Terry Pratchett, Alzheimer's and Choosing To Die

[Boundless]

http://www.metro.co.uk/tv/reviews/8...sing-to-die-was-harrowing-heartbreaking-stuff

Spoiler :

What you are about to watch may not be easy,’ said Terry Pratchett at the start of Terry Pratchett: Choosing To Die (BBC2). He wasn’t wrong. Then again, such had been the fuss surrounding his film about assisted dying, no one was going to be tuning in expecting a barrel of laughs. We were about to watch a man die.

Nobody appointed Pratchett as the poster boy for assisted dying (not suicide, there’s been a change of branding); rather the best-selling fantasy author has had the courage to charge himself with the mission of changing the law in Britain since he was diagnosed with Alzheimer’s disease three years ago. And now he was taking it to the next level, joining British businessman Peter Smedley on a trip to the Dignitas clinic in Switzerland, where Smedley planned to end his life.

Smedley, who’d made a pile in tinned peas, had motor neurone disease and was determined, with old-school British understatement, to beat the worst the condition could throw at him, even if that meant death. ‘The course of the disease is most unattractive,’ he observed, as if he were talking about a gaudy neckerchief. ‘One needs to go pretty shortly.’

It was brave of Smedley – and his wife – to allow the outside world into their private trauma. It was a decision that shone a penetrating light on the fierce debate that surrounds assisted dying and the right to determine our own fate.

That time is of the essence when it comes to assisted dying was uppermost in Pratchett’s mind. Leave it too late and you lose the power of choice and he was visibly wrestling with the idea that, in order to avoid his own fate worse than death, he would have to opt out of life before it was strictly necessary. Or ‘it might be too late. Because you can’t speak’.

This was harrowing, heartbreaking stuff. As the moment of truth arrived for Smedley, in a little blue house with hideous bedspreads, the clock played tricks. ‘Strange how time has different values at different occasions,’ were almost his last words. Pratchett sat by, visibly shaken. But the experience stiffened his resolve to stick around long enough to see the law changed here. Though he had an opt-out clause. ‘I’d like to die outside, in the sunshine,’ he pondered. ‘I suppose sometimes the sun shines in Switzerland.’

Read more: http://www.metro.co.uk/tv/reviews/8...s-harrowing-heartbreaking-stuff#ixzz1PH1GpxGq

This was an absolutely harrowing, and very difficult programme to watch for me - but something that I'm glad I did, especially as someone who loves Pratchett's work so much. It brought to light a lot of what Pratchett as a writer and a man goes through suffering from Alzheimer's.
Thoughts from anyone else who watched this, or would like to, or simply has an opinion on this issue in general....

 

[Leifmk]

My opinion is based on having seen that same absolute bastard of a disease do its horrid work on relatives of mine, and from that I guess you can probably infer which choice I would make. And in order to make that choice I would need the option to make it.

 

[Plotinus]

I think this is more an OT topic than an A&E one.

Moderator Action: Moved.

 

[Yeekim]

Each year, over one million people do not require any assistance or change in laws to end their lives...

EDIT: I suppose it can be an actual problem for those paralyzed from the neck down.

 

[Valka D'Ur]

My grandmother had Alzheimers, and she died at home - not by her own choice, but my dad and I found her dead on her bedroom floor one morning, nearly 14 years ago. It was a horrible experience (and I am still trying to deal with it) - but I'm so thankful that for her, the disease took its course quickly. She didn't suffer very long, relatively speaking - less than a year of truly not knowing who any of us were, where she was, what was going on around her, etc.

On the other hand, my dad was diagnosed with dementia (precursor to Alzheimers) almost 4 years ago. He's been in hospitals and nursing homes ever since. He still remembers me and my mother, but nobody else. He has trouble remembering which city he's in, and what year it is (a lot of the time he thinks it's several decades ago, when we lived on an acreage). And he constantly asks, "Well, I can come home, can't I?"

I wish. But the province stepped in and wouldn't let me care for him at home (in fact, they took the house to pay for his nursing home bills).

The way I see it, my grandmother's real self died long before her body did. The same will be true of my dad, when the day comes that he no longer knows me. After a person no longer has any grasp on reality, what's the point of going on?

 

[Lillefix]

Each year, over one million people do not require any assistance or change in laws to end their lives...

EDIT: I suppose it can be an actual problem for those paralyzed from the neck down.

Yeah, like in "Mar adentro".

 

[Kyriakos]

Assisted "dying" being approved will obviously open a huge can of worms. Where do you draw the line? What to say to people who have no diagnosed disease but claim they are in hellish pain nonetheless?

 

[wolfigor]

I didn't know Pratchett's alzheimer.
I love many of his novels and stories... it's incredibly sad that such a wonderful mind will be soon lost to alzheimer

Assisted "dying" being approved will obviously open a huge can of worms. Where do you draw the line? What to say to people who have no diagnosed disease but claim they are in hellish pain nonetheless?

Effectively it's very hard to draw the line.... but people have right to their dignity; the right to end their life when disease and sickness are making life unbearable.
I would rather die early then "live" years like a vegetable or completely mindless.

At the end of the day, we own our own life.

 

[Kyriakos]

Effectively it's very hard to draw the line.... but people have right to their dignity; the right to end their life when disease and sickness are making life unbearable.
I would rather die early then "live" years like a vegetable or completely mindless.

At the end of the day, we own our own life.

Well they appear to be reduced, certainly, but even so they are still human. I mean it is not like i cannot see your point, for example i know i would not want to live if i had lost some of my limbs or even just one, but then again there are people who go through a cycle of mourning and then manage somehow to soldier on.
I do not know what a person with progressed Alzheimer's feels like, or how he can think, but i do know that he is still human, even reduced to this state. Also the way i see it if the disease is so destructive then a sufferer will not be able to decide on his own once it reached a level, which would mean the assisted suicide would have to happen while he still is generally capable of logical thinking. This borders dangerously though on "frivolous" suicide, which is even more controversial.

And lets not forget what Yeekim said, that each year many people end their lives on their own anyway. Sure assisted suicide will make that less painful in most cases, but there are a lot of negative traits to it as well.

 

[emzie]

HBO aired a documentary last month titled How to die in Oregon which follows a woman with terminal liver cancer, and an initiative in Washington state to bring about a similar law there. It's a beautiful film. I recommend it.

 

[mangxema]

My first experience with death was when my grandfather died of Alzheimer's. I only saw him once, and he was pretty much gone at that point. It was only after an explanation that he remembered that my dad was, in fact, his son. If I ever get to that point, I'd just as soon have someone shoot me in the face and get it over with.

 

[Traitorfish]

This was an absolutely harrowing, and very difficult programme to watch for me - but something that I'm glad I did, especially as someone who loves Pratchett's work so much. It brought to light a lot of what Pratchett as a writer and a man goes through suffering from Alzheimer's.

My thoughts exactly. I was a supporter of the right to die to begin with, and this has certainly galvanised me in that regard. It think his final comment, about the death he witnessed being a positive thing, was very insightful. People need to look at this as not mere self-destruction, but as a rational choice to end your life when you feel that it is best.

Each year, over one million people do not require any assistance or change in laws to end their lives...

And those are often sloppy, gruesome deaths- as Pratchett, a former reporter, makes quite clear in the documentary. People deserve better than a bottle of pills and a plastic bag.

 

[aelf]

Peter Singer got a lot of flak for similar views, and in Germany, of all places. I'd guess that there are plenty of "pro-life" people out there, and they may not necessarily be fundies or against abortion either.

 

[Yeekim]

And those are often sloppy, gruesome deaths- as Pratchett, a former reporter, makes quite clear in the documentary. People deserve better than a bottle of pills and a plastic bag.

Maybe they are sloppy and gruesome because they mostly happen in spur of the moment and thus without proper contemplation and preparation?
Your life is yours and therefore, all the responsibility that comes with it is yours too, including responsibility to end it, should you really so choose.

 

[Akka]

Assisted "dying" being approved will obviously open a huge can of worms. Where do you draw the line? What to say to people who have no diagnosed disease but claim they are in hellish pain nonetheless?

It seems to me that if someone wants to die and express it in a non-ambiguous way, there isn't a lot of "can of worms" to open.

 

[Kyriakos]

It seems to me that if someone wants to die and express it in a non-ambiguous way, there isn't a lot of "can of worms" to open.

One known problem with that is that a lot more people have had suicidal ideation than those who actually killed themselves. So if there existed some "easy" way of killing oneself, through assisted suicide, one can estimate that more of those who once were in the mood to kill themselves would actually have it done, whereas in retrospect for many it would have been a phase in their lives.

 

[wolfigor]

One known problem with that is that a lot more people have had suicidal ideation than those who actually killed themselves. So if there existed some "easy" way of killing oneself, through assisted suicide, one can estimate that more of those who once were in the mood to kill themselves would actually have it done

or maybe not.
We can assume that assisted suicide also means assisted by psychologists and doctors, and limited to people with real deadly diseases.

 

[Kyriakos]

or maybe not.
We can assume that assisted suicide also means assisted by psychologists and doctors, and limited to people with real deadly diseases.

Yes, this came up even earlier in the thread, and i asked just why should one person with a deadly disease be granted suicide assistance, and not someone who feels he is in hell.

Pain is subjective. Also there is no reason to guess that all people who killed themselves were objectively in some appalling state. Many were like Cobain, psychologically troubled but not having some physical illness.

As i stated before i too could wish to die if i was in some horrible position, but it is very hard to draw lines in such a practice like assisted suicide, which is why i think it won't be legalized in most countries.

 

[Boundless]

Alzheimer's is a horrible, horrible disease. Having seen my Grandfather suffer with Lewybodies, a form of Alzheimer's, I can only say that I KNOW he would have been in support of this because ultimately, as soon as he was forced (quite literally, my father had to drag him across the street) to be put in a care home he gave up and I knew he'd had enough. It just became a waiting game for him.
I feel Alzheimer's can truly affect those outside looking in on their loved one suffering as well. The pain I felt seeing my Poppa forget who I was and having to tell him the same story from my childhood in order to get him to look at me, crying, and grab my hand and grumble gobbledegook. Choosing to die gives someone the opportunity, when they're ready, to go and let everyone say goodbye to them in a dignified and honourable manner without the pain and suffering we ALL go through at that time.
I don't know - I've only looked at choosing to die from the perspective of an Alzheimer's patient, but I can't be more in support of it after seeing what happened to my Grandad, what WILL ultimately happen to one of my favourite authors, and so many other people with degenerative diseases like the gentleman in this tv documentary.

 

[NovaKart]

My grandmother had Alzheimers, and she died at home - not by her own choice, but my dad and I found her dead on her bedroom floor one morning, nearly 14 years ago. It was a horrible experience (and I am still trying to deal with it) - but I'm so thankful that for her, the disease took its course quickly. She didn't suffer very long, relatively speaking - less than a year of truly not knowing who any of us were, where she was, what was going on around her, etc.

On the other hand, my dad was diagnosed with dementia (precursor to Alzheimers) almost 4 years ago. He's been in hospitals and nursing homes ever since. He still remembers me and my mother, but nobody else. He has trouble remembering which city he's in, and what year it is (a lot of the time he thinks it's several decades ago, when we lived on an acreage). And he constantly asks, "Well, I can come home, can't I?"

I wish. But the province stepped in and wouldn't let me care for him at home (in fact, they took the house to pay for his nursing home bills).

The way I see it, my grandmother's real self died long before her body did. The same will be true of my dad, when the day comes that he no longer knows me. After a person no longer has any grasp on reality, what's the point of going on?

Why weren't you able to take care of him at home? Is it because he lost his home and he can't live in your home or was their some adult services that stepped in and prevented you from doing it? Just curious, if it's too personal never mind.