franzen
2011-06-13 05:42 pm UTC (link)

I -- I understand, I think. My mind has always been the most important thing to me and dementia is my number one fear (along with any kind of brain injury). If he comes to a place where he's ready, then the choice should be his. Slate had an article on the topic.

Or in the words of Jonathan Franzen --

After we’d kissed him goodbye and signed the forms that authorized the brain autopsy, after we’d driven through flooding streets, my mother sat down in our kitchen and uncharacteristically accepted my offer of undiluted Jack Daniel’s. “I see now,” she said, “that when you’re dead, you’re really dead.” This was true enough. But, in the slow-motion way of Alzheimer’s, my father wasn’t much deader now than he’d been two hours or two weeks or two months ago. We’d simply lost the last parts out of which we could fashion a living whole. There would be no new memories of him. The only stories we could tell now were the ones we already had.

Alzheimer's is a wrenching experience for both the afflicted and all those close to him. I hope Pratchett's fandom lets him make the choice that he feels is right for him. Though I'm imagining a lot of "SAVE TERRY PRATCHETT" Twitter petitions. :|

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	quantumreality 2011-06-13 05:56 pm UTC (link)
	IAWYC. I've never read his books but I have heard of him over the years and I'm saddened to hear he has Alzheimer's. Hopefully he'll be able to finish out his life well in the time he has left. (Reply to this)(Parent)

chibikaijuu
2011-06-16 07:47 pm UTC (link)

My grandfather has Alzheimer's, and it got a lot worse this January when he caught pneumonia. He still mostly recognizes people, but he can't take care of himself. My grandmother can't take care of him either (for one thing, she's a foot shorter than he is - she had to leave him half on the floor when he fell out of bed, until the ambulance showed up), but even though she's said she'll consider an assisted living center, every time my father or one of his siblings makes an appointment to look at one, she either refuses to go, or drags her feet and then declares that she doesn't like it. (They also live on the opposite coast from us, so Dad flew out there for a while, but can't be there constantly, and he's the oldest child and I think she listens to him the most.)
It's incredibly stressful and I'm not even there. I'm also terrified that my father and my brother will get it at some point (my great-grandfather died of it).

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	trialia 2011-07-01 08:13 pm UTC (link)
	Generally...yes. Most of the devoted Pratchett fans will probably be incredibly saddened by this, but respect that it is his life to do with what he wants. He's been very open and honest with his fandom about this stuff, and I think that's garnered more respect than not. (Reply to this)(Parent)

thoms
2011-06-13 05:57 pm UTC (link)

I work with Alzheimer's patients. A lady I sit with on weekends has gotten to where she's bedfast, at times doesn't even know who she is, needs to be spoon-fed, etc. etc. She got to that from being an extremely active member of our community. And I can't imagine that she anticipated this end to her life, or that she wouldn't have actively considered this knowing what her life has become.

If this is the decision that Sir Pratchett has made, then I can only support it, and hope that he gets to go with some dignity.

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	finchbird 2011-06-13 07:17 pm UTC (link)
	I've been wanting to read more of Pratchett's work since I read Good Omens but haven't had the chance yet. Whatever happens ultimately I only wish the best for him and his loved ones. (Reply to this)

	the__ivorytower 2011-06-13 07:30 pm UTC (link)
	We wish Pratchett the best, no matter what his decision is. This. My uncle committed suicide, and I will never be absolutely certain as to why, but I do sincerely believe that he was suffering, and that he isn't in pain any more. (Reply to this)

	frenzy 2011-06-13 07:30 pm UTC (link)
	Wait, whoa, wait. I was under the impression that he was still doing really well. I mean, I guess it's never too early to plan ahead--this is just kind of shocking. (Reply to this)(Thread)

	jaseroque 2011-06-13 07:53 pm UTC (link)
	I'm HOPING, since the article is a bit ambiguous, that signing means that at some point in the indefinite future you will be able to utilize their services without all of the red tape. Otherwise, yeah, it does seem awfully sudden. (Reply to this)(Parent)(Thread)

pantyless_angel
2011-06-13 08:40 pm UTC (link)

I hope that is the case too. I can't imagine finishing the paperwork is going to mean he immediately has to through with it, that seems kind of absurd.
I can understand wanting to get a start on something like this before other people can step in and make accusations that he is no longer of sound mind to make such decisions for himself. Ending up in a situation like that is one of my worst nighmares.

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	harrylovesron 2011-06-13 09:12 pm UTC (link)
	I agree that this is the most likely reason- he was quoted in the article as saying he still has a book to get done, so I'm guessing he wants to make sure all of his loose ends are tied up while there's still time and the choice is his and his alone to make. (Reply to this)(Parent)

platedlizard
2011-06-13 09:26 pm UTC (link)

In Oregon once you finish all the requirements for the Death with Dignity Act they give you a prescription, and it's up to you when you decide to take it. Most people who get the prescription never take it. It's about taking control of your end-of-life, not necessarily ending it all right there. I don't know how Sweden does it, but I imagine that it might be something similar, the paperwork simply authorizing a fatal prescription, not actually forcing you to take it.

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	eilan 2011-06-13 09:53 pm UTC (link)
	Switzerland, not Sweden, and you travel there when you are ready. (Reply to this)(Parent)(Thread)

	platedlizard 2011-06-14 02:57 am UTC (link)
	Thanks, I guess I wasn't reading closely enough. (Reply to this)(Parent)

tequilaghost
2011-06-14 11:13 am UTC (link)

This is my experience, too.

My mother has an illness that will eventually be fatal. She may have weeks left, or she may still have long, good years left--due to its erratic progression, nobody really knows. When she was going through a very bad patch, she obtained a fatal prescription from her doctor.

She recovered from her bad patch and is in a much better place now, and I'm glad as hell she didn't have to use it, but seeing that it gave her a measure of peace just to have the option made me reconsider my opinion on this whole issue.

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	platedlizard 2011-06-14 07:33 pm UTC (link)
	hug I'm sorry to hear about your mom, that's pretty tough. The closest my family came to that was my great-grand parents signing a living will with a DNR order, and they were in their 90s. Sad, but expected, you know? I can't imagine losing my mom like that. I wish the best for you and your mom. (Reply to this)(Parent)

	frenzy 2011-06-13 09:50 pm UTC (link)
	That does make perfect sense. I was just a little weirded out by the idea that, once he's got the arrangements made and his loose ends tied up, he could just...decide to die, at any moment (even though I'm sure it would be a thoughtful decision, and obviously it's his to make regardless). (Reply to this)(Parent)

	lyrangalia 2011-06-13 08:55 pm UTC (link)
	I wouldn't be surprised if part of the signing includes certifying that he's mentally sound to sign the paperwork, which with Alzheimer's might mean doing it early. (Reply to this)(Parent)(Thread)

	kookaburra 2011-06-13 10:06 pm UTC (link)
	Yeah. IMO, after caring for patients with Alzheimer's, it's better to do it too early than wait until it's too late. (Reply to this)(Parent)

	kita0610 2011-06-14 01:31 am UTC (link)
	Yes, this. Also he has early onset Alzheimer's which typically has a very fast rate of deterioration, unfortunately. G-d bless him. The world is going to be a sadder place without him in it. (Reply to this)(Parent)

	azazello 2011-06-13 10:15 pm UTC (link)
	My understanding from what I read in the UK papers this weekend is that he is preparing a decision against a day when he may be incapable of making one. I got no clear impression that he intends to die shortly, just that he intends to leave with dignity and at a time of his choosing, fully aware. I am lost in admiration for his courage and openness. (Reply to this)(Parent)(Thread)

	frenzy 2011-06-13 11:15 pm UTC (link)
	That's good to know. I wondered whether it was something like that, or if his condition had worsened and I'd missed hearing about it. I'm glad he's still doing well enough to make all these decisions for himself, and taking the opportunity to do so. (Reply to this)(Parent)

	trialia 2011-07-01 08:16 pm UTC (link)
	This. (Also, if he's working on a book, this cannot be Snuff, which is due out in September, and must almost certainly be one due out next year sometime, because Snuff will already be with the publishers by now.) (Reply to this)(Parent)

	tehrin 2011-06-13 08:23 pm UTC (link)
	I was hoping the lj-cut was phrased wrong, but OH MY GOD, TERRY. I hope it doesn't come to this though I understand why. (Reply to this)

	lyrangalia 2011-06-13 08:56 pm UTC (link)
	... Godspeed, Sir Terry, whatever you decide to do. (Reply to this)

	kaen 2011-06-13 09:54 pm UTC (link)
	That's heartbreaking, but at the same time I absolutely understand his choice. After watching my grandpa's mental deterioration from the disease and the effect it had on everyone around him I decided that I'd do the same thing if I ever followed in grandpa's footsteps. (Reply to this)

	sandglass 2011-06-13 10:51 pm UTC (link)
	The problem with this comm is whenever I see someone's name on it, I immediately think they're being a douche. I should know better with wonderful Pterry. Echoing the wishes that whatever he chooses, he is happy and comfortable. (Reply to this)(Thread)

	bemysty 2011-06-14 07:02 pm UTC (link)
	My thoughts exactly :\| I should've known this wouldn't be the case here. (Reply to this)(Parent)

	sgaana 2011-06-14 01:21 am UTC (link)
	I never knew that he devoted his energy to working for the right to assisted suicide -- and I didn't know that my respect and admiration for him could increase, at this stage. But it has. (Reply to this)(Thread)

mmanurere
2011-06-14 09:02 am UTC (link)

It's one of those options that, while you hope you'll never need it, you certainly hope will be there if you do. That Pterry has ended up in a situation where he at least needs to know that the option will be there if he needs it takes nothing away from the value of his work in favor of keeping that option open for himself or any of the rest of us who may need it. I hope that the time when he feels the need to exercise that option doesn't come soon -- just as I hope the same for myself and anyone who has to look that situation in the eye with more immediacy than I do.

(Not contradicting you here, just expanding on your point.)

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	jaythenerdkid 2011-06-14 04:07 am UTC (link)
	Oh my. Sir Pterry is my favourite author and also someone for whom I have a lot of respect. This is truly heartbreaking. Why is it always the good people? (Reply to this)

	theninth 2011-06-14 05:25 pm UTC (link)
	PTerry is certainly a wise man. I would do the same in his situation. It makes the most sense, really. He can go when he's ready, after he's had a chance to tell everyone goodbye. He can go with dignity. I admire him for this. (Reply to this)

	keleri 2011-06-16 02:16 am UTC (link)
	Aw man. :( I shall miss Pterry terribly. One of my close relatives actually went through an assisted suicide with Dignitas, so I can say he'll be treated excellently. (Reply to this)

chibikaijuu
2011-06-18 09:40 pm UTC (link)

I'm saddened to see this, but I don't blame him at all. He has a degenerative disorder that means that he might later not be able to sign the paperwork. It doesn't mean that he's going to go through with it now, just that he will be able to, if that's still what he wishes, to later take advantage of their services while he still has most of his mind.

Like I said above, my paternal grandfather has Alzheimer's and his father (and maybe his mother?) died of it, and I believe so did his brother. It's stressful and awful for everyone involved, and even in places where assisted suicide is legal, once the patient is past the point where they can no longer legally make their own decisions, "Death With Dignity" is off the table.

My maternal grandfather was a member of the Hemlock Society (I don't know about my grandmother). He did not die in a state with legal physician-assisted suicide, but he ended up being fairly lucky - he lived into his 80s, and when he got cancer, once it started actually making him sick it progressed quite rapidly, and he wasn't in pain (or on so many painkillers that he was completely out of it) for very long (I think it took about six months in total from "feeling pretty good for an 82-year-old man with two replacement hips, who narrowly escaped the Holocaust, had lost his wife seven years prior, and a daughter fifteen years prior" to "dead", and he was always very well-prepared, and my mother was sole heir, so there wasn't a big fuss dealing with legal and financial affairs). Along the same line, both of my parents have told me, now that I'm an adult, that if it comes down to my decision, they want the plug pulled. I have been raised in an atmosphere that agrees strongly with Pterry - you have the right to die with dignity, to say your goodbyes and not be kept alive once you are terminally ill and in pain and incapable of experiencing your life (which doesn't mean, oh, I've been diagnosed with a degenerative disorder, kill me now", or "I've had a stroke and life is very hard, kill me now" - one of my great-grandmothers had a severe stroke shortly before I was born, and didn't live long after, but was still fully there - I was the first grandchild from her daughter's line, and when my father brought me in to see her, her eyes widened and her whole face lit up, even though she could no longer speak - I don't think she wanted to miss that, even though she was paralyzed and unlikely to live longer, and I wouldn't have wanted it taken from her for the world.)

Sorry about the TL;DR - stuff like this has been on my mind a lot lately.

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staroverthebay
2011-06-19 03:13 pm UTC (link)

I don't know why I'm shocked. The man is a class act himself, and doctor-assisted suicide is something I'm in favor of, especially after seeing my grandmother be put through agonizing test after agonizing test when all she wanted was pain medications and hydration to the end. I understand that doctors have an obligation to help the sick and dying, but at some point, you're prolonging the inevitable. At some point, modern medicine is the only thing keeping a person alive, when even the will has gone, and that goes beyond the Hippocratic Oath. What value is there to prolonged life if that life is spent in hospice without the will to even live at all?

TL;DR Sir Pratchett, I salute you. You are a class act and if this helps you to remain happy and worry-free for the remainder of your life (however long that might be) then I pray that your decision is worth all the scrutiny you will endure in the coming days/months/years.

When I have some spare money, I need to buy a couple more of his books.

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zebeckras
2011-06-19 04:07 pm UTC (link)

*Sigh* I heard about this via a dear friend who is a huge fan of his and who is also hugely anti-suicide, so I've been struggling not only with the tremendous tragedy of all of this and the awful no-way-to-win choice that Terry Pratchett is facing, as well as her statements that "ALL suicide is selfish" and he should be suffering through this with strength and dignity so that he can set an example to other Alzheimer's victims. It's... not easy to listen to.

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	trialia 2011-07-01 08:57 pm UTC (link)
	I can imagine. I wouldn't want to listen to that, either. I think if anyone comes up with that at DWcon, they'd be pretty quickly shut down. :/ (Reply to this)(Parent)

countess_baltar
2011-06-20 11:27 am UTC (link)

I'm going to post this one time only.

I'm totally against physician-assisted suicide.

My sister's "official" cause of death at 26 was likely listed as "complications from surgery of a biopsy for a brain tumor". The immediate cause of death was an overdose of morphine administered by a physician or nurse.

The lingering question for my family will always be: "Did medical personnel deliberately administer an overdose because they decided it 'was the kinder thing to do'?"

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	boutdpapier 2011-06-20 02:22 pm UTC (link)
	I'm sorry. In theory I'm 100% for it – everyone should get to end their life if that's what they really want – but the possibility for abuse is just so great and scary that I can't say I support legalisation. (Reply to this)(Parent)