Thursday, August 11, 2011

Of Death, Census and Resources

At this moment, my grandfather lies in an induced coma in intensive care.

On Tuesday we got a phone call saying he had only a few hours left to live, and that if we wanted to say goodbye it was time. It happened so quickly, the day before he appeared fine.

I have never been close to him. I honestly could not say that I love him, I've never had the opportunity to. But still, hearing that someone you have known your entire life, your Father's Father, is about to draw their last breath is confronting to say the least.

His diagnosis? Pancreatitis. Necrosis. Septicemia. They're ugly words. Ugly to read, ugly to hear. Though far worse to experience them, I can tell you.

You know it's serious when you are escorted through a packed triage to a resus alcove of the emergency room with a sign on the door that says one visitor at a time and they let in three adult children, one adult grandchild and one great grandchild in a massive pram. The rules don't count at times like that.

I go over, kiss him hello and squeeze his shoulder, the only place that doesn't seem to have tubes or wires coming out.

"Hello, Glow, you're looking good"

"Hey Pop, Yeah I'm real good. Got a few tubes going on there, don't ya?"

Stilted, pathetic conversation. I don't know what to say. What can you say? I only came because you're dying? He knows that anyway, I'm sure.

I stand back and watch the scene unfold, not wanting to get in the way. I thank some unknown deity that Tricky is managing to sleep through all the chaos. A screaming toddler is not a welcome addition in a room thick with tension.

His heart rate and blood pressure are wildly erratic. They soar and bells chime, then moments later they plummet and yet more buzzers go off, this time with more urgency. I watch the numbers drop, drop, dropping and he blacks out. I've never been in a situation like this before, and it occurs to me that I might be about to witness someone die.

The medical team aren't rushing about like you see in the movies or the reality emergency room shows. It's so obvious, even though they are amazingly supportive and empathetic, that they are certain of how the events are about to unfold. Why rush? They are doing a slow, perfectly choreographed waltz of death.

Death Invites the Old Man for a Last Dance - Frans Franken 1635
It's bizarre how your mind works when the Grim Reaper himself is in the room, looming in the shadows. As the machines alarm announcing his heart failing, I find myself wondering if he's filled out his census form yet... if he dies will they still hand that one in or fill out a new one? My cheeks burn, and I flush with shame that I let my mind go there.

He is in and out of consciousness but when he is there, he is lucid. He knows exactly what is happening and it tears at my insides like a rake dragging across flesh. How bizarre must it be to hear people talking in hushed tones about you? Whispering "he's a very ill man... he doesn't have much time left" and knowing that it's about to all end. Laying there wondering what's on the other side. Praying? Cursing? Regretting?

He grasps my aunt's hand, "Look after your mum. Don't put her in a home."

My grandmother, so small and weak and fragile, holds his hand silently. I can see her heart breaking. For a couple who seemed to never smile, never laugh, never show any signs of affection to anyone... here they are, showing me that there is love there. I am surprised, joyful and saddened at the same time.

He chooses to have surgery, with only a 20% chance of surviving. For her. A 20% chance to get better, go home, and care for her. It's all for her. 

And all I can think, even as I watch it happening to my own family; my grandmother broken, my aunt openly weeping for her 'Papa', my father and uncle steeling themselves with arms folded across their chests; is what a waste of resources. 

He is an old man, not just knocking at death's door but stepping over the threshold. How many thousands of dollars are being spent to prolong his life? And for what? A few extra days in a coma?

Where do we draw the line? Where does quality of life come in? And whose quality is more important; the person about to die or the people they leave behind to pick up the pieces? Who gets to decide that?

EDIT: Thank you all for your lovely comments. I have replied to those that left a story and an email address. I find it really hard to reply to comments like these, my usual sarcastic self doesn't quite know what to do. 

My grandfather passed away at 1:20pm on Monday 15th August with his wife, five children, two of their partners, three grandchildren and one great grandchild by his side.

48 comments:

  1. Firstly, I am sorry that you are facing this. 

    Secondly, I would think that as long as that person is of a sound mind, any decisions regarding their health care should be up to them. 

    Thinking for you dear Glow.

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  2. Certainly not what I was expecting your post to be about, your tweets belie your agony a lot don't they, amazing girl? xxx

    The first person who died before me in an ED was my grandmother. The whole nurse straddling the cart, CPR, wheeling past in a blur futile effort to resuscitate an 83 year-old. Twenty-five minutes, they spent. And I was the next of kin having hard decisions forced upon me as the family's only voice and my grandmother's advocate. The next person I witnessed to die happened in bizarrely the same fashion - although the CPR was performed so delicately on my daughter's tiny, fragile chest.

    Crossing that threshold is not nearly as frightening for the dying as it is for the witnesses. I'm absolutely sure of it. There is a serenity if we let it come in. But it's hard to get past the panic, the visuals, our own fear. So, so hard.

    T, if you wanna email me? You know where to find me, yeah? SO much love to you today. *tears*

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  3. I'm so glad my parents (88 & 85) and MIL (82) have all got the DNR, 'no heroic measures' type of forms signed which answers the question if they are unable to answer it themselves, though I do wonder if faced with the same situation while conscious, what they would opt for.
    I hope your pop's last dance is brief and pain-free. x

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  4. It's a tough one, Glowy. I've watched someone die (my mother) and it is an awful experience. Not always (I'm told) but it was not remotely peaceful in her case.

    I'm inclined to agree with you though.  Sometimes those 'extraordinary measures' do more harm than good. They prolong suffering, both for the patient and for the ones hanging on to that last glimmer of hope. 

    It was my mother's wish not to have any. I'm grateful for that. As much as there's almost nothing I wouldn't do to have her back again, I would not wish her final days on anyone. From being told there were a couple of hours left, it took 5 full days for her heart to finally give up the fight.

    I hope that he goes peacefully.  I wish for peace for you and your family, but particularly for your Grandmother.  It's hardest on her.

    melissa.mitchell@live.com.au if you want to talk.

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  5. Firstly, *hugs*.

    If it hasn't been done already, someone needs to write a book about communicating with people on their deathbed, because knowing the right things to say can be very difficult - especially when you aren't particularly close to the person.

    Last year my grandmother-in-law lay in a hospital bed with only 2 days to live. When she thanked me for making the effort to drive up (2.5 hours away) with my daughter and see her, I replied: "You're welcome, we've been dying to come up and see you." KICK MYSELF!

    As if that wasn't bad enough, in response to something else I said to her: "No, you've got to wait for the priest to come" which brought a look of terror to her face. KICK MYSELF EVEN HARDER!!

    I desperately need the book on what NOT to say to people on their deathbed.

    My uncle-in-law refused the operation which would have given my grandmother-in-law and extra month or so of life - in a hospital bed. I greatly respect his decision to let his beloved mother go and be out of pain and at peace.

    So often these decisions are made by family members desperately and understandably trying to hold on to their loved ones, and sadly they aren't always in the best interests of the patient.

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  6. I am a very firm believer in this.  I was my mother's main carer, but no matter how many times a nurse/dr/palliative care expert eyc would 'suggest' to me that I 'just slip' an extra drug into her drug cocktail (I crushed and administered her drugs via a PEG), I swore to her that as long as she was conscious and lucid, she got to make the calls, even if I disagreed with her (and sometimes I did).

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  7. Big hugs Glow, I'm sorry to hear your family is going through this.

    I work in a hospital and I can not tell you how many times I've wondered WHY we are wasting resources. Heartless? I don't think so. When you have a lady the colour of an orange telling you she doesn't have pancreatic cancer and she will live and go home, and seek all the active treatment neccesary I do wonder, surely that money is better off spent on someone who isn't in their 70's.. Someone who doesn't have private health insurance like her (but is choosing not to use it).

    Maybe it's time to look at a not for resus order?

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  8. As someone that has held the hands of two people as they took their last breath, and then had to be the strong one for those falling apart in the aftermath, I can say with some certainty that most of the last ditch efforts are for the mental health of those left behind.

    Your grandmother will know that everything was done.  And that will help her come to terms with it.

    There is also the fucked up laws.  My nanna basically died of dehydration.  Massive stroke, they said she would not come out of.  But instead of being able to give her dignity and an injection, she held on for a week - no fluids.  I knew - after discussions with the nurses - that the end would come when her catheter bag was full of dark fluid.

    Nice huh?

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  9. Oh, Glow...I don't know if you realise this, but I think you've hit the core of the forever in debate, confronting issue of euthanasia.
    It's a hard one.  
    So many different factors involved in each and every individual situation.
    Thinking of you and your family during this tough, tough time x

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  10. Big hugs to you, and especially your grandmother.

    You sure do ask some tough questions. I'm sure I don't have the answers! But yes, I think that sometimes the prolonging of a life is done for the benefit of those that will be left behind, and is that really the best thing to do? What would I want for myself, if I was the one dying? I don't know, will be pondering this for the rest of the day I think......

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  11. No words. Just love and support for you and yours xxx

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  12. Darling,  even when it is expected, it is still shocking.
    You raise some really good, thought provoking points.  Thinking of you xx

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  13. A very thought provoking post.
    I am really at a loss of what to say.
    My mum passed away from Pancreatic Cancer when I was 18 and she was 53. I too question why they gave her surgery on her bile ducts just to prolong her life. The surgery just made everything so much more painful and drawn out. I didn't want her to die, but I certainly didn't want to see her suffer such a horrendous experience, which in turn was a horrendous experience for my dad, sister and myself as well.
    here is my posts on my experience:
    http://mylifestrangerthanfiction.blogspot.com/2011/05/dear-diary.html
    http://mylifestrangerthanfiction.blogspot.com/2011/05/dear-diary-part-2.html
    Thinking of you and your family at this time Glowless xx

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  14. In the hours before my grandfather died, about 15 years ago now, the family stood by his bedside to say their goodbyes.  My grandfather was in his late 70's and had just suffered his third stroke and was incapable of moving or talking.  When it was my turn I went to his bedside, crying, and the only movement he could make was to look at me with his eyes while I held his hand and in that one look I saw the reflection of 24 years of love that he had for me.  It was almost like he was willing me to see the love that he had for us because he couldn't say it.  I don't think I have ever seen a look of such expression in my life and I've never forgotten it.  We never got the chance for him to have an operation or try some new fandangled therapy because his time had come, but I am glad I was there to share that moment with him.  And I was a lot younger then, if there had been an option to keep him alive I would have jumped at the chance because I didn't want to lose him.  Now I can see that his quality of life may have been so diminished he might not have wanted to be saved.  Thinking of you xxx 

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  15. Becky from Becky and JamesAugust 11, 2011 at 1:58 PM

    I don't know what to say, so I will just send love x

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  16. So sorry for you. I've been in that room before and it's not nice. XXX

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  17. You have moved me to tears, thoughts of my own grandfather filling my mind who I was close to and still miss 5 years on.

    Even if you weren't close I still think you being there was lovely , even if just to support your own father. Xx

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  18. I love you. 
    I just want you to know that. 

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  19. Glow, my grandad, also my father's father, passed away recently, and yes, he too suffered before we left us. My sis got to see him and said he was in a pretty bad shape. He was 90 mind you. I did grow up with him but we had a weird relationship, he was an authoritarian. And due to other stuff that happened in my life, we didn't talk for more than 10 years. In a way we were glad he passed on so that he wouldn't suffer. I feel sorry for my grandma though, his soulmate who is now living just with my aunt. So I totally understand where your grandma's coming from. The scary thought of being by herself is why she's probably hanging to anything and everything to keep him alive. And I also see where you're coming from too. It is sad to say, but it is a waste to save him for the sake of those around him - your grandma. I am sorry to see you going through this. And yes, you are right, whose quality of life are we trying to save? xx

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  20. x hugs x. beautiful that you could see the love that your grandparents have for each other. such an incredibly difficult question, about prolonging life. I am grateful that we live in a country where  there is actually a choice about whether to have surgery or not. My thoughts are with you and your family. x

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  21. You are totally awesome for being honest that your mind wandered to the Census.

    My husband came home from a funeral today. His father's Uncle, aged 91. He is being cremated, and his body was in a casket at the funeral. I was thinking to myself, "So, do you have to pay for the coffin if you're being cremated? What happens to the coffin? Do they sell it to the next guy?" [Lucky my empathic, sensitive self stopped me from asking.]

    In intense times like these, don't judge how you feel or what your mind does. Just feel what you feel and think what you think. There's no right or wrong in this.

    You are totally the best. So not surprised you're going to be a paid writer soon.

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  22. What a terribly moving post. My Father, 82, has been in hospital with Pancreatitis. He is home now, but not well. I have always believed in not prologing the inevitable. It is our own selfish feelings of grief and loss that will allow us to watch our loved ones endure pain and suffering when their time has come.
    Having said that your grandfather is still quite aware of what is going on, so yes it should be his decision.
    Peace and love to your family during this time and hugs for such a brave post xx

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  23. I don't know what to say to this. Hugs.

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  24. Big hugs.  This side of life sucks the big one.

    My 88 year old dad, who is completely with it and lives with my Mum - next door to me - is having both of his knees replaced in a couple of weeks.

    He had to be assessed by a seemingly never-ending round of doctors in order for them to come up with a number that represents the number of years that he is likely to live.  And because that number (4) seemed to be acceptable, he is "allowed" to have the surgery.  

    And of course, all I could think was... "How will he feel if he was rejected because some jumped up 12 year old with a medical degree doesn't think he's going to live long enough to make the cost worthwhile?"

    He needs the surgery.  The pain is unbearable and he treasures his mobility enough to put up with the agony that the surgery, and recovery, will entail.

    Being him... (he is amazing)... he called in the funeral home and organised everything.  The lot. 

    I've been accepting for a while that the downside of having my lovely parents live to ripe old age is that losing them might be a long, slow, complicated, drawn out process.  Filled with awful decisions.

    Fingers crossed that those decisions are still a long way away.

    Fingers crossed that your grandfather comes out of his medically induced coma and does well.

    (((((hugs))))))

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  25. Oh wow. Two thoughts your post has triggered:
    1. This is why I friggin hate hospitals2. I hate watching the people I love get old and sufferI wish there was a more dignified way for people to say "you know what, it's my time".

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  26. Hubs faced a very similar situation a couple of weeks ago. His Grandfather was on his way out and he doesn't know him. It was quite hard for him too, as all other family was away so he was the only relative there. And he too was talking about his wonder about the waste of resources. His Grandfather was an alcoholic who ruined his own health, and yet there were so many medical people working so hard trying to give him a bit longer? But I think a life is a life, and we just do what we can to give people life. It doesn't always work, but it's the kind of thing that can't be judged properly, so is better to just work to save everyone.

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  27. Hard questions. Hard for the person who knows they are dying & hard for the family, for the wife that doesn't want her husband to leave her and will cling at any chance.

    This is where you need an advanced directive, so you can make your decisions about the extent to which you will go to prolong your own life when you are not knocking at death's door. Make the decision with a clear head, using logic and not emotion. When death is in the room, there is no logic.

    For me, the gross waste of resources is on those who end up with smoking related illnesses and then go back to smoking, only to need more treatment. There has to be a line, some responsibility for one's own actions.

    When the time comes, I hope your grandfather leaves this world without pain, in peace, with his wife by his side.  xxS

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  28. You do have to pay for the coffin, even though it isnt burnt, because it has had a body in it. I dont know what they do with it after though. Disinfect and sell it again?

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  29. Martine@themodernparentAugust 12, 2011 at 5:29 AM

    I remember when my daughter was in intensive care and I was bringing my best friend in for a visit she said "it's not fair her being in with all these old people, they have all had their lives, they should be concentrating all their resources on your little girl". 2 years later however when I was in the same situation with my nan, I remember thinking, and even saying to the doctors, " just because she's old you can't give up on her....she is still desperately wanted and needed". it is such an awful hideous situation no matter what the circumstances.

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  30. Big love to you gorgeous x

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  31. *sigh*
    Life and Death.
    It's is the arse end of the wonderful end of a journey that begins with "it's a BOY" in your case...and to Pop "Look after your Mum"

    As I write, I have no idea of his survival or not.

    But I stand firmly in your camp.

    Surgery to "come home" to care for his wife is such a wasted resource.......
    I am not being a cold bitch here.......
    my mum found she had brain tumours which "may" be able to fix surgically but they were secondaries, and no-one, MUM herself, wanted surgery.

    The neurosurgeon was pleased that our mum, dad, and with us, her two kids talking about it, that Mum underwent no further intrusion. She died some 6 weeks later in comfort.

    Love D XXX

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  32. It's so hard. I was in a similar position this time last year, sitting there, 8.5 months pregnant being told my nan wouldn't last more than a few days. What the Doctors didn't realise is that my nan is strong and stubborn. She was determined to see her first great granddaughter born and today she's in the best health she's been in for years. 
    But it's hard. And heart breaking. Watching people you love (your dad, aunt, uncle) suffer can be so upsetting.
    Hugs to all the Glowless family, know that 'this too, shall pass'
    X

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  33. Could have written an exact replica of this late last year Glow. I didn't have a close relationship with my Pop either, but to see my Dad and his siblings go thorugh weeks of 'you better come in, he hasn't got long left' was heart wrenching. Whatever happens, all you can try and hold onto is that the family was together and no one had to be alone at such a hard time :-)

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  34. I went through the same thought process last year.... Mr's nanna was hooked up to every machine possible and it was the worst thing to be in that room. I didn't know what to say, didn't know what to do.... It had only been a few months since pop had passed and all I could think of was "it isn't fair we are going through this again"!! WE?! I have never felt so selfish in my life, and I still feel guilty about it. But I have been told that it is a natural thing to think and feel.

    I'm so sorry that you are going through all this.
    Much love you you and your fam.
    xx

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  35. Such a hard one :( I am another who has experienced this. My dad (who turned 92 the week before he died-older dad :)) had been living with Alzheimer's disease for 5-8 years (5 years of diagnosed Alzheimer's). He went into hospital after breaking his pelvis and basically started to go downhill very fast. He caught pneumonia and we were told not to expect him to recover, but he did. He was a fighter-stubborn old bugger too :)  However, it had gotten to the point where my mum was worn out from being on 24/7 carer-the dementia had made him very hard to live with and she was on the verge of a nervous breakdown. The hospital spell was a relief for her, but I also believe it took dad's will to live. Within 4 weeks we had to make the agonising decision on whether to try and treat him-and then probably send him to a nursing home (which he would have despised with all his heart) or to transfer to palliative care. At the age he was, with little quality of life left, we chose the palliative care. He died within 5 days. It was a heartbreaking decision, and not one made lightly. Dad was not in any mental capacity to make his wishes known, and by the end had lost the ability to talk. I still feel incredibly guilty on one level-but dad, a once proud, highly intelligent man would have hated the way the disease attacked his mental ability. It's impossible to know what he would have chosen-but I don't think he would have wanted to keep going in that state-and I know for sure he would have fought going to a nursing home with every fibre of his being.

    Sorry for the essay :) I really feel for your family, and any family forced to make this heartbreaking choice. 

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  36. I write a long reply before and stupid Windows Update rebooted my laptop in the middle of writing it, grr. Basically what I said was I am sorry you are faced with this :(  I have a lot of empathy for any family faced with this decision. We made the decision to not continue to treat my 92 yo dad (yes he was an older dad :)) 18 months ago after he went into hospital after a fall, and went downhill fast. he was living with Alzheimer's disease, which meant he was incapable of making his own healthcare choices and my mum had enduring power of attorney. It got to the point where he was incapable of speech, and he would  have to go to a nursing home-which would have been akin to being in the 9th circle of hell for my father :(  So we made the decision to cease treatment and allow transfer to a palliative care unit. He died 5 days later. It's an impossible and agonising decision, because either way, the outcome is never going to be good :( But we didn't think he had much chance of quality of life, so the decision to let him go, while not made lightly, and carrying with it a huge amount of guilt, I still believe was the best one.

    Much love to your grandparents and your family. My thoughts are with you.  

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  37. Sending hugs.
    Great post, and important issues. I guess hope is such a powerful force that while there is still some breath in a person's body, some chance of extra time, many of us cling to that hope and support whatever action is available. Just in case.
    My grandmother died last year and my heart broke several times every hour for my pop, my mum and her brother and sister, and for my younger cousins, as well as for myself. Such an awful time, no matter how close you are to the patient. Thinking of you.

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  38. if i'm totally honest and blunt, i'm very surprised that at his age and stage of illness that they offered him the surgery - the unwritten rule is that the older the patient, the sicker they are and the less likely they are to make it through surgery or for the surgery to have a profound impact on extending their life, the less likely they are to offer the choice of surgery or even suggest it.

    i remember when Dad was diagnosed with terminal cancer. they offered him treatment which would extend his life from 12 months to 18 months, so not a long time in the grand scheme of things. the 6 months before his diagnosis, he had seen a childhood friend battle bowel cancer - her life for the last 6 months of her life consisted of driving an hour to the hospital everyday for treatment and then coming home and collapsing in bed - the treatment extended her life by 6 months but honestly, what life? it was not a quality life she was leading for those 6 months.

    Dad had one session of chemo. it made him as sick as a dog and he decided there and then not to have anymore - mum really struggled with his decision at first but at the same time understood it, i totally understood it but of course was painfully aware of how little time we would have left with him. we lost him within 5 months but you know what, up until the last 2 weeks of his life you wouldn't have even known that he was dying - he DID have quality of life basically right up until the end.

    it's a tough one. people naturally want themselves or their loved ones to be alive as long as possible and so will grasp at any opportunity offered to them in order to keep them here with them but it must be asked, at what cost? not only for the "patient" but also the family and yes even for the healthcare system. it's a slippery, dangerous, judgmental slope that's hard to navigate at the best of times.

    i'm so sorry about your Grandfather xxx

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  39. Veronica @ Mixed GemsAugust 13, 2011 at 8:04 AM

    I guess all your questions are natural. The timing of when to ask could be better, but we seldom think about such things till they are upon us, do we? Maybe we should. Even when you are not close to someone, death can be so confronting. I have only been with someone once at the time of their passing (my FIL) and though I was not close to him, it was still a very sad and sombre moment. And I did shed tears. It's one of those life experiences that stays with you. All the best to your and your family at this difficult time.

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  40. I am terrified of death.  I'm caught between not wanting to know when it happens, and wanting to be able to say goodbye. Neither are appealing thoughts for me.  It's always difficult to be faced with death.  Take care.

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  41. Wow. That's a tough one!!  Kinda like Euthanasia is.  The way I look at it is that it should be an individual choice.  Surgery at an advanced age is a very different kettle of fish to operations when you're younger. A much, much greater risk of dying.  But, just as I couldn't take away someone's choice to die, I couldn't take away someone's decision to try their hardest to live, no matter what their age. 

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  42. Thank you for such an honest comment, Martine.

    It's a tough situation to be in. I would have said the exact same thing (if I'd been old enough) when my grandmother passed away. I would have ranted and raved that they had to do anything and everything to keep her with us. Now, I can see how much she and the family suffered. I see it all happening again now and I feel so powerless. Maybe that's what it all boils down to? I'm a control freak and am most definitely not in control of this.

    Thanks again,

    Glowless

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