I am on the horns or the thorny path of a major dilemma. Honoring someone’s wishes to determine their own end (autonomy) vs. knowing their ability to make a decision and stick with it are very impaired. My Aunt’s “capacity” is what’s under discussion. According to the law, “capacity” is broadly defined as:
Add into this conversation the difference between child protective services, and adult protective services, and #3 on the slide below is the “gotcha” button for me:
(I think there’s a typo on the 2nd point – I think the word is “make” vs. “take”, as in, “Autonomy to MAKE decisions independently of those who have responsibility for them.”).
At any rate, given my feelings about euthanasia – and this belief is applicable to the Aunt in question as she’s a huge Kevorkian fan – I am really torn when I have to sit by the sidelines and allow self-neglect (which I believe is seen as a form of self-abuse or “harmful” behaviors in many with mental health issues) vs. her self-professed wish to end it all, endorsement of euthanasia, and multiple (and unsuccessful) suicide attempts.
Plus, we have the drama queen quotient which kicks in with someone who has been diagnosed with COPD, with frontotemporal lobe damage, and narcissistic personality disorder. She stays in bed 24×7, surrounded by piles of bills, mail, newspapers, animals, and expects to hold court whenever I show up to see how she’s doing. I’m lucky to get her out of bed once a day, for maybe 3-4 hours when I’m in town, and I know I can’t keep her here if she doesn’t want to stay in this world. The boundary issues are driving me crazy, though…
When I was last there in February, the urine and poop from the animals was overwhelming. She can’t smell it. Seems not to see it (although it is cleaned up regularly). And, like Sharon Osborne, thinks that it’s an eccentric peccadillo which counts for nothing because she’s living in a mini-manion in a gated community, and the ability to pay someone else to clean it up a couple of times a week negates her need to house-train her animals or keep the place clean.
So, I’m writing this blog today to purge myself of my inactivity / guilt / powerlessness (whatever is going on in my own tiny brain) which arises from simply getting the drama queen voice on the phone. Example:
– phone gets picked up and dropped a few times
– once she’s on the phone, her voice is thready and swampy
– she cannot maintain the act, though. At the 15th minute in the call, she sounds normal.
– Result = Drama Queen perception.
So, I go from one extreme to another listening to this play acting, for trying to determine what’s needed, if anything is needed, and evaluating whether or not it would do any good to act given her autonomy and her underlying health issues.
Today’s Backstory: My Auntie fell yesterday while out shopping with her helper. Black eye. Broken wrist. Broken shoulder (all on her right side, her dominant hand). She was with a paid helper, and instead of taking her to the hospital emergency room, the helper was told to take her to “Urgent Care” – which is not able to address the issues in any kind of credible fashion – and then allowed to refuse care to go home. Seriously ? ? ?
I get on the phone this evening for a simple, “Hi, how are you, don’t forget the CNN GOP Town Hall” (because of her memory issues, and her love of politics, it’s an easy excuse for a quick call that spirals out of control). I am immediately plummeted into the latest act of a play that has no sort of ending of any kind, never mind a happy ending. And, it’s an endless play which love / duty / family obligations compels me to keep on watching.
Following up to yesterday’s real drama, Auntie is now trying to find an orthopedic surgeon to address her taped up injuries, and has no understanding that she’s created a nightmare of insurance workarounds for herself because she opted to bypass the emergency room.
Auntie doesn’t understand that her arm and wrist may need to be rebroken in order to get them to heal.
AND, the outsourced “healthcare agency” who provided the helper is being negligent in its (presumed) duty to insist that she get proper care. All because she’s the patient, calls the shots, and is ultimately responsible for paying the bill. While I would hope that they would contact social services for an adult protective services look-see, just from a liability viewpoint, I know that they won’t do that so long as they are getting paid.
Arghhhhhhhh ! ! !
Theoretically, esoterically, I know that whatever will happen is beyond my control. That doesn’t change my frustration nor does it make it any easier to accept her self-neglect. Especially when one knows that she is not thinking clearly, consistently, and access to money is allowing her to continue with the self-neglect.
I’m all for autonomy. I’m all for voluntary euthanasia. It’s the involuntary euthanasia that I struggle with, as I see her needless suffering and related drama, and my hands are tied. Her choices are not my own. Her pain and suffering, no matter how much I love her and want what I believe is best for her, is not my own.
So, boundaries. I’m sitting here trying to manage the boundaries and stay out of the day-to-day drama while hoping that she gets the medical care she needs. And, thankful that she ran away so that she’s no longer in my direct care for facing charges of abuse or neglect for failing to ensure that she gets the proper and necessary medical care.
Update: May 15th or so.
Auntie has fallen again, re-breaking the hand and again lacerating her brow, because she insisted on taking the garbage out to the curb. Herself. Despite the fact that she has daily caregivers in to assist her with anything needing attention. I am still on the “no travel” ban until further agreement with the doctor vs. the lawyer, so it’s a wait-and-see game for me, too.
Getting frail is not for wimps !