The Right to Say Goodbye.

A long while ago I casually commented (in my LED, in fact) that I was in favour of voluntary, self-chosen euthanasia. Sylvain left a comment that disagreed and, shortly, he agreed to blog about his thoughts/feelings on the subject – and he did. I told him that I would do the same as soon as I had a chance.

We agree in some areas. We disagree in others. I like to tease Sylvain that we’re at war on this – we aren’t.

The problem I had with writing the post is that there are SO many sides to my feelings that it’s nearly impossible to crank out anything reasonable on the subject in anything less than a zillion words. And I didn’t want to flippantly assert, “Yo, we can all die when we want, maaaaan!” when I really do have a lot of thoughts on the subject. So I’ve been working on this bit-by-bit and trying to make it coherent. (Ha!)

The bill was defeated; I have written, edited, re-written, re-edited this post more times than I can count. Sylvain has both mocked me and prodded at me to get me to finish writing it. So I have.

When I was somewhere in the range of 20 years old, living in Toronto and visiting my father on weekends, we discovered that my paternal grandparents were both unwell, in different ways, and had been for quite some time. They were both in their 70s and lived in the small, two-story home in which my father been raised. They had spent their lives there, never traveling far and never spending much time or money on updating things for fashion nor convenience. On many occasions my parents would offer an upgrade as a gift – like painting the walls, for example – and my grandparents would wave their hands and assert that no, no, they weren’t interested.

My grandmother had a stroke in her (I believe) early 60s, had recovered very well, and was fiercely independent and active. Part of her recovery had involved walking – up and down the block, initially, and then further as she grew stronger – and she had always insisted on running her own errands, buying her own groceries, and hopping in a cab to go anywhere she couldn’t walk. She had a slight limp and her arm would ache in humid weather, but she was almost always on the move.

My grandfather had various heart problems throughout his life and had issues with his circulation in his later years. As a child, I recalled him gardening and puttering around in his (machine) shop. He had quirky habits like tracking the winning lottery numbers, cultivating heirloom tomatoes from his own seed stash, and was an amazing cook. In his later years, perhaps the last ten or so, my memories of him involve his big brown chair – and him sitting in it, watching endless hours of television. My grandmother did everything for him; cooked, cleaned, bought his clothing. And he sat, smoking, saying little.

My Dad was visiting my grandparents each weekend, helping with various tasks like lawn-mowing, and had noted that they had both been exhibiting some ‘odd’ behaviours. On his arrival, my grandmother would ask him to go to the bank machine and withdraw very large sums of money from their account. She would then give him a grocery list and ask him to pick up some things – at first, just the “heavy” items like laundry soap, but soon that list expanded to include loaves of bread and blocks of butter.

He’d return from his grocery run and find the fridge still filled with the items he had purchased the previous weekend; sometimes the items would be unopened and sometimes they’d be half-eaten and moldy. He’d dutifully throw out the moldy bits and wedge the new items in as best her could. My grandmother refused to discuss it.

Same for the growing stack of detergent boxes in the basement. The pyramid of paper towels. The twelve bottles of bleach.

But what do you say, right? They’re adults and it’s their home and their money.

My father noticed that the house wasn’t as clean as it used to be; food would sometimes be on the floor and the dish towels were often smeared with dirt. My dad would clean up a bit and my grandmother would start to yell at him: don’t do that! I’ll get to it later! STOP IT! So he’d stop, look around, and wonder what to do.

It was around this time that, when I visited, my grandmother would answer my “How are you?” with the phrase, “Eh. I’m already dead and my body just doesn’t know enough to lay down.” I had no response other than a nervous giggle. I’d try to clean something up and she’d yell at me. I’d ask if she needed help and she’d glare at me with laser eyes.

We broached the subject of moving a few times. We suggested a retirement home, we suggested a small apartment, we suggested.. and my grandparents would look at us as if we had lost our minds. They were FINE.

And so.

One day, my grandfather called my Dad and said that he thought my grandmother was dying – but that she wouldn’t admit to it. He asked my Dad to call “someone” to help. My dad got in his car, drove to their home, and found my grandmother in bed, weak, surrounded by bloody sheets.

He called an ambulance and she gathered enough strength to scream and tell them to get out. To let her die, please, in her own bed on her own time. The paramedics, of course, couldn’t do that. They wrapped her in her sheets, carried her down the narrow staircase, and put her in the ambulance. She was shortly diagnosed with cancer of the everything – colon, stomach, liver, and everything in between – and, in three days, she had died. In a hospital bed, alone, but hooked up to a significant quantity of painkillers. The doctors said she would have been in intense pain for a long time, given the extent of her sickness, and marveled that she hadn’t sought medical attention.

As if the shock of her death wasn’t enough, my dad and I discovered that she had been caring for every single one of my grandfather’s needs for a very long time. He hadn’t been able to go up the stairs to the bathroom or the bedroom – he had been sleeping in his chair, relieving himself in a plastic ice cream tub, and my grandmother had been climbing the stairs to empty it and clean it. She had been bathing him with a sponge. He could only stand for a minute, or two, at most. He refused our help altogether.

He asked, in fact, that we please leave him alone to die. In his chair. In his home.

Instead, and I’m making this story much shorter than I should, he was moved into a nursing home. He spent nearly eleven months starving himself to death and begging us – me, my dad, the nurses, anyone and everyone – to please kill him. To please make the suffering stop. To please let him be with his wife. To please, if we wouldn’t do that, please return him to his home to die in peace.

We didn’t, of course.

He could not smoke, eat the foods he liked, leave his room without someone pushing his wheelchair (because he had no upper-body strength), shower or use the toilet on his own. He missed his wife, the woman with whom he had spent every day for decades, and who left him without saying goodbye. He could not watch television. His friends were all dead. He lay in bed and stared at the wall and begged us to let him die.

The nurses suggested that he was in shock and grief. Well, duh. They suggested we encourage him to play BINGO with the other seniors. To take some antidepressants and talk about his loss in a group for widows and widowers. To help him see the beauty and magic of life.

I will tell you now – and I have admitted to this in the past – that if I had the ability to end my grandfather’s life on his request I would have done so. I admit it to anyone who asks. Fuck BINGO. Fuck talking about his loss. I didn’t kill him because I was 20-ish years old and I had no idea how to end someone’s life painlessly and without spending the rest of my life in jail. But if I could have, I would have done it because he asked me.

Was my grandfather of sane mind? Did he have the capacity to make that decision? Would a medical professional have been able to somehow assess that?

Did he not deserve the dignity to leave this world on his own terms? Painlessly, quickly, effectively? Or was it better for him to spend a year pleading to die, begging to die, and suffering physically and emotionally from the loss of everything that gave his life meaning?

He lay in a nursing home, alone in a bed, starving himself to death. A painful, lonely death – that’s what he got.

Sylvain talks about dignity and about quality of life in his blog post because those are the terms used in the bill. I believe dignity is a personal concept – there is no universal definition. For my grandfather, a man who relied on no one, save for his wife, dignity was gone the moment she died.

There are homeless people sleeping in parks, peeing on the sidewalk, eating food from dumpsters – who will tell you that they’re (reasonably) okay with their quality of life. They have dignity.

There are people living ridiculously extravagant lives, from all appearances, who are desperately lost and who feel they have no quality of life despite all indications to the contrary.

I believe we determine the meaning of our own life and the value of our life is attached to that meaning. I believe we can change those values, too, and that they are not set in stone. Humans are really resilient. We have an innate drive toward life itself – there is ample evidence.

There are people who dedicate their lives to a single pursuit, have an accident that obliterates their ability to pursue that goal, and then shift their focus to another meaning. I’m simplifying, of course, but that’s the gist.

There are people who require only a stack of library books and some good conversation to consider their life well-spent.

There are people who dedicate themselves to all manner of pursuits and goals and causes and, were those to be removed, life would change dramatically.

The thing is, we cannot force meaning onto anyone. In the face of losing everything, I cannot ask you for direction or guidance or meaning and I can only hope to see a glimmer of something in the distance to keep me moving forward. If I fail to find that glimmer, your hopes and dreams and meaning can’t keep me here.

The only thing in this world that I truly own is my body. My life.

It is mine to do with as I please.

And that includes ending my life.

It would not have been easy to let my grandfather go. But, then, it wouldn’t have been easy to let him go at any point. There is much to be said about the grief of any unexpected loss; were my grandfather to die in a car accident, would I mourn him any differently than if he died by his own hand?

We can’t pretend to know the pain that another person carries inside them, even when we listen to them tell us as best they can. Everything we see, hear and know is tainted with our own perceptions and experiences. When someone says they’d rather die than have someone else wipe their butt, it is possible to think, “That’s ridiculous. You’d give up all the wonderful things in life simply because of THAT?” – because our priorities and our spark-of-life isn’t the same as theirs.

And we use that term a lot, “I’d rather die than…” Most of the time we wouldn’t rather die, of course, but we recognize that we’d need to adjust and shift our thinking.

But there are many things I’d rather die than experience. I suspect there are many things you’d find on that list for yourself, too, if you let your mind wander enough. For some it’d take a lot and for some it’d take a little – but we all have lines in the sand.

We seem to think that we should be able to medicate the shit out of people. All problems should have a pharmacological cure. No one should ever feel less than perfect – happy, content, motivated, hopeful – and if they do slip below those feelings, we need to get them better drugs. More drugs. Different drugs.

Sometimes things are sad, miserable, unhappy. And sometimes those things won’t, cannot, do not get better.

If we’re determined that people should be medicated until they’re happy, because happiness is so important to our society, why can’t we accept that people who can’t reach that level might want to end their own suffering?

Many of us are killing ourselves slowly. We smoke, chain-smoke even, despite knowing that it will kill us. We eat unhealthy foods. We neglect to exercise after our 12 hour work days full of stress. We use drugs and alcohol that hurt our bodies. We indulge in relationships that hurt our minds and souls. We cling to unhealthy situations.

Are we all suicidal?

Why hasn’t the government outlawed all of those activities? Is it because they take longer, generally, to kill us? Because the long, slow suffering of life is better than the fast and painless ending?

Humans have a huge capacity for self-preservation. We want to live. And it is because of this strong will to live that I believe that when that urge to live dissipates, we should be allowed to leave this world on our own terms. What’s so noble about fighting a battle you have no interest in fighting?

I have mixed feelings about the Latimer case.

Again, I believe that it’s impossible to understand someone fully – because no matter what words they choose, they’ll never convey the entire picture. The media covered every angle and every possible slant to that story, I think, and it’s all muddied up in a lot of ways.

I don’t know if it was right, or wrong, for Robert Latimer to kill his daughter. I don’t know him, or her, or them. I have not walked a single step in their shoes, nor endured what they went through, nor observed their relationship. I don’t know. I can’t say.

I believe that our health care system and our social services systems are, in many ways, fucked up. We keep people alive on life support long past the point of logic. We deny chronic pain sufferers appropriate relief because we don’t want to encourage ‘drug addiction’. We refuse to support families who choose to keep their children (or spouses, or..) at home and insist that if they really wanted their loved one to be happy/safe/comfortable, they’d shove them into an institution. And, of course, we close down institutions, too.

We deny how difficult it can be to care for a loved one – day in and day out – who is suffering. It is done with love, of course, but it is soul-wrenching. The levels of depression in caregivers is extremely high. We pretend that caregivers can be sustained by love and never need relief or respite or a few hours away from home to breathe deeply. We step back, make empty promises of help, and allow the caregivers to shoulder the pain.

For about a month, my grandfather lived with my Dad while we tried to find a nursing home. The waiting lists were long and the nursing homes averaged about $3,000 per month in cost. We applied for public nursing home access – but were told we’d need to sell all of my grandfather’s possessions and liquidate any funds in order for him to qualify.

During that month, in a small apartment, my Dad tried to work full time and care for my grandfather. I tried to help on weekends.

At night, in his sleep, my grandfather would scream and cry for his wife. During the day, he refused to eat. He cried. He peed on the floor because he couldn’t make it to the washroom let alone use the toilet. He was angry. He was in pain.

My father loved his father, of course. It was excruciating to watch, to try to help, to realize there was no cure for this suffering.

In under a month, I watched my own father burn out. His emotional stocks were depleted – his mother had died, his father was a wreck, he was an only child who bore the full brunt of the responsibilities. He was physically tired. He was financially bleeding. He was left to navigate an entirely new world on his own – a world full of rejections, confusing documentation, contradictory statements from government agencies, and not a single offer of help from anyone outside of our family.

That was one month.

Would it have grown easier? Possibly. Supports might have been found and waiting lists might have been conquered. Maybe.

So I don’t have an opinion on the Latimer case. I don’t know what I’d have done in that position – watching someone suffering and knowing there was no relief in sight. I have no idea what was done, what was tried, who help and who didn’t. I know only what the media has said and, well, yeah. The media.

If my husband wanted to die, I would argue with him.

I would beg and I would plead and I would throw myself to the ground and cling to him.

I would do everything I could do to make him change his mind – to help him find that spark or that joy or that light. I would try to get as much help as I possibly could, whether professional or otherwise, and I would do anything and everything I could to alleviate his suffering.

And when we had tried everything else, I would help him die. I would do it because I love him and because anything else would be selfish. You know how much I love him and his presence; I do not want him to be in pain. I know, too, that he wouldn’t want to leave me unless that pain was enormous. He loves me, too, and he knows what his departure would do to me.

What else could I do?

Here is what I think.

There may come a time in my life when I am done. Finished. When I have lost my hope or my spark or my.. whatever gives me meaning.

I have already drawn a few lines in the sand – hypothetical as they may be, I’m still not going to share. But I have a few lines in my head that tell me, “when I reach X, I am done.” Those lines may very well shift. Life changes and those lines may move a few feet over from where they currently rest. I don’t know.

I believe that my own self-preservation skills will require me to attempt change; I will seek a new spark or a new joy or a new meaning. I have done it before.

And when I have done my best to stay alive, I would like to die with dignity. In a manner of my choosing at the time of my choosing. I believe it’s my right, whether my government chooses to agree or not.

18 comments

  1. Blog Fodder says:

    I have a file called Wisdom and Beauty. I just saved your blog in it for future reference. How powerfully you write when you get at it. You have my full agreement and total admiration. People need to be able to call their own shots.

  2. Anne says:

    Blog Fodder is right, you write so powerfully and articulately. I agree with you also, especially

    We can’t pretend to know the pain that another person carries inside them, even when we listen to them tell us as best they can. Everything we see, hear and know is tainted with our own perceptions and experiences. When someone says they’d rather die than have someone else wipe their butt, it is possible to think, “That’s ridiculous. You’d give up all the wonderful things in life simply because of THAT?” – because our priorities and our spark-of-life isn’t the same as theirs.

    I think this is true in many aspects of life – we haven’t walked in anyone else’s shoes, so we can’t really understand where they’re coming from. And I think that this is what most people often don’t even try to understand, especially in end of life situations.

    Thank you for this post.

  3. Katherine says:

    This is a brave post to write. I can only speak to my own experience, but I know that when the people I love have been ready to go, they knew for sure, and no one in my family denied them.

    In the case of parents or other family members choosing for those that cannot choose or care for themselves… I believe that if you love someone, you must do all you can to ease their suffering. It must be something considered in each situation specifically – so, I don’t think it’s something that is easily legislated.

    In Washington state, where I’m from, they passed a “Death with Dignity” law that passed via public initiative. It’s specifically for adults who have been diagnosed with a terminal illness with an expected survival of 6 months or less. Many hoops to jump through, but it’s there, mostly to protect families.

    These are also why I am such a proponent of hospice care. If, as you describe it, a person has the spark – hospice will help that person keep the spark going and providing the palliative care necessary to make living less painful. It is my opinion that the system is broken in that hospice is almost always reserved for only the terminally ill – in these cases, hospice is meant to alleviate any suffering in the process of dying.

    I think everyone deserves that kind of care during illness, is my point, I guess. Even if it means helping someone to die.

  4. Sylvain says:

    Your grandfather’s story is heart-wrenching. Sadly, it’s probably a common scenario. There is nothing here for me to disagree with.
    But in something you said, you demonstrated the reality that is at the root of my fear.
    In those dark months where everything changed and your father was trying to do it all, there was no assistance available. What if there had been a massive support system readily available? Easy to access in-home care, respite for your father, everything, available quickly and government funded. (Sorry American’s that might be beyond comprehension for some of you)
    I am not suggesting it would have made your grandfather want to live, just that his last days would have been improved, and the whole end of life experience would have been so much less traumatic for everyone involved.
    But all of that, if it was ever to exist, would cost bags and bags of money. Frighteningly, I don’t believe the will is there to fund anything of the sort..
    But a large group of healthy people, most whom are of the “I’d rather die than…” crowd, are quick to get behind the pro-euthanasia movement.
    And as I said in my post, I fear the societal shift in attitude. The slow and gradual shift over decades. A shift that even further erodes the public’s will to fund solutions for those in need, because, c’mon, really, what’s that life worth anyway?
    In reality, it doesn’t just come down to “I’d rather die than have someone wipe my ass for me”
    The scenario is more like, “I can’t afford to have someone wipe my ass for me, I have to sit in my own shit and piss until 3pm when I get my weekly shower by an angry and underpaid government funded PSW.” That’s a life without dignity. And without hope.

    If there is no funding for the alternative, do you really have a choice?

  5. Blog Fodder says:

    In those dark months where everything changed and your father was trying to do it all, there was no assistance available. What if there had been a massive support system readily available? Easy to access in-home care, respite for your father, everything, available quickly and government funded.

    We had that in Regina. Ella and her boss made it happen in a health care system deemed “less than perfect and too expensive, by the rich and healthy”.

  6. bad mummy says:

    I have to agree with Sylvain. The system is flawed. All the systems are flawed. We don’t enable people to LIVE with dignity, never mind support end of life dignity.

    Grrrr

  7. Kikipotamus says:

    I also have mixed feelings about the Latimer case and agree with you that we cannot judge what that man did because we cannot live years in his shoes or in his daughter’s shoes. We weren’t there. We don’t know.

    I can tell you that things are changing. The hospice movement is growing, doctors are becoming more educated. One doctor we heard speak during our training admitted that 20 years ago, they would sometimes deny terminal patients morphine because of the fallacy of the risk of addiction. Nowadays they know better. The morphine is given and there is no limit to how much can be given. They are getting much, much better and understanding pain and being able to help people manage it.

    I wish you could see all the types of help that are now available–free of charge–to anyone with a life-threatening illness, regardless of the person’s financial situation. Rich and poor qualify; nobody has to sell his estate first. They don’t have to be referred by a physician. People can self refer.

    The supports include everything from respite visits to social work to energy work to support groups to pain clinics to rides to and from medical appointments. Hospice can help you whether you wish to die at home or at the village. The physicians make house calls. Drugs can be kept on site in the home for administering by family or nurse. If someone chooses to stop eating and drinking, nobody hooks them up to tubes. If they choose no assistance breathing, their wishes are respected.

    I’m very sorry for what your grandparents went through. I hope we are evolving as a society so that very soon nobody will have to endure that.

  8. Jo says:

    I too have very strong feelings on the subject. And my answers lie in simply looking to nature.

    Humans are the ONLY animal on earth that do this… prolong life despite ALL indications pointing to death. Mother cats eat their young if they are not thriving. Old or disabled animals go off to die in peace in the wilderness, and no one fetches them, straps them to a bed and catheterizes them to stop them from doing so. Death is the final stage of life, and there is NOTHING wrong with dying. The efforts humans go to to prevent it boggles my mind.

    I agree totally with Dana on the multiple definitions of “dignity” and I would say it’s much more dignified to die a natural death than to die because someone pulled the plug on a body that would have died of natural causes decades before.

    Great essay.

    • Sylvain says:

      Jo, I have to admit that your comment offends me. I am disabled, and I have a machine that helps me breathe at night. Without it I would have died a decade ago. Without many of the devices and adaptations that make my life possible, I would not survive.
      Yet I’ll be damned if I am going to drag myself off into the woods to die just because that’s what an animal would do.
      Comparing humans to animals is also a tactic that homophobes use to somehow point out that homosexually is not natural. I find that one just as offensive.
      In high school I had pneumonia and doctors were sure I wasn’t going to make it. I was put on a ventilator for six weeks. I recovered. That was over 25 years ago. Or I guess they could have dragged me into the woods back then?
      If you really believe that death is a normal stage of life, then it would follow that it is meant to be lived and experienced, as horrible as that may be. Not meant to be hastened out of convenience. But we are not animals, we have compassion. We do our best to give everyone the longest and most dignified and comfortable life possible. In the end, if we can hasten death and make the pain end, then are inclined to want that as well. And so this discussion…

      • Jo says:

        Interesting… see, I would use the “comparing animals to humans” argument to argue why homosexuality IS natural… homosexuality occurs in nature.

        I am a pantheist who believes that nature is god. It is what is ‘right’ in my belief system. Funny, because I’m in IT by day, and technology is in many ways my life, yet at the end of the day, I believe what is natural or, what occurs in nature is what is right. I have always believed I’m just an animal like every other animal on this planet and I do not make distinctions between human animals and non-human animals. So when a mother starves then eats the runt in her litter… yeah, I used to be disturbed by that concept but I’m not anymore. It’s just the way things are in nature.

        I can see how you would think my ‘survival of the fittest’ attitudes are cruel, however, that is what I think occurs in nature, and I don’t question why nature does what nature does. I just accept it. I think humans have prolonged suffering in too many cases using unnatural means.

        It’s too bad my views offended you. I read your entry, and although I didn’t agree with your point of view, your opinion doesn’t offend me.

        • Sylvain says:

          Well that’s simple, I didn’t suggest you should be dead. Except for that, nothing you said bothers me all, in fact for the most part I agree with you.

  9. Scoot says:

    This one showed up in the Milwaukee paper today:
    http://www.jsonline.com/news/milwaukee/99074314.html

    The events (and this article on it) touched off a very spirited debate on some of the local radio stations today. As you can imagine, it became a bit heated.

  10. Neil says:

    My wife and I are dealing with this issue today for my FIL and I just by chance… came across this post, which touched on many of the same issues.

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