The Friend
May 11, 2015 4:57 PM Subscribe
Wow. Thank you for posting this. This gets Esquire my money.
posted by warriorqueen at 5:28 PM on May 11, 2015 [1 favorite]
posted by warriorqueen at 5:28 PM on May 11, 2015 [1 favorite]
I'd say something about a piece of dust in my eye but .... nope. Just outright bawling over here. Thanks, though.
posted by Dashy at 5:30 PM on May 11, 2015
posted by Dashy at 5:30 PM on May 11, 2015
This really is a strong case for euthanasia. I would never want to subject my family to a long protracted and messy death.
posted by wuwei at 5:35 PM on May 11, 2015 [64 favorites]
posted by wuwei at 5:35 PM on May 11, 2015 [64 favorites]
I wish there were some way to say it more directly, more strongly, more emphatically...
Fuck Cancer.
posted by BigHeartedGuy at 5:37 PM on May 11, 2015 [5 favorites]
Fuck Cancer.
posted by BigHeartedGuy at 5:37 PM on May 11, 2015 [5 favorites]
What a wonderful man.
If I get a diagnosis like that, I'm moving the hell to Oregon.
posted by Countess Elena at 5:49 PM on May 11, 2015 [13 favorites]
If I get a diagnosis like that, I'm moving the hell to Oregon.
posted by Countess Elena at 5:49 PM on May 11, 2015 [13 favorites]
Molly told me that, for the first time in as long as she could remember, she didn't dread hearing me call from the foot of the stairs, because she knew I had no more bad news to deliver.Just, just no.
posted by fullerine at 5:51 PM on May 11, 2015 [5 favorites]
Yeah, I saw all that when I was 7. Faster and perhaps not quite so bad. But, bad enough. It's painful to think of the kids in this piece.
posted by thelonius at 5:52 PM on May 11, 2015 [2 favorites]
posted by thelonius at 5:52 PM on May 11, 2015 [2 favorites]
Don't kid yourself, Countess Elena. One of many, many personal reasons I have added to our list of reasons to move to Oregon is their death with dignity law. I've been actively horrified by some of the laws here in Ohio ever since I heard it was REQUIRED to Schiavo me if I was even ONE day pregnant. Why we allow our pets better treatment than our human loved ones is beyond me.
posted by bitter-girl.com at 5:55 PM on May 11, 2015 [2 favorites]
posted by bitter-girl.com at 5:55 PM on May 11, 2015 [2 favorites]
I know I have at least one friend who would do this for me or for my husband. Maybe two. I am unbelievably blessed, and I would do the same for those friends. Without question.
posted by cooker girl at 5:58 PM on May 11, 2015 [6 favorites]
posted by cooker girl at 5:58 PM on May 11, 2015 [6 favorites]
My god. That was horrific. Dane certainly earned his sainthood. Would that we all had friends like that.
posted by siberian khatru at 6:07 PM on May 11, 2015 [1 favorite]
posted by siberian khatru at 6:07 PM on May 11, 2015 [1 favorite]
Ok, he lost me when he started spying on naked college women. Really, dude? Wrong on several levels.
posted by MexicanYenta at 6:20 PM on May 11, 2015
posted by MexicanYenta at 6:20 PM on May 11, 2015
Ok, he lost me when he started spying on naked college women. Really, dude? Wrong on several levels.
That was actually one of the most powerful parts, to me. At some point, when you're dealing with a loved one's terminal illness, you go down the rabbit hole. And to have these young women, who he wishes "would never age or fall ill or die" jumping into this waterfall in front of him, with his friend who had given up his whole life to help them... sometimes you have to just have that moment.
posted by roomthreeseventeen at 6:24 PM on May 11, 2015 [66 favorites]
That was actually one of the most powerful parts, to me. At some point, when you're dealing with a loved one's terminal illness, you go down the rabbit hole. And to have these young women, who he wishes "would never age or fall ill or die" jumping into this waterfall in front of him, with his friend who had given up his whole life to help them... sometimes you have to just have that moment.
posted by roomthreeseventeen at 6:24 PM on May 11, 2015 [66 favorites]
Ok, he lost me when he started spying on naked college women. Really, dude? Wrong on several levels.
When you skinny dip on a public hiking trail you can't really expect privacy. And if you kept reading you would have read that Dane spoke to them and joined in.
posted by srboisvert at 6:38 PM on May 11, 2015 [40 favorites]
When you skinny dip on a public hiking trail you can't really expect privacy. And if you kept reading you would have read that Dane spoke to them and joined in.
posted by srboisvert at 6:38 PM on May 11, 2015 [40 favorites]
Fuck cancer, and fuck our "culture of life" that privileges years of torment over a sure, silent end to our lives.
posted by chimaera at 6:48 PM on May 11, 2015 [3 favorites]
posted by chimaera at 6:48 PM on May 11, 2015 [3 favorites]
Ok, he lost me when he started spying on naked college women. Really, dude? Wrong on several levels.
It's not spying if they know you're there. And as someone who has been naked in many creeks, rivers, waterfalls, hot springs and lakes, it's not a thing you do if you're going to be freaked out by other people seeing you.
posted by oneirodynia at 6:48 PM on May 11, 2015 [20 favorites]
It's not spying if they know you're there. And as someone who has been naked in many creeks, rivers, waterfalls, hot springs and lakes, it's not a thing you do if you're going to be freaked out by other people seeing you.
posted by oneirodynia at 6:48 PM on May 11, 2015 [20 favorites]
Am I the only one who read this and at a certain point asked: "Why? Why did you do this to your wife? Why did your wife do this to you?"
It's just a story, of course. It's not reality. I'm not there, and I can't judge. But that's my gut reaction.
Very moving writing, though, and absolutely worth sharing.
posted by billjings at 6:52 PM on May 11, 2015 [6 favorites]
It's just a story, of course. It's not reality. I'm not there, and I can't judge. But that's my gut reaction.
Very moving writing, though, and absolutely worth sharing.
posted by billjings at 6:52 PM on May 11, 2015 [6 favorites]
Finally, finally, finally I understand the need for the Blue in my life.
There is no other place I could discuss or share this incredibly powerful and painful piece without causing distress to someone in some way.
Here it's a perfectly safe and appropriate place to do so.
Thank you for my Mefipiphany.
I love this place. Thank you.
posted by taff at 7:00 PM on May 11, 2015 [20 favorites]
There is no other place I could discuss or share this incredibly powerful and painful piece without causing distress to someone in some way.
Here it's a perfectly safe and appropriate place to do so.
Thank you for my Mefipiphany.
I love this place. Thank you.
posted by taff at 7:00 PM on May 11, 2015 [20 favorites]
What a horrific death and a remarkable friendship. Such prolonged torture - I cannot see anyone benefiting from being kept alive that long - just a nightmare and what a legacy for those children to grow up with. Fuck cancer and our absurd notions of what end of life care should look like. Unspeakable.
MexicanYenta I think the point of the watching the naked women was that they were so alive and so healthy - and reveling in their own physicality - it wasn't abusive - it was a painfully human contrast to the torture they were submerged in as caregivers.
posted by leslies at 7:18 PM on May 11, 2015 [24 favorites]
MexicanYenta I think the point of the watching the naked women was that they were so alive and so healthy - and reveling in their own physicality - it wasn't abusive - it was a painfully human contrast to the torture they were submerged in as caregivers.
posted by leslies at 7:18 PM on May 11, 2015 [24 favorites]
sitting at my desk at work gritting my teeth so I won't howl and clutch my throat. to have a friendship like that....I am in awe.
posted by lemon_icing at 7:28 PM on May 11, 2015
posted by lemon_icing at 7:28 PM on May 11, 2015
Am I the only one who read this and at a certain point asked: "Why? Why did you do this to your wife? Why did your wife do this to you?"
It's just a story, of course. It's not reality. I'm not there, and I can't judge. But that's my gut reaction.
I...what the fuck are you even...yes, you're the only one who thought this.
posted by We put our faith in Blast Hardcheese at 7:30 PM on May 11, 2015 [17 favorites]
It's just a story, of course. It's not reality. I'm not there, and I can't judge. But that's my gut reaction.
I...what the fuck are you even...yes, you're the only one who thought this.
posted by We put our faith in Blast Hardcheese at 7:30 PM on May 11, 2015 [17 favorites]
Am I the only one who read this and at a certain point asked: "Why? Why did you do this to your wife? Why did your wife do this to you?"
What on earth could they have done differently? When someone you love is ill, you care for them as best you can, as long as you can--the US health system has precious few options for people in their situation. Pain and illness can make people into grotesque caricatures of the person they used to be. I can't imagine judging someone for their actions, whatever they may have been, in a situation like this.
posted by MeghanC at 7:30 PM on May 11, 2015 [14 favorites]
What on earth could they have done differently? When someone you love is ill, you care for them as best you can, as long as you can--the US health system has precious few options for people in their situation. Pain and illness can make people into grotesque caricatures of the person they used to be. I can't imagine judging someone for their actions, whatever they may have been, in a situation like this.
posted by MeghanC at 7:30 PM on May 11, 2015 [14 favorites]
This made my dad's drawn out for ten years death look like a fucking picnic. Words just can't express my horror here.
Dane must have some kind of halo over his head.
posted by jenfullmoon at 7:33 PM on May 11, 2015 [1 favorite]
Dane must have some kind of halo over his head.
posted by jenfullmoon at 7:33 PM on May 11, 2015 [1 favorite]
leslies, I get what you're saying but it didn't come across that way to me. And I somehow doubt his wife wanted him looking at naked college girls, as she laid there with her body deteriorating. It just seems extremely disrespectful and hurtful. And depending on their relationship, possibly a violation of their wedding vows.
My boyfriend is a Stage 4 cancer survivor - he's a fucking miracle, frankly, as the type of cancer he had only has a 20% survival rate when it's caught *early*. We live with the specter of it returning hanging over us every day. If it was to return and eat at his body some more, the last thing I can imagine doing would be ogling naked college guys.
posted by MexicanYenta at 7:37 PM on May 11, 2015 [2 favorites]
My boyfriend is a Stage 4 cancer survivor - he's a fucking miracle, frankly, as the type of cancer he had only has a 20% survival rate when it's caught *early*. We live with the specter of it returning hanging over us every day. If it was to return and eat at his body some more, the last thing I can imagine doing would be ogling naked college guys.
posted by MexicanYenta at 7:37 PM on May 11, 2015 [2 favorites]
I...what the fuck are you even...yes, you're the only one who thought this.
no, he wasn't. it's clear to me why a person would choose to hold on to life as long as possible, and why their partner would want the same, but i could never subject someone i love to the horrors this man encountered. i think the people discussing euthanasia above would agree, or at least agree that a person should have the option to opt out of that. don't pretend this is morally clear ground and that billjings is some bad person for wondering how worth it all of this can be.
posted by JimBennett at 7:40 PM on May 11, 2015 [24 favorites]
no, he wasn't. it's clear to me why a person would choose to hold on to life as long as possible, and why their partner would want the same, but i could never subject someone i love to the horrors this man encountered. i think the people discussing euthanasia above would agree, or at least agree that a person should have the option to opt out of that. don't pretend this is morally clear ground and that billjings is some bad person for wondering how worth it all of this can be.
posted by JimBennett at 7:40 PM on May 11, 2015 [24 favorites]
And I somehow doubt his wife wanted him looking at naked college girls, as she laid there with her body deteriorating. It just seems extremely disrespectful and hurtful. And depending on their relationship, possibly a violation of their wedding vows.
I dunno, if I'm ever dying a slow miserable death involving shit and stomach acid periodically fountaining out of a hole in my abdomen, I hope anyone taking care of me has a chance for some pleasant moments wherever they can find them.
posted by Blue Jello Elf at 7:43 PM on May 11, 2015 [59 favorites]
I dunno, if I'm ever dying a slow miserable death involving shit and stomach acid periodically fountaining out of a hole in my abdomen, I hope anyone taking care of me has a chance for some pleasant moments wherever they can find them.
posted by Blue Jello Elf at 7:43 PM on May 11, 2015 [59 favorites]
i think the people discussing euthanasia above would agree, or at least agree that a person should have the option to opt out of that. don't pretend this is morally clear ground and that billjings is some bad person for wondering how worth it all of this can be.
Dude. Nobody is saying this was some kind of awesome shit. But euthanasia IS MURDER IN MOST OF THE UNITED STATES and this guy has two small children who don't need a dead mom and a dad facing life in prison.
Billjillings isn't a bad person for wondering if it's worth it, but he's definitely not living his best life if he can frame a 34 year old woman's death from a hideous cancer as something she "did" to her husband, like on purpose, like she woke up and said "Hey you know what, I think I'm gonna be a real hellshow and just fall right the fuck apart in a bleeding, shit-filled mess instead of watching my children grow up."
I mean honestly, the people in this thread who just want to pick pick pick apart this man's experiences, thoughts, choices during something that is almost hellish beyond description...I don't wish them well, let's leave it at that.
posted by We put our faith in Blast Hardcheese at 7:45 PM on May 11, 2015 [42 favorites]
Dude. Nobody is saying this was some kind of awesome shit. But euthanasia IS MURDER IN MOST OF THE UNITED STATES and this guy has two small children who don't need a dead mom and a dad facing life in prison.
Billjillings isn't a bad person for wondering if it's worth it, but he's definitely not living his best life if he can frame a 34 year old woman's death from a hideous cancer as something she "did" to her husband, like on purpose, like she woke up and said "Hey you know what, I think I'm gonna be a real hellshow and just fall right the fuck apart in a bleeding, shit-filled mess instead of watching my children grow up."
I mean honestly, the people in this thread who just want to pick pick pick apart this man's experiences, thoughts, choices during something that is almost hellish beyond description...I don't wish them well, let's leave it at that.
posted by We put our faith in Blast Hardcheese at 7:45 PM on May 11, 2015 [42 favorites]
There are two people in the world that I love, and neither of them would want to be kept alive in this situation. My father goes so far as to not leave the house without a card in his pocket labeled MEDICAL DIRECTIVE which is clearly visible at all times. My wife considers that kind of dainty and would probably prefer a Dirty Harry style final exit just on dramatic principle.
I'm not sure where I stand either for them or myself. It's a fucking mess. One thing that is absolutely true is that you lose your agency when you die, but your obligations remain to be fulfilled.
posted by localroger at 7:50 PM on May 11, 2015
I'm not sure where I stand either for them or myself. It's a fucking mess. One thing that is absolutely true is that you lose your agency when you die, but your obligations remain to be fulfilled.
posted by localroger at 7:50 PM on May 11, 2015
it's clear to me why a person would choose to hold on to life as long as possible, and why their partner would want the same, but i could never subject someone i love to the horrors this man encountered.You know, I have no idea what I would do, and I don't think you do, either. I would like to think that I would choose a quick death with dignity, but I don't have a fucking clue what I will actually think when my time comes. I might fight tooth and nail for every miserable day. It's really easy to be sure when it's totally hypothetical.
i think the people discussing euthanasia above would agree, or at least agree that a person should have the option to opt out of that.I think people should have the option, but I don't think they should be required to take it, and there's nothing in the article that makes me think she wanted to take it.
posted by ArbitraryAndCapricious at 7:51 PM on May 11, 2015 [12 favorites]
So, hey, before this turns into some weird internet flame fight, lemme talk about how much I wish my dad could die.
Short summary: He's been in a Schiavo since like..February? something like that. We're all devastated, naturally. My mom is a wreck, again, naturally.
But he's not technically dead, he still moves his eyes, and recognizes when people are talking and will, randomly, squeeze my mom's hand and tiny awesome things like that. But when she sends the family pictures of what dad supposedly did that day, all I see is a body. He's not there. But Mom thinks he is, so who am I to take that away from her?
It's worse because now I'm handling the bills, and I know that if dad's disability checks stop coming because he's Dead Dead, we're gonna be in an even bigger financial hole than the one he left us in originally by forgetting to pay things like Bills and Taxes.
So lines like "If I have to put her in a backpack and carry her to the chemo ward, I'll do it if it means getting an extra day with her."
Yea, no, that happens. But what's worse is that five minutes later, you could also wish some dude could just come in and shank the person, because you know there's no way you could do it yourself.
tl;dr Fuck Cancer/Death/Shitty Laws
posted by WeX Majors at 7:52 PM on May 11, 2015 [40 favorites]
Short summary: He's been in a Schiavo since like..February? something like that. We're all devastated, naturally. My mom is a wreck, again, naturally.
But he's not technically dead, he still moves his eyes, and recognizes when people are talking and will, randomly, squeeze my mom's hand and tiny awesome things like that. But when she sends the family pictures of what dad supposedly did that day, all I see is a body. He's not there. But Mom thinks he is, so who am I to take that away from her?
It's worse because now I'm handling the bills, and I know that if dad's disability checks stop coming because he's Dead Dead, we're gonna be in an even bigger financial hole than the one he left us in originally by forgetting to pay things like Bills and Taxes.
So lines like "If I have to put her in a backpack and carry her to the chemo ward, I'll do it if it means getting an extra day with her."
Yea, no, that happens. But what's worse is that five minutes later, you could also wish some dude could just come in and shank the person, because you know there's no way you could do it yourself.
tl;dr Fuck Cancer/Death/Shitty Laws
posted by WeX Majors at 7:52 PM on May 11, 2015 [40 favorites]
Love wasn't something I felt anymore. It was just something I did.
I think that is the most powerful. Anyone who has ever loved someone going through a hard time knows it. I am lucky enough to have friends and family that would do what Dane did if I ever needed it, and I have so many people I feel the same way about.
posted by elvissa at 7:52 PM on May 11, 2015 [8 favorites]
I think that is the most powerful. Anyone who has ever loved someone going through a hard time knows it. I am lucky enough to have friends and family that would do what Dane did if I ever needed it, and I have so many people I feel the same way about.
posted by elvissa at 7:52 PM on May 11, 2015 [8 favorites]
I don't think I've ever read a death account so stark and ordinary from a loved one close to the process. It truly makes me wonder if I would ever be able to handle caregiver duties like those he describes. Being responsible for packing wounds, giving injections and managing fecal spills are all things that horrify me even just in theory. For something that a great many of us will encounter up close in our lifetimes – the death process of an immediate family member and all its associated caregiving – there sure is a lot of mystery about its hard realities that we don't learn until the moment it's needed. I appreciated how this piece shed a little more light on that reality.
And the part about her loopy analog texts was great. This is what they mean when they say that there can be humor in everything.
posted by theraflu at 7:57 PM on May 11, 2015 [7 favorites]
And the part about her loopy analog texts was great. This is what they mean when they say that there can be humor in everything.
posted by theraflu at 7:57 PM on May 11, 2015 [7 favorites]
I mean honestly, the people in this thread who just want to pick pick pick apart this man's experiences, thoughts, choices during something that is almost hellish beyond description...I don't wish them well, let's leave it at that.
nobody here is trying to "pick pick pick apart" anything. we're having a discussion on our thoughts and feelings about the article. it is possible to feel emotion about something and still discuss the situation. i don't know. these are the choices these people made given the cards they were dealt. i don't think anyone is trying to judge them for that, we're all really just processing our feelings about the situation through our own worldviews. there is no need to wish people ill or assume someone isn't living their "best life" because of one post.
You know, I have no idea what I would do, and I don't think you do, either. I would like to think that I would choose a quick death with dignity, but I don't have a fucking clue what I will actually think when my time comes. I might fight tooth and nail for every miserable day. It's really easy to be sure when it's totally hypothetical.
there is certainly truth to this, but after dealing with two extended deaths during the end of my teens, i have no interest in living my last days like that.
posted by JimBennett at 8:02 PM on May 11, 2015 [3 favorites]
nobody here is trying to "pick pick pick apart" anything. we're having a discussion on our thoughts and feelings about the article. it is possible to feel emotion about something and still discuss the situation. i don't know. these are the choices these people made given the cards they were dealt. i don't think anyone is trying to judge them for that, we're all really just processing our feelings about the situation through our own worldviews. there is no need to wish people ill or assume someone isn't living their "best life" because of one post.
You know, I have no idea what I would do, and I don't think you do, either. I would like to think that I would choose a quick death with dignity, but I don't have a fucking clue what I will actually think when my time comes. I might fight tooth and nail for every miserable day. It's really easy to be sure when it's totally hypothetical.
there is certainly truth to this, but after dealing with two extended deaths during the end of my teens, i have no interest in living my last days like that.
posted by JimBennett at 8:02 PM on May 11, 2015 [3 favorites]
This is what love is.... acts not feelings. To have a friend, not family or spouse do this is an act of extreme love. What a good man.
The only solace that comes from something this horrible is knowing that you did whatever it is that the dying wanted you to do or needed you to do and did not know it themselves. Some want to fight for every microsecond and some want to walk through death's door on their own terms.
Either is a bad outcome.
Society stigmatizes the latter sometimes, in some places. As if the end weren't problem enough on its own, you can't even whisper about such things without bringing down harsh judgment.
Some of us will exit with a heart attack, some a car wreck, some with prolonged illnesses like this. Sometimes, I think the unexpected smash up on the interstate is preferable to either having to choose to live or choose to die. And once you choose, you choose for the survivors, too... you choose the nature of their grief. Hitchcock could not do it any better... the terror does not come from surprise, it comes from delay.
Will today be the day? What new horrors and pain await? What thing will I see? What words will I hear? What cruel reason is percolating in that unknown mind? What will happen the day after? The year after? The decade?
What good men.
posted by FauxScot at 8:02 PM on May 11, 2015 [15 favorites]
The only solace that comes from something this horrible is knowing that you did whatever it is that the dying wanted you to do or needed you to do and did not know it themselves. Some want to fight for every microsecond and some want to walk through death's door on their own terms.
Either is a bad outcome.
Society stigmatizes the latter sometimes, in some places. As if the end weren't problem enough on its own, you can't even whisper about such things without bringing down harsh judgment.
Some of us will exit with a heart attack, some a car wreck, some with prolonged illnesses like this. Sometimes, I think the unexpected smash up on the interstate is preferable to either having to choose to live or choose to die. And once you choose, you choose for the survivors, too... you choose the nature of their grief. Hitchcock could not do it any better... the terror does not come from surprise, it comes from delay.
Will today be the day? What new horrors and pain await? What thing will I see? What words will I hear? What cruel reason is percolating in that unknown mind? What will happen the day after? The year after? The decade?
What good men.
posted by FauxScot at 8:02 PM on May 11, 2015 [15 favorites]
We put our faith in Blast Hardcheese: Dying of late-stage metastasized ovarian cancer in which my entire abdomen rots and shreds and dissolves in endless unhealing wounds as I lie there insensate and psychotic is not a thing I am willing to do nor is it a thing I am willing to ask other people to endure me doing.
In the (powerful, well-written) article, it didn't start out like that. It started out, I'm guessing, like Fuck Cancer and bravely buzzed haircut selfies and a certain amount of pink ribbonage because even though you get a terminal diagnosis, people like to hold onto hope. Hope is a bitch, sometimes.
It started out like We Can Do This. It started out as I Love You And I Can Do This. It started as I Love You and I Can't Bear to Leave You Yet. By the time it got to the wrenching horror part during which you get some home nursing and stuff, the family is on the hook for a lot of the ongoing care unless they are independently wealthy. Hospice care (highly recommended, btw) is great, but you have to be in imminent danger of dying to qualify for that in my state. You have to be seriously circling the drain for hospice and there's a lot of distance between "Stage 4 terminal" and "qualifies for hospice" -- that distance is spanned by the family, who carry a lot of water in a job they are exceedingly unprepared for because until you've had someone dying slowly and horribly in your home, you really don't know what it's like. (Full disclosure: My grandma died by inches at home but her "cause of death" was being 98. A dear friend from high school is currently engaged in Dying of Colon Cancer at 45, but I'm not up close and personal for that one. He's still walking around, might have two years left. Depends on how the last round of Folfox went, I think.)
And when you get past the cheerful visits and the upbeat slogans and the We'll Pray For Yous and so forth, your person is probably beyond expressing "Fuck this shit, I want to die. This is grinding misery." so you're in it for the long haul, slogging along until the tuneless drag of those last breaths in what absolutely nobody will admit is a needless prolongation of life To The Pain because That Is What We Do even when it makes no sense at all and is bloody and painful and messy and dreadful and you wouldn't wish the specifics of it on your worst enemy... everyone tells you it is the right thing to do to the person you swore to love, honor, and cherish.
I question the validity of this position.
I question "Why did you do this to her?" and "Why did she do this to you?". There is a point beyond which I do not think people should have to suffer. If they want to persevere to the very end, fine... but I feel like people should be able to tap out earlier if they choose to do so. I feel, myself, that if the person at hand does not want to live anymore because the delights of dying from metastasized ovarian cancer are wearing a little thin, they should be allowed to leave the party early. In full fairness, I got no vibe that checking out early was apparently the case or intimated to be the case or inferred to be the case in the attached article, but I wondered in my mind why they hadn't gotten an advanced directive in order and/or looked into what Dying Of Ovarian Cancer was really like. Y'know, to make a more informed decision about end of life stuff.
As an American, I feel like we do not have a great culture for talking about the realities of dying and I think we could do a better job for everyone (the cling-to-lifers and the check-out-earliers) if we were more transparent and open about the options and what they entailed. I'd like to see how we talk about, learn about, and choose to face death change in the US.
posted by which_chick at 8:03 PM on May 11, 2015 [74 favorites]
In the (powerful, well-written) article, it didn't start out like that. It started out, I'm guessing, like Fuck Cancer and bravely buzzed haircut selfies and a certain amount of pink ribbonage because even though you get a terminal diagnosis, people like to hold onto hope. Hope is a bitch, sometimes.
It started out like We Can Do This. It started out as I Love You And I Can Do This. It started as I Love You and I Can't Bear to Leave You Yet. By the time it got to the wrenching horror part during which you get some home nursing and stuff, the family is on the hook for a lot of the ongoing care unless they are independently wealthy. Hospice care (highly recommended, btw) is great, but you have to be in imminent danger of dying to qualify for that in my state. You have to be seriously circling the drain for hospice and there's a lot of distance between "Stage 4 terminal" and "qualifies for hospice" -- that distance is spanned by the family, who carry a lot of water in a job they are exceedingly unprepared for because until you've had someone dying slowly and horribly in your home, you really don't know what it's like. (Full disclosure: My grandma died by inches at home but her "cause of death" was being 98. A dear friend from high school is currently engaged in Dying of Colon Cancer at 45, but I'm not up close and personal for that one. He's still walking around, might have two years left. Depends on how the last round of Folfox went, I think.)
And when you get past the cheerful visits and the upbeat slogans and the We'll Pray For Yous and so forth, your person is probably beyond expressing "Fuck this shit, I want to die. This is grinding misery." so you're in it for the long haul, slogging along until the tuneless drag of those last breaths in what absolutely nobody will admit is a needless prolongation of life To The Pain because That Is What We Do even when it makes no sense at all and is bloody and painful and messy and dreadful and you wouldn't wish the specifics of it on your worst enemy... everyone tells you it is the right thing to do to the person you swore to love, honor, and cherish.
I question the validity of this position.
I question "Why did you do this to her?" and "Why did she do this to you?". There is a point beyond which I do not think people should have to suffer. If they want to persevere to the very end, fine... but I feel like people should be able to tap out earlier if they choose to do so. I feel, myself, that if the person at hand does not want to live anymore because the delights of dying from metastasized ovarian cancer are wearing a little thin, they should be allowed to leave the party early. In full fairness, I got no vibe that checking out early was apparently the case or intimated to be the case or inferred to be the case in the attached article, but I wondered in my mind why they hadn't gotten an advanced directive in order and/or looked into what Dying Of Ovarian Cancer was really like. Y'know, to make a more informed decision about end of life stuff.
As an American, I feel like we do not have a great culture for talking about the realities of dying and I think we could do a better job for everyone (the cling-to-lifers and the check-out-earliers) if we were more transparent and open about the options and what they entailed. I'd like to see how we talk about, learn about, and choose to face death change in the US.
posted by which_chick at 8:03 PM on May 11, 2015 [74 favorites]
There is standard of palliative care which is in between euthenasia and prolonging things so far that your guts are burned through by your own stomach acid and you go so crazy you need Haldol -- all at home with your young daughters in the same room.
posted by MattD at 8:08 PM on May 11, 2015 [16 favorites]
posted by MattD at 8:08 PM on May 11, 2015 [16 favorites]
Because I am a nerd, and wonder, I immediately googled the author. He is, of course, a writer of some note who contributes to a variety of publications including the Atlantic. This is not a surprise, given the strength of the piece and the venue in which it ran.
I was unprepared for what I discovered when I googled Dane, however.
Dane is a comedian, which somehow makes the whole thing just a tiny bit more tragic.
I have to go hold my wife now.
posted by uberchet at 8:10 PM on May 11, 2015 [7 favorites]
I was unprepared for what I discovered when I googled Dane, however.
Dane is a comedian, which somehow makes the whole thing just a tiny bit more tragic.
I have to go hold my wife now.
posted by uberchet at 8:10 PM on May 11, 2015 [7 favorites]
I hoped, as I hit middle age, that America's weird relationship with Death would get better. As the mass of boomers started getting sicker and sicker and demanded to maintain some dignity, things would get better. That the tired cliche of us treating pets better than parents wouldn't hold true.
Damn it, America.
posted by DigDoug at 8:20 PM on May 11, 2015 [3 favorites]
Damn it, America.
posted by DigDoug at 8:20 PM on May 11, 2015 [3 favorites]
I just can't accept that cancer is a thing that shows up on your doorstep and makes you fill the love of your life with opiates until she goes insane. Maybe it is. I hope I never have to find out, and I'm thankful to the author for writing this as frankly as he did.
posted by billjings at 8:22 PM on May 11, 2015 [3 favorites]
posted by billjings at 8:22 PM on May 11, 2015 [3 favorites]
It wasn't clear to me that his wife wanted a faster exit. Because with that much morphine, dilaudid, and haldol around, it would have been manageable. It's okay for people to choose to die longer, to experience pain in order to have more cognitive hours. For some people, the option to end life sooner is unacceptable. Not for me to judge their choice.
I read it as a story of amazing friendship.
posted by theora55 at 8:24 PM on May 11, 2015 [5 favorites]
I read it as a story of amazing friendship.
posted by theora55 at 8:24 PM on May 11, 2015 [5 favorites]
I just can't accept that cancer is a thing that shows up on your doorstep and makes you fill the love of your life with opiates until she goes insane. Maybe it is.
Um yeah, that's, pretty much it. If, you know, you're lucky, like, real lucky, it's not your loved one, it's you. Sorry. This ain't fiction.
posted by We put our faith in Blast Hardcheese at 8:25 PM on May 11, 2015 [15 favorites]
Unless you've been the person making the medical decisions - and thus know just how far nursing staff will and won't take written orders - you really need to shut the hell up about judging this guy. My dad was on palliative care and the nursing staff regularly treated his pain meds as PRN instead of scheduled because they were more concerned about his respiratory status than his pain, even though he had a DNR, was off food and fluids, and had a longevity measured in days. I sat deathwatch and watched him come to the surface through the pain meds every 4-6 hours, summoned nurses, asked for pain meds, argued with them about respiratory rates, pointed out that I was a nurse, too, and that I could read the orders that said he was supposed to be getting the meds every 3 hours no matter his respiratory rate, because he was dying. I came in in the morning (because I wasn't allowed to spend the night) and there he was, moaning, because he hadn't been medicated properly, and I got to have the same goddamned argument with his nurses every day. And this was Canada, not the land of malpractice litigation.
I could probably have put a finger over his trach, it's true. But he was already panicked with air hunger. Even if I could have murdered my father, I couldn't have done it that way.
If you haven't sat a deathwatch, as the person in command, you really don't know enough to judge. Even if you're "lucky" enough to be in a jurisdiction with assisted suicide or euthanasia (which Alabama isn't), there's a window of opportunity and a lot of people miss that window. After that, there's just helpless waiting.
posted by gingerest at 8:27 PM on May 11, 2015 [71 favorites]
I could probably have put a finger over his trach, it's true. But he was already panicked with air hunger. Even if I could have murdered my father, I couldn't have done it that way.
If you haven't sat a deathwatch, as the person in command, you really don't know enough to judge. Even if you're "lucky" enough to be in a jurisdiction with assisted suicide or euthanasia (which Alabama isn't), there's a window of opportunity and a lot of people miss that window. After that, there's just helpless waiting.
posted by gingerest at 8:27 PM on May 11, 2015 [71 favorites]
If they want to persevere to the very end, fine... but I feel like people should be able to tap out earlier if they choose to do so.
Yeah should, but (mostly) aren't. And just because you've stopped treatment, it isn't like your body just obligingly switches off with a peaceful little gasp. My dad tapped out as much as was legally allowed by his state of residence, but his body was just like, "fuck you, I'm going to die as slowly, painfully, and horrifyingly as I want, hope you're ready for the shitshow." Did he want to die peacefully and swiftly? Of course he did. But the options for such were basically, "agree to have your 19 year old child smother you with a pillow" or ... wait.
posted by We put our faith in Blast Hardcheese at 8:29 PM on May 11, 2015 [9 favorites]
Yeah should, but (mostly) aren't. And just because you've stopped treatment, it isn't like your body just obligingly switches off with a peaceful little gasp. My dad tapped out as much as was legally allowed by his state of residence, but his body was just like, "fuck you, I'm going to die as slowly, painfully, and horrifyingly as I want, hope you're ready for the shitshow." Did he want to die peacefully and swiftly? Of course he did. But the options for such were basically, "agree to have your 19 year old child smother you with a pillow" or ... wait.
posted by We put our faith in Blast Hardcheese at 8:29 PM on May 11, 2015 [9 favorites]
He said, "She lashes out at you because she knows you'll stay."
This is the truest true thing anyone will ever tell you about your spouse or your children.
posted by Eyebrows McGee at 8:30 PM on May 11, 2015 [43 favorites]
This is the truest true thing anyone will ever tell you about your spouse or your children.
posted by Eyebrows McGee at 8:30 PM on May 11, 2015 [43 favorites]
Ok, now that I've had time, distance, dinner and some familial love, all I can think of is my dad. When I was 7 (1981) he started going to the hospital, I didn't know what for - it wasn't for a good long while that I finally knew it was something called leukemia. Back then cancer was still a thing spoken with that hushed whisper lower case c to avoid it hearing you talk about it. Now a days the phraseology is all loud and fight and battle, back then it was soft scared tones facing grievously mortal consequences.
Never really sure what caused him to win the genetic damage lottery -his time in the army, working on the runway at LAX are two external guesses, but what does it matter.
My mom sat with him in the hospital on and off for a year before he passed away 3 days after his 45th birthday. My mom and my grandfather striving to keep the family moving and keeping us shielded.
If my life ever comes to this, I hope there's a humane way out. If I'm ever in his shoes, I hope I can show the same fortitude. I'm afraid I couldn't and would wind up adding it to the litany that the asshole voice in my head repeats to me every day.
posted by drewbage1847 at 8:44 PM on May 11, 2015 [1 favorite]
Never really sure what caused him to win the genetic damage lottery -his time in the army, working on the runway at LAX are two external guesses, but what does it matter.
My mom sat with him in the hospital on and off for a year before he passed away 3 days after his 45th birthday. My mom and my grandfather striving to keep the family moving and keeping us shielded.
If my life ever comes to this, I hope there's a humane way out. If I'm ever in his shoes, I hope I can show the same fortitude. I'm afraid I couldn't and would wind up adding it to the litany that the asshole voice in my head repeats to me every day.
posted by drewbage1847 at 8:44 PM on May 11, 2015 [1 favorite]
His wife seemed so brave, sweet and funny, in spite of all her pain. It's just devastating to even imagine the events of the second half of his account, though I know trying to communicate it with others can be helpful, or at least necessary.
I liked how he described Dane's reactions, his not only being there and helping but maintaining such equanimity, wordlessly closing the door, shaving his Mohawk. I went and watched him on YouTube (thanks uberchet) and seeing him crack silly jokes just makes him seem more extraordinary and benevolent.
posted by callistus at 9:05 PM on May 11, 2015 [2 favorites]
I liked how he described Dane's reactions, his not only being there and helping but maintaining such equanimity, wordlessly closing the door, shaving his Mohawk. I went and watched him on YouTube (thanks uberchet) and seeing him crack silly jokes just makes him seem more extraordinary and benevolent.
posted by callistus at 9:05 PM on May 11, 2015 [2 favorites]
MexicanYenta: "Ok, he lost me when he started spying on naked college women. Really, dude? Wrong on several levels."
I didn't see it as that. I saw it as him observing joy and health and vigor. It's not like they only showed up there to see that. If I was in his situation and happened across such an occurance, I would do it too. Maybe it's whistling as I walk past the graveyard, but it would be therapeutic for me.
posted by Samizdata at 9:36 PM on May 11, 2015 [7 favorites]
I didn't see it as that. I saw it as him observing joy and health and vigor. It's not like they only showed up there to see that. If I was in his situation and happened across such an occurance, I would do it too. Maybe it's whistling as I walk past the graveyard, but it would be therapeutic for me.
posted by Samizdata at 9:36 PM on May 11, 2015 [7 favorites]
This was powerful; thank you for posting it.
posted by LobsterMitten at 9:39 PM on May 11, 2015 [1 favorite]
posted by LobsterMitten at 9:39 PM on May 11, 2015 [1 favorite]
I've been to this Metafilter site before. Did this really happen?
posted by Brocktoon at 9:39 PM on May 11, 2015
posted by Brocktoon at 9:39 PM on May 11, 2015
This is so raw, it's almost more than a person can handle, but it is the way it happens sometimes and we have no idea if we're headed for a similar situation.
But the take-away that we'd better pay attention to is clear and simple: Have the talk with your loved ones - use this article - take the talk to the far, far end; if there's no other way, do you want your family to pack up and move you to Washington or Oregon where it's not only legal, but morally understandable and acceptable, to opt out before the worst of the worst? If that's not possible, what then? No one would ask their loved ones to put their own lives in jeopardy by doing something to end the process that's illegal - or even something they might personally question later - but express yourself clearly - what exactly DO you want for yourself in this situation?
The talk has to be done before the pain meds begin - it's too easy to blame confusion from pain meds or antipsychotics for making the choice for assistance to end one's life before it reaches the point described in this article. And the miserable suffering of this family isn't all that unusual - this story is happening right now in someone's home in your town.
Get the paperwork done - make sure your doctor and hospital have a copy in your records AND that your records are flagged with a DNR or whatever choice you make. On every visit, have your physician check your record and verify that it's right there in front, not hidden in between the lab results from two years ago. So - paperwork, yes. Then, without fail, have THE TALK with your family.
I'm horrified and saddened by this family's suffering, but the one thing that can turn it into a positive from a negative is if it serves as a boot in the butt to get others set up the way they choose. Thank you for posting this very powerful story.
posted by aryma at 9:49 PM on May 11, 2015 [6 favorites]
But the take-away that we'd better pay attention to is clear and simple: Have the talk with your loved ones - use this article - take the talk to the far, far end; if there's no other way, do you want your family to pack up and move you to Washington or Oregon where it's not only legal, but morally understandable and acceptable, to opt out before the worst of the worst? If that's not possible, what then? No one would ask their loved ones to put their own lives in jeopardy by doing something to end the process that's illegal - or even something they might personally question later - but express yourself clearly - what exactly DO you want for yourself in this situation?
The talk has to be done before the pain meds begin - it's too easy to blame confusion from pain meds or antipsychotics for making the choice for assistance to end one's life before it reaches the point described in this article. And the miserable suffering of this family isn't all that unusual - this story is happening right now in someone's home in your town.
Get the paperwork done - make sure your doctor and hospital have a copy in your records AND that your records are flagged with a DNR or whatever choice you make. On every visit, have your physician check your record and verify that it's right there in front, not hidden in between the lab results from two years ago. So - paperwork, yes. Then, without fail, have THE TALK with your family.
I'm horrified and saddened by this family's suffering, but the one thing that can turn it into a positive from a negative is if it serves as a boot in the butt to get others set up the way they choose. Thank you for posting this very powerful story.
posted by aryma at 9:49 PM on May 11, 2015 [6 favorites]
prolonging things so far that [...] you go so crazy you need Haldol
I just can't accept that cancer is a thing that shows up on your doorstep and makes you fill the love of your life with opiates until she goes insane.
So my experience was, when you sign up for hospice, a brisk no-nonsense nurse comes to see you and gives you an emergency bag of meds that includes opiates and haldol. It's a standard kit for everybody entering home hospice, so it's not tailored to what your specific illness is - I gather it's mainly oriented for metastatic cancers. And then that bag sits until you need it - but it's expected that you'll need it eventually.
posted by LobsterMitten at 10:09 PM on May 11, 2015 [1 favorite]
I just can't accept that cancer is a thing that shows up on your doorstep and makes you fill the love of your life with opiates until she goes insane.
So my experience was, when you sign up for hospice, a brisk no-nonsense nurse comes to see you and gives you an emergency bag of meds that includes opiates and haldol. It's a standard kit for everybody entering home hospice, so it's not tailored to what your specific illness is - I gather it's mainly oriented for metastatic cancers. And then that bag sits until you need it - but it's expected that you'll need it eventually.
posted by LobsterMitten at 10:09 PM on May 11, 2015 [1 favorite]
> I...what the fuck are you even...yes, you're the only one who thought this.
Uh, no, he's not.
It's not taking anything away from the incredibly moving and heart-wrenching account to say that this is an extreme to put each through. Even when chosen willingly.
posted by desuetude at 10:38 PM on May 11, 2015 [7 favorites]
Uh, no, he's not.
It's not taking anything away from the incredibly moving and heart-wrenching account to say that this is an extreme to put each through. Even when chosen willingly.
posted by desuetude at 10:38 PM on May 11, 2015 [7 favorites]
Ok, he lost me when he started spying on naked college women. Really, dude? Wrong on several levels.
Wow. He sees them. The "spying" exists only in your imagination.
posted by HiroProtagonist at 11:05 PM on May 11, 2015 [10 favorites]
Wow. He sees them. The "spying" exists only in your imagination.
posted by HiroProtagonist at 11:05 PM on May 11, 2015 [10 favorites]
It wasn't clear to me that his wife wanted a faster exit. Because with that much morphine, dilaudid, and haldol around, it would have been manageable.
Respectfully, no. A dear friend of mine who has undergone a series of open heart surgeries ripped out her cardiac catheter wires and some pacemaker wires owing to a psychotic reaction to opiates while in recovery from her last one. The ICU nurses were kind of in awe.
During the rest of her recovery, she was put on nothing stronger than Tylenol 2.
So for some people, that level of opiation sometimes ends up being something other than sedation.
posted by mandolin conspiracy at 11:24 PM on May 11, 2015 [2 favorites]
Respectfully, no. A dear friend of mine who has undergone a series of open heart surgeries ripped out her cardiac catheter wires and some pacemaker wires owing to a psychotic reaction to opiates while in recovery from her last one. The ICU nurses were kind of in awe.
During the rest of her recovery, she was put on nothing stronger than Tylenol 2.
So for some people, that level of opiation sometimes ends up being something other than sedation.
posted by mandolin conspiracy at 11:24 PM on May 11, 2015 [2 favorites]
Am I the only one who read this and at a certain point asked: "Why? Why did you do this to your wife? Why did your wife do this to you?"
No, no, you're not.
But it is hard to know how you will react in a similar situation, whether you're the one with the cancer or the spouse having to look on helplessly. These things don't happen neatly, there's no real point where you can say "okay, now I just want to die and get it over with" even when you do have a terminal diagnosis.
There are ups and downs and perhaps that little bit of hope that you could have some more good days with your family and friends. All the shit and blood and medical stuff you have to deal with, you learn to deal with to the point it almost disappears even though there are moments it overwhelms you.
People adapt and what seems impossible to bear from a distance becomes the new normal for people with no choice but to deal with it.
But yeah, for Sandra and me both it was a relief we lived in a country where she could decide to die with dignity at a point of her choosing, rather than to have to continue struggling in a pointless fight.
posted by MartinWisse at 11:52 PM on May 11, 2015 [29 favorites]
No, no, you're not.
But it is hard to know how you will react in a similar situation, whether you're the one with the cancer or the spouse having to look on helplessly. These things don't happen neatly, there's no real point where you can say "okay, now I just want to die and get it over with" even when you do have a terminal diagnosis.
There are ups and downs and perhaps that little bit of hope that you could have some more good days with your family and friends. All the shit and blood and medical stuff you have to deal with, you learn to deal with to the point it almost disappears even though there are moments it overwhelms you.
People adapt and what seems impossible to bear from a distance becomes the new normal for people with no choice but to deal with it.
But yeah, for Sandra and me both it was a relief we lived in a country where she could decide to die with dignity at a point of her choosing, rather than to have to continue struggling in a pointless fight.
posted by MartinWisse at 11:52 PM on May 11, 2015 [29 favorites]
This was an incredibly moving piece to read, and I am in awe of the clarity and honesty the author brought to it. I encountered this FPP today while actually waiting to see my haematologist. (A year and a half after the end of treatment: still clear.) I teared up in the waiting room. Ghu knows what the people around me thought.
I see nothing to criticise him for. I would doubt the honesty of a tale that displayed the carer as an indomitable tower of strength and virtue. Caring for a dying loved one does not turn you into a robot. It is harder on the carers than the cared-for. I saw what my wife went through caring for me, and we both knew that I was almost certain to survive. I saw some of her moments of weakness, and she saw some of mine. I love that she carried on despite those moments.
You don't know for sure how you will react to a terminal diagnosis until you are faced with it. At the moment you are faced with it, any decision you make is going to be BAD - meaning Best Available Data. I have faced the little fear: that of not knowing. While waiting for my cancer to be staged, I looked inside myself and learned certain things and made certain decisions. But my cancer was deemed curable. I have not faced the big fear, and I hope I never do. I hope nobody reading this ever has to make that decision. Because no matter what you decide, somebody out there will be pointing at you and shouting "WRONG!"
posted by Autumn Leaf at 12:44 AM on May 12, 2015 [15 favorites]
I see nothing to criticise him for. I would doubt the honesty of a tale that displayed the carer as an indomitable tower of strength and virtue. Caring for a dying loved one does not turn you into a robot. It is harder on the carers than the cared-for. I saw what my wife went through caring for me, and we both knew that I was almost certain to survive. I saw some of her moments of weakness, and she saw some of mine. I love that she carried on despite those moments.
You don't know for sure how you will react to a terminal diagnosis until you are faced with it. At the moment you are faced with it, any decision you make is going to be BAD - meaning Best Available Data. I have faced the little fear: that of not knowing. While waiting for my cancer to be staged, I looked inside myself and learned certain things and made certain decisions. But my cancer was deemed curable. I have not faced the big fear, and I hope I never do. I hope nobody reading this ever has to make that decision. Because no matter what you decide, somebody out there will be pointing at you and shouting "WRONG!"
posted by Autumn Leaf at 12:44 AM on May 12, 2015 [15 favorites]
Am I the only one who read this and at a certain point asked: "Why? Why did you do this to your wife? Why did your wife do this to you?"
I'm guessing that some of the reason he wrote the piece is that he and his wife had no idea what dying of cancer was actually like until they were in the midst of it, and he knew that others were similarly ignorant. I am still in awe of how many novel ways cancer has to rob us of our dignity as we die, and I've known a fair few people who've died of it. Maybe she had an advance directive that said she wanted to have nutritional support and interventions until the end, because she didn't anticipate being riddled with fistulas and psychotic, and he wanted to honor that. Maybe her medical staff never offered him the options of withdrawing artificial nutrition and hydration - Alabama has a high rate of feeding tube insertion in the demented elderly, and its lawmakers responded to the Terry Schiavo case by trying to ban withdrawal of feeding tubes without written instructions from the patient, so I think maybe there are some local culture issues that might make it harder to withhold life-saving interventions.
As to this - " Because with that much morphine, dilaudid, and haldol around, it would have been manageable" - if she didn't have the drugs around while she was still aware and able to choose suicide (which she might not have had the moral fibre or religious inclination to do), then you're asking her husband not only to directly euthanize her but to face the possibility of murder charges if he gets caught. They have two daughters. It's not that easy.
This is just a really shitty thing to armchair-quarterback.
posted by gingerest at 1:28 AM on May 12, 2015 [28 favorites]
I'm guessing that some of the reason he wrote the piece is that he and his wife had no idea what dying of cancer was actually like until they were in the midst of it, and he knew that others were similarly ignorant. I am still in awe of how many novel ways cancer has to rob us of our dignity as we die, and I've known a fair few people who've died of it. Maybe she had an advance directive that said she wanted to have nutritional support and interventions until the end, because she didn't anticipate being riddled with fistulas and psychotic, and he wanted to honor that. Maybe her medical staff never offered him the options of withdrawing artificial nutrition and hydration - Alabama has a high rate of feeding tube insertion in the demented elderly, and its lawmakers responded to the Terry Schiavo case by trying to ban withdrawal of feeding tubes without written instructions from the patient, so I think maybe there are some local culture issues that might make it harder to withhold life-saving interventions.
As to this - " Because with that much morphine, dilaudid, and haldol around, it would have been manageable" - if she didn't have the drugs around while she was still aware and able to choose suicide (which she might not have had the moral fibre or religious inclination to do), then you're asking her husband not only to directly euthanize her but to face the possibility of murder charges if he gets caught. They have two daughters. It's not that easy.
This is just a really shitty thing to armchair-quarterback.
posted by gingerest at 1:28 AM on May 12, 2015 [28 favorites]
This is just a really shitty thing to armchair-quarterback.
I think it’s OK to ask why we are making people do this to each other. It’s not blaming the individual for their choices to ask why those choices were limited to so few options.
posted by pharm at 3:35 AM on May 12, 2015 [11 favorites]
I think it’s OK to ask why we are making people do this to each other. It’s not blaming the individual for their choices to ask why those choices were limited to so few options.
posted by pharm at 3:35 AM on May 12, 2015 [11 favorites]
What a great guy. I was in a similar position around this time last year until Jan. Both (trying to at least) making sure my friend's dad was taken care of in the hospital, having him stay with me when he flew down and then again for the last 2 or so months of his dad's life. I'm not boasting, I was terrible at it, at times we'd joke that between the two of us we made up 1 barely functional person. I drove away another friend due in no small part to all the stress and my poor handling of it. Conversations ran the gamut of gallows humor to serious discussions of euthanasia for one another if one of us ever started circling the drain like that. The most cowardly and shameful part is I don't know if I could go through that for someone else again.
We're planning on witnessing each other's living will/medical orders papers the next time he's down. There's so much more I could tell about the experience, but it wouldn't be fair to my friend, and in fact I feel I may be betraying him in some way typing this. I'm also not nearly as good of a writer as the author of this piece. Thank you for posting it, it was one of the more painful things I've read here but hopefully it will help me process.
posted by mcrandello at 3:38 AM on May 12, 2015 [3 favorites]
We're planning on witnessing each other's living will/medical orders papers the next time he's down. There's so much more I could tell about the experience, but it wouldn't be fair to my friend, and in fact I feel I may be betraying him in some way typing this. I'm also not nearly as good of a writer as the author of this piece. Thank you for posting it, it was one of the more painful things I've read here but hopefully it will help me process.
posted by mcrandello at 3:38 AM on May 12, 2015 [3 favorites]
I thought this article was more about his mate Dane, which is probably one of the most bitter-sweet stories I've ever read.
As for the euthanasia question, which seems to have become the topic, my father spent the last year of his life in a hospital bed on so many opiods that he couldn't really communicate for that year. If he'd had a choice to end it earlier, he might have - I don't know. It certainly would have made things easier on the rest of us. But I think having that choice would be good, not just for the ill, but also for their families,
posted by Diag at 4:10 AM on May 12, 2015 [1 favorite]
As for the euthanasia question, which seems to have become the topic, my father spent the last year of his life in a hospital bed on so many opiods that he couldn't really communicate for that year. If he'd had a choice to end it earlier, he might have - I don't know. It certainly would have made things easier on the rest of us. But I think having that choice would be good, not just for the ill, but also for their families,
posted by Diag at 4:10 AM on May 12, 2015 [1 favorite]
I only made it halfway through, I couldn't handle it right now. Plus I need to get to work. That's it, I should be working.
posted by marxchivist at 5:26 AM on May 12, 2015 [1 favorite]
posted by marxchivist at 5:26 AM on May 12, 2015 [1 favorite]
It wasn't clear to me that his wife wanted a faster exit. Because with that much morphine, dilaudid, and haldol around, it would have been manageable.Respectfully, no.
I had the same reaction as theora55. The author makes a point of mentioning that there was so much liquid morphine lying around his house that he was warned about burglars. I can only conclude that his wife remained alive throughout this ordeal because she chose to. Which I'm in no position to judge; everyone's struggle is their own, and I can't pretend to knows how she felt in the last months of her life. However, the idea of pushing through that kind of agony fills me with visceral horror. The day I have a terminal cancer diagnosis and a functionally unlimited supply of opiates, I intend to evict everyone from my house and videotape myself administering the overdose, so that I'm sure no one will be punished for doing the humane thing.
posted by Mayor West at 5:45 AM on May 12, 2015 [8 favorites]
This was heartbreaking, gut-wrenching, and just plain awful to read because it's so real. My family is currently traveling a similar road with ALS. The lashing out, the psychosis, the caregiver fatigue, the torture of watching someone you love slowly, painfully, miserably die... it's all the same. I completely understand being in favor of humane euthanasia and at the same time knowing it's just not an option. The people judging this man's experience have obviously never stood in those shoes. I sincerely hope for you that you never have to.
posted by geeky at 6:06 AM on May 12, 2015 [6 favorites]
posted by geeky at 6:06 AM on May 12, 2015 [6 favorites]
I guess I just, really, don't understand the people who think this was a thing anybody involved actually chose. I can't help but think that people who think there's any element of *real* "choice" involved here have not experienced this, and are simply unable to conceive of a situation in which all choices are taken away from you very rapidly. I don't blame them for not wanting to conceive of such a thing but it will happen regardless of their belief.
posted by We put our faith in Blast Hardcheese at 7:03 AM on May 12, 2015 [12 favorites]
posted by We put our faith in Blast Hardcheese at 7:03 AM on May 12, 2015 [12 favorites]
My wife and I talked about this article last night after I read it. And she asked "How do you know when you don't have 'a few good days' left in you? Because I can understand wanting to hang on as long as you think you have a few good days." I think this is along the lines of what which_chick was saying upthread. Clearly the wife in this story endured past that point, but it also seems that by the time she reached that point, she wasn't lucid enough to make decisions for herself.
She and I both have advance directives. Neither one of us wants to linger, and this article reinforces my desire not to be a burden on her, if it ever comes to that. We have a couple of friends who probably aren't going to see 2016 because of cancer. (I added the word "probably" to make myself feel better. We all know.) So it's been on our minds a lot.
posted by adamrice at 7:05 AM on May 12, 2015 [4 favorites]
She and I both have advance directives. Neither one of us wants to linger, and this article reinforces my desire not to be a burden on her, if it ever comes to that. We have a couple of friends who probably aren't going to see 2016 because of cancer. (I added the word "probably" to make myself feel better. We all know.) So it's been on our minds a lot.
posted by adamrice at 7:05 AM on May 12, 2015 [4 favorites]
Why did i read this at work? I have a lump in my throat the size of an apple and i had to stop to compose myself. This is a HARD read.
The ending is a strange, empty letdown. But dammit, I wish I had a friend like Dane. And I have plenty of great ones! I wish everyone did, actually.
posted by trif at 7:19 AM on May 12, 2015 [2 favorites]
The ending is a strange, empty letdown. But dammit, I wish I had a friend like Dane. And I have plenty of great ones! I wish everyone did, actually.
posted by trif at 7:19 AM on May 12, 2015 [2 favorites]
If you haven't sat a deathwatch, as the person in command, you really don't know enough to judge.
Sitting in as number two isn't much easier. "Is it okay to give her this much?" being asked from a person with no medical training, to another person with no medical training, is just an impossible, unanswerable question. The nurses had been telling us "it will be over any day now" for weeks.
Did she die from the prescribed morphine? Did she die from the tumor slowly wrapping tighter around her esophagus? Did she die from starvation or from dehydration, because she could no longer swallow? Did she die from her organs finally shutting down? Did she die because her liver gave up? Was it the medicine we had to dribble under her tongue because, again, she couldn't swallow? Should we have given her more of it sooner, even though the day before she died we all laughed together even as she starved and begged for water she couldn't drink?
Second-guessing the choices of people in this position implies that there are actual choices being made, and I can assure you, having lived through such an event: the idea that choice has anything to do with it verges on a just world fallacy.
posted by a fiendish thingy at 7:23 AM on May 12, 2015 [27 favorites]
Sitting in as number two isn't much easier. "Is it okay to give her this much?" being asked from a person with no medical training, to another person with no medical training, is just an impossible, unanswerable question. The nurses had been telling us "it will be over any day now" for weeks.
Did she die from the prescribed morphine? Did she die from the tumor slowly wrapping tighter around her esophagus? Did she die from starvation or from dehydration, because she could no longer swallow? Did she die from her organs finally shutting down? Did she die because her liver gave up? Was it the medicine we had to dribble under her tongue because, again, she couldn't swallow? Should we have given her more of it sooner, even though the day before she died we all laughed together even as she starved and begged for water she couldn't drink?
Second-guessing the choices of people in this position implies that there are actual choices being made, and I can assure you, having lived through such an event: the idea that choice has anything to do with it verges on a just world fallacy.
posted by a fiendish thingy at 7:23 AM on May 12, 2015 [27 favorites]
This was an utterly heartbreaking read, but thank you for posting it.
"It's everywhere," he said. "Like somebody dipped a paintbrush in cancer and flicked it around her abdomen."
Only now can I look back on the fullness of our affection; at the time I could see nothing but one wound at a time, a hole the size of a dime, into which I needed to pack a fistful of material. Love wasn't something I felt anymore. It was just something I did. When I finished, I would lie next to her and use sterile cotton balls to soak up her tears.
posted by RedOrGreen at 7:42 AM on May 12, 2015
"It's everywhere," he said. "Like somebody dipped a paintbrush in cancer and flicked it around her abdomen."
Only now can I look back on the fullness of our affection; at the time I could see nothing but one wound at a time, a hole the size of a dime, into which I needed to pack a fistful of material. Love wasn't something I felt anymore. It was just something I did. When I finished, I would lie next to her and use sterile cotton balls to soak up her tears.
posted by RedOrGreen at 7:42 AM on May 12, 2015
I question "Why did you do this to her?" and "Why did she do this to you?". There is a point beyond which I do not think people should have to suffer. If they want to persevere to the very end, fine... but I feel like people should be able to tap out earlier if they choose to do so.
There is a huge difference between asking why society forces this and the way you phrased it--as if it were a freely made choice and he did this to her and she did it to him. And that anyone here can judge them for it. Even if there were a choice, it looks like she may have chosen to fight for one more good day. Pressuring burdensome people to die faster is just as ugly as forcing them to live longer than they want to.
I think it’s OK to ask why we are making people do this to each other. It’s not blaming the individual for their choices to ask why those choices were limited to so few options.
Yeah, but there are some people who are asking why they chose to do this to each other, which is just an unimaginably cruel question to ask when they probably didn't have a choice.
posted by Mavri at 7:50 AM on May 12, 2015 [10 favorites]
There is a huge difference between asking why society forces this and the way you phrased it--as if it were a freely made choice and he did this to her and she did it to him. And that anyone here can judge them for it. Even if there were a choice, it looks like she may have chosen to fight for one more good day. Pressuring burdensome people to die faster is just as ugly as forcing them to live longer than they want to.
I think it’s OK to ask why we are making people do this to each other. It’s not blaming the individual for their choices to ask why those choices were limited to so few options.
Yeah, but there are some people who are asking why they chose to do this to each other, which is just an unimaginably cruel question to ask when they probably didn't have a choice.
posted by Mavri at 7:50 AM on May 12, 2015 [10 favorites]
Been thinking about this since yesterday. A friend at church took his own life after living a few years with his progressing Alzheimer's, and truly, I'm proud of him. He went the way he wanted to go, he rejected a path where there was nothing but suffering and fear ahead of him. There was no good death waiting for him, so he made the best one he could.
And of course, you start to notice after you reach a certain age that cancer diagnoses and treatment and death are going on all around you (coworkers, friends, relatives, acquaintances) almost constantly.
Don't know where I'm going with this, but it's making me think it's time to have some conversations I've been putting off and look at what my options might be in this situation. As far as I know, everything's fine. But like everyone else, I worry.
I appreciate him telling as much of the nightmare as he did, because while I could imagine pain and morphine and breathing tubes, I had no idea a body could disintegrate the way he describes and yet keep going and suffering. I don't want that.
posted by emjaybee at 7:59 AM on May 12, 2015 [4 favorites]
And of course, you start to notice after you reach a certain age that cancer diagnoses and treatment and death are going on all around you (coworkers, friends, relatives, acquaintances) almost constantly.
Don't know where I'm going with this, but it's making me think it's time to have some conversations I've been putting off and look at what my options might be in this situation. As far as I know, everything's fine. But like everyone else, I worry.
I appreciate him telling as much of the nightmare as he did, because while I could imagine pain and morphine and breathing tubes, I had no idea a body could disintegrate the way he describes and yet keep going and suffering. I don't want that.
posted by emjaybee at 7:59 AM on May 12, 2015 [4 favorites]
It wasn't clear to me that his wife wanted a faster exit. Because with that much morphine, dilaudid, and haldol around, it would have been manageable
theora55: Sorry, I read this as manageable in terms of pain management, no the "faster exit part." My bad.
Yeah, that quantity was definitely in stock in the house, judging by his account.
posted by mandolin conspiracy at 8:30 AM on May 12, 2015
theora55: Sorry, I read this as manageable in terms of pain management, no the "faster exit part." My bad.
Yeah, that quantity was definitely in stock in the house, judging by his account.
posted by mandolin conspiracy at 8:30 AM on May 12, 2015
She posted a video on YouTube after her diagnosis. It seems she was very devout.
posted by auntie maim at 9:04 AM on May 12, 2015
posted by auntie maim at 9:04 AM on May 12, 2015
Haldol was designed as an antischizophrenic drug in the 1950s, at the peak of the mental-institution boom in America. It's a knockout drug. "Hound dog," the nurses called it.
Also known as "booty juice" - because if you have an incident in a mental hospital and have to be restrained and sedated, they inject Haldol in your butt.
posted by Juliet Banana at 9:16 AM on May 12, 2015
Also known as "booty juice" - because if you have an incident in a mental hospital and have to be restrained and sedated, they inject Haldol in your butt.
posted by Juliet Banana at 9:16 AM on May 12, 2015
The description of her passing away was similar to what I witnessed when my mom died five years ago this past weekend. It was not cancer, although she survived a bout with cancer 20 years earlier. In her case, it was hemachromotosis that destroyed her liver, heart and lungs.
Her breathing slowed. There were moans every now and again. Her doctor told us that even though she might not be responsive, she might still be able to hear and comprehend. We called her sister who would be unable to attend the impending funeral and over the phone gave her the opportunity to say goodbye.
Hours passed.
In the dark of the night, he pulse slowed and then finally stopped.
Dane reminds me of this answer in AskMe about 6 years ago:
posted by plinth at 9:18 AM on May 12, 2015 [9 favorites]
Her breathing slowed. There were moans every now and again. Her doctor told us that even though she might not be responsive, she might still be able to hear and comprehend. We called her sister who would be unable to attend the impending funeral and over the phone gave her the opportunity to say goodbye.
Hours passed.
In the dark of the night, he pulse slowed and then finally stopped.
Dane reminds me of this answer in AskMe about 6 years ago:
A friend who is in crisis right now told me that when friends offer their help, she responds, "Sure, you could come over and stack wood with me for half an hour." If they demur and do not think up some other form of help, she knows they're not really offering to help, just uttering the words as social form. This is a useful distinction to make.Dane stacked wood for a year.
posted by plinth at 9:18 AM on May 12, 2015 [9 favorites]
My Mom got together all her directives, with my help. I was careful, and we went back over it all several times as she slipped into full dementia and Alzheimers. I cared for her for years the last six months in my apartment, until she became a physical danger to me, then she went onto a locked unit. She was in strong physical health, I expected her to live out a decade. While taking care of an elderly friend two houses away, I received five phone calls from her unit, in quick succession, but I had left the phone by my chair at home.
When I called them, they said she had dinner, was joking, had some water, and then asked to be walked back to her room, and then had what looked to be a small seizure, and then slipped to the floor. They read her DNR orders and tried to call me five times in the course of her brief, soft, easy passing, to countermand these orders. She had told me two days prior she felt she was in prison, and she didn't feel she would live much longer, yet she was the least impaired patient on the unit, but she was there in only the momem zzznt. She would say things like I haven't eaten all day, or no one speaks to me, then I realized she had no memory of it. It never occurred to me how loss of memory would leave Alzheimers patients lonely. The patients were only alone to sleep, otherwise they lived in a large dayroom with lots of activities.
I got there as quickly as I could and found a completely at peace, still, shell of my Mom, and a completly upset staff. All other considerations, I had her out of the place before midnight, because they would have charged me for the following day.
Getting the paperwork right made thing work for easy departure from this life, the previous five years had been a nightmare of the loss of self, and the freedom she had always known.
posted by Oyéah at 9:26 AM on May 12, 2015 [8 favorites]
When I called them, they said she had dinner, was joking, had some water, and then asked to be walked back to her room, and then had what looked to be a small seizure, and then slipped to the floor. They read her DNR orders and tried to call me five times in the course of her brief, soft, easy passing, to countermand these orders. She had told me two days prior she felt she was in prison, and she didn't feel she would live much longer, yet she was the least impaired patient on the unit, but she was there in only the momem zzznt. She would say things like I haven't eaten all day, or no one speaks to me, then I realized she had no memory of it. It never occurred to me how loss of memory would leave Alzheimers patients lonely. The patients were only alone to sleep, otherwise they lived in a large dayroom with lots of activities.
I got there as quickly as I could and found a completely at peace, still, shell of my Mom, and a completly upset staff. All other considerations, I had her out of the place before midnight, because they would have charged me for the following day.
Getting the paperwork right made thing work for easy departure from this life, the previous five years had been a nightmare of the loss of self, and the freedom she had always known.
posted by Oyéah at 9:26 AM on May 12, 2015 [8 favorites]
This author was trying to write about Dane's friendship. I imagine that if he was writing about making end-of-life decisions, he would have a lot more to say about what combination of hope, love for their daughters, love for his wife, her will to live, and etc. led to their circumstances. But that's not what this essay seems intended to discuss.
It's understandable that some would react by saying "I'll make sure nobody I love goes through this," but that seems like a way of distancing ourselves from the pain in this story. "That will never happen to ME." Well, I hope it doesn't, and it sounds like you'll do everything you can to prevent it. But you may end up with your own year of pain and horror nonetheless. Someone you love could get something curable, but only after years of treatment. I wish that all of us and all of our loved ones enjoy long and healthy lives followed by quick, painless, dignified deaths, but obviously, not everyone in the world manages to have that fortune.
This essay is about friendship. It's about a year so terrible that many of us react to reading it by distancing ourselves, yet this friend chose to come and stand by their side through it all. That's incredibly touching. I'm grateful to the author for writing it. Thanks for posting it, roomthreeseventeen.
posted by salvia at 9:32 AM on May 12, 2015 [18 favorites]
It's understandable that some would react by saying "I'll make sure nobody I love goes through this," but that seems like a way of distancing ourselves from the pain in this story. "That will never happen to ME." Well, I hope it doesn't, and it sounds like you'll do everything you can to prevent it. But you may end up with your own year of pain and horror nonetheless. Someone you love could get something curable, but only after years of treatment. I wish that all of us and all of our loved ones enjoy long and healthy lives followed by quick, painless, dignified deaths, but obviously, not everyone in the world manages to have that fortune.
This essay is about friendship. It's about a year so terrible that many of us react to reading it by distancing ourselves, yet this friend chose to come and stand by their side through it all. That's incredibly touching. I'm grateful to the author for writing it. Thanks for posting it, roomthreeseventeen.
posted by salvia at 9:32 AM on May 12, 2015 [18 favorites]
(I am secretly terrified my wife will have to deal with me dying like this. So terrified. I can't even think about how our daughter would feel.)
posted by Theta States at 11:06 AM on May 12, 2015 [1 favorite]
posted by Theta States at 11:06 AM on May 12, 2015 [1 favorite]
Heartbreaking. Recognizing it was a piece about Dane as much as anything else, I didn't really understand his wife and the choices she made - it felt to me like there was something missing from her story and this piece helped give some context on how she viewed things.
posted by SoFlo1 at 11:08 AM on May 12, 2015 [9 favorites]
posted by SoFlo1 at 11:08 AM on May 12, 2015 [9 favorites]
I'm not sure I understand that comment, SoFlo1. What choices are you talking about?
posted by ArbitraryAndCapricious at 11:32 AM on May 12, 2015
posted by ArbitraryAndCapricious at 11:32 AM on May 12, 2015
I guess I didn't understand her unflinching choice to cling to life no matter what that meant - I couldn't place it as either courage or selfishness, pure survival instinct or something else - and it could very well be, as others have pointed out, that choices were stripped of her and her husband faster than they could process, that there really was no scope for "death with dignity".
That said, discussions of life and death issues at this level without understanding the person's views on life after death, the sanctity of life, the "place of man", etc. leads to a pretty one dimensional view of the whole thing. I guess I felt like her spiritual faith - which apparently was not a death-bed kind of conversion thing but was in fact a big part of her life before cancer - was conspicuously absent from the Esquire story about her death even though it must have informed the choices they made and the approach they took to facing this nightmare.
posted by SoFlo1 at 11:49 AM on May 12, 2015 [5 favorites]
That said, discussions of life and death issues at this level without understanding the person's views on life after death, the sanctity of life, the "place of man", etc. leads to a pretty one dimensional view of the whole thing. I guess I felt like her spiritual faith - which apparently was not a death-bed kind of conversion thing but was in fact a big part of her life before cancer - was conspicuously absent from the Esquire story about her death even though it must have informed the choices they made and the approach they took to facing this nightmare.
posted by SoFlo1 at 11:49 AM on May 12, 2015 [5 favorites]
A very black version of the old "I sent you a boat" joke is going through my head after reading that, really. If you think the will of God is that you subject yourself and your husband to a year of hell and insure that the clearest, strongest memory your children will have of you is you raving psychotically in hideous pain as parts of your body literally disintegrate... maybe you are missing things.
Certainly not much of a testimony for finding Christ, I'd say. Despite her wishes.
posted by tavella at 12:08 PM on May 12, 2015
Certainly not much of a testimony for finding Christ, I'd say. Despite her wishes.
posted by tavella at 12:08 PM on May 12, 2015
I'm not sure tavella, I really don't know what to make of it all. She appeared to deal with the situation, in all it's ghastly details, in a different way than her husband. Did she tap into something different than her husband so that she also did not just give into despair as he did at times - or was it just the drugs talking? I surmise that her husband either did not share her faith or the editors didn't think views on life and death should be included in a touching story about friendship.
posted by SoFlo1 at 12:27 PM on May 12, 2015
posted by SoFlo1 at 12:27 PM on May 12, 2015
It's really easy to say "I would never want to linger on in that state" when you have the benefit of distance. It's a lot harder to say "Yes, okay, this is it. This is the right time to check out." Terminal illness and disability isn't a linear road, and while I'd like to think I'd have the wisdom and courage to know when to quit, I know that the impulse to second-guess myself would be strong. What if tomorrow is another "good day"? What if there's hope of seeing your children, your husband, your parents one more time? I honestly don't know how I'd react in that situation, and I think a lot of people here imagine they'd have a lot more certainty than is realistic.
posted by kagredon at 12:42 PM on May 12, 2015 [12 favorites]
posted by kagredon at 12:42 PM on May 12, 2015 [12 favorites]
Aye. This is horrible. And yet I could see myself selfishly choosing to keep fighting on through a sense of stubbornness and a fuck you to cancer. She diagnosed at 34! You don't expect to die in your 30s! Not like that. And believing that against all odds, maybe there is hope? And if she was hanging out on cancer boards for support, there are surely stories o the one person who beat the odds (even if there were hundreds that didn't.)
There is also the culture of being a brave cancer warrior. It's come up more than once as toxic to many actual cancer suffers. Maybe it's good for some, but for others, it surely leads to both false hope and a sense of duty to try fighting.
And maybe the author was kind of shitty at keeping house. Maybe she felt as many women do that they are the only thing keeping the house together. Right or wrong.
There are so many possibilities, it's just beyond the pale to ask why. The article didn't make it clear that he wasn't the one trying to keep her going... Just that he said that in the beginning and that things got really really bad at the end, not that he wasn't just as irrational about keeping her alive to the last.
posted by [insert clever name here] at 1:38 PM on May 12, 2015 [1 favorite]
There is also the culture of being a brave cancer warrior. It's come up more than once as toxic to many actual cancer suffers. Maybe it's good for some, but for others, it surely leads to both false hope and a sense of duty to try fighting.
And maybe the author was kind of shitty at keeping house. Maybe she felt as many women do that they are the only thing keeping the house together. Right or wrong.
There are so many possibilities, it's just beyond the pale to ask why. The article didn't make it clear that he wasn't the one trying to keep her going... Just that he said that in the beginning and that things got really really bad at the end, not that he wasn't just as irrational about keeping her alive to the last.
posted by [insert clever name here] at 1:38 PM on May 12, 2015 [1 favorite]
I'm off work taking care of my husband today, because he had to have surgery to get a tooth extracted. There is gauze involved. I can't stop thinking about this story.
My sister in law passed away a year and a half ago. She had ALS. My brother took care of her for nearly two years while her body disintegrated, mostly on his own. He was over a thousand miles away, so family couldn't help. We wanted to. God knows we wanted to. And mom would fly out sometimes, and when she came back she had to take a few days to get over what she was seeing.
Toward the end, I think there was a fog of war that had hazed up my brother's mind. My sister in law had hit that point the author's wife did, where the drugs had changed her personality and she wasn't the funny, compassionate person she'd started as. She became petty and demanding, and she took most of it out on him. But my brother wanted to believe they'd somehow beat the odds, even though the odds in regards to ALS are always, always, always stacked against you.
She passed away in hospice. She'd gotten to the feeding tube point, and I don't know what happened, but she stopped breathing. He wasn't in the room when it happened. It was one of the few times he left her alone, one of the few moments of relief he dared to take. He still carries that around, I think.
They had a daughter, born early in the diagnosis, and she's now the focus of my brother's life. She looks so much like her mother, it's heartbreaking.
I'm pretty sure he wishes he'd had a Dane around. I wish he'd had a Dane around.
Thanks, to the Danes of the world. That was a hell of a thing you did.
posted by offalark at 3:13 PM on May 12, 2015 [12 favorites]
My sister in law passed away a year and a half ago. She had ALS. My brother took care of her for nearly two years while her body disintegrated, mostly on his own. He was over a thousand miles away, so family couldn't help. We wanted to. God knows we wanted to. And mom would fly out sometimes, and when she came back she had to take a few days to get over what she was seeing.
Toward the end, I think there was a fog of war that had hazed up my brother's mind. My sister in law had hit that point the author's wife did, where the drugs had changed her personality and she wasn't the funny, compassionate person she'd started as. She became petty and demanding, and she took most of it out on him. But my brother wanted to believe they'd somehow beat the odds, even though the odds in regards to ALS are always, always, always stacked against you.
She passed away in hospice. She'd gotten to the feeding tube point, and I don't know what happened, but she stopped breathing. He wasn't in the room when it happened. It was one of the few times he left her alone, one of the few moments of relief he dared to take. He still carries that around, I think.
They had a daughter, born early in the diagnosis, and she's now the focus of my brother's life. She looks so much like her mother, it's heartbreaking.
I'm pretty sure he wishes he'd had a Dane around. I wish he'd had a Dane around.
Thanks, to the Danes of the world. That was a hell of a thing you did.
posted by offalark at 3:13 PM on May 12, 2015 [12 favorites]
This piece really touched me and after reading the discussion here I guess I want to elaborate on why. I think it's extraordinary that Dane was so willing to just stand with this family and support their choices. I think it is awesome that Matthew was willing to share the details and moments he did.
But it also reaches me because my husband and I made the decision to take our first child off of life support 3 days after her birth. It was very hard for some people in our circle to be supportive of that choice. Others were amazingly so because it was in line with their views. Only a few have been able to sit with the ambiguity that my husband and I live with.
We made the best choice we could at that time but...there is no clarity. Whenever there's new stem cell research, even over a decade later, I know I wonder if one day we will be confronted with the idea that if we had just kept her alive she would have had...recovery. A good week. Knowing our love. One peal of laughter. And you know? That's okay, that uncertainty. We made a huge decision. It has that weight. It should.
It is so hard sometimes to just let an experience or a story standing in its uncertainty and messiness. As a reader, as an editor, as a friend. But this one does, and Esquire let it do so. It's not pro- or anti- anything but, I think, love, and even that is complicated.
posted by warriorqueen at 3:23 PM on May 12, 2015 [33 favorites]
But it also reaches me because my husband and I made the decision to take our first child off of life support 3 days after her birth. It was very hard for some people in our circle to be supportive of that choice. Others were amazingly so because it was in line with their views. Only a few have been able to sit with the ambiguity that my husband and I live with.
We made the best choice we could at that time but...there is no clarity. Whenever there's new stem cell research, even over a decade later, I know I wonder if one day we will be confronted with the idea that if we had just kept her alive she would have had...recovery. A good week. Knowing our love. One peal of laughter. And you know? That's okay, that uncertainty. We made a huge decision. It has that weight. It should.
It is so hard sometimes to just let an experience or a story standing in its uncertainty and messiness. As a reader, as an editor, as a friend. But this one does, and Esquire let it do so. It's not pro- or anti- anything but, I think, love, and even that is complicated.
posted by warriorqueen at 3:23 PM on May 12, 2015 [33 favorites]
If you look through my commenting history you will see that I have had a family member go through terminal illness. I've cleaned the shit, I've been covered in vomit, I've felt my heart stop looking at a scan which shows the relentless movement of a cancer. I've watched a strong body and mind decay as cancer engulfed it like mold.
It's not simple. It's never simple. Once I'd have also said that I could never bear to put my loved ones through this. But looking back, seeing the swift slope down which my family descended into hell, it's really not that simple. At what point do you decide that the person in front of you would truly not choose to live like this had pain and indignity not become a part of their daily life? Your entire definition of 'a good day' changes - a day without pain or with a smile in the midst of the daily diaper explosion becomes a good day and the basis for your next 'decision'.
In these circumstances, there are no choices, you do what you have to do. Nursing someone through terminal illness changes your world forever. You become an alien to humanity, and this is demonstrated by this thread in which its clear who has and who hasn't experienced these so-called choices and decisions first hand or experienced the altered reality of terminal illness.
Our one 'choice' was to stay at home and let illness take its inevitable course amidst family rather than at a hospital where invasive procedures would be prescribed, and this was informed by Atul Gawande's articles on end of life care in the New Yorker. But was this a 'decision'? Had the final end been less swift would that 'choice' have evaporated like a mist in the midst of the immediate imperatives of caregiving? Even if it had, I don't think I would have had regrets because I would have recognized the alternate reality of terminal illness.
My parent died in sleep at home, with breathing growing slower and slower until it stopped. I wasn't there, though I was on my way and didn't find out what had happened till I opened the front door. Before I arrived there was a farcical twenty minutes as the caregivers, who were family members, tried to work out if my parent was indeed dead. Even that decision is not a clearcut one.
posted by sockofdreams at 6:38 PM on May 12, 2015 [11 favorites]
It's not simple. It's never simple. Once I'd have also said that I could never bear to put my loved ones through this. But looking back, seeing the swift slope down which my family descended into hell, it's really not that simple. At what point do you decide that the person in front of you would truly not choose to live like this had pain and indignity not become a part of their daily life? Your entire definition of 'a good day' changes - a day without pain or with a smile in the midst of the daily diaper explosion becomes a good day and the basis for your next 'decision'.
In these circumstances, there are no choices, you do what you have to do. Nursing someone through terminal illness changes your world forever. You become an alien to humanity, and this is demonstrated by this thread in which its clear who has and who hasn't experienced these so-called choices and decisions first hand or experienced the altered reality of terminal illness.
Our one 'choice' was to stay at home and let illness take its inevitable course amidst family rather than at a hospital where invasive procedures would be prescribed, and this was informed by Atul Gawande's articles on end of life care in the New Yorker. But was this a 'decision'? Had the final end been less swift would that 'choice' have evaporated like a mist in the midst of the immediate imperatives of caregiving? Even if it had, I don't think I would have had regrets because I would have recognized the alternate reality of terminal illness.
My parent died in sleep at home, with breathing growing slower and slower until it stopped. I wasn't there, though I was on my way and didn't find out what had happened till I opened the front door. Before I arrived there was a farcical twenty minutes as the caregivers, who were family members, tried to work out if my parent was indeed dead. Even that decision is not a clearcut one.
posted by sockofdreams at 6:38 PM on May 12, 2015 [11 favorites]
The article reminded about one of most scary books I've ever read: "A very easy death" by Simona de Beauvoir:
http://www.amazon.com/Death-Pantheon-Modern-Writers-Series/dp/0394728998
it's a very powerful and great written documentary book about death of her mother, and it's definitely worth reading.
posted by usertm at 12:41 PM on May 13, 2015
http://www.amazon.com/Death-Pantheon-Modern-Writers-Series/dp/0394728998
it's a very powerful and great written documentary book about death of her mother, and it's definitely worth reading.
posted by usertm at 12:41 PM on May 13, 2015
I thought it was really telling that the author and Dane 'joked' (or perhaps promised), about killing each other, not Nicole, the wife.
I had a deep sense from that article that she didn't want to die, and the article from SoFlo1 reinforced that.
posted by Elysum at 3:47 PM on May 14, 2015 [2 favorites]
I had a deep sense from that article that she didn't want to die, and the article from SoFlo1 reinforced that.
posted by Elysum at 3:47 PM on May 14, 2015 [2 favorites]
bitter lol @ people armchair quarterbacking this kind of situation
caring for dying loved ones is literally one of the most painful and complicated parts of the human experience
second only to being the one who is actually dying
posted by Sticherbeast at 12:50 AM on May 15, 2015 [6 favorites]
caring for dying loved ones is literally one of the most painful and complicated parts of the human experience
second only to being the one who is actually dying
posted by Sticherbeast at 12:50 AM on May 15, 2015 [6 favorites]
"He wasn't in the room when it happened. It was one of the few times he left her alone, one of the few moments of relief he dared to take. He still carries that around, I think."
Happened with my dad. The hospice people say it usually goes like that, they specifically wait until you're out of the room so that you don't have to see it.
posted by jenfullmoon at 11:13 AM on May 16, 2015
Happened with my dad. The hospice people say it usually goes like that, they specifically wait until you're out of the room so that you don't have to see it.
posted by jenfullmoon at 11:13 AM on May 16, 2015
I just sent what may be my last card to a relative who has dementia. I mean to see him soon, but it may not be soon enough. It has mountains on it. He loves mountains. He lived there, until he couldn't. He'll like it. Won't he? He was so happy to get my last card, even though he thought it was from my uncle.
There was never a day or a diagnosis that would have told him to think about departing -- if indeed he ever would have. He's a fighter by nature, and I expect if he had wanted to die, he would have done it. And then, of course, there's the expense, and those who might have wanted to avoid it. So it is best for all concerned that he is where he is, even though I would never want to be where he is. I believe in the right to die, but I am not blind to its societal implications.
One of the many, many reasons I am lucky to have my family is that only one person in my direct line of descent has had Alzheimer's. The rest just got old. My grandfather's tinkering with cars in his late 80s. I've always hoped this meant that I would dodge that particular bullet. But whether or not that's so, I think it's made it more difficult for me to have serious conversations about dementia-related plans with my parents, because they don't expect it either.
posted by Countess Elena at 12:27 PM on May 16, 2015 [1 favorite]
There was never a day or a diagnosis that would have told him to think about departing -- if indeed he ever would have. He's a fighter by nature, and I expect if he had wanted to die, he would have done it. And then, of course, there's the expense, and those who might have wanted to avoid it. So it is best for all concerned that he is where he is, even though I would never want to be where he is. I believe in the right to die, but I am not blind to its societal implications.
One of the many, many reasons I am lucky to have my family is that only one person in my direct line of descent has had Alzheimer's. The rest just got old. My grandfather's tinkering with cars in his late 80s. I've always hoped this meant that I would dodge that particular bullet. But whether or not that's so, I think it's made it more difficult for me to have serious conversations about dementia-related plans with my parents, because they don't expect it either.
posted by Countess Elena at 12:27 PM on May 16, 2015 [1 favorite]
This really is a strong case for euthanasia. I would never want to subject my family to a long protracted and messy death.
Your life isn't your own and decisions like these aren't yours to make. Short, clean, decided deaths are historically very unprofitable.
posted by turbid dahlia at 3:27 PM on May 17, 2015
Your life isn't your own and decisions like these aren't yours to make. Short, clean, decided deaths are historically very unprofitable.
posted by turbid dahlia at 3:27 PM on May 17, 2015
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