I'm late to reading this, Kaarin, but I must, must, MUST tell you that you did NOT almost kill your mother -- she did that all on her own. I understand that it's hard to be 100% certain about what any of us would want in this kind of situation (we don't know what we don't know), but to sign life-changing instructions you decide later you didn't really mean and then burden your child with that knowledge? That is completely on her. I feel so badly you have been living with this for years. Short of developing extraordinary mind-reading skills, we do the best we can for those we love when they can't express their wishes themselves -- and those instructions don't get any clearer than a medical directive.
This is such a powerful essay. It’s a topic we late-middle-agers don’t think about-that many of us will likely have to make life & death decisions for our parents, spouses, loved ones. And that we need to make our own wishes clear in order to make that decision easier for our loved ones when it’s our turn.
I was still thinking of this post while in the shower this morning (Always the sign of good writing, I can't stop thinking about it.) and think, maybe, you actually saved your mother. If you had listened to your sister and left your mother hooked up to machines, maybe she wouldn't have woken up.
The phrase “healthcare surrogate” sounds so tidy until you’re the one sitting in an ICU, trying not to break apart.This whole piece is a gut punch wrapped in love and impossible choices, Kaarin.
Thank you for sharing this with us, Kaarin. I hear you. While the near-death experience may've been your mother's 'wake-up call', it's so sad that she couldn't contextualise the change in her decision as being 'now, in hindsight.', to you and instead contradict the actions you took in that situation - per her wishes. I really feel for you. I don't know how old you were but that's a lot to put on a child, even in adulthood.
My mother and I cared for my Dad (who had a litany of health issues e.g. heart failure, bladder cancer, Rheumatoid arthritis) and he was deemed 'palliative' in 2016, 4 years before he passed. The last year of his life was particularly excruciating, to call or not call paramedics, what specific actions could I do or not and when.
You did exactly what was asked of you. No one can turn back the clock. It's a wise decision to abdicate the Healthcare Surrogate role. Hugs!
It sounds like you know the journey exactly. Our healthcare system does not make things easy for either the patient or the caregiver. Victoria, I appreciate your wise insight from someone who has obviously walked in similar shoes. I'm sending hugs back to you.
Thanks for sharing this. It was sobering in a few ways. Namely, in my own memory of the events: as I remember it--I was relatively young at the time--the neighbors gave Farmor the Heimlich maneuver and she was mostly fine, but spent a few days in the hospital to recover. In reality, it was much worse and clearly quite an impactful event in your life. I'm sorry I never realized this. The ordeal must have been traumatic for you and the siblings.
For what it's worth, I'm proud of your bravery and resolve in deciding to terminate life support. That must have been really tough to do in the face of strident objections from within the tribe. At the end of the day, Farmor was crystal clear about her wishes. If we are to take advanced directives seriously, we need to follow through with these wishes. It honors our loved ones and advances their free will to choose. You showed heart by putting her wishes before yours and those of your siblings. Your choice honored her well.
OTOH, while Farmor's after-the-fact change of heart doesn't nullify the virtue of your decision, it sure does complicate our feelings about the whole thing, doesn't it?! Less about the call you made, and more about the fact that she had that change of heart. Perhaps that is the flaw with advanced directives: we think we know what we want, but, ultimately, we're only human.
Wow, what a story! You did what you thought was right at the time — really, what you KNEW was right, based on what your mother had written down. It's such a tough place to be in, but how could you know she'd feel different about it when the time came? Have you read Being Mortal, by Atul Gawande? It's an excellent look at these types of situations. But I don't know how much it would help when someone has an unexpected change of heart like your mother did.
I'm late to reading this, Kaarin, but I must, must, MUST tell you that you did NOT almost kill your mother -- she did that all on her own. I understand that it's hard to be 100% certain about what any of us would want in this kind of situation (we don't know what we don't know), but to sign life-changing instructions you decide later you didn't really mean and then burden your child with that knowledge? That is completely on her. I feel so badly you have been living with this for years. Short of developing extraordinary mind-reading skills, we do the best we can for those we love when they can't express their wishes themselves -- and those instructions don't get any clearer than a medical directive.
This is such a powerful essay. It’s a topic we late-middle-agers don’t think about-that many of us will likely have to make life & death decisions for our parents, spouses, loved ones. And that we need to make our own wishes clear in order to make that decision easier for our loved ones when it’s our turn.
It’s a really heavy burden to give someone, so clarity is such a gift.
I was still thinking of this post while in the shower this morning (Always the sign of good writing, I can't stop thinking about it.) and think, maybe, you actually saved your mother. If you had listened to your sister and left your mother hooked up to machines, maybe she wouldn't have woken up.
Wow. The mysteries of life are so immense.
I love the last line!
Thank you!
You are amazing, Kaarin, so hard yet so essential to share! ♥️
Thank you, Sally!
The phrase “healthcare surrogate” sounds so tidy until you’re the one sitting in an ICU, trying not to break apart.This whole piece is a gut punch wrapped in love and impossible choices, Kaarin.
You got it exactly right, Lou. Reality trumps the theoretical every time. Thank you so much for reading....
You didn't do anything wrong, you did exactly what she wanted 'at the time'
It's true. We make the best decisions we can given what we know...thank you for the compassion.
Thank you for sharing this with us, Kaarin. I hear you. While the near-death experience may've been your mother's 'wake-up call', it's so sad that she couldn't contextualise the change in her decision as being 'now, in hindsight.', to you and instead contradict the actions you took in that situation - per her wishes. I really feel for you. I don't know how old you were but that's a lot to put on a child, even in adulthood.
My mother and I cared for my Dad (who had a litany of health issues e.g. heart failure, bladder cancer, Rheumatoid arthritis) and he was deemed 'palliative' in 2016, 4 years before he passed. The last year of his life was particularly excruciating, to call or not call paramedics, what specific actions could I do or not and when.
You did exactly what was asked of you. No one can turn back the clock. It's a wise decision to abdicate the Healthcare Surrogate role. Hugs!
It sounds like you know the journey exactly. Our healthcare system does not make things easy for either the patient or the caregiver. Victoria, I appreciate your wise insight from someone who has obviously walked in similar shoes. I'm sending hugs back to you.
Thanks for sharing this. It was sobering in a few ways. Namely, in my own memory of the events: as I remember it--I was relatively young at the time--the neighbors gave Farmor the Heimlich maneuver and she was mostly fine, but spent a few days in the hospital to recover. In reality, it was much worse and clearly quite an impactful event in your life. I'm sorry I never realized this. The ordeal must have been traumatic for you and the siblings.
For what it's worth, I'm proud of your bravery and resolve in deciding to terminate life support. That must have been really tough to do in the face of strident objections from within the tribe. At the end of the day, Farmor was crystal clear about her wishes. If we are to take advanced directives seriously, we need to follow through with these wishes. It honors our loved ones and advances their free will to choose. You showed heart by putting her wishes before yours and those of your siblings. Your choice honored her well.
OTOH, while Farmor's after-the-fact change of heart doesn't nullify the virtue of your decision, it sure does complicate our feelings about the whole thing, doesn't it?! Less about the call you made, and more about the fact that she had that change of heart. Perhaps that is the flaw with advanced directives: we think we know what we want, but, ultimately, we're only human.
Wow. Yes. You got it exactly right (except the part about being mostly fine -- she spent 6 weeks in the ICU).
Wow, what a story! You did what you thought was right at the time — really, what you KNEW was right, based on what your mother had written down. It's such a tough place to be in, but how could you know she'd feel different about it when the time came? Have you read Being Mortal, by Atul Gawande? It's an excellent look at these types of situations. But I don't know how much it would help when someone has an unexpected change of heart like your mother did.
Thank you, Rosana. Being Mortal is my list...you just helped bump it up to the top.