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Source: (consider it) Thread: Death preferable to dependency
Raptor Eye
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# 16649

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A BBC reporter is alleged to have said that it is preferable to take a pill and end it all rather than become dependent on other people due to dementia:

http://uk.lifestyle.yahoo.com/john-simpson-suicide-pills-euthanasia.html

This implies that a human life has no value without autonomy. I wonder why he has singled out dementia, when there are many other illnesses and physical disabilities which cause dependency. Are these people equally a 'burden'?

What are your thoughts?

How does this square with the Christian value of human life, in your view?

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Be still, and know that I am God! Psalm 46.10

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tclune
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# 7959

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Are you sure that it is the dependency that people wish to avoid? It may be the fear, confusion, and isolation that comes from no longer knowing your own family or where you are.

--Tom Clune

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Posts: 8013 | From: Western MA | Registered: Jul 2004  |  IP: Logged
mark_in_manchester

not waving, but...
# 15978

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My friends and relatives who have ended / are ending their lives in dementia care / nursing home accomodation have tended, in lucid moments, to radically over-estimate the time they have been there (6 years turning into 20, etc).

I tend to be a half-empty man, but it's hard not to conclude they're being farmed for profit by the home owner - that's how it works in the UK, or at least how ISTM.

But I would not administer the release that some of them seem / have seemed to want. So it's just shit. We turn up and visit. They forget we've been. Everyone is miserable, and feels they are failing.

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"We are punished by our sins, not for them" - Elbert Hubbard
(so good, I wanted to see it after my posts and not only after those of shipmate JBohn from whom I stole it)

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Boogie

Boogie on down!
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Yep, it's 100% shit. I would take the peaceful pill, no qualms.

Every morning I hope that Mum won't have woken up.

[Tear]

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Garden. Room. Walk

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Amanda B. Reckondwythe

Dressed for Church
# 5521

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quote:
Originally posted by Boogie:
Every morning I hope that Mum won't have woken up.

I feel the same about my father, who is 92 years old and mentally all there but physically very frail. I have already made up my mind that I do not want to live so long as to be in the condition he is in.

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"I take prayer too seriously to use it as an excuse for avoiding work and responsibility." -- The Revd Martin Luther King Jr.

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Raptor Eye
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It is a dreadful thing to lose our memories, so that we can no longer relate to other people in a meaningful way, but those who live with it may lead contented lives if they're cared for well.

Perhaps it's harder for those observing it than for those suffering from it?

To call such people 'gibbering wrecks' singles them out. There are many younger people with mental health problems who can't relate with other people. Isn't all human life valuable?

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Be still, and know that I am God! Psalm 46.10

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Firenze

Ordinary decent pagan
# 619

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What do they think has happened, the old fools,
To make them like this? Do they somehow suppose
It's more grown-up when your mouth hangs open and drools,
And you keep on pissing yourself, and can't remember
Who called this morning?...

...Can they never tell
What is dragging them back, and how it will end? Not at night?
Not when the strangers come? Never, throughout
The whole hideous, inverted childhood? Well,
We shall find out.

Posts: 17302 | From: Edinburgh | Registered: Jun 2001  |  IP: Logged
Macrina
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# 8807

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quote:
Originally posted by Raptor Eye:
A BBC reporter is alleged to have said that it is preferable to take a pill and end it all rather than become dependent on other people due to dementia:

http://uk.lifestyle.yahoo.com/john-simpson-suicide-pills-euthanasia.html

This implies that a human life has no value without autonomy. I wonder why he has singled out dementia, when there are many other illnesses and physical disabilities which cause dependency. Are these people equally a 'burden'?

What are your thoughts?

How does this square with the Christian value of human life, in your view?

I think for me it isn't dependancy I fear, it's abuse at worst and monotonous, distracted and busy staff at best. Dementia care costs A LOT of money to be done well and there simply isn't enough available to make the services what they need to be. If we treated children the way we do the elderly there'd be an outcry.

That's why I'd take a pill, not because I feel my life is of no value once I lose autonomy. If I think about it rationally I have very little real autonomy even now, we all need each other.

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Raptor Eye
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Don't the comments say a lot about the attitudes of people toward the elderly?

These people happen to have contracted a disease called dementia, but they're condemned as less than human beings, of no value, people who are likely to be abused.

If it were a disease that mostly hit people in their thirties, what difference would that make to attitudes?

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Be still, and know that I am God! Psalm 46.10

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Macrina
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I'm not condemning them as people more likely to be abused. They are more likely to be abused, as regular headlines demonstrate. I think we as a culture have a lot of thinking to do.
Posts: 535 | From: Christchurch, New Zealand | Registered: Nov 2004  |  IP: Logged
Raptor Eye
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quote:
Originally posted by Macrina:
I'm not condemning them as people more likely to be abused. They are more likely to be abused, as regular headlines demonstrate. I think we as a culture have a lot of thinking to do.

I agree. It may be that they're more likely to be abused as elderly people are given no respect simply because they're elderly.

If they're treated with dignity by people who really do care about them, and given proper care including the mental stimulation they need, they may live out their lives with dignity. Yes, it's expensive. Aren't they worth the expense?

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Be still, and know that I am God! Psalm 46.10

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Adeodatus
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Ah. The "what is it like to be a bat?" problem again. The problem with trying to imagine what it's like to be, for example, a person with dementia, is, to put it simply - we can't. I can imagine what it might be like for me to behave like a person with dementia. I can imagine what it might be like for me to be as dependent as a person with dementia. I can even listen to the testimony of people in early stage dementia. But until the day someone gets cured of dementia and, as it were, "comes back", I'm never going to be able to imagine what it's like to be a person with dementia.

My mum had vascular dementia. For the last year of her life she was in a nursing home with other people with dementia. She learned a lot of new swear words (or was less inhibited in using them). She sometimes cried. She sometimes laughed. She gave up smoking (I think she forgot she was a smoker). Towards the end she was utterly dependent and quite quiet. She died one day before I could get to her.

I often wished, in that last year, that for her own sake she might not wake up the next day. But - involuntarily, certainly - in that time she was teaching me a lot, about resourcefulness, resilience, and finally (in my mid 40s) about being a grown-up.

Before that last phase, she was weary and worried and confused. Once she entered it, it became more like the people around her who were confused on her behalf: somehow, her world seemed to make a surreal sense. Which taught me the most important thing - the well make decisions differently, and have different desires, from the sick.

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"What is broken, repair with gold."

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Raptor Eye
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Thank you, Adeodatus. You've described it admirably. I meet not only elderly people with dementia but also younger people with mental health problems. They continue to teach us a great deal, not least humility.

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Be still, and know that I am God! Psalm 46.10

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Twilight

Puddleglum's sister
# 2832

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A few years ago someone was showing me around the Alzheimer wing of the local nursing home and I noticed a wicker basket of crumpled doll clothes sitting on the sofa. The attendant told me that some of the old ladies liked to fold and arrange them while they sat in front of the TV.

Hmmm. When I was a little girl I loved to do things like that. Maybe I'll love it again when I'm 95. Maybe I won't mind not recognizing my family when they visit, because I won't know they're family, just pleasant people. I'll try not to show my slight irritation that they're keeping me from my doll clothes. Then I'll go for a walk down the circle-back path and discover the roses that I discovered the day before.

I hope the people who cry all the time find that "blessed release," but the ones who seem contented might actually be enjoying life more than we think.

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orfeo

Ship's Musical Counterpoint
# 13878

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If people genuinely DO have a problem with dependency (rather than all the other issues mentioned), then it strikes me as an example of pride.

We live in societies that don't tend to encourage saying "I can't do that, I need someone else to do it for me".

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Technology has brought us all closer together. Turns out a lot of the people you meet as a result are complete idiots.

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Belle Ringer
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# 13379

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I'm not sure if dependency is the right word, although on the homeless thread there's been mention of how important autonomy is. In my Mom's nursing home there was no autonomy. She hated sugar on her oatmeal. They served her oatmeal and right in front of her stirred in lots of sugar -- just the way the server likes it. And no she couldn't send it back for sugarless oatmeal, the kitchen had sent exactly enough bowls for the dining hall.

Moment after moment, day after day, that sort of "you are not a real human being" treatment is depressing and exhausting. (Then they put you on drugs for being depressed at the de-personalization.)

A homeless friend called me crying today because of the agony of having nothing to do. (She has been promised a job but it takes a while for the approval papers to come back from HQ.) Wake up at 7, how do you get through the day, hour after dragging hour until 11, when there is no purpose in the day? Human beings need purpose.

Sure, when we're busy working and rearing families we look forward to "no responsibilities" but in reality that gets deadly tiresome, an endless future of nothing but sit and read book after book after book, or watch soap after soap every hour every day. Been there, OK as a novelty for a month, then it's hell.

I wouldn't be surprised if dementia people suffer deeply from the lack of purpose. Folding doll cloths at least offers the illusion of purpose, but what kind of life has to be built on illusion?

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art dunce
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When I was a LEM I did a weekly visit to an alzheimer residential home that housed 30 or so women. It was a dismal place filled with crying, wailing, innapropriate public self touching of a sexual nature, occasional fecal painting on the walls...women calling me different names of lost daughters or sisters with tear filled eyes, terse and impatient aids who wanted the women to sit down and shut up. It was behind two gates for their protection and they were locked.in.hell. The stench was unbelievable. the fear and anxiety overwhelming, the powerlessness and the loss of dignity beyond belief. My dear llady (a former parish member who we visited religously) was frail and frightened and she clung to my hand so tightly that when it was time to go I had to gently pull her fingers from my wrist because she was so lost. The lady that ran the place said it was nothing compared to how awful the nights were. I would leave and sit in the car and have to gather myself before my next visit because the whole thing was so awful. Give me the pill.

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Ego is not your amigo.

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Belle Ringer
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# 13379

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quote:
Originally posted by art dunce:
My dear lady (a former parish member who we visited religously) was frail and frightened and she clung to my hand so tightly that when it was time to go I had to gently pull her fingers from my wrist because she was so lost.

I used to sit in the very back of the church on a bench against the wall next to an old couple, the woman would cling to my hand tightly through the whole service, saying she feared the day her husband dies, she'll have no one to talk to. The loneliness of old age is cruel. (She was in one of those "warm cozy" churches for those who grew up together. She didn't.)

I dropped out for a year. Went back and looked for her but didn't see her. Wonder what happened to her, but I didn't know her name.

What bugs me is so many who visit nursing homes to do entertainment say "the old dears don't care if we are good or bad, they don't know the difference." NOT TRUE! Plenty of people in nursing homes still have sharp minds, but when I argue that I get firmly told NO, their minds are gone." I've been in a nursing home show, chatted with elderly WITH one of these dismissive friends, we bantered with a man who had been a professional tap dancer and taught us a song from a few decades ago, and still my friend insists "their minds are gone" -- said that on the way out the door after an interesting and informative conversation with a man as quick witted as you and me, he just couldn't walk anymore.

I think it's an excuse to not try hard. She refused to rehearse the show because "they won't know the difference." Trouble is, it's not just her, everyone else I personally know who does the nursing homes says the same thing.

Maybe we want it to be true, want to believe by the time we get put in one we won't know, because the reality is a threat to us?

I hate that dismissive refusal to see the real person behind the shaky hand.

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orfeo

Ship's Musical Counterpoint
# 13878

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quote:
Originally posted by art dunce:
When I was a LEM I did a weekly visit to an alzheimer residential home that housed 30 or so women. It was a dismal place filled with crying, wailing, innapropriate public self touching of a sexual nature, occasional fecal painting on the walls...women calling me different names of lost daughters or sisters with tear filled eyes, terse and impatient aids who wanted the women to sit down and shut up. It was behind two gates for their protection and they were locked.in.hell. The stench was unbelievable. the fear and anxiety overwhelming, the powerlessness and the loss of dignity beyond belief. My dear llady (a former parish member who we visited religously) was frail and frightened and she clung to my hand so tightly that when it was time to go I had to gently pull her fingers from my wrist because she was so lost. The lady that ran the place said it was nothing compared to how awful the nights were. I would leave and sit in the car and have to gather myself before my next visit because the whole thing was so awful. Give me the pill.

That doesn't strike me as fear of dependency as such, more like fear of being at the mercy of a complete lack of funding and/or lousy staff.

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Technology has brought us all closer together. Turns out a lot of the people you meet as a result are complete idiots.

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Timothy the Obscure

Mostly Friendly
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I don't think it's about dependency--it's about losing one's self. I'd take the pill too. I'm deeply grateful that I live in Oregon, with its Death with Dignity law, which allows people with less than six months to live to choose the time and manner of their departure. But this is of little help to those with dementia, because by the time they are within six months they aren't considered competent to make the decision.

We're kinder to animals than people.

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When you think of the long and gloomy history of man, you will find more hideous crimes have been committed in the name of obedience than have ever been committed in the name of rebellion.
  - C. P. Snow

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no prophet's flag is set so...

Proceed to see sea
# 15560

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I worry about the burden argument or angle, that if it is fashionable or considered right to consider that one should end one's life, that there will be pressure to do so, particularly since it can cost 4 or 8 thousand dollars for a month of care.

I do not own myself. I did not ask to be born. I will neither ask to die. I consider the argument that it is selfish to consider one should end one's own life. I do know about the burden of old and sick people. I slept on the floor of my mother-in-law's room in a sleeping bag for nearly 8 months so I could tend her at night, feed her breakfast in the morning and have Home Care come until just before supper when my wife came until it was time for bed. It cost a lot, both in money and in time. It helped her avoid fear and helped her avoid loneliness of losing my father in law for the 7 months. It helped her keep faith as much as her brain would allow. Yes she was dependent, and she was lost in the day-to-day world, but I also learned a lot of things, unspoken and lost, beyond words.

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Out of this nettle, danger, we pluck this flower, safety.
\_(ツ)_/

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Sir Pellinore
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# 12163

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I think how we value older people tells us much about our own personal worth.

Modern Western society, in its frantic rush for "the better things in life", seems to have lost some of the best. [Votive]

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Well...

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orfeo

Ship's Musical Counterpoint
# 13878

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Serious question: if someone being a 'burden' is some kind of problem in our society, then what does that say about raising children? Because surely they represent a burden for a very considerable period of time.

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Technology has brought us all closer together. Turns out a lot of the people you meet as a result are complete idiots.

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Marvin the Martian

Interplanetary
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My nan spent the last decade of her life in constant fear and confusion, thanks to the Alzheimer's that took her a long time before old age took her body.

Visiting her in the home was horrible. There was another man there who would simply lie down and hope he was dead. Another woman was constantly angry - really angry - with everyone and everything.

But... there were also people there for whom the diseases resulted in near-constant happiness. One woman spent quarter of an hour chatting merrily to me in absolute babble (think a female Rowley Birkin, only less intelligible).

If I could guarantee to become the latter type of person, I could believe that it wouldn't be too bad. But with the risk of becoming like my nan, well I'd take the pills as well.

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Hail Gallaxhar

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Chorister

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quote:
Originally posted by orfeo:
Serious question: if someone being a 'burden' is some kind of problem in our society, then what does that say about raising children? Because surely they represent a burden for a very considerable period of time.

You do it for the sake of the potential for the future if it ever feels like a burden. Which is why there is so much soul-searching about profoundly handicapped children, especially those in great pain. What sort of future do they have to look forward to?

Such a mother I know, from a farming background, once said to me: 'If it was an animal, you'd have it put down'. She didn't, of course, but hers was (and still is) a lonely and difficult road to travel.

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Retired, sitting back and watching others for a change.

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Boogie

Boogie on down!
# 13538

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quote:
Originally posted by Sir Pellinore (ret'd):
I think how we value older people tells us much about our own personal worth.

This comment is, for me, wrong on all counts.

We value Mum so much that we spend 24/7 caring for her and anticipating her every need. No baby has been as well cared for.

I love and value her so much there isn't one negative thing I can say about her. She has been the best wife, mum and grandma anyone could ever wish for.

Her family now cares for her (In my brother's house). We take it in turns - my brother and his wife go to their boat when one or more others of us are there. When we are all together our whole focus is on Mum.

She is comfortable and, in her occasional lucid moments, cheerful.

But does she have a life? No.

If God intervened in any way he'd have taken Mum four years ago. But he doesn't, so there we are.

Like I said - I wake up every morning hoping that today is the day - then I can mourn her passing properly.

I will take a peaceful pill long before it gets to this for me. I have told my sons, and we will have a farewell party the day before.

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Garden. Room. Walk

Posts: 13030 | From: Boogie Wonderland | Registered: Mar 2008  |  IP: Logged
Josephine

Orthodox Belle
# 3899

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I understand wanting to take the peaceful pill. But when my folks were still alive, and living in their own home, my sister and I knew that we had to have a plan for Mom (who had dementia) in case something happened to Dad. And since his health was much worse than hers, that was a very real possibility.

Moving Mom in with one of us wasn't realistic, and Dad would never have agreed. So we visited every nursing home within driving distance of their home. If we had to place Mom in a nursing home because Dad couldn't care for her, at least he could visit her.

That was a real eye-opener. Some of the homes were places I'd never willingly visit, much less live. They smelled bad, and most of the residents were obviously drugged to the point of incoherence.

The best was a lovely place, and the residents all seemed content. The staff asked the families for as much information as possible about their activities and preferences about food and clothing and music and the like. They could get up and go to bed on whatever schedule they preferred, there was a lovely walled garden they could walk in at any time, they had a variety of activities to keep them busy. If they became agitated or aggressive, the staff had the doctor check them out for infection or pain, and made sure it was treated. I think Mom would have been content to live there. She might even have been as happy there as she was at home (although the change from home to there would have been very difficult -- change is hard for anyone, and doubly hard for someone with dementia).

We never had to have Mom admitted there; she died peacefully at home, which was what she wanted.

But it surprised me how many people pressured Dad, towards the end, to call an ambulance and take Mom to the hospital and "do something" to prolong her life. He could have, but going to the hospital would have terrified her -- she wouldn't have known where she was, or why she was there, and strangers would have been doing painful or uncomfortable things to her. She'd have become agitated and belligerent.

It's important to treat pain in someone with dementia. But other than that, I think it's important to avoid excessive, aggressive medical care. If their heart stops, if their kidneys fail, if they decide to quit eating and drinking, then let them die. No one can avoid death forever. You don't have to seek it out. But when it comes, and is welcome, there is no reason to chase it away.

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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!

Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003  |  IP: Logged
Boogie

Boogie on down!
# 13538

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quote:
Originally posted by Josephine:

It's important to treat pain in someone with dementia. But other than that, I think it's important to avoid excessive, aggressive medical care. If their heart stops, if their kidneys fail, if they decide to quit eating and drinking, then let them die. No one can avoid death forever. You don't have to seek it out. But when it comes, and is welcome, there is no reason to chase it away.

That's interesting. My Mum goes into a (wonderful) home for respite care occasionally. None of the people there 'decide to quit eating'. But many, including Mum, don't have the capacity to make decisions. They just don't eat unless fed. Putting food in front of them = uneaten food. Mum is capable of eating, she just needs reminding to take every forkful - then reminding to swallow.

Would you advocate not feeding them?

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Garden. Room. Walk

Posts: 13030 | From: Boogie Wonderland | Registered: Mar 2008  |  IP: Logged
Belle Ringer
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# 13379

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quote:
Originally posted by Josephine:
it surprised me how many people pressured Dad, towards the end, to call an ambulance and take Mom to the hospital and "do something" to prolong her life.

Yup, my aunt's husband had DNR on all his medical records but when the emergency workers came to the house in response to his stopped breathing they tried to resuscitate him in spite of my aunt shoving the medical DNR papers in their faces and screaming at them to stop it!

As to burden, my Dad worried terribly about being a burden, he had seen families where the husband worked hard and planned carefully to build a financially secure life for his eventual widow, but the doctors took it all in his last illness, leaving the widow destitute. He always said don't let them put him in a hospital and her on the street when his end comes.

A friend is about to lose her house for the same reason, endless chemo treatments for her man in spite of the doctor saying the treatments would most likely kill him but it was all they had to offer so they recommended trying. No one said "we'll be taking your house in partial payment."

Does anyone believe he thought a 3% chance of living a couple more years was worth leaving his woman homeless?

It's sweet to say there is no price to be paid on the value of a life, but the fact is we do put a price on it -- the price of your house and all your savings that were intended to support you and your spouse in old age, or that was intended to pay the college education of your kids.

Or your own life. When my Grandma was 90 Mom was furious at the Madeleine L'Engle book Summer of the Great-Grandmother because the book seemed to say grandma should be slowly dying at home instead of in an institution, cared for by the strong energetic youth of the family -- in the book they were able to do the job at home because she started needing help during summer vacation and kindly died just before the college semester started. Would have been a very different book if she had been dying during the semester, without all those youth around to help.

Mom had no one to help. Were her kids supposed to leave their own wives and babies and jobs (destituting their own families) and move 1000 miles to help with grandma the dozen years she couldn't live alone. Several lives for a life?

It's unfair to say "life is worth all costs" when the costs ruin the lives of those who will survive the dying one.

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no prophet's flag is set so...

Proceed to see sea
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quote:
Originally posted by orfeo:
Serious question: if someone being a 'burden' is some kind of problem in our society, then what does that say about raising children? Because surely they represent a burden for a very considerable period of time.

It says we actually don't care very much as a society about children either. This may need to be a new thread it you want to continue it. It seems to me that western countries have generally accepted two things: that schools are the main child supervision setting (though education funding via taxation does seem under attack via reduced funding), and second, that if you're not a consumer you are not of particular value to the society.

Children are potential consumers via parents, but parents staying at home for example with reduced income are discouraged via ungenerous maternity benefit policies and by reduced income post birth, and minimal tax incentives. It may be worthwhile to compare what's available for parents to Norway's to what is available in your country, which also doesn't address the additional benefits that Norway provides to working parents such as daycare provided at the location of parents' employment.

I was introduced to this when visiting one of our children who did a university term in Norway - the professors would sometimes have lectures interrupted because their child at the university department daycare needed something, and this was considered acceptable and necessary. One wonders what elder care might look like if it followed a similar model. Could you be interrupted at work by your elderly parent or relative, and the place of care be close enough to work to make it possible to have a break to attend to the person? Why not?

[ 28. June 2012, 14:10: Message edited by: no_prophet ]

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no prophet's flag is set so...

Proceed to see sea
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quote:
Originally posted by Belle Ringer:
It's unfair to say "life is worth all costs" when the costs ruin the lives of those who will survive the dying one.

Your post is poignant and disturbing. It underscores, for me, the necessity for a country to organize itself to provide benefits to its citizens. This would never happen in most other countries, because the health care is available to all citizens without payment. In fact, the Canada Health Act makes it illegal to bill patients directly for government insured services. Thus, losing your house because you are old and sick does not happen. It does make me not understand the intense resistance to mandatory health care in the USA. I firmly believe that if proper social supports are available, such as health care, and home care support for families with old people to care for, issues such as 'allowing' or forcing the hand of the elderly to end their lives would seldom exist.

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Marvin the Martian

Interplanetary
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quote:
Originally posted by Belle Ringer:
I used to sit in the very back of the church on a bench against the wall next to an old couple, the woman would cling to my hand tightly through the whole service, saying she feared the day her husband dies, she'll have no one to talk to. The loneliness of old age is cruel. (She was in one of those "warm cozy" churches for those who grew up together. She didn't.)

I dropped out for a year. Went back and looked for her but didn't see her. Wonder what happened to her, but I didn't know her name.

I have a question about this that can't be asked in Purgatory.

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Hail Gallaxhar

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Marvin the Martian

Interplanetary
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quote:
Originally posted by Josephine:
No one can avoid death forever. You don't have to seek it out. But when it comes, and is welcome, there is no reason to chase it away.

This is wisdom, right here. I'd say "words to live by", except that doesn't quite sound right in context...

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Hail Gallaxhar

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Josephine

Orthodox Belle
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quote:
Originally posted by Boogie:
quote:
Originally posted by Josephine:

It's important to treat pain in someone with dementia. But other than that, I think it's important to avoid excessive, aggressive medical care. If their heart stops, if their kidneys fail, if they decide to quit eating and drinking, then let them die. No one can avoid death forever. You don't have to seek it out. But when it comes, and is welcome, there is no reason to chase it away.

That's interesting. My Mum goes into a (wonderful) home for respite care occasionally. None of the people there 'decide to quit eating'. But many, including Mum, don't have the capacity to make decisions. They just don't eat unless fed. Putting food in front of them = uneaten food. Mum is capable of eating, she just needs reminding to take every forkful - then reminding to swallow.

Would you advocate not feeding them?

No. And maybe "decided" is the wrong word for someone with dementia. But when the person you're trying to feed closes her lips and turns her head, or when she accepts the food, but won't swallow it, even when prompted, then you have to ask why. If she's got painful sores in her mouth, you need to treat the sores. If she's got a stomach ache or is nauseated, you might need to give her gingerale and soda crackers instead of her regular food.

But if there is nothing wrong, other than the not eating, and she seems happy and comfortable in every other respect, you can and should continue to offer food and drink. But if the food and drink continue to be refused, I don't think force-feeding or feeding tubes should be used. At least when my mother was still alive, the medical research showed that they really didn't do any good, and could do significant harm.

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Organ Builder
Shipmate
# 12478

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quote:
Originally posted by Marvin the Martian:
quote:
Originally posted by Josephine:
No one can avoid death forever. You don't have to seek it out. But when it comes, and is welcome, there is no reason to chase it away.

This is wisdom, right here. I'd say "words to live by", except that doesn't quite sound right in context...
I'll add my accolades to Marvin's. The fact remains, we will die. These carbon-based bodies simply won't last forever, and the end is as likely to be painful and extended as easy and peaceful.

If I age as my parents and grandparents did, dementia will not be a problem for me. Regardless of how I die, it is likely that I will be aware until the final coma--barring a fiery plane crash, or something of that ilk. Some of my forebears have slipped away peacefully and easily--I would have no problem continuing to the natural end in such a case.

Others have spent the last few months begging God to take them, because it was clear they were going die and they were in pain. (The American fear of pain medication is probably worth a Hell call of its own). I had no say when the feeding tube was given to one of them, prolonging the agony for another 4-5 days. If I'm placed in the same situation, I pray I have the strength to take the pill--not because I don't value life, but because I do.

Dependence or fears of "being a burden" aren't really part of my motivation now, in my mid-50s. That may change as I get older. I've done all the appropriate paperwork, though, to make certain extraordinary measure to keep me alive for just a few more hours will not be taken.

[ 28. June 2012, 16:23: Message edited by: Organ Builder ]

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How desperately difficult it is to be honest with oneself. It is much easier to be honest with other people.--E.F. Benson

Posts: 3337 | From: ...somewhere in between 40 and death... | Registered: Mar 2007  |  IP: Logged
que sais-je
Shipmate
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quote:

This implies that a human life has no value without autonomy.

My mother has dementia. I think she still recognises me. She can respond to some simple requests but never speaks voluntarily. When she becomes worse, so that she can neither understand what is happening nor express in any way how she feels, will she still have a 'human' life. To use philosophers terms, she will be a human animal but will she still have human being?

People often say we wouldn't treat animals the way we do people, but when a person enters the later stages of dementia we are dealing with someone whose 'being' has become that of a terrified unknowing animal.

For myself, I'd put the dependency issue differently. I'm a child of the UK NHS and it's looked after me well for over 60 years. If I become permanently incapable of communicating in any way I'd prefer to die and free a few NHS resources for the sake of others who still have a life to look forward to. A sort of exception is than my Lasting Power of Attorney says I can be kept alive if it would facilitate later organ donation - assuming any of the bits still work.

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"controversies, disputes, and argumentations, both in philosophy and in divinity, if they meet with discreet and peaceable natures, do not infringe the laws of charity" (Thomas Browne)

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Angloid
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My mum died in a care home last year after suffering dementia for at least five years. Before that she had long spells of depression. In the early stages she was distressed and bewildered, but within the last two years she became much more serene; no longer (apparently) depressed, she hadn't got a clue where she was but gratefully accepted the care from the staff and welcomed visits from me and other family members.

Her whole life had been devoted to caring for others and being 'useful', both as a wife and mother, and a domestic servant. Before the dementia set in she worried, and felt guilty, because she wasn't able to do anything practical; once she learned to accept dependency she was a changed person.

I wouldn't have wanted her to suffer physically, and the standards of care in the home were noticeably deteriorating towards the end (it was part of the notorious Southern Cross chain) so I am glad she died when she did.

But [a] I don't think it is possible to judge the quality of life of anyone else, especially someone who isn't able to communicate effectively, and [b] dependency is not an aberration or a bad thing, but part and parcel of being human.

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Brian: You're all individuals!
Crowd: We're all individuals!
Lone voice: I'm not!

Posts: 12927 | From: The Pool of Life | Registered: May 2001  |  IP: Logged
WhateverTheySay
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# 16598

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I know I am not exactly qualified to comment here. But I believe that whether or not to take the pill would have to be a matter of individual choice. And that choice would have to be made when well.

For me personally, my independence is my strongest characteristic. No way would I be willing to lose that. Most important to me is having the ability to live alone. I just aren't social, so would never allow the situation where I don't have that escape from the rest of the world. Other things I could lose, but never my independence.

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I'm not lost, I just don't know where I am going

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Amanda B. Reckondwythe

Dressed for Church
# 5521

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quote:
Originally posted by WhateverTheySay:
For me personally, my independence is my strongest characteristic. No way would I be willing to lose that. Most important to me is having the ability to live alone.

That's the thing. My father is completely lucid but can go nowhere without assistance. He cannot prepare meals or clean house. He has difficulty controlling his bladder. Lord take me before I reach that point.

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"I take prayer too seriously to use it as an excuse for avoiding work and responsibility." -- The Revd Martin Luther King Jr.

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Raptor Eye
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# 16649

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I've been touched by some of your replies, which between them bring up many different angles of observation of others suffering from this terrible disease.

I agree that it seems more of a cruelty than a kindness to resuscitate or artificially prolong the life of someone with an incurable terminal illness like dementia.

I understand the nightmare of trying to imagine how we would feel if we contracted it ourselves, and the desire to prevent that, particularly by finding a cheaper alternative to being cared for by specialists.

I know that I've learned a lot from regular close contact with people suffering from dementia. One lady in her nineties who is usually rude sat with me yesterday. Her face lit up with a smile and we held a conversation for a few minutes before she wandered away. Is her life valuable, even though she must be looked after? I think so. I can't put a price on it in terms of money, or of productive output, or of autonomy.

The person I go to visit was always fiercely independent. She knew about care homes as she worked in them. She used to say that she never wanted to live in one herself. Now she has adjusted to the move and become familiar with her new routine, surroundings and fellow sufferers, she has a serenity about her and a contentment that was missing before. Many factors have met to make this possible, including the welfare state and the ethos of the care home and its genuinely caring staff.

I hope and pray that if I contract dementia this will be an option for me too, and I won't be offered a pill under duress from a societal attitude which says that I'm selfish if I don't take it.

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Be still, and know that I am God! Psalm 46.10

Posts: 4359 | From: The United Kingdom | Registered: Sep 2011  |  IP: Logged
Patdys
Iron Wannabe
RooK-Annoyer
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I have a relational theology.
It really does hinge on

'Love the Lord your God with all your heart and with all your soul and with all your strength and with all your mind'; and, 'Love your neighbor as yourself.'

which is what I bang on about here when I am not amusing myself with being a smart arse.
Part of being in relationship, is at time providing for others and at other times, receiving from others. There is love in being dependent- as much as in providing support. Being a neighbour, you see.

Now, death comes with living. We will all die. Personally, I advocate for a good death. This is not euthanasia, for I do not see relationship in hastening death. If it is a byproduct of good compassionate care, then I see that as fine- but not as an aim in itself.

But neither do I see any need to delay death. Every case is different, and I would treat every case differently. There can be love in both feeding and not feeding, giving pills and not giving pills. Where love fails is when this decision is not wrestled with, where the thoughts simply aren't thought. Where the person is so non person, that they simply aren't considered. But the decision, Ahh, that may be different every single time.

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Marathon run. Next Dream. Australian this time.

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Uncle Pete

Loyaute me lie
# 10422

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My sister in law has dementia. Until she had a small stroke last year, she and her dog, Molly lived independently, but watched.

Now she and Molly are in a retirement home. Her meds are monitored and her food prepared. But except for walking Molly and going for meals, she sits in her room with the television.

When we visit, she is cheerful and goes on merrily about anything longer than 10 years ago. But she can't remember I visited her that morning, and is pleased to see me in the afternoon. I miss the vital, opinionated woman she was, but she has been my friend for nearly 60 years. I can put up with repeated conversation.

But Let's make a deal and The price is right? No. Please, no.

As for myself I am already dependent on others. I can do basic housework and cook. I hope to be carried from my home feet first at the end of my time. I fear a nursing home and the loss of vestiges of independence. If that happens, I wonder what I would do?

As I see my SiL, this is beginning to trouble me.

Beyond making some careful preparations, I will have to leave it all in the hands of God, who has brought me this far. I just hope I will agree with Him.

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Even more so than I was before

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PataLeBon
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# 5452

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My grandmother had dementia. She was in a nursing home for quite awhile. By the end she didn't even recognize her own children. She had difficulty recognizing me years before that and eventually didn't at all. But she was happy, even though she always asked where her stove was and when the nice people at the restaurant were going to stop feeding her.

I would have to say that I probably wouldn't want to be that way, BUT she was happy if confused. She did become ill several times, and we prayed that God would do what was best for her. Several times God's answer was to keep her alive. When she became sick the last time, God apparently decided that she had had enough.

I always look back on that that God knew more than we did. We simply made sure that she was safe and happy. As to what was going to happen, we left to God. It was much harder on us than her, but we were probably better able to handle it.

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That's between you and your god. Oh, wait a minute. You are your god. That's a problem. - Jack O'Neill (Stargate SG1)

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Boogie

Boogie on down!
# 13538

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quote:
Originally posted by PataLeBon:
She did become ill several times, and we prayed that God would do what was best for her. Several times God's answer was to keep her alive. When she became sick the last time, God apparently decided that she had had enough.

I don't believe that at all. God doesn't 'keep people alive'. A God who kept people alive in terrible pain and misery would be a mean and cruel God indeed.

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Garden. Room. Walk

Posts: 13030 | From: Boogie Wonderland | Registered: Mar 2008  |  IP: Logged
Boogie

Boogie on down!
# 13538

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quote:
Originally posted by PeteC:

Now she and Molly are in a retirement home. Her meds are monitored and her food prepared. But except for walking Molly and going for meals, she sits in her room with the television.

When we visit, she is cheerful and goes on merrily about anything longer than 10 years ago. But she can't remember I visited her that morning, and is pleased to see me in the afternoon. I miss the vital, opinionated woman she was, but she has been my friend for nearly 60 years. I can put up with repeated conversation.

But Let's make a deal and The price is right? No. Please, no.

Agreed - but thank goodness for TV, I have no idea what Mum would do without it. It keeps her focussed and old programmes like 'Dad's army' even have her chuckling.

[ 29. June 2012, 05:48: Message edited by: Boogie ]

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Garden. Room. Walk

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PataLeBon
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# 5452

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quote:
Originally posted by Boogie:
quote:
Originally posted by PataLeBon:
She did become ill several times, and we prayed that God would do what was best for her. Several times God's answer was to keep her alive. When she became sick the last time, God apparently decided that she had had enough.

I don't believe that at all. God doesn't 'keep people alive'. A God who kept people alive in terrible pain and misery would be a mean and cruel God indeed.
Except she wasn't in pain and misery. Maybe when she was sick, but she got better and back to her normal. We (the family) were the ones in the most misery. I think that asking her to take a pill to end her life so that we wouldn't suffer has much more to do with what the family could handle, and not her own pain and suffering.

That just doesn't seem right. Shouldn't this be about her and not about us?

(FWTW - she did have a DNR, so treatment was done to ease her suffering, not prolong her life.)

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That's between you and your god. Oh, wait a minute. You are your god. That's a problem. - Jack O'Neill (Stargate SG1)

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rugasaw
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# 7315

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Strange things can happen. The last days of my dad he lived in a nursing home. Shortly before he died one of the other residents came by us and started talking about my dad. She said she always had a crush on him and that he was so wonderful for helping her pass math in high school. It was a true blessing to have those kind words freely given. I found out later that she couldn't remember her own grandchildren or anything recent and that she was going downhill quickly. It may be selfish but I am thankful that nobody decided to give her a "pill".

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Treat the earth well, It was not given to you by your parents. It was loaned to you by your children. -Unknown

Posts: 2716 | From: Houston | Registered: Jun 2004  |  IP: Logged
Bax
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# 16572

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Having a condition like dementia is no fun for either the sufferer or their friends and family. But is allowing them to kill themselves an appropriate "solution"?

Does it not rather show up our society as being obsessed with youth and uninterested in anyone who cannot care for themselves?

Western society as whole does not give a s**t about people like this (and many others besides) as it has sold out to a vision of nirvana provided by consumerist capitalism. Legal Euthanasia is perhaps the logical end to this.

It all sounds rather like the "final solution"...

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barrea
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# 3211

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My wife was diagnosed with vascalar dementia
a couple oh years or so ago,and I myself find it difficult to walk around these days, but we manage, and if we could't manage and had to go into a home in time to come, we would hate it, but I would'nt take a pill to end it all. Life is precious whatever age you are.
I am most thankful to God that we have a National Health Service in this country and don't have to worry about where the money is comming from to pay for drugs or treatments, I just can't understand the American attitude that wants to deny their fellow men and women access to these things.

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Therefore having been justified by faith,we have peace with God through our Lord Jesus Christ.
Romans 5:1

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Lamb Chopped
Ship's kebab
# 5528

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I don't think anybody wants to deny anyone these things (well, I have other dark thoughts when I'm dealing with insurance sometimes!) but it's just we're mortally afraid of the possible consequences of going to a national health system--a) going under financially (more than we are already, I mean) and b) knowing very well that at some point someone will make a decision regarding us, or our loved ones, that we violently disagree with--on the basis of cost. I think those are the bugbears that scare us.

But as for happiness in dementia, I'm another who thinks Grandma was happy and peaceful once she'd passed the stage of Alzheimer's when she knew she was losing it. It hurt us like hell to watch, but not her. She had love, she had tiny pleasures (like applesauce). And we had the resurrection to look forward to...

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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!

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