“Grey November. I’ve been down since July.” (of course I start with a Taylor Swift Lyric because she genuinely has a lyric for every situation).
Seriously.
When Kathie went back to the hospital after 2 ½ weeks at home alone last July we realized it was probably time to start working with a health care broker to investigate options and tour facilities and figure out what she could afford, etc. Our belief at the time was that “we’ll do all this work and just stash it in our back pocket and when we need it we’ll have it.” HA.
As we started touring we saw very quickly the differences between places, the living space setups and the way they accommodated smoking. (EX: downstairs through the maintenance hallway into the loading dock vs 25 feet from the front door.) We found the right spot. We gave them a down payment. We had a 30 day period to sign the lease. It’s a GREAT spot. So close to us. We were so proud of ourselves.
But she refused. She was viciously mean when we sat down to talk to her about all the pros and cons. Days later she agreed to tour it, but definitely did not bring her open mind. “You mean you expect me to live in this tiny space?? Where will I put all my things? I need 3000 square feet. I need 3000 square feet. I need 3000 square feet.”
We were at the wire. Her medicare coverage for TCU was ending for the year and the longer she stayed private pay at that nasty TCU the less time she could private pay at her next place. She insisted on just going home. She demanded, in fact, to go home. And as we sat there in that care conference and we asked her every question about how she would deal with x, y, and z… and she had super snotty sarcastic answers for everything (like a 14 year old girl) but she had answers. She disregarded what her doctor said. And her nurses. And the Social Worker. And OT. And PT. And Me. She said she would accept in home care, and OT and PT (even though every other time she has said this it was a lie.) But fine. Best of luck. Good Bye. I’m done.
And less than 24 hours after she got home (on a Saturday) she called in tears. She needs to go back. She is packed. She doesn’t have any food. She needs… she needs… she needs…she “doesn’t know what’s going on”….so Steve and I went over and did everything she said she could do herself. (groceries, picked up meds, filled pill safe, bought her an outfit that would fit her after her extreme weight loss” And by Monday she was just fine was just existing as normal. She even accepted several in home care appointments. Shocker.
And then a week later (on a Saturday) she called us in tears. She needs to go back. She doesn’t have any food. She needs… she needs… she needs… Steve and I went over and did everything she said she could do herself. And by Monday she had no memory of that and was just existing as normal. Except now she was no longer accepting in home care appointments.
And a week later she called us in tears. She was in so much pain. Her stomach hurst so much. So we hung at the ER all day… only to find out she hadn’t been taking the 1 prescription not in her pill safe (because she had to take it before meals) and it was re-prescribed. Great.
And then a week after that she set the kitchen on fire. And with the full support of the police and the EMT’s and the fire department we got her to the hospital to check for smoke inhalation. (Yes. I know what you’re thinking and I did ask the fire marshall. “Exactly how much smoke does a 2 pack a day smoker for 67 years need to inhale in order for it to show further damage??” (he didn’t know).) When we got to the ER she put on her outside voice and smiled real pretty and said in that sing song voice of hers that I hate that “she was fine” and “no pain anywhere no!”. So my very efficient side eye was activated and I got the doctor the rundown in the hallway and he and the nurse got on the phone immediately with Dakota County Adult Protection (because of course it was 4:40pm on a Friday) and ultimately the phone call I got was “no guardianship has been filed” and “the county worker’s notes are not conclusive” and “we have no reason to hold her”. I went back to her room and she raged at me telling me “I had no fucking right to keep her there and she was going to call a cab and get the fuck home.” I told her to do what she fucking wanted but she wasn’t talking to me that way anymore. (And I also told the nurses aide that she could leave because she also didn’t need to be talked to like that and I guided her out of the room like the bossy frog I am.) Clearly after that I did what any sane person would do and went to the cafeteria to get some food, ignored her, and called my Mom in tears. And then while I waited for my Mom to come sit with me (honestly what else could she do) I saw Kathie wandering in the ER waiting room aimlessly asking anyone who would listen to her how she could get home. Naturally, I hid. I thought perhaps they will figure out who this woman is and make her stay until test results come back. Nope. Instead they called the police who called Steve who called me to go “pick her up” because “she was discharged”. I saw her sitting there with the police. I walked up to her and said “hey Kathie, what happened to you taking a cab home?” And she started to cry about not having any money UNTIL I said “you remember my mom, right?” at which point she immediately stopped crying. We drove her home. I told her we were leaving town. The windows needed to stay open at least overnight to air out the smoke smell. She immediately went upstairs to close them. And when I went up there she was crying to me “boo hoo” and when she went down to see my Mom she was fine again. I told her we were leaving town. She would need to figure out a way to get groceries. “I’ve got it all handled.” She said. Fine. Bye. The crying on demand. The lack of remorse over the fire. The hospital rage. The condescending poo poo I’ve got it dear… Feels so familiar. Feels like she is manipulating me. Feels like she will do or say whatever she feels will get me to do what she needs.
We were gone for a week and when we got back we discovered no food in the house. And we dropped in on the camera we learned she hired someone to “fix” the kitchen. And they changed the locks because she “didn’t want us getting in the house.” So TO BE CLEAR. The emergency entry into the home by way of the lockbox was taken away. Our way to get in to help her was taken away. And she had hired some strange person we’ve never met to DO WORK on a house we own. Even though Steve is an actual general contractor and the biggest perfectionist you’ve ever met. So I ask again. Is she in control and manipulating the situation or is she in trouble?
The awesome assisted living place we had money down on called us to share that she “wasn’t a candidate for assisted living”. They would not accept her. She could not move there. They recommend memory care. They have no memory care openings. So just when I thought getting her moved to AL was the biggest obstacle it turns out that isn’t an option. Memory care. Locked down. Significantly more expensive. Her savings will not last as long. EW kicking in earlier would need to be essential. Noone has space. Keep looking. Keep looking.
And in the middle of that we sued her for emergency guardianship.
While we did witness (by way of the security camera) her crying and sobbing about not knowing how to even find a lawyer.. blah blah… in the end she did not contest it. And the court hearing lasted less than 1 minute and we were granted emergency guardianship and conservatorship with the ability to establish her place of abode. And we felt like we won. The relief of knowing she was not contesting and we did not need to go into an evidentiary hearing and justify everything and create the clear behavioral chronology and everything just felt like a free pass.
But we had nowhere to move her to. A 2nd opinion from a different nurse at a different assisted living facility under a different management company also rejected her for the same reasons.
Stuck.
And then twice in the following week we got the call that “the TV doesn’t work and I need a new one” even though THIS IS THE NEW ONE and the problem is not actually that is doesn’t work, its just that the random man who came over fucked up the inputs so it doesn’t immediately open to the super simplified JUBILEE TV home screen so she can get lost in the smart TV menu BUT MORE IMPORTANTLY she is complaintig that since she doesn’t get a paper she doesn’t know what programs are on. And she is welcome to figure out how to get herself a Sunday paper at any time but we all know she is launching a problem at me she expects me to solve and I am 100% not doing that. So then what follows is me navigating to the guide and going to all her favorite channels and telling her what is on and then listening to her say “no” “no” “no”. So… TV works fine, she just doesn’t know what she wants to watch but she thinks me sitting there by her offering up all the shows on a silver platter is the best idea. And spoiler alert. It absolutely 100% is not.
The 2nd time this special bit of TV hell arrived was 2 days ago. But as a special bonus it was bundled with “I need groceries”. (AND OMG SHE BOUGHT A PIZZA EVEN THOUGH SHE DOESN’T HAVE A STOVE). She acted as if she had NEVER been to that Cub before. Had no idea what city we were in. “What! There is a Bachmans here??” and “ooh! A Walmart” on and on. And when we finally got home ($300 in groceries later that we will totally throw out when they go bad) she immediately had to smoke while she watched us carry everything in and put it all away and it is so hard not to feel used during all of that. BUT THEN.. she walked back into the kitchen and put on that sugary sweet stupid fake voice and said “Oh, Melissa.. I’d love to treat you to a manicure! You’ve just been helping me with so much….blah blah blah” False. Fuck off. YOU need a manicure and I didn’t offer to take a day off to drive you to NEW PRAGUE again so you decided to regroup and pretend you were doing me a favor so AGAIN I ASK YOU… are you using me and faking the memory issue or is this real?? It broke me. That was the final thing. My patience is gone. My tolerance is gone. I hate everything and everyone and I will literally fight anyone about anything.
But I still need to find her a place to live. Today Steve and I went to tour 1 of the 3 memory care options we have. And it came to a hard stop when we realized smoking there isn’t an option. In fact, we learned (with horror) you’d be hard pressed to find a memory care facility that will allow smoking. EVEN if we find one with an opening. EVEN if we find one that is priced so she can do private pay for up to 18 months and EVEN if after that time they will accept Elderly Waiver. And just like that. I shut down completely.
It seems I have somehow been pushed into the gap in the system that allows me (and Steve) to have the legal ability to move her anywhere we want BUT… because SHE doesn’t want to move and because SHE refuses to entertain smoking cessation … anywhere we find for her will immediately reject her. Because there is too much risk to accept a flight risk into AL and there is no conceivable way to support a 2 pack a day habit inside a memory facility. Or even a 1 pack a day habit. So honestly. Why did we even bother? No matter what we do she still holds all the cards. She still has the power. Except NOW we have the additional legal burden of keeping her safe and accounting for literally everything she owns and justifying any decision we make with regarding her finances. And we paid thousands for the privilege of that burden.