To Be or Not To Be…
Such a heavy question. And no I’m not waxing philosophical about Shakespeare now that the school year has begun. I’ve gone back and forth on whether or not to write this one out because for the first time ever, I’m not raging about it. I’m just genuinely, hopelessly, at a total and complete loss. I don’t know how much I’m supposed to care anymore. It’s exhausting. And it is taking up way more mental space than I have any more.
K is currently in transitional care. This is the 4 time in 2 years, but the 3rd time since last November. Except for the time she tripped and fell and broke her arm and her wrist and her ribs (because she wouldn’t use her walker) each TCU visit has been because one of us discovered her completely and totally out of touch with reality. Maybe slightly unconscious, maybe just moaning and staring into space, maybe in a weird trance like state where she knew who I was but had zero short term memory and deferred 100% of all care questions directly to me. I was told “delirium” is the term. (Not totally disconnected from reality. But whatever.) Anyway.. yes. One time it was a UTI, one time the delirium was thought to be “because she was in the hospital and this happens” and one time we thought she was over or under medicated, and yes we checked her sodium and her bloodwork and no she didn’t have a stroke. (People love to immediately diagnose her so I thought I’d throw that out there).
In January we bought her a pill safe and I started doing her meds. She had a few good months before the fall. We were confident. Then she fell and was in the hospital and had surgery went to TCU because she genuinely couldn’t use her right arm for anything. When it was time for her to go home I did all the things. All prescriptions filled, pill safe loaded and tested, TV confirmed working, air conditioning turned up, house cleaned (that was Steve), groceries purchased, K picked up at TCU and delivered home. We got there and she didn’t remember how to open the garage. We got her settled and she didn’t remember what channels she likes to watch. And then I was called nearly every day with a TV issue, or a TV volume issue, and I made myself available for all of it because it was clear she needed it and we were committed to keeping her at home as long as possible. Also, I was fine driving her because there was no way she could drive.
But then after 2 weeks when I picked her up for her post TCU appointment with her primary doctor I discovered she was a disaster. (I spent 30 minutes negotiating her into pants.) That entire afternoon and evening in the ER she was worse than I had ever seen. She didn’t know her name. Or where she was. Or why she was there. Or if she had any pain. At one point she didn’t know how to go to the bathroom. This time was way worse. And when she was admitted she stayed worse.. but with anger (at one point yelling at me and trying to make a run for it to get out of the hospital). (side note – Kudos to Med Surg Floor 5 staff because they are AMAZING). Blah blah blah. Back to TCU and for the first time ever she is content. Happy to have all her things. Still hates the food. Making new friends. Not begging to go home. Just hanging out and living her life. But not getting better. No medical cause for this episode of delirium and although she has stabilized it is at a level far below where it was in the beginning of May.
Naturally, Steve and I started looking at assisted living. We jumped into the Elderly Waiver process and gathered her documents and got as educated as possible about the ins and outs and nits and nats of that phase of life. We discovered that every single time she was released from transitional care the recommendation had been assisted living. We learned that reports had been filed with the county about her living alone when she shouldn’t be . (Yes I was at ALL those care conferences and no that was never ever brought up).
Last wee-k we brought the 4 folders from AL buildings to her so we could start thinking about a long term plan. Steve was so amazing. He framed up everything to let her know that we were looking to disrupt her the least. We know what is important to her so that’s why we picked this place as the best option. She shut down. She was furious. And in her fury said something so vile to Steve that I will not repeat it but he definitely left the room and is in no hurry to go back.
Which leaves me.
So I was at the care conference this week. Everyone on her care team recommended assisted living. Everyone. She refused with the kind of raged filled sarcastic anger you would expect from a teenager who got her phone taken away. It was awful, actually. She yelled at me more than a few times telling me to get out of the room. Telling me to leave her alone. She doesn’t need me and she doesn’t need my help. She basically told me to fuck right off and I stayed there because it doesn’t matter what she says or does I am still the adult here. She refused in home help. She demanded her car keys back. She ultimately decided to go home AMA and I could stay the hell away from her.
Cool.
That really frees up my time.
But… like…. Really? If we give her what she wants she fails miserably. She doesn’t know how to call for a ride share. She can’t manage her meds. She can’t manage her appointments. She doesn’t even know what day it is. It’s wildly irresponsible to just let her go home. But I want her to feel the terror of failing.
It was fun pretending for a few days but that doesn’t change anything. We still have a project here. It’s true that she is an adult with free will. It’s also true that her free will refuses allowing any home health services into her home. Are we just beating our heads into the wall because for all our logic and care and wanting to do the right thing she is the exact opposite? It’s her delirium talking. Right? I asked her care team if anything has changed with her in the few days since the meeting. Nope. She is doubling down and she wants her damn keys. (watch me remove her car from her garage). The social worker said the only thing we could try would be to step in and make us her legal guardian. (like Britney Spears Dad did except K will not be doing any Vegas residencies). The social worker is cute. Of course she doesn’t know that I looked in to that years ago and in order to get that to work I need K’s signature so….
So yeah. We are putting down a deposit on the assisted living of our choice today. We’ll get on the list. I’ll remove her car from the garage and I’ll leave her a backpack of meds. I’ll use the Jubilee TV to check in on her periodically. And when she is back in the hospital (likely in October) we’ll move her.
Update: 9-14
On Friday night S went to see her and talk to her and the conversation ended with her agreeing to look at the AL apartment.
Today they went and… no bueno. She was shut down and had that stupid sarcastic smile on her face the whole time that we hate, she was rude and negative. There was no way she could live in less than 3000 square feet! Did we expect her to live there really?? WHAT ABOUT HER YELLOW COUCH? (seriously). Steve said “you’ve lived in this awful room at the Villas for 6 months in a smaller room with NONE of your things around you. I think the yellow couch that is upstairs that you never sit on is the least of your concern” She doubled down on just wanting to go home and saying she doesn’t need us. So we had a few days of hope and now we’re here again. Exactly where we started.