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Greetings forum member (or would-be forum member)! This day was announced months ago and has been long in coming, but it is - sadly - here at last. The John Connolly discussion forum will be shutting down for good on Friday, February 24, 2012. Please join John's Facebook page at http://www.facebook.com/pages/John-Connolly/100276323350855 and feel free to start new discussions there, or find John on Twitter at @jconnollybooks. Thanks for your participation, friendship and support.
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Author Topic: Do writers' lives creep into their books?  (Read 18364 times)
Lisa B
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« Reply #30 on: June 14, 2011, 09:32:28 AM »

There was a review of the programme in the paper yesterday, and that's what it said, that he wanted to explore the option of dying with dignity when he felt it was appropriate.  I haven't watched it yet - need to do a couple of batches of biscuits for tomorrow's team meeting, sort out my overnight bag, write one last outstanding report, and then I'll put it on iplayer - I've already downloaded it...
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Helen
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« Reply #31 on: June 16, 2011, 01:13:49 AM »

It is really sad to say, that it is an option he is considering, or should I say, he wants to explore as assisted suicide is not legal in the UK or Ireland, but it is legal in a few European countries.  The programme is very harrowing to watch and he was deeply affected by the people he met.  He wants to live, but is very conscious of his illness and the effect it will have on his loved ones as his disease takes more control away from him.  He mentioned that he was loosing memories and that line from "I Shall wear Midnight" that you mentioned Heidi was forefront in my mind as I watched him. 

The legal issue is the big problem.  People in the UK and Ireland, who want the option of assisted suicide have to travel (mainly I think to Switzerland) and what he found very upsetting, as did I, is that because of this they die earlier than they would do if it was legal at home.  Don't think for a minute that it is something that is easily available, it is not.  Although the programme did not give out too much details, it is referred to throughout, and the Swiss Doctor who was part of the programme, took part in the debate as well.  The person who wants to die has to take the poison themselves, they cannot be helped.  So for people who have to travel, their fear is that if they leave it too late the disease will take away their ability to do something as simple as lift a glass, drink the poison and swallow it, and so the opportunity is lost.

I just hope and pray that it is something I, or any of my family and friends, never have to think of.
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RachelAllshiny
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« Reply #32 on: June 16, 2011, 03:41:16 AM »

It's such a tough issue.  My uncle was clinically dead for a total of about half an hour in January (two different times added together).  They told us he would have to be on a respirator for the rest of his life, and live in a home, and gave us (and him, when he regained consciousness), the option of just taking him off the respirator and letting nature take its course.  He was diagnosed 4 years ago with multiple pervasive cancers, and only given 3 months to live at the time, so he's definitely had time to make whatever peace / arrangements he could before this.

In the end he decided that he was still thinking coherently, so he wanted to stay on the machine.  Now, months later, he has just moved into an apartment and breathes completely on his own.  We were all so sure it was over in January and thought it might be best to let things take their course.  But now he's suddenly moving somewhat independently again, can see his kids and grandkids and wife, etc.  So, knowing that, it's hard to think we almost let go too early.

Alzheimer's is so different, though.  There's no coming back, and the loss of memory is devastating.

All I know for sure is that I come from a very stubborn family.  On both sides!
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« Reply #33 on: June 16, 2011, 07:55:30 AM »

I am with you Rachel, this is such a tough issue and a very emotive one.  I am delighted to hear the good news about your Uncle and it shows that doctors don't know everything.



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Heidi
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« Reply #34 on: June 22, 2011, 06:05:04 AM »

I guess the alternative for him would be to commit suicide on his own.

My heart goes out to him and to anyone who has this terrible disease.

I know for myself, I am stubborn and would fight to live through anything, but in the case of Alzheimer's, I would be thinking much like him. I would want that last memory of my loved ones, of my life, to carry away with me, especially when it comes to my kids. They have made my world the amazingly, gift-filled blessing that it is, and to die not knowing them is an idea which I would find extremely desolate.
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TheLastReaper
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« Reply #35 on: June 22, 2011, 11:21:28 AM »

i would like to say something worth while here, but as you all say, it is such a tough and emotive subject it's almost impossible.The differing perspectives on this will always leave it undecided apon. My Nan is suffering with the disease and dare i say, can be quite amusing at times as they live in their fragmented memories but the truth is the family simply don't know how to help Undecided luckily she has had a wonderful life so what went before will be remembered when she has crossed,(hopefully for us and her) and this last passage of hers wont be our longing memory and I personally feel that when you do cross you choose what to take with you illness or not.
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Lisa B
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« Reply #36 on: June 22, 2011, 02:42:58 PM »

A few years ago, my great uncle was diagnosed with progressive supranuclear palsy, which is similar to Parkinson's Disease in presentation. I remember thinking at the time that it must be so hard to have a fully functioning brain inside a rapidly failing body. PSP also affects vision - it was at the point when he was unable to read a book when my great uncle asked my uncle if he would be prepared to help him travel to Switzerland, as he felt that, with being unable to read, he had lost his last and longest abiding pleasure. That trip didn't take place, in the end.

I suppose that, in some ways, Alzheimer's can be harder on those around the sufferer than the sufferer themselves - in some ways they are probably quite happy to be lost in past memories, and generally seem to be largely unaware of what they are losing in the present.

What is interesting about Terry Pratchett is the fact that he seems to be so aware of his ongoing illness and of what he is losing.  I noticed that, by this programme, he was unable to type. At the time of the last documentary, I seem to remember that he was doing his own typing, but had some word finding difficulties.  Back then he had lost the fine motor skills required to do his tie - his motor skills have obviously deteriorated quite significantly since that time.

I don't know how many people saw the Newsnight documentary which followed on from this and which picked up on the same topics. There seemed to be some consensus that assisted suicide should be considered for those with a "terminal illness", if strictly regulated. It did say that two US states used that particularly definition, and further detailed the fact that death in relation to the illness should be imminent (expected within 6 months). Under that definition, Alzheimer's probably would be excluded, as sufferers could be physically healthy, with a fair life expectancy ahead of them, long after losing what makes them them.

By the way, coming from a disability background, I was banned from using the word “suffer” (as in, “oh, the poor lamb, he suffers from...”). In disability PC language you are a person with a disability, you don’t suffer, you aren’t to be pitied. However, in the context of Alzheimer's, I use the word quite deliberately, as I couldn’t think of one more appropriate.  Sorry if it offends...
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RachelAllshiny
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« Reply #37 on: June 22, 2011, 07:59:53 PM »

I don't have anything else to add to the discussion right now, but I just wanted to say how much I appreciate that we've been able to have in-depth discussions about such difficult, controversial subjects here.  I came here for JC, but I stay because of the core group of people who post so thoughtfully on a wide range of topics.

Okay, sorry for the interlude, but reading the past few responses prompted some admiration on my part!
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Heidi
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« Reply #38 on: June 22, 2011, 08:09:58 PM »

Reaper, I find I take comfort in the idea that no matter what, you have your memories returned to you when you have passed.

It would make the illness a between time of sorts, then.

But it's just such a harrowing between time. There will be good fragmented times and odd ad it may sound, I'm so glad your Nan has those. But the disease is not always so kind.

I do agree that in many ways the disease is as hard on the family members as it is on the person who has it. Though truth be told, I'd imagine it would be hard to watch anyone one loves die slowly...

Ta, Rachel, and the same to you m'dear. Absolutely cannot wait to see you! Cheesy
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elliotaw
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« Reply #39 on: June 23, 2011, 12:03:29 AM »

My parents have been moved to a place where they are looked after 24/7, as they just weren't coping at home.  Mum was diagnosed with Alzheimer's some years ago, and is fading slowly.  Dad now has some form of dementia which they say is too quick in its rate of progress to be Alzheimer's.  We are still waiting on a diagnosis of him.

It's almost painful to go and see them, and is certainly exhausting, but obviously necessary.  They don't understand why they are there and, no matter how many times it is explained to them, they have forgotten by the next day.  Dad remarked the other day that he hadn't realised my wife and I had married (which happened 35 years ago, with Dad at the wedding).  Mum will ask the same questions a dozen times each visit, e.g., "Is the family all well?" because she can't remember who is actually in the family.

Yet they still seem to derive some comfort from visits by family members and, so far, they still remember who I am.  Their long-term memories are both pretty good.  Dad is confused about what is happening to him - he realises every now and then that something is wrong, but he doesn't know what or why.  Mum doesn't seem too concerned with her diagnosis - she just says that it's part of growing old.

Dementia (including Alzheimer's) - it is becoming such a scourge, with the estimates of the number of future sufferers sky-rocketing.  Yet there are still people who are worse off than them (or the family, for that matter), and my heart goes out to those people and their carers.
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TheLastReaper
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« Reply #40 on: June 23, 2011, 01:47:42 AM »

Much love to you and family elliotaw  Sad
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elliotaw
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« Reply #41 on: June 23, 2011, 04:12:03 AM »

Thank you - that's very kind.
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Marriage is like a pack of cards:  all you need at the start are two hearts and a diamond, but you end up wishing you had a club and a spade.
Jayne
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« Reply #42 on: June 23, 2011, 07:12:09 AM »

My dad was diagnosed with Lewy Body Dementia 18 months ago - it's similar to Alzheimer's, but progresses faster. He's not very well at all and on top of that he is virtually blind. Whenever we see his consultant, he always asks my dad if he has any suicidal thoughts. So far, my dad has always said no. But if ever he changed his mind, I have to admit that I would assist him if he needed me to. It's a terrible, terrible illness and I wouldn't wish it on anyone.
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Lisa B
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« Reply #43 on: June 23, 2011, 09:10:34 AM »

I don't have anything else to add to the discussion right now, but I just wanted to say how much I appreciate that we've been able to have in-depth discussions about such difficult, controversial subjects here.  I came here for JC, but I stay because of the core group of people who post so thoughtfully on a wide range of topics.

Okay, sorry for the interlude, but reading the past few responses prompted some admiration on my part!

Hey, who said we couldn't have serious conversations around here without breaking out in full blown warfare?
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RachelAllshiny
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« Reply #44 on: June 23, 2011, 01:41:17 PM »

Hey, who said we couldn't have serious conversations around here without breaking out in full blown warfare?

I guess it's been known to happen, once or twice.  Grin
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Shared pain is lessened; shared joy, increased — thus do we refute entropy.
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