Terry Pratchett

scarletpauline

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Jul 19, 2009
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I just watched Emma from last night on the catch up facility on TV and turned over to BBC1 before closing down. Terry Pratchett was being interviewed about his new book and towards the end he mentioned that he didn't want to get to the end stages of Alzheimers and that he wanted to have a glass of brandy and whatever it took to end his life. I can't imagine he would be able to think that clearly in the end stages unless he can make a "living will" but surely nobody else can end his life for him. Not sure what to think about it. Pauline x
 

KenC

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Mar 24, 2006
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Hi scarletpauline

I think many of us feel the say way, as the thought of the final stages terrifies us all. I am not in any way frightened of dying, its just the way this illness ends with all its indignity etc.

Many people may not agree with this, but when you are living with it day and night, it can become a nightmare, thinking of what is coming along the line towards us.

I once saw some civil liberties people on TV, saying that it is wrong to think of things like this, but I have to ask if these people really do know, what this illness is and the stress it causes. "I doubt it".

Ken
 

Norrms

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Feb 19, 2009
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Thoughts

Hiya, i can only agree with ken. For those of us who have early stages of this horrid disease the end result is absolutley terryfing no matter how positive your attitude is. You only have to read on here what awful things happen to AD sufferers and the anguish it causes their carers and loved ones. I have often thought on similar lines with Terry Pratchett just before i get to a stage that i dont know what i am doing, but then there is always that wonderful word !HOPE!! The battle between despair and hope will always go on for me and i know which one i prefer to win, but unfortunatley only time will tell. Sorry if this is not my usual upbeat comments but this is a subject that has come up in conversation a few times and is a serious one for me.
Best wishes, Norrms and family xxxxxxxxxxxxx
 

Rosie

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Jun 10, 2004
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I can only relate to what my poor Mam went through and I know for a fact that she would not have wanted to carry on to end the way she did, this illness took her life away from her at only 59, recently she has passed away, at just 70, but her life was long gone when there was no dignity, and her days were spent in a chair, being fed & changed like a baby, there is no way anyone would want that! Me and my husband have discussed it, if anything was to happen to me ( God forbid) I would want to end my life, and I am not saying that lightly, everyone has to make their own decision, but I know what mine would be, after watching my lovely Mam waste away for all those years. I would definately agree on Euthanasia. I am also a nurse and see people suffer the way that animals don't! My opinion only but we are all differnt, Rosie x
 

scarletpauline

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Jul 19, 2009
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Oh don't misunderstand me, I am all for euthanasia but thought it was an interesting subject to discuss. I am sure I would feel the same, who knows, maybe it will happen to me. Love to all. Pauline x
 

KenC

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Mar 24, 2006
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I agree that we are all different and act is different ways, but I also feel that those who have the illness may well think of things in a totally different way to their carers and families.

It all comes down to the fear of the unknown, as like it or not we are no longer in control of our lives when we get this diagnosis.

Ken
 

Canadian Joanne

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Apr 8, 2005
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I think euthanasia is an idea that can only be decided by the person involved. It is something I could consider for myself, but not, I think, something I could ever consider for someone I love.

Although my mother is in the later stages now, I am not ready to let her go. I couldn't, at this stage, do something to release her. It is possible that my thoughts might change in time, although I don't think so.

A couple of years ago, when my mother was violent, swearing, aggressive and always horrible and unhappy, I wanted things to end. But I wanted it to end without my participation. Had she died then, I would probably have been wracked by enormous guilt. I am so glad she didn't, as I have been able to come to some sort of terms with what is happening to her. I try to enjoy her as much as I can, while I can.

I can understand why Terry Pratchett made the statement he did, but it will be a different matter years down the road.
 
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gigi

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Nov 16, 2007
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I can understand why Terry Pratchett made the statement he did,

Me too..I also caught the back end of that interview thismorning.

Each to his or her own opinion on this..it's got to be relatively easy to discuss such matters while there is a degree of insight, but surely the perspective changes as the disease progresses.

We'll all face death one day..I'd hate to think that someone close to me would carry the onus of "helping me to go"..I couldn't lay that on them.

I wish we could shift the Dementia focus to living and supporting the sufferer and carer alike...providing dignified and holistic care for the term of the disease, rather than looking to the end, which I think sets a dangerous precedent if we're talking euthansia.

xx
 

Norrms

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Feb 19, 2009
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Torquay Devon
Hiya

Hiya, i must admit i am with Rosie on this one, the term " You wouldnt let an animal suffer" is said so many times by so many people its hard to understand why some sort of legistlation has`nt been already passed. To witness close family or clients go through the sheer hell of late stage dementia and other terrible uncurable painful diseases is not something that you would wish on anybody. From the number of medical proffesionals i have spoke to they all think the same as Rosie.
Also for reference, i have a No Resuss written on my medical records ( with the consent of all my family)as if anything did happen to me i wouldnt want to come back and face the inevitable. Best wishes, Norrms and family xxxxxxxxxxx
 

sussexsue

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Jun 10, 2009
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West Sussex
The big difference is that reading what Terry Pratchett, Norrms and Ken have to say, they are well aware of their illness and acknowledge what they have, are aware of the future and can articulate how they feel extremely well. I have such respect for the three of them.

Sadly for most of us we are caring for people who usually are unaware of what their illness is, what the long term prognosis is, or even that they are ill at all. Certainly with my mum in the early stages it was always "my little memory problem, suppose it comes with old age". Even now that she accepts that she has Alzheimers she has no realisation or interest in what it means or how the disease will progress. She can only deal with and understand the now.
 

stikwik

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Oct 31, 2007
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Nottingham
my thoughts

as a christian i don't even have the choice about euthanasia which i'm glad about because whilst ever i can call to mind images i've seen on tv and think 'poor them, is it worth living?', i don't think i could ever make that choice in real life. especially on behalf of another. however much i could be prepared by steve for 'his wishes' it would be too much to ask me to do to carry it out even if i could determine the 'right time'.

i'm always surprised at the capacity of mine and others humanity to adjust to a new situation and find a silver lining, however bad on the surface. should we euthanase those children who cannot move and have to be fed intravenously etc? it seems when we see children that way, it's not discussed as an option as much. i will wish for steve to be taken before he suffers so very intolerably, but i know there are painkillers for the darkest times, that's all i can imagine about our future.

and to use the word 'dignity' just confuses matters. what we may now judge 'undignified' should perhaps just be viewed differently. i had to nurse my m-i-l at the very end, in an undignified situation that i would not choose to do, but would i have wished her dead than do it? no.

in some drab moments i can ask myself why i am here. that's silly because i am by no means incapacitated and do benefit the world by being here, so is selfish to think. but it's only ever a passing thought eg in depression. when i look at all the people involved in steve's care just to exist, i can think, it will only get worse, how can this 'be' (ie haven't they got better things to do). but we have both benefited greatly in our relationships with these people and we would not have had these times without this awful illness. a silver lining, and very precious.