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Terry Pratchett Considers Assisted Suicide 838

Posted by CmdrTaco
from the making-the-best-of-the-worst dept.
cHALiTO writes "Beloved science fiction and fantasy writer Terry Pratchett has terminal early-onset Alzheimer's. He's determined to have the option of choosing the time and place of his death, rather than enduring the potentially horrific drawn-out death that Alzheimer's sometimes brings. But Britain bans assisted suicide, and Pratchett is campaigning to have the law changed. As part of this, he has visited Switzerland's Dignitas clinic, an assisted suicide facility, with a BBC camera crew, as part of a documentary that will include Britain's first televised suicide. Pratchett took home Dignitas's assisted suicide consent forms."
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Terry Pratchett Considers Assisted Suicide

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  • by Dyinobal (1427207) on Tuesday June 14, 2011 @03:56PM (#36440568)
    Well shit that sucks.
    • by Bobfrankly1 (1043848) on Tuesday June 14, 2011 @05:07PM (#36441874)

      Well shit that sucks.

      Well there's a good chance he might forget the whole idea...

  • by geminidomino (614729) on Tuesday June 14, 2011 @03:58PM (#36440612) Journal

    Half of me wants to cheer him on in the name of "the good fight." The other half wants to cry. I read a hell of a lot, but Discworld has given more joy than probably any other series.

    • Re:Well damn... (Score:5, Insightful)

      by jd (1658) <imipak @ y a h o o .com> on Tuesday June 14, 2011 @04:41PM (#36441410) Homepage Journal

      Personally, I'd prefer it if the stem cell researchers could find a way to reverse the damage and bring him up to full health. It's not an either-or situation. Every day TP is alive and well, there is a chance (however microscopic) of a breakthrough. However, I also respect the fact that you've got to draw the line somewhere and I respect where he's drawn his. The only question that remains is whether the US (the country capable of funding R&D at the necessary rate) will actually back stem cell research enough to save him and countless others. Not just from Alzheimers but from any death that results from a relatively small number of cells that cannot be repaired by the body unaided.

      • Personally I would rather not see research limited so narrowly. Stem cell research is just one avenue, and it's not yet known whether it's the panacea many are hoping for. Certainly more research is needed here; but not at the expense of other paths.
        • by jd (1658)

          There's no way to repair dead brain cells and even juvenile brains can't repair that degree of damage even though their neurogenesis rates are the maximum that can be achieved by the body. That limits you to hot-swapping the dead bits with living bits.

          Further, since the tau protein is encapsulating neurotoxins, any alternative will allow those neurotoxins to be reintroduced to living parts of the brain. That places very significant limits on your activity.

      • by Niedi (1335165)

        Personally I'd also prefer if we all had personal flying unicorns to allow us to commute with minimal CO2 and without needing fossil fuels...

        Or more to the point: ain't gonna happen in his lifetime. Not a bleeding chance in hell. The stem cell thing can be VERY roughly compared to the following: we know there is "metal" in this thing called the computer to conduct electricity which leads to information flow. We hardly have any idea how a computer works whatsoever, except that it seems to be build around "tr

    • Re:Well damn... (Score:5, Insightful)

      by Luckyo (1726890) on Tuesday June 14, 2011 @05:27PM (#36442198)

      There is a funny fact about assisted suicide. If Alzheimer/cancer/similar incurable painful disease would be monitored by a veterinarian without putting the animal down, he would be sued for animal torture. And lose.

      It's quite telling when our current "general" code of ethics is against torturing animals in this way, but not against torturing humans in the same way.

      • Re:Well damn... (Score:5, Insightful)

        by Grishnakh (216268) on Tuesday June 14, 2011 @06:33PM (#36443292)

        It basically shows that our laws are written by religions. Putting an animal down when its terminally ill is seen as merciful, because we don't want it to suffer needlessly.

        However, people aren't allowed to commit suicide in the same circumstances to avoid needless suffering, and there's only one possible reason: religious proscriptions against suicide. And also because humans are seen as completely different from animals, a viewpoint which again is rooted in religion.

        It would be nice if the first-world nations (and maybe others too) would pour some more funding into research to combat these diseases. You'd think that maybe some of these greedy leaders would be interested in more treatments and cures for old-age diseases, considering most of them aren't that far away from old age themselves and thus have a significant chance of acquiring these diseases themselves.

        • No there's another potential reason.
          Granny could have a large inheritance and the kids could encourage her to top herself because they want the money. Any law allowing assisted suicide has to cope with the concept of relation coercion. It's not a good society where others can decide that someone has become a drain on society. By making it illegal to help someone commit suicide you are trying to regulate society to not get to the situation where people are encouraged to believe that their time is up. Much as

      • Just let those that want to and have nothing to live for die... My granny had Alzheimer's. My mum nursed her at our home and I watched her go from almost normal to totally gone. She died few days before my birthday seven years ago. It was sad but my mum didn't cry much, because as she said, she had been gone for a long time. The most painful time was when she could still understand things a little bit... When she could still see that everything she tried to do came out wrong... and then she was so gone tha
  • by smileygladhands (1909508) on Tuesday June 14, 2011 @03:58PM (#36440616)
    It is every person's right to decide how they die. Not the governments.
    • by vlm (69642) on Tuesday June 14, 2011 @04:06PM (#36440742)

      It is every person's right to decide how they die. Not the governments.

      Its the UK, a different culture. There they believe its the governments right to totally control how you live... death is just the endgame, and not surprisingly, the govt wants to stay in charge right till the end.

      The situation in the USA is weirder, with religious whackos trying to write their gods words into law, kind of an "American Taliban" thing.

      Neither side understands each other.

      • by mr_lizard13 (882373) on Tuesday June 14, 2011 @04:17PM (#36440930)

        Its the UK, a different culture. There they believe its the governments right to totally control how you live...

        With respect, that's horse-shit.

      • I find this attitude confusing. How in the world can 'teh govermment' keep you from committing suicide? They can't and there is nothing preventing TP from doing it himself right now. There are so many effective ways you could do it with any imagination at all in a peaceful, easy way. Regardless of your religious boogeyman argument the only thing the government outlaws is another party assisting you in doing it and I can easily see why, as there are far more cons than their are pros to that [in my opinio
        • by Entropius (188861)

          Consider a late-stage cancer patient who is unable to get out of bed. Is it legal or not for a doctor to, upon request and upon determination that the person is competent, present that person with a large dose of barbituates and say "Take this if you want to die"?

          I believe this should be legal. So do many other people, including Sir Pratchett. It's a damn shame that his life may end this way at such a young age, but to him it may be better than the alternative.

      • by Dragon Bait (997809) on Tuesday June 14, 2011 @05:40PM (#36442408)

        The situation in the USA is weirder, with religious whackos trying to write their gods words into law, kind of an "American Taliban" thing.

        Unfortunately, it's not just the religious whackos that want to tell you how to live. The "progressives" do as well -- to the point that as a liberal, I can't tell the real difference between the neo-fascist, religious whackos on the right from the neo-fascist, Progressive control-freaks on the left.

        Yes, sure, I know they have different positions, but they both want to tell me how to live my life.

    • by fish_in_the_c (577259) on Tuesday June 14, 2011 @04:10PM (#36440810)

      Making suicide legal is giving the 'right' to decide when to die to the government , not the person, because the government will always decide , who is eligible for that 'right'. More so , it destroys protection for the vulnerable and the week, because it de-facto places the 'guardian' ( often the state) of a person in the place of deciding if they 'would want' to live.

      • Re: (Score:3, Insightful)

        he government will always decide , who is eligible for that 'right'

        As opposed to right now, where they decide that no one has that right? You could make that same argument against every protection in the bill of rights, and it would make just a little sense.

        it de-facto places the 'guardian' ( often the state) of a person in the place of deciding if they 'would want' to live.

        Nonsense. Someone deciding if someone else lives or dies is not suicide, by definition.
        • by KDR_11k (778916) on Tuesday June 14, 2011 @04:44PM (#36441460)

          The charter of Human Rights states that the right to life is inalienable. The UK, like any EU member state, is bound to it. Adding exceptions to a basic human right is extremely dangerous.

          • Adding exceptions to a basic human right is extremely dangerous

            If the charter tries to forbid the voluntary cessation of that right on the part of the individual (I don't know that it does, but I assume by context. Otherwise, why the hell bring it up) then it's pretty much a sham anyway.

            • by Skidborg (1585365)
              The problem is that there are many ways to drive a person to "voluntary" assisted suicide...
          • by CharlyFoxtrot (1607527) on Tuesday June 14, 2011 @05:01PM (#36441764)

            The charter of Human Rights states that the right to life is inalienable. The UK, like any EU member state, is bound to it. Adding exceptions to a basic human right is extremely dangerous.

            "inalienable[in-eyl-yuh-nuh-buhl, -ey-lee-uh-]
            –adjective
            not alienable; not transferable to another or capable of being repudiated: inalienable rights."

            In other words the right to life rest solely in the hands of the individual, which would extend to the right to end that life. No other can decide on that right. I'm lucky enough to life in a state with euthanasia laws, hopefully I won't ever have to use them but I'm glad to have the option.

          • by bug1 (96678) on Tuesday June 14, 2011 @06:11PM (#36442940)

            "Right to life"

            A right doesnt have to exercised or claimed in order to be valid.

            I have free speech rights, that doesnt mean i have to go around making a noise... I can choose to be quiet and still have the right to speak freely.

            Giving a person the right to die doesnâ(TM)t take away their right to life.

      • by Anonymous Coward on Tuesday June 14, 2011 @04:28PM (#36441166)

        I would respectfully point out that giving the government the authority to forbid and even punish suicides and those who would assist them takes the rights away from the individual in the first place. The government already has the right to kill you through legal means, and it has the right to forbid you to end your own life if you are in a position you find to be a 'fate worse than death'. Neither political party seems to be interested in fostering or supporting individual rights, but rather want to take rights away. The concept that suicide is an unforgivable sin comes from an attempt to control the lives of people who have no hope; that we continue to foster this method of keeping slaves from escaping into death hints at a very distasteful framework supporting our society.

    • by 0100010001010011 (652467) on Tuesday June 14, 2011 @04:33PM (#36441252)

      How to Die in Oregon [imdb.com].

      Very Very depressing (but good) movie. Don't expect to come out of it in a good mood.

      From its opening scene, where a terminally ill cancer patient takes a lethal dose of Seconal and literally dies on camera, it becomes shockingly clear that How to Die in Oregon is a special film. In 1994, Oregon became the first state to legalize physician-assisted suicide. As a result, any individual whom two physicians diagnose as having less than six months to live can lawfully request a fatal dose of barbiturate to end his or her life. Since 1994, more than 500 Oregonians have taken their mortality into their own hands.

      In How to Die in Oregon, filmmaker Peter Richardson (Clear Cut: The Story of Philomath, Oregon screened at the 2006 Sundance Film Festival) gently enters the lives of the terminally ill as they consider whether—and when—to end their lives by lethal overdose. Richardson examines both sides of this complex, emotionally charged issue. What emerges is a life-affirming, staggeringly powerful portrait of what it means to die with dignity.

  • Last Wishes (Score:5, Insightful)

    by Renraku (518261) on Tuesday June 14, 2011 @03:58PM (#36440624) Homepage

    If I were in his situation, I'd do about the same thing. I'd fill out the forms to be carried out in a few months. That way if he stopped progressing he could just do whatever, but if he kept progressing he may not be lucid so they could do their thing.

    We'll miss you, Terry, but you have the power over your own life and I respect that.

    • Re:Last Wishes (Score:5, Interesting)

      by jimicus (737525) on Tuesday June 14, 2011 @04:11PM (#36440826)

      If I were in his situation, I'd do about the same thing. I'd fill out the forms to be carried out in a few months. That way if he stopped progressing he could just do whatever, but if he kept progressing he may not be lucid so they could do their thing.

      Not as simple as that. AIUI, you have to be able to get there under your own steam and take the drugs (or at least ask for them to be administered) in the full understanding of what they are.

      So you can't leave instructions with a relative to cart you off when you get to the point that you're lucid for maybe an hour a day. You more-or-less have to go over there earlier than you'd otherwise like.

      (ICBW, mercifully it's not something I've ever had to look into in great detail).

      • Re:Last Wishes (Score:5, Interesting)

        by SMoynihan (1647997) on Tuesday June 14, 2011 @04:24PM (#36441080)

        I heard an interview with Pratchett on the radio (Ireland). He stated that the singular tragedy was this: The guy in this film had to cut short his life while he could still enjoy it, for this very reason.

        He had to travel, and to end his existence, while still lucid and still capable.

        All for fear he would reach a point of no return, and no hope of exit.

  • The powers that be do not like individuals making such important choices for themselves. They know what is better.

  • It's one thing to have a live news camera on scene when a crazy person jumps from a ledge or immolates themselves, but it's quite another when a show is being created with the purpose of people profiting (non-profit? Ha!) off a man's death. Western civilization is going down fast; I remember a time when this very scenario was the nightmare end of a slippery slope argument...
    • by Mindcontrolled (1388007) on Tuesday June 14, 2011 @04:07PM (#36440766)
      The end of Western Civilization's downward slope is televising a man making his own decision about how to die in dignity, fighting for all the others that are denied this right today? That's what you call da nightmare? I seriously don't want to know the rest of your so-called "morals"...
    • Western civilization is going down fast; I remember a time when this very scenario was the nightmare end of a slippery slope argument...

      Conversations about difficult subjects mean that civilizations are going 'downhill'? How is that again? Yes, there are some important moral, social, political and practical questions about assisted suicide but not discussing them doesn't help answer any of that.

    • When a man makes a conscious decision that he wants to die, and asks them to film it so as to spread his political beliefs, they're hardly taking advantage of him.

      The death is happening regardless of it being filmed. You make it sound like the BBC offered to pay a family a million dollars for exclusive rights to make a movie so that they would change their minds and pull the plug. Western culture is doing just fine, despite countries like Britain and fundamentalists like you who can't handle letting peopl

    • While western civilization is certainly doing its part to invent the dystopian future, I'm really not seeing it here.

      An adult gives his informed consent to appear in a documentary about assisted suicide, in order to stimulate national discussion(and presumably advocate for his side against the current ban) of the individual's right to make medical choices according to their perceived good. Horribly, the documentary included a section chronicling the (not unmixed) aspects of the process, the emotional dif
      • by jasenj1 (575309) on Tuesday June 14, 2011 @05:24PM (#36442156)

        In the now "civilized world" death used to be much more common and intimate - the above poster provided several examples. Children got diseases and died, women died in child birth. Moving down the hierarchy a bit, people used to kill and eat their own animals. Death was an integral part of life.

        Recently we have pushed death away. Our food comes wrapped in plastic packages. Death happens in hospitals or nursing homes. Child mortality rates have fallen. We consider dealing with death "barbaric" or "primitive" or something for doctors or some such.

        Medical treatment has advanced to the point where we can keep people alive far beyond what would generally be called a worthwhile life; our brains and bodies wear out and degrade, but we can keep alive through drugs & treatments.

        The problem with suicide is that people often make the choice to take their own life when things are bad but may generally be expected to improve - jilted by a lover, bankruptcy, some other traumatic experience. Society has some obligation to keep people from making permanent decisions "in the heat of the moment".

        I fall in the camp of if a person's situation cannot be reasonably expected to improve - incurable disease that will turn agonizing or incapacitating, then let them choose to check out before they become too miserable. When that point is is hard to determine. If you are diagnosed with Alzheimer's or AIDs should society allow you to check out immediately?

        Tough questions. I wish Mr. Pratchett well.

  • Hmmm (Score:3, Insightful)

    by girlintraining (1395911) on Tuesday June 14, 2011 @04:02PM (#36440674)
    Conan the Barbarian and most of the characters of discworld would disapprove. If you're going to die, do it AWESOMELY.
  • pterry (Score:5, Insightful)

    by mseeger (40923) on Tuesday June 14, 2011 @04:03PM (#36440682)

    I was deeply saddened by the news last year when i heard of his illness. Terry Pratchett is still one of my favorite authors and i wish him a lot of time left.

    But i have to confess that i understand his reactions 100%. Rotting away with Alzheimer is my personal worst nightmare. Though i am not allowed to vote in the UK, i will give his initiative my full support whereever i can.

    I believe that, if you have don't have the right to end your own life, you are not free at all. My life belongs to me, but to no goverment, to no society and to no god.

    Yours, Martin

  • Good for him (Score:5, Insightful)

    by cpu6502 (1960974) on Tuesday June 14, 2011 @04:11PM (#36440820)

    Speaking as a libertarian:

    Unless the government is claiming ownership of your body (which apparently the UK government is), you should be able to terminate yourself any time you want - especially if you're faced with a terminal illness. By not allowing him to commit suicide the government is basically making Mr. Pratchett the property of the queen. What year is this? 1772?

    "The state of slavery is of such a nature, that it is incapable of being introduced on any reasons, moral or political; but only positive law, which preserves its force long after the reasons, occasion, and time itself from whence it was created, is erased from memory: it's so odious, that nothing can be suffered to support it, but positive law." - Judge Mansfield, Queen's Bench.

    • Re:Good for him (Score:5, Insightful)

      by vlm (69642) on Tuesday June 14, 2011 @04:20PM (#36440992)

      Speaking as a libertarian:

      Unless the government is claiming ownership of your body (which apparently the UK government is), you should be able to terminate yourself any time you want

      Nice try, but speaking as a libertarian worshipper of the free-market I would counter that you can't have a free market contractual obligation if one of the participants is bonkers crazy. And the assumption made by the doctors is anyone planning to off themselves is bonkers crazy. Furthermore that bonkers crazy dude, while perfectly sane, paid into the medical-industrial complex to receive mental health treatment when he's bonkers, just as he paid into the system to receive treatment for any other illness such as broken leg, so they need to uphold the contract and "treat" him. Much as a business contract is invalid if one of the signatories is bonkers crazy, a lunatic can't formally legally decide to off themselves.

      Most of the people trying to off themselves are, in fact, bonkers, which makes this pretty complicated. I suppose a legal competency hearing would probably be required for a judge to make a judgement that the dude is not, in fact, bonkers crazy.

      The place this needs fixing is in the mental health profession, not the contract upholding laws, etc. The other problem is the UK is horrifically infested with do-gooderism types of unnecessary laws, so you'd need to remove some clutter. The primary problem is the docs, not the lawyers/politicians.

      • Re:Good for him (Score:4, Insightful)

        by cpu6502 (1960974) on Tuesday June 14, 2011 @04:25PM (#36441114)

        >>assumption made by the doctors is anyone planning to off themselves is bonkers crazy.

        Assumption?
        Law is based upon proof, not assumption. Law is also based upon the assumption that everyone is 100% sane, and capable of making rational decisions, unless otherwise proved in a court of law. The anti-suicide UK law assumes that everyone is 0% sane, contrary to ~1000 years of precedent. The UK law is an irrational law and should be overturned by a judge, the same way Judge Mansfield overturned the irrationality of slavery.

      • Re:Good for him (Score:4, Insightful)

        by CastrTroy (595695) on Tuesday June 14, 2011 @04:43PM (#36441452) Homepage
        This strikes me as a catch-22. You can kill yourself if you aren't crazy, but the desire to kill yourself immediately proves you are crazy, thereby denying you the ability to kill yourself.
      • by jdavidb (449077)
        "Bonkers crazy" is often a subjective opinion. In fact it's a phrase often used simply to take away individual rights. I am currently of sound health and mind, and I have not granted the government the right to take over for me in the event of future mental incapacity on my part.
    • Re:Good for him (Score:4, Informative)

      by michael_cain (66650) on Tuesday June 14, 2011 @04:36PM (#36441320) Journal
      Short of locking him up, how is the state going to stop him from committing suicide? Everything you need for a quick painless death is available from your local well-stocked welding supply shop: a small tank of dry nitrogen, regulator, tubing, and breathing mask. Set it up so the mask is at a slight overpressure and you're in business: pass out after 30-60 seconds, heart stops beating with no chance of restarting after 10-12 minutes. Total cost probably less than £100.

      There's a woman in the US distributing instructions and selling partial kits [latimes.com] for doing much the same thing with a large plastic bag and a tank of helium from the party-supply store.

      How effective is it? One of the reasons that Halon fire suppression systems were banned was that leaks resulted in odorless Halon pooling under raised floors, and techs working on the cabling passing out and suffocating when they stuck their head down into the pool. The Russian Navy still uses it in submarines; in 2008, 20 people died [bbc.co.uk] when the fire suppression system was accidentally activated (the article contains an error; the Russian Navy subsequently issued a clarification that the gas involved was Halon, not freon).
    • by rkww (675767)

      I think you may be missing the point. Suicide is legal in the UK; assisting suicide is not, for the fairly obvious reason that a murderous relative could claim that 'they asked me to do it.' The police choose not to prosecute on occasion and that is a subtlety some people dislike. They would like to know exactly when it's okay to help somebody to die. As it stands the police and the courts will always ask questions; there is no exact formula for 'assisting' being legal. Generally though a doctor will increa

  • by QuasiSteve (2042606) on Tuesday June 14, 2011 @04:15PM (#36440892)

    It may be "Britain's first televised suicide", but PBS made a documentary on this topic before:
    http://www.pbs.org/wgbh/pages/frontline/suicidetourist/ [pbs.org]

    Note that it was widely slammed as being some manner of disguised snuff movie. Watch it and make up your own mind.

    Personally I think such statements are more indicative of the taboo that still rests on euthanasia (and death in general) than that they have any basis in the film's content or presentation.

  • by peter303 (12292) on Tuesday June 14, 2011 @04:16PM (#36440924)
    I visualize dementia as slipping deeper and deeper into a dream-fog. At some point I would stop caring about things. At some point I'd be incapable of executing something as complicated as a suicide. There is an intermediate state where the patient can get very frustrated and angry at not being able to do things. And possibly paranoid at the strange new things happening around them.

    It is horrific to you loved ones and care givers. They'd experience you disappearing and require lots of care. If you were not rich, then any inheritance would go away too.

    Late stage dementia you forget the basic functions of life like eating, coughing, defecating, breathing, etc. These cause medical complications which eventually kill you.
  • by whiteboy86 (1930018) on Tuesday June 14, 2011 @04:17PM (#36440938)
    Recently there have been lots of positive and promising developments in this area. May be he could help fund the lab battling the disease. Some examples:

    http://www.sciencedaily.com/releases/2011/06/110602122250.htm [sciencedaily.com]
    http://www.sciencedaily.com/releases/2011/06/110601075126.htm [sciencedaily.com]
    http://www.sciencedaily.com/releases/2011/05/110531135714.htm [sciencedaily.com]
    • by Ashe Tyrael (697937) on Tuesday June 14, 2011 @04:55PM (#36441670)

      PTerry already does a huge amount for Alzheimers projects. He doesn't expect the fix to come in before it's too late for him, and so he's making his plans and raising a stink about the issues while he still can.

      As for "he should look at these examples," he's already keeping abreast of everything that's going on in this field. In fact, right at the beginning of all this, he asked all the n-thousand people who would write to him going "have you tried X, Y or Z" option to please not do so, unless they were a neurosurgeon or brain expert, to keep the clutter down and the signal-to-noise ratio up.

      Amusingly, a disproportionate number of top-flight experts in these areas are fans. He effectively has a whole bunch of experts who keep him aware of the state of play.

      Put simply, he's doing everything he can in his position, including laying the ground work in the event it's not quick enough.

  • by ArcCoyote (634356) on Tuesday June 14, 2011 @04:44PM (#36441466)

    "Beloved science fiction and fantasy writer Terry Pratchett has terminal early-onset Alzheimer's. He's determined to have the option of choosing the time and place of his death, rather than enduring the potentially horrific drawn-out death that Alzheimer's sometimes brings. But Britain bans assisted suicide, and Pratchett is campaigning to have the law changed.

    THANK YOU FOR YOUR SUGGESTIONS. PLEASE UNDERSTAND HAVE A VERY BUSY SCHEDULE. I'LL GET BACK TO YOU WHEN I FIND THE TIME. BUT REST ASSURED I _WILL_ GET TO YOU.

  • by Jethro (14165) on Tuesday June 14, 2011 @05:25PM (#36442172) Homepage

    I love Terry Pratchett and his writing. I love how his writing -- which started out pretty good -- has got even better and deeper over the years.

    From his books, and interviews, and essays, it's pretty obvious that he's a pretty smart person, and probably values his intellect and personality.

    Like him, I'd be pretty damn terrified of losing that. There are a lot of things I could live with, but losing my mind, actually losing my mind, that is terrifying. I too would NOT want to go through years of.. really, not being myself, not really being a /person/ anymore.

    It's a hellish concept, and it's not like you get better eventually. I seriously hope that if it ever comes to that I'd be able to end my life in a calm, comfortable and, above all, dignified manner of my OWN choosing, rather than be subjected to a literal fate worse than death.

    Hell, if my DOG ever gets to a place where she can't really be herself and wouldn't be able to actually be happy, I'd be able to do that for her.

    I certainly hope that Terry Pratchett, who's brought so much joy and happiness to so many people, will be able to leave this world in a comfortable, painless and dignified manner of his own choosing. He deserves it. Everyone does.

  • by bzipitidoo (647217) <bzipitidoo@yahoo.com> on Tuesday June 14, 2011 @05:35PM (#36442356) Journal

    In more ways than the obvious ones. My mother has it, so I've had no choice but to learn about it. She can't really do chores any more though she still tries. She confuses clean and dirty dishes. She puts them in the wrong cupboards. She can't operate the washing machines any more, but she can and does still open the doors, stopping them. So we've had to either stand guard, or wash by hand, or use them at night when she is asleep. She's always thinking that people are coming over, or that we have to hurry up and go somewhere to meet people. She's beginning to have trouble remembering people. She really took to email, and was our family's big communicator. But about 2 years ago she stopped using it. Now she can't write anything but the most banal fluff. They say an early warning sign is difficulty with finances, and it was about 3 years ago we had to take over all the bill payments. The trigger was being 3 days late with a credit card payment. First time that ever happened, and the credit card company (Chase) wouldn't give an inch. I suppose the crisis made them hard ass. I paid the late fees and interest, and the entire bill, then I cancelled that credit card. A year later I finished cutting all ties with Chase, and closed my savings account with them.

    How and when do you take the car keys away? We saw suspicious paint marks on the bumpers and doors, and knew we couldn't let her drive much longer. Dreaded having an ugly scene where we forcibly took her driver's license away. Making it harder was that her daily trips to the mall got her out of our hair so we could work. But we found a neat way around it. She was always misplacing her purse, with keys, credit cards, and all. In March last year, she got paranoid that thieves might break in, and hid her purse. Took us a week to find it that time. We used that to end her driving. Told her she couldn't drive until she found her license and car keys, and she didn't blow up and come down hard on us as it was obvious to her that it was her fault she'd lost her purse. We did not tell her when we finally found it.

    Doctors, curse their greedy hides, are unable to do anything constructive about it. All they do is profit off our problems by selling us expensive prescriptions that may do nothing whatever. Aricept is a waste.

    All that is pretty typical. It will get worse. I read that in the advanced stages, victims no longer have enough of a brain to coordinate walking, even if their bodies can still do it. So they have to use wheelchairs. We may ultimately have to put her in a nursing home. But I haven't yet told of a less obvious horror.

    What I didn't know is how happy Alzheimer's victims are. She was always a moody person, prone to rampages over essentially trivial faults. She's a "sundowner", meaning that late afternoon is her triple witching hour so to speak. Her blood sugar bottoms out, and she becomes a hell of a grouch, more ready than usual to explode at any provocation whatever, and so ready to see provocation where there wasn't any. Got to feed her to calm her down and get her back to being just merely touchy and thin skinned. And then around 10 years ago, that changed. She became a much more pleasant, happy person. I took it as the wisdom of age. Thought she'd resolved to turn over a new leaf, and was succeeding. Everyone who met her told me how cool she was. And it gave me hope that people really can change, that genetics and formative events in our childhoods don't have to be our destinies. Now I understand that was the beginning of Alzheimer's. How can I express it? Horrifying to see that these improvements were thanks to irreversable brain damage, and that achieving happiness in life is perhaps not a worthy goal and not a real improvement.

    • by LatencyKills (1213908) on Tuesday June 14, 2011 @09:12PM (#36444860)
      Sounds hauntingly familiar - we went through all of that with my mother. Taking away the car keys turned out to be easy. When she asked we told her the car was at the mechanics, and astonishingly quickly she forgot about it. Showers became a hazard as she would sometimes turn on the hot water full blast. Installed a locked temperature knob. The biggest hassle came when she started wandering off. The police would return her - she was found roaming the neighborhood, going to visit a friend (said friend had been dead ten years, and lived 40 miles away when she was alive - far too far to walk). When it started happening at night we had to move her to a locked care facility. Oy. She cried not to leave her there on that first night, like a child being left at camp for the first time. The second night was no better, nor the third, nor the fourth, but she did eventually settle in at the new place, though went downhill quickly. One day she simply refused to eat. No coaxing could get her to, and we refused to have her fed intravenously. And maybe two weeks after that, it was over. Her death was not a sad time; we viewed it as a time of release. This was a woman who was a trained nurse, a grand master at bridge, and ace at the NYT crossword puzzle, and a voracious reader, reduced to making belts woven out of leather strips in a day room. The woman who was my mother had been dead more than four years before her body finally caught up with her. A death I would not wish upon my worst enemy.
  • Suffering to others (Score:4, Interesting)

    by Frans Faase (648933) on Tuesday June 14, 2011 @06:29PM (#36443234) Homepage

    It is often the case that those who suffer from Alzheimer's Disease live a happy life. My wife has recently been accepted in a home and for most of the time she seems quite happy with the life that she is living there. As a patient of Alzheimer's Disease you realize less and less what is going on when the disease progresses. But depressions and periodes of anxiety do occur. But it is often the people around the patient that suffer far more than the patient her/himself. I can testify this from first hand experience with respect to me, my children and our friends. In case I would be diagnosed with Alzheimer's Disease that would be a reason for me to want to terminate my life and sparing the people around me the prolonged sufferings of having me see go backwards.

    I think it should be possible to state that you want your life to be terminated when the disease has been progressed to a certain spcified level. There are some 'objective' milestones in the progress of the disease. Already dementia is one of the most expensive diseases in the western world, and especially in Europe, where the population is no longer growing, these costs are going to get much higher in the coming decades. Especially the last years are very expensive. That too would be a reason for me to consider early termination of my life, not wanting to put an unnecessary burden to society as a whole. But I also feel that people who do not want to terminate their life early, should get the best possible care.

  • by Anonymous Freak (16973) <prius DOT driver AT mac DOT com> on Tuesday June 14, 2011 @06:48PM (#36443486) Journal

    First, I am in full support of a person's right to choose their time and place of death when confronted with certain death anyway (I voted for Oregon's "Death with Dignity" law - both times it came up.)

    Second, I fully understand the debilitating effects of Alzheimer's, having multiple relatives who have succumb to it late in life.

    However, since when is Alzheimer's itself "Terminal"? I have yet to have a relative die "because of Alzheimer's".

    According to the latest statistics (http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/yr13-tbl-1.pdf ,) the most common underlying illness that has prompted people to take advantage of Oregon's law is, by far, cancer. (Or, "Malignant neoplasms" as it is phrased in the report.) 80.8%. Next is ALS (aka "Lou Gehrig's Disease",) with 8%. Next Chronic lower respiratory disease (which covers lots of lung issues other than cancer,) with 3.8%, then AIDS at 1.5%, and "Other" rounding out the rest. They detail "Other" in the footnotes, and no Alzheimer's.

    So, while I fully understand the desire of someone who is used to major functionality not wanting to succumb to the depths of Alzheimer's, to call it a Terminal Illness is lying to yourself.

The one day you'd sell your soul for something, souls are a glut.

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