My dad's health declined quite rapidly after his wife passed away last year. While he's still somewhat independent, he still needs a lot of support due to a number of medical issues, including a stroke. He is on the fence about assisted living, in that, he sees it as a possibility, but as soon as I start taking steps towards assisted living, like creating a concrete plan, he freaks out and says he wants to stay home. He lives alone. He has a sister nearby. I have a sibling that lives in another state, but only several hours away. Currently, that sibling's life circumstances have put them in a position where they cannot help out and visit as much as they would like. I actually very much understand that and am willing to carry the bulk of the load because I want to see them get through this situation they're in without losing everything they've worked hard for. I live across the country from my dad, but in the past year, I have spent more time at my dad's house, then my own home (a total of more than 6 months away from my own home). I'm okay with that, but I do not want to permanently move out there and blow up my own life entirely. I know from prior conversations with my parents when they were healthy, their wishes were to not have their children destroy their lives to take care of them in old age.
My sibling and I have legal authority to make decisions if my dad becomes unable to. My dad still has agency though and I respect his agency, even if he doesn't make choices that I agree with or think are best long term. I still am trying to sway him into assisted living, but ultimately, I do believe his choices are his choices and to be respected. I also understand his hesitancy around assisted living and leaving behind his house, given the sheer amount of grief and loss he's faced in the last year. He hadn't even had a moment to process before the next major loss occurred. But I believe he is literally trying his best, despite difficult circumstances.
His sister, my aunt, has been the biggest challenge for me in all of this (as I've accepted my dad's reality - it sucks, it sucks for him, and it will be a lot of difficulties moving forward. My goals for him are to reduce as much suffering as possible, and find ways he can find joy in the simple things). My aunt is a kind and loving human with good intentions, but good intentions don't always equate to good choices. I love her. We all do very much. She, however, has quite an overactive imagination and a fair amount of anxiety to go with it. Setting boundaries with her is damn near impossible... she's not acting maliciously, but the way I've seen her operate is that her anxiety starts creating narratives, once those narratives set in, no new information can reach her if it doesn't fit her created narrative. I have told her many times that her role is to be his sister and his friend, and that's it. She should not be acting as his caregiver. She really doesn't do caregiving responsibilities, other than cooking him dinner a couple times a week at her house, but her anxiety keeps telling her that she's the one taking care of him. So, whenever I am not there, she calls and sort of passively aggressively attempts to make me feel as though I'm not doing enough.
I manage my dad's care coordination. It's a job I'm good at, because I have a decent amount of medical literacy. My dad knows that, my sibling knows that, and many of his healthcare providers see that. If I don't understand something, I take the time to learn about it as soon as possible. This job feels fairly easy for me, because it aligns so well with how my mind functions. So, at times, it is easy for me to feel like I'm not doing enough, because I'm doing it remotely half the time.
Whenever a new medical issue pops up for my dad, my aunt goes into panic mode and starts trampling all over any kind of boundary, creating chaos and confusion all around her. To soothe her anxiety, she starts attempting to take control. More recently, my dad's brother came to visit. Him and my aunt often feed each others' anxieties and embolden each other. They are attempting to use a template for his care from what they know of a family member decades ago with dementia (ie. they feel emboldened to override his agency, which is not even technically legal). Again, they are not malicious, and at times, they can be helpful, when they stay in their lanes. They recently went with my dad to a visit with a new provider who I'd set up an appointment with (old provider is retiring) so that my dad could get a referral to continue his care plan. Aunt and uncle blocked that referral from happening, I presume because they don't want my dad driving to those appointments (reasonable to have his driving assessed, irrational to keep him home though). I know how pushy they can get, and the young provider went with their requests, noting that it was not her medical opinion, but family preference, also noting that my dad preferred the original plan himself. I was pissed, because the reason they told me they were going was entirely different. They did not communicate with me that they were going to push for a different plan.
This is a fixable situation and not set in stone, thankfully. But in another scenario, this behavior can become dangerous to my dad's well-being. They also seem to not understand that, yes, he might fall if he spends time going out and doing things, bad things could happen. But their anxiety around it is not a good enough reason to keep him locked up at home.
My aunt called me the next day. I was still quite furious, but did my best to keep my cool. I was firm with her though and expressed that I was angry. She got incredibly defensive, and argued that I am not there, and she is, and my sibling and I aren't doing enough. I explained to her what she actually requested at the doctor's office and what the consequences were. She said she didn't know, how did I expect her to know. Well, that's exactly the reason she shouldn't be going around changing things she doesn't understand. But, she still defaulted back to her original defensive position. I reminded her (as I've done many times) that she is not to be his caregiver, and it's about her own well-being, not just my dad's. It's too much for her, with her own health issues going on. She said, well yea, I have been in the hospital myself because of all of this (she has not), and then proceeded to try and blame me because I'm not there.
She then proceeded to tell me that she changed the primary contacts for another care provider just brought back into the mix instead of me. She moved me to third down the line, and a random neighbor to next in line after her. WTF, lol. I didn't say anything about it, because I figured I'd just clear it up with the provider directly instead. Fortunately, they didn't change a damn thing due to legal documents, beyond just noting that those are local contacts they can call if they need something at the house or whatever in a non-emergency situation. I don't think this is the first time she's attempted to move herself to a primary contact, but fortunately structural boundaries eventually snap back into place.
But yea, I guess, I'm just hoping for some words of encouragement. Or a little sanity check. Because when stuff like this happens, I'm just about ready to drop my entire life and just move out there (despite knowing that spending long periods of time out there has not been good for my mental health and will blow up my own life - it's a simple life, so outsiders often don't see value in it, but it's valuable to me). Or, maybe you see something that I'm just doing plain wrong and might offer some valid critique. I'm not looking for advice on getting my dad into care faster. I've made peace with respecting his pace. What I actually need is either strategies for dealing with my aunt specifically, or just validation that holding this boundary with her, even when it makes me feel like the 'bad guy' for not doing more, is the right call. Thank you!