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 read back posts but my comment is relevant for anyone going through this.
We can not allow our parents, no matter how much we love, them to take our mental, physical, psychological, and spiritual health from us.
Please keep us posted on how you're doing. Don't let your mom ruin your lives!
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.
"She refuses to allow a third party come in and sit with her."
Why do we continue to cater to our parents every whim? Enough!
Hire someone immediately to look after her so you can get on with your life!
She'll whine and complain...let her! This is killing you and your brother!
And to be honest...she doesn't care.
Let that guide your decision!
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.
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.
See All Answers