Go on, PROVE it - I dare you!" This is just a really exciting new Double Dare.
But this time: let's even suppose it were technically possible, by joining forces with the ALF, to do a heck of a lot of fast talking, pay a heck of a lot of money, and wrest guardianship from a sympathetic and flexibly minded judge.
Outcome: Tinkster ends up with total responsibility for a lucid and articulate mother who will continue to defy and oppose her and *now* also has what she can polish up as a genuine grievance. Plus the makings of endless disputes with a brother who has already done time for violent assault.
Some prize. Why in God's name would she volunteer for that?
Tinkster, I hope that what will happen is that the practical requirements of moving herself into this wholly unsuitable accommodation, perhaps coupled with cold feet on the part of brother 2 on whom it will slowly dawn that his mother is serious - and maybe a little creative inertia on the part of the ALF, if they're up for that? - will all prove insuperable; and you will have done nothing to prevent it so mother won't be able to blame you, and you will be squeaky clean and will promise yourself never to rub her nose in it. Even though she's quite likely to pull this kind of stunt again.
But if it does happen... Have you given some thought to whether you are prepared to scoop her off the floor when it all goes to h3ll?