Death and dying (by K2)

[Deleted]

Inspired by Kimby, I think this could be a good place to discuss the subject -- how each of us sees it, how we have dealt with it, what we plan to do to make sure it doesn't happen to us...

I will start by throwing a big cow pie onto the floor. When somebody mentions the death of somebody they knew, if it is not a member of their immediate family or a close friend, I am incapable of automatically saying "how sad!" which is what appears to be the standard protocol. Many deaths are foolish, others are the result of a long agony, lots are unfair and others are overdue. Not all of them are sad. When my mother died two months ago, her life had stopped having any meaning at least six months earlier, and it was a burden on me and a burden on all of the nursing home staff. While I accepted condolences as graciously as I am able (not very), other appropriate comments would have been "that must be a relief" "what are you doing with her?" or "at last you're going to be able to travel" among many other possible statements. Close friends were able to say such things to me, but all of the people whom I know only casually were stuck with the inevitable "how sad."

Our culture seems to have determined that death is always a tragedy while other cultures are able to celebrate "the great wheel of life" and other such things. In any case, not many people seem to buy the religious promises about death, because even though just about nobody would have been ignorant enough to say such a thing to me, I only hear things like "now she's in heaven" or "Jesus has taken her into his arms" and stuff like that in very distant circles. I think for a lot of people their moment of grief is their moment of glory -- suddenly it's all about them with everybody saying "let me know if there's anything I can do for you."

I'm glad that my mother finally escaped.

[mossie]

You are so right Kerouac, as I sat and watched my wife die, I felt a great weight lifted from me. Still feel guilty for admitting that.

[onlyMark]

My mother was always ill for some reason or other from when I was in my teens but lasted until I was in my fifties. She wasn't ever afraid of dying, just didn't want my father to die before her. You could say she got her dying wish as he lasted for another few years. Mentally she was fine until the end. He though lost his marbles for the last couple of years and became a danger to himself. I was always expecting a midnight phone call to say he'd set fire to the house or something.
Mentally is was quite liberating when they both shuffled their mortal coil.

And that is another thing. I deliberately used a euphemism above, but I am averse to doing so. People die and are dead. Many times, too many times, I had to deliver bad news to a partner/husband/wife/parent about the death of their 'loved one'. Sometimes they weren't loved at all and they were happy about it. Mostly I avoided saying anything other than "Mr Smith died last night. If there is anything I know that you want me to tell you, I will. But it is up to you." I'd also have to ask them a load of questions to be put through to the Coroner. Not often the easiest thing to do at that moment.

I did find that the reaction of people to that piece of news varied considerably. From the collapse requiring an ambulance, through the reaction of, "He can't be. I've got his dinner in the oven" and "What shall I do with his bike?" and all the way to, "Thank f...k for that. It's about time the nasty old bugger died".

[bjd]

I fortunately have not had much experience with death or dying, but the use of euphemisms is indeed something I find ridiculous and annoying. I remember a friend calling me one morning and saying, "My husband is gone." My answer was, "Gone where?" and then she explained that he had died.

[Deleted]

I will admit that a few days after my mother died, I went to see her hairdresser and just said "You have lost a customer." But I had been taking my mother there for 11 years and the hairdresser knew what shape she was in, so she understood instantly.

[lugg]

I think for me reaction to death is intensely personal and ( I think ) connected to so many other things eg to the age of the person, religious beliefs, previous experiences so much so that I find it difficult to comment coherently. I have experienced death in so many ways, both personally and in my working life.

Personally - My parents deaths affected me most - for me, they were both just too young to die and I miss them both even now years later. I am sad that my sister's youngest child barely remembers them; she lost out on having that special grandparent relationship that my children and her older sister just about remember. But equally I can understand where it can be such a relief and indeed my Mum was ready to die and embraced it with the support of wonderful hospice care, gradually exiting life generally peacefully. Exactly opposite was my Dad who was not ready to die - he pressure washed the patio and dug the garden just a few hours before his death ( knowing he was terminally ill) and went out fighting- much more traumatic for those who loved him ,to be part of but essentially the essence of what he was.

Working - I have seen many people die from the elderly to children . When I was a paediatric nurse I found it was difficult to find any positives but I was constantly amazed/ in awe at how some families did mange that. Sometimes that was that indeed there was a relief that their child/ sibling etc was no longer in pain. Now my work still includes death of a child - sometimes trying to understand how accidents/ abuse have happened and learning the lessons to try to prevent it happening again. Then corporate responsibility versus individual responsibility comes into play- again often painful.

So essentially for me the various ways of coping are only a way of articulating or responding to death , sometimes they may appear ill advised or even annoying , but they are never wrong because death is personal.

Having said all that I don't understand mass grief of people we have personally never known.

[questa]

Oh Boy...is this thread timely! Thank you Kerouac for starting it.
My elder son is a extremely fit person, as a fire fighter he has frequent fitness checks and works out at their gym every day. He eats only healthy stuff, doesn't smoke and drinks alcohol only on special occasions. Last Sunday he had a heart attack. He is 45.
After a bit of chest pain on Friday and Saturday, on Sunday morning it hit full blast. Ambulance to Hospital and after tests had a stent inserted. He is OK now and the doctors say there has been no damage done.

My father died from a coronary when he was 53 and I was 12. My mother died six weeks later from medical mismanagement of gastric/duodenal ulcers. She was 42 They told me Dad had "Gone to sleep forever" and for a few minutes I thought he was just unconscious before picking up on the atmosphere, I asked "Is he dead?" No-one said yes, they all babbled about how I was going to be all right and not to worry.
With Mum only one aunt was there and she said that Mum had "gone to join Dad". At least I got the message and a big hug. In neither case could I cry...I just went numb, and a little of that numbness remains.
And now I have Parkinson's which is horrible in its final stages. Do I take (illegal) steps to cause my own death at a time that I find it all too much?

[mossie]

So sorry to read that Questa.

Not much I can say, cannot advise you on the end, but you have to be very brave and sure of yourself, to follow through on your thoughts. I hope you have family or good friends to support you in your hour of need.

[bjd]

Questa, from what we see of your personality that shows through on this forum, I imagine that you are one of the "fighting" kind. I am sure you will know what kind of decisions to take when you feel the time has come.

[questa]

Very perceptive of you, BJD. I don't usually run from a tough situation but I also don't like not being in control of myself. What we have learned of how Kerouac2's mother was is just the beginning. Add in being fed via stomach tube and years (maybe) of pain gives some more of the scene. My sons will probably not be able to care for me like K2 did with his mother.

Anyway, good people, relax. I still have lotsa time and am still independent. Bridges will be crossed when I come to them. Possibly the shock of my son's incident this week has made me morbid, for which I apologise to you all. Anyway...I can't die yet, I have a drawer of film photos I want to scan and catalogue!

[lagatta]

Questa, I don't think that is morbid in the slightest. Are there no moves to making assisted suicide legal in Australia?

I'm glad your son is doing better. That must have been quite a shock.

[questa]

Lagatta,
There is a groundswell of opinion, mainly from the 60+ age group to legislate in favour of "doctor assisted suicide" as they are calling it. Polls show over 50% are in favour but neither political party will touch it. One high profile doctor Philip Nitschke published "how to do it" material and developed a machine which assisted the patient without involving anyone else. Northern Territory legalised it and people came from all over to have euthanasia. Doctors in the AMA had him deregistered (Has anyone seen the movie "Last cab to Darwin") The federal Govt, over-ruled the NT laws and now there is nothing available.

[Deleted]

The French are just as skittish about this, but at least I know that Switzerland has a well established system for dealing with assisted departures, even if the legality is a bit questionable. There is a very careful protocol about the wisdom of the decision, and the "candidate" has to consume the products personally rather than have them administered by another person. There is clearly great interest in the Swiss system because I have already seen two plays and three movies about it.

Parkinson's is at least a disease regarding which considerable progress has been made over the years. The diagnosis must be a horrible shock but once it has been digested, I am pretty sure that most people can face quite a few years with minimal discomfort before other solutions need to be considered.

[chexbres]

It seems I've spent my life around people who were slowly dying due to one thing or another - whether caused by bad habits, heredity, just plain bad luck. A few suicides, when things became too much to bear.

I could never stand the martyrs, who made everyone suffer during the spectacle they put on. That sounds cruel, but there are people who suffer quietly, and others who need full-on drama and an audience. I have a sister like this, and a whole host of Sicilian-American ex-in-laws who would put Fellini to shame. I cannot stand to be around them.

My closest neighbor in New Orleans developed AIDS then Parkinson's in his mid-50's. He managed pretty well for a long time, but began a sharp decline when he reached 70. He truly believed in miracles, and that a cure was just around the corner. Though he was entitled to a day nurse and hospital bed, he thought that was undignified, so manipulated the last two people who would still put up with him into taking care of him. But since he never gave us a key to his house, he was found two days after he had died. He was a martyr par excellence, and though he was my friend, I hated him for putting me through his last two years on earth. He didn't have to suffer as much as he did, and I cannot understand why he insisted on doing so.

There are ways to end your life with dignity. You have to plan ahead, but it can be done.

[questa]

Dorothy Parker put it so eloquently...

Razors pain you;
Rivers are damp;
Acids stain you;
And drugs cause cramp.
Guns aren't lawful;
Nooses give;
Gas smells awful;
You might as well live.

[bjd]

There are certainly ways to end your life with dignity and I'm sure everyone thinks about it at some point in their life. However, no matter what kind of health condition we are in, I am convinced that most of us want to live and, even at the end, are hoping for some kind of miracle that will keep us alive.

[questa]

From nursing experience I would say that the desire to live applies mainly to younger people. It is more common meet aged patients who genuinely want to "Go Home" or "Go to God". The women especially have worked, raised families, cared for grandkids, been on committees, looked after sick husbands and now have a terminal illness. They say they just want to rest, stop the drips and injections, just have something for the pain etc. However I have seen several instances that a person extremely close to death will delay dying until a special person has visited to say goodbye.

[bjd]

During the last few years of her life, my grandmother was taken to the hospital several times. Each time she would say, "I wish it would end." But when she was taken in for what was in fact the last time, she was fighting to live. She was 79.

[mich64]

Questa your attitude towards your illness is inspiring and you attitude will give you years of independence. We recently began assisting my sister who also has been diagnosed with Corticobasal Parkinson's.

[htmb]

Mich, is this the sister you've traveled with?

A couple of days ago a close friend died fairly suddenly. Her family was with her, so they must have had some notice, but her health apparently deteriorated rapidly due to pneumonia and subsequent heart failure. I know she wasn't ready to die, and had always been very active. While I'm glad she didn't have to endure a lengthy illness, I'm sorry we hadn't spent time together in recent months. It's a bit of a shock, and I know I will miss her very much.

[lagatta]

Most people with a terminal or extremely excruciating illness who support "death with dignity" or "assisted suicide" or whatever you want to call it do die of natural causes. I knew the MP here who fought for this at the Canadian Parliament, as we had worked together. Francine Lalonde had bone cancer, and fought tirelessly for people who were seriously ill to have a say in how their lives would end. She died, and I don't really know or want to know whether she had a bit of kindness guiding her towards a gentle end.

[questa]

In a hospital/ hospice setting it is up to the treating doctor to administer drugs to relieve the patient's pain. If the patient needs a larger than usual dose of morphine for analgesic purposes, so be it. There is an "end of life plan" document created with patient, doctor and nurse in which the patient decides what level of care they want...do not resuscitate, no drips, no feeding, analgesic drugs only etc.
My dear old Balinese grandmother was 106 or thereabouts, able to get around the compound, feed and bath/dress herself and help with simple family tasks. One day she tidied her room, washed and put on ceremonial clothes, declined food but took to her bed with a supply of water. The family said goodbyes then she literally turned to face the wall and fell asleep. Someone sat with her until she died in the second night. They told me that many of the "old days" people still have the power to choose when to die.

From Baliwaves June 2009

I Gusti Nyoman Lempad was a Balinese artist who lived to approximately 116 years. It’s not know exactly when he was born, but it was around 1862 and he died in 1978.

The way he died is quite remarkable, it is well documented that he chose the day on which he was going to die months in advance and on that day he called his descendants together, asked them to bath and dress him, told them their inheritance, bade them farewell and then died. The day he chose was a holy day.

[mich64]

No htmb, not that sister. I have 3 sisters and this sister is the second oldest. The sister I traveled with is the youngest. My sister with Parkinson's is the sister we visit in Ottawa, her husband is stationed there, he is in the Canadian Armed Forces. They were transferred there two years ago and actually it was a fortunate posting as she has an excellent team of Specialists. But, we are now dealing with a complicated system in getting her home care needs met.

Questa, being that your son looked after himself so well will hopefully aid in his recovery and now that he has the stent and has had scans/MRI's of his heart, he will be monitored and cared for.

[questa]

Oh, he's fine, mich. Attended a rock concert Thursday and in 2 weeks will be driving 680km to Hay in NSW ( seven and a half hours)to compete in a national motor sport event.

Anyway, enuf of me. I seem to have hogged the thread.

What are your thoughts on how death is handled in the Western culture? Euthanasia (generally)?
Heroic efforts to save prem babies knowing they will need special care all their lives?
Transplanting kidneys etc. to patients over 65 or 70? or to people who do not continue with their medications and are back for another organ in a year or so?
Should dying patients be sent home to die or remain in hospital?
Should medical staff even tell the person they are dying? And tell them how long they probably have?

Plenty there for an interesting discussion.

[chexbres]

questa - the discussion points you've presented will surely lead us down to the Ninth Circle of Hell...or beyond.

I'll just comment on one of them - I don't think that people in poor health and past a certain age (whatever that might be) where the likelihood of their getting better isn't realistic, should undergo operations which include general anesthetic and/or a long rehabilitation period. Perhaps in the US this is done for insurance purposes, perhaps it's to train doctors and nurses - but I think it can give false hope to both patient and family, while just prolonging the inevitable. I think it's cruel and unusual punishment for all concerned.

My 82 year-old father, who had been in failing health since he was 50 (!), had another stroke and we took him to the ER. They discovered that his heart was not beating as it should, so installed a pacemaker. Two days later, he was complaining of pain, and they discovered that he had broken his hip when he fell during the stroke. So they planned to do a complete hip replacement in a few days. But his heart wouldn't co-operate with the pacemaker, which kept shorting out each day, meaning he had to be resuscitated. This kept up for 10 days, but by the mid-point, there was no measurable brain activity. The pacemaker would set off the alarm, everyone came running - to save a brain-dead patient. I asked a nurse how long this could continue, and she said it would go on until the battery in the pacemaker burned out, which it finally did. My father had all the "end of life" papers drawn up years before he died, but never got around to signing them.

[mossie]

A very depressing tale chexbres, this type of action is simply prolonging the suffering for everyone involved. I have had "do not resuscitate" included in the powers of attorney which my sons hold, I have lived long enough. I want to enjoy what time is left to me while I am in reasonable health, once I am too decrepit to climb onto that Paris bound Eurostar I will loose the will to live.

[chexbres]

mossie - something tells me you have a lot more Eurostar tickets in your future!

[Deleted]

At my mother's nursing home, I was able to observe all sorts of remarkable recoveries over the years -- people hauled off to hospital whom I was certain that I would never see again. Then two or three weeks later they would be back and clearly happy to have a few more scraps of life left. And then there were so many other residents who seemed to be in relatively good health who would suddenly die one day without warning. "He had his afternoon snack and took a nap in his chair. But he never woke up." I was hoping for something like that with my mother, but I wasn't quite that lucky.

All of my observation for ten years made it impossible for me to determine when people had lived long enough, and that is certainly the dilemma in all geriatric care. I read somewhere that something like 90% of most peoples' medical expenses are incurred in the last year of life and that certainly gives food for thought, but it is not a reason to play god. All I could do was say to my mother "if you're ready to go, that's perfectly all right."

[questa]

I have heard there are people who have had 'DNR' or 'Do not resuscitate' tattooed on their chests to stop paramedics grabbing a defibrillator in an emergency. They include a chap with bad emphysema and one with prostate cancer who is on borrowed time.

Early 60s when ventilator machines and ICU wards were just coming into being, an elderly woman came to see her grandson who was in ICU after a motorbike accident. She collapsed to the floor with a massive stroke and a young doctor, keen as mustard, connected her up to a ventilator. She was moved to a single room and I was to 'special' her ( 1-to-1 nursing, not leave her.) I found it interesting to see as senior staff doing rounds would look at her dead face then their eyes would follow along the power cable to the switch. On the 4th day the deputy Matron was talking with me about the new ventilator machine when she asked, "Do you know how to operate it manually in case there is a power outage?" "No, Matron," I said. "hmmm" she replied, "Remind me one day in the future to show you."
(Next day was my day off and when I went back on duty found the hospital's chiefs had turned off the switch on the 5th day.)

[Kimby]

Thank you K2 for creating this thread. I wanted to, but am still too raw from losing my mom before Christmas to be up to the task.

Still not up to a meaningful post here, but enjoying eavesdropping on the discussion. Carry on. ;-)