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.
She has called me a few times since the move in October 2016 and we have a nice conversation. Based on our conversations, I suspect her reluctance to talk to me is related to her feeling that she made a mistake in moving there. She has told me that she hates it there and hates her life, etc. etc. etc., and my response is "I'm sorry to hear that." Nothing more.
She is terrified of storms, especially tornadoes. She and my dad and I lived in a trailer back when they were still very young and I was 4 or 5 years old. I still remember how they hated it and how scared my mom was during bad storms. After a recent day of storms/tornado watches/high winds, my mom called to tell me that she made a big mistake, moving into a trailer. She said that my brother's "plan" for what to do if the weather gets bad is to sit in his truck with his dog, crank up his stereo and wait it out. She said, "That sounds a little crazy to me." LOL! (Irony: For about 20 years I was a certified storm spotter for the National Weather Service, a ham radio operator and hobbyist storm chaser.)
She had a recent surgery for a kidney stone and weathered the procedure fine. She mentioned to me in a phone call prior to the procedure that her doctor is concerned about her weight, which has dropped to 85-ish pounds. I was pretty shocked, as that was her weight when she initially came here from Michigan after her partner died. When Mom decided to leave the ALF in October, her weight was 120+, she had made friends, and had even taught a painting class.
She tells me that now she stays in bed all day.
All of this makes me very sad, but my mom's self-determination has always been set on a path of self-destruction. Always. I know now that there is no changing her or "fixing" her. This is simply who she is. And as horrible as it probably sounds, when I get the call that she has passed away, I will primarily feel relief, knowing that she is no longer miserable and has finally gotten what she prayed for for so long. All of my grieving is already behind me: I've had to grieve for the mother/daughter relationship that I always thought was possible, but that never came to fruition.
For all of you caregivers and family members and friends who doubt the impact that this kind of stress can have on your physical health, let me tell you how I've been doing. Between the time my mom came here when her partner passed away and the time that I finally LET GO, my health had seriously declined. My COPD was one exacerbation after another. My sleep was horrible, and I never really got any good or real sleep at all. My life consisted of barely being able to make it through each day due to lack of breath and lack of sleep. I had also developed a horrible "mystery rash" on my torso and legs: I've had several biopsies and other tests to no avail. They even ultimately tested me for syphilis, as they were running out of potential diagnoses!!!
After I "let go" of the situation with my Mom and resigned as her POA, my health issues came to a head. I couldn't get a decent breath. I was worried that I would lose my job because it was taking me 60+ hours a week just to try to keep up with my duties. I couldn't think clearly, my memory was horrible and I was so tired it was ridiculous. I am lucky that I work from my home office, as I had taken to "sleeping" on the sofa, then dragging my exhausted self ten feet to my desk to work, then falling back on the sofa to try to sleep at the end of my work day. I couldn't do much of anything for myself or for my new husband.
During the most recent exacerbation of my COPD three weeks ago, I had to call my husband at work and ask him to drive me to my doctor's office. I had already decided that if I couldn't reach him, I would call 911, but he rushed home and got me to the doc. I told her that I needed a steroid injection and a steroid taper. She agreed, and added a strong antibiotic to the mix. I had also told my sleep doctor (I have sleep apnea and use a VPAP) that I was certain that my oxygen levels were still dropping at night. They sent me a recording pulse oximeter to use and send back to them for reading. Sure enough. My O2 sats were still dropping into the 60s at night. So now I'm on nighttime oxygen.
But you know what? I feel better than I have in a dozen years! And I noticed last night that the mystery rash has abated, along with the accompanying endless itching. For the first time in I don't know how long, I am LIVING MY LIFE and not waking up each day thinking it might be my last.
I had gotten to the point where my purpose in life was to make/save as much money as I could before dying so that my husband would be as well taken care of as I could manage.
I am now getting 5 - 7 hours of decent sleep at night. I feel somewhat rested when I wake. I am able to walk without feeling oxygen starved (to the degree I was before), and I am able to do things that matter to me, like load/unload the dishwasher, bake, tidy up the house, cook dinner and go shopping with my husband. I can talk much easier without the gasping for air thing. And I can eat without struggling for air. And I can play with my dogs :-) It may sound weird that things like tidying up the house are big deals to me, but I am a neatness/clean freak, and it would make me crazy to see stuff that needed to be done and not be able to do it.
I really believe if I hadn't extricated myself from the Mom situation I might be dead by now. And that's not hyperbole.
The stair lift most certainly could be -- and was, unfortunately -- used by my mom independently. Mom was supposed to be supervised when she used it because of her unsteadiness and the fact that the stairs in the 100+ year old home had a mid-way landing, requiring a transfer to the second stairlift. She had access to either my brother (living with her) or me (living next door) 24/7. There was nothing critical upstairs: She had a bathroom on the main floor, etc.
The problem was that she would say "no" anytime we asked if she needed anything from upstairs or if she wanted to go upstairs. Then the second we were out of sight, she would make a beeline for the stair lift and go upstairs. Just to do it. It was an act of defiance that was, I imagine, her way of saying that no one was going to tell her what to do.
She falls a lot. We were trying to prevent her from falling down the stairs. Seems logical to me.
In your post, Dontask4handout, you often say "Make sure she...". Make sure she uses the seatbelt. Make sure she knows where the lever is. Make sure she swivels the chair. That, in addition to her unsteadiness and frequent falling, is exactly why she was told not to use the stair lift if there was no one there with her. She wouldn't use the seatbelt unless we fastened it ourselves. She wouldn't swivel the seat far enough on the landing, and struggled with finding the lever.
Anyway, it's a moot point now. She is living in a trailer in the boondocks, and is down to 85 pounds. Again. I will post an update shortly.
Tinkster's mother has MS. But before it's assumed - as I did when she first consulted the forum - that the MS is the key issue - it isn't. The key issue is the mother's ?borderline personality, of the self-destructive, self-sabotaging, drama-creating kind.
The situation as is, is that Tinkster's mother has discharged herself from a facility where she was doing well, and moved in to a - I'm not sure what you call them. Sort of prefab dwelling? - anyway, a home in the same grounds as BB's house, supposedly on the basis that BB would look after her. She did this against all advice from responsible and/or professional sources. GB is no longer able to play any part, having been psychologically burnt out (to cinders) in previous years. Tinkster has already resigned POA officially and written to advise same to all concerned.
Tinkster and GB have tried. They really, really have tried. They have both sadly concluded that they need to let go to save themselves. They're not wrong.
https://adata.org/faq/does-ada-cover-private-apartments-and-private-homes
Another thing you can consider is having her use a regular elevator if the building has one. If she's in a wheelchair, then the elevator would be especially helpful and very useful to her.
Warning:
First, let's get one thing straight. I happen to have disabilities and I also happen to be an advocate for the disabled. What I'm about to say in this warning is just a warning to not cross the line of discrimination by denying access and equipment to the disabled.
* Don't deny access by keeping her off the stair lift if she's disabled and needs it, this will definitely land you in hot water with the law according to ADA. Denying her access to the stair lift would be denial of equipment to the disabled which could open a case with a disability lawyer, the civil rights commission and access advocates and you can bet your bottom buck you will lose in the end if you deny equipment to someone who's disabled and needs to use the equipment. Do not deny her access if she legitimately needs it because in the end you will be the one in legal trouble because you will definitely land in hot water. I'm only warning you because I myself was discriminated against at a public place, and in the end the people were caught.
When she uses the stair lift, just make sure she swivels the chair and knows where the lever is and when the chair swivels, it should lock into place at the top of the stairs, allowing for a safe exit from the chair. Most chairs should have a seatbelt, make sure she uses it. When getting back on the chair to go downstairs, the chair will swivel back, enabling the chair to be able to engage with the power allowing it to carry the occupant down the rail. When it stops, there may not be a need to swivel chair at the bottom of the steps, just at the top. Stair lifts are very easy to use, they are very user-friendly just like elevators are.
Why do people care about other people who do them no good and to whom they owe nothing? You will never know why they do. You just need to know that they do.
This message board is littered with the ruined lives of unloved adult children who are still seeking approval from narcissistic, mentally ill or just disordered folks who never gave their kids what kids need early on-- unconditional love and attention.
You've done your best. Time to let the chips fall where mom wants them to.
https://i0.wp.com/media2.slashfilm.com/slashfilm/wp/wp-content/images/The-Ring.jpg
You've discharged your duty about 10 times over. For whatever reason, your mom doesn't seem to believe that she deserves to be happy and healthy. That is very sad, tragic even, bit ot is NOT YOUR FAULT.
Makes me jump just thinking about it. That was quite seriously the last time a film made me leave my seat and scoot backwards over the sofa!
"Leaving that really good place was an act of stereotypical self-sabotage: "this is all going far too well. How can I f*ck it up beyond repair?""
You said: "When you asked concerned questions about it, that made it clear how stupid she'd been. She got mad because you were inadvertently making her face it." This. This right here. I was asking out of concern. To her, it probably came across as "See? I told you so!" And believe me, I was being VERY careful to be detached and not judgey or anything. Just concerned for her immediate well-being.
Something else occurred to me: Though bad brother's horrid, weird wife has always had me blocked on Facebook, one of the times he beat her up (about five or six years ago) and she had him arrested, she messaged me. A lot. She was telling me how it's bad brother's demons that will kill him because he's too stupid to fight them. Stuff like that.
But another thing she said REPEATEDLY was about God "taking my Mother home" and "end her suffering". Maybe she and my mom are in cahoots to get the job done.
I'm going to be hateful and small for a moment here and tell you all that bad brother's ex looks like the little girl in the movie The Ring. She always looks like she never bathes.
If she needs rescue, APS can do that. Until it's bad enough for them to do it, she doesn't need it, she just wants it. And if you do it without her asking you, then she gets to fight and blame you too! Win win!
Don't fall for it.
Leaving that really good place was an act of stereotypical self-sabotage: "this is all going far too well. How can I f*ck it up beyond repair?"
Your mother is being a text book impossibility! You will have to do some text book detaching - "how to love the waif without rescuing her."
But THIS is what you said that really hit home with me: "Or maybe a child you feel guilty about is a hundred times more compelling than one you're proud of".
That is apparently the case, isn't it? And when you combine that guilt for one child with your jealousy of your daughter, I guess any hope of having a tampon commercial-type closeness with said daughter is out of the question.
It still confuses/saddens/angers me that it was jealousy that fueled my mom's hatred of me when I was growing up. At least now I understand why there was so much hate. At the time, it was just really confusing to me and caused me to assume that I was defective or something.
Mom was in a wonderful place, at her idea weight, TEACHING CLASSES, socializing, not getting UTIs... She decided to make this move, supposedly because she didn't want to spend the money (or whatever her REAL reason was). Part of me wonders if she realizes now what a big mistake this move was, and if she is telling me about her weight and being sick and stuff thinking that I will do what I did before: Rush in, roll up my sleeves and fix it all. Because she would NEVER admit to making a bad choice. Ever. Even if bad brother held a knife to her throat and they spent all her money, she wouldn't admit that moving next door to them was a mistake.
In fact, she would probably figure out a way to make it MY fault. lol
I just knew you guys would be able to talk me off the ledge today! THANK YOU!
She did something - well, lots of things: where do you start? - really stupid. When you asked concerned questions about it, that made it clear how stupid she'd been. She got mad because you were inadvertently making her face it.
Oh Tinkster.
Your mother is being impossible. The only way you can not worry is not to care. I not only don't know how you do that, I'm not even sure you'd want to be the sort of person who can, would you?
Whew. Frankly, after hearing her say she was down to 80-something pounds, that she'd been sick and in the hospital, and that she left the hospital against her doctor's and the hospital's wishes, I got physically ill thinking I was going to have to get sucked into that stuff again.
What do you call it when someone talks about how sick they are, how they are losing weight, have a fever and a rash, were in the hospital but left against advisement and then get mad when you act concerned about them? I mean, why not just lie and say everything is ok???
Sure; and nobody, least of all you, is disputing that right. You merely sent them a sit. rep. on where her bad decisions are leading her. And I think you should feel free to continue to do that; so that in the fullness of time, when she is in a situation so serious that they will have to intervene, they won't be able to claim they had no idea it was coming.
Do you think your mother might have been drinking when she was pregnant with BB? Fetal alcohol syndrome and her anxieties about his paternity would go a long way to explaining both his personality and her huge burden of guilt about him. And about you and GB too. Poor lady; if that's even partly so then I would truly pity her. But it's nothing you can remedy. And absolutely none of your doing.
My aunt adopted two boys (ectopic pregnancy in c. 1950 ruled out babies of her own). The younger one came good, more or less (a few hiccups, shall we say). The older - the boys weren't related to each other - was a gross, stupid creature; but she continued to love and help him right up until he died a very few years before she did. He stole from her, raged at her, married a woman whom he knew was pregnant by another man, emigrated (at her expense), divorced - leaving his wife and now three children behind -repatriated (at her expense), remarried, on it went. His whole life was a sixty five year long nightmare for her. And she was still heartbroken when he died. I don't think she saw him with the same eyes as the rest of the world. Or maybe a child you feel guilty about is a hundred times more compelling than one you're proud of.
Fact is, your mother is on her own when it comes to her own care, and APS should view her accordingly. If they still don't have any concerns then fine, but if that unconcern relies on BB's taking responsibility for her welfare then their assessment is based on false premises.
And what about the prescription meds, eh?
Well. They've been told.
The wedding was perfect! Very small: Just the two of us, the officiant, good brother and my best friend. Lovely ceremony and a fabulous dinner afterwards.
Married life is good. It still freaks me out when the phrase "my husband" pops out of my mouth, as in "My husband will be there to pick up the rental car this afternoon."
He's a good man, and I'm very lucky! And so is he. LOL!