[O]ne of my clearest childhood memories is of my father washing his face. He did so in a most particular way, with a vigor and thoroughness that made me feel somehow cleaner for simply having watched him. In the mornings, while he got ready for the workday, I’d sit on the toilet seat brushing my teeth as he went through the various stages of his ablutions. This was in the early nineteen-seventies, when we lived in a low-end red brick rental complex near the Sound in New Rochelle. Our second-floor apartment was a small two-bedroom with a living-dining area and a worn galley kitchen. It had one cramped bathroom, its dulled chrome fixtures speckled with rust and the tiles coming loose in spots, but even my mother wasn’t fretting too much. We were just a couple of years landed in the country, and this was as suitable a place as any. My kid sister and I loved the playground and grassy field that the apartment overlooked—you could check who was out there and sprint down in a breath—and my mother appreciated the southeast-facing windows, as drafty as they were, for the brightness they let in. My father was settling into his first doctoring position, as a staff psychiatrist at the Bronx V.A. hospital, and although extra money was scarce, our family was moving up in the world.
My father would turn on the taps until the water ran warm and then liberally splash himself as he bent over the basin, sprays of water dotting me. Like seemingly all Korean men back then, he wore a ribbed tank top beneath his dress shirts, and the shoulder straps would get a little damp as he wet his face and ears and neck. He built up a load of soapy lather and got to work, roughly polishing the sides of his nose and his cheeks in a circular motion and radiating outward to his ears, using his index fingers and thumbs to scrape the nooks and whorls. Making a rake of his fingers, he scoured behind his ears, then shifted to the back of his neck, tilting his head slightly to each side to bare it for forceful soaping. Next, he rotated the bar of Ivory in his hands to replenish the lather, which he needed for cleaning the rest of his face—his eyelids and his temples and his angling, broad forehead, unwrinkled then, going foamy and white. Sometimes he liked to frighten me by turning quickly and opening his eyes wide and flaring his lips, this snowy beast, and then smile when I began to whimper, and although my heart detonated each time, I liked it, too, for the way it was him and not him and him again, in the span of a gasp.
He’d wash away the suds with great handfuls of water, dousing himself while briskly rubbing his skin once more, and you would wonder why he didn’t just take a shower instead. Maybe it was because he was a refugee during the war and grew up in the harsh times afterward, but bathing every day was a habit neither he nor my mother had yet developed. I can imagine them both waiting in line for their brief turn at a cold-water spigot, poised to clean themselves as swiftly and as fully as they could.
On the weekends, I often showered with my father, and he showed me how to rub tiny dark rolls of grime from my forearms and from the scallops of my heels, and then scrubbed my shampooed scalp so hard it would tingle long afterward. My favorite part was when he dried my hair, his method not to blot and rub, as you normally would, but to hold each end of the smallish towel and whip the middle back and forth against my head to flick away the dampness. No plush bath towels for us.
Forty-five years later, I would be washing him, Parkinson’s having rendered his body stiff and frail, his mind loitering elsewhere. With both hands he held the shower bar as I sponged his flanks and hosed him off with the sprayer. I washed his face, too, but with my hands, if more gently than he probably wanted. I tried not to get soap in his eyes. When he was dying, I was far away and couldn’t get to him in time. The hospital morgue staff let me see him. He lay on a gurney with a sheet drawn up to his chin. There was his mouth, in a slight pinch. His sunken cheeks. His forehead was cold wood against my lips. He smelled sterile, almost clean. It wasn’t him. ♦
Daughter opens up on father’s medically assisted death
Jen Wiles, far left, and Shanaaz Gokool, CEO of Dying with Dignity Canada, second from the right, pose with other speakers ahead of an end-of-life speech on Saturday, June 2, 2018.
[A]s with thousands of other Canadians, Robert Wayne Nelson had the chance to die on his own terms.
Nelson’s earlier diagnosis of Parkinson’s disease was enough to handle in the years leading up to his spring 2016 diagnosis of progressive supranuclear palsy — a disease his daughter, Jen Wiles, described as Parkinson’s “evil big brother.”
Doctors didn’t know what to do. The severe brain disorder holds no effective treatments.
However, as a biologist throughout his life, the then-71-year-old had always followed legislation surrounding medical assistance in dying.
“My dad was the first medically assisted death in our community,” said Nelson’s only daughter, Wiles, of her father who died on Feb. 15, 2017, in Camrose.
“He really understood that there was a place for this — not that he ever thought he would use it.”
In February 2015, the Supreme Court of Canada ruled in Carter v. Canada that parts of the Criminal Code prohibiting doctor-assisted death would need to change to satisfy the Canadian Charter of Rights and Freedoms.
The ruling opened the door for medical assistance in dying and on June 17, 2016, federal legislation allowed people to die on their own terms, under certain circumstances.
In October 2017, Health Canada released numbers showing there were 2,149 medically assisted deaths in Canada between Dec. 10, 2015, and June 30, 2017.
As of April 30, 2018, Alberta Health Services reported 364 Albertans had received medical assistance in dying — of those, cancer, multiple sclerosis, ALS and advanced lung disease are the most-cited health conditions.
Those who wish to end their life on their own terms must have a grievous and incurable condition. Then, they have to make their initial request before two required assessments, followed by a 10-day waiting period — one that can be waived.
Wiles said their fight for her father to undergo doctor-assisted death was a challenging one.
“We didn’t have community support because of our faith-based community, which was really challenging,” said Wiles.
Robert Wayne Nelson pictured in an undated photo, died with medical assistance on Feb. 15, 2017.
“It was really hard to find assessors in central Alberta.”
It took nearly a year for Nelson to get his wish of assisted death, but it was something that left his family at peace.
“Despite the fact that we went through this really challenging couple of months … for us, it was really good,” said Wiles.
“The outcome for our family was positive — it was what he wanted. After his death we felt good, which is a strange thing to say. We did everything with him. We went to the funeral home, we picked up a column burial together, we did all this stuff with him.
“Through all those months, we came to a place that was really kind of beautiful and we have felt good since. We were able to really grieve ahead of time. He was relieved, we were relieved. We got up the next morning and we felt good.”
Knowing he was able to go out on his own terms only help the family he left behind.
“He did not want to go into palliative care, he did not want to see the end of his disease process,” she said.
The day after Nelson died, Wiles’ mother went to her coffee group sharing the story of the day before.
There, a woman who lost her husband nine years prior to a terrible battle with cancer wept openly as she wasn’t able to be over the trauma of his death.
“My dad gave us a gift — we didn’t have to watch that suffering,” said Wiles.
“He already couldn’t write, couldn’t read, he couldn’t be on the computer, couldn’t talk on the phone. All the beautiful things he did with his life, he couldn’t do anymore.”
Shanaaz Gokool, CEO of not-for-profit Dying with Dignity, explained ahead of a Saturday speaking event marking two years since the practice became legal how the process can be different for everybody.
“The more precarious your health is, the greater chance you have of losing capacity and therefore you can lose the right altogether. Medical assistance in dying is a life-affirming treatment,” she said, noting in communities that are less prepared, it’s more difficult to find support.
“Assisted dying for those left behind can be the gift of no regret.”
For those in small communities like the one Nelson lived in, the process for medically assisted death can be a frustrating one.
However, those living in major centres like Toronto can go through the process start to finish in one day.
Gokool said the next step for the country is looking at opening up the legislation to make medically assisted deaths easier and more accessible.
“The problem is that the legislation uses deliberately vague language and it excludes many hundreds and possibly thousands more. We have different interpretations from one end of the country to the other in terms of the eligibility criteria,” she said.
“Then we have different access issues people are having — hurdles and obstacles in their way.”
Sophie Mackenzie on why her family backed her mother’s decision to stop eating and drinking when faced with terminal cancer
By Sophie Mackenzie
[I]t was late evening on a Monday in April, the end of a bright autumn day in Johannesburg, when Mum died. The nurses who were caring for her had made her comfortable for the night, turning her on to her side with a pillow to cuddle, the way she liked to sleep. My sisters Vicky and Jassy and I were with her. We held her hands, told her how much we loved her, and that it was safe and right for her to go. After a few minutes, her breathing stopped. It was a good death – the kind of death I think most people would choose if we could: free from pain and surrounded by love. She wasn’t hooked up to tubes or monitors; she was even wearing her own pretty nightdress rather than a hospital gown. I suppose it’s what you’d call a natural death. But in one way Mum’s death was exceptional, shocking even. She had decided to die, about 10 days before, and for the previous six days had had no food and almost no water. She had chosen to die of thirst.
The story of Mum’s death begins in September 2008, when she sent an email to her daughters, telling us that she had been diagnosed with colon cancer. “Don’t worry about me, darlings,” she wrote – but it was clear that she herself was desperately worried: about loss of dignity, about the cost of her medical care, about whether Dad would be able to learn to make his favourite spaghetti bolognese if she was unable to cook for them both – all the details of death. In the event, after a frightening and rocky few weeks and major surgery, Mum recovered well, and by the beginning of this year we had all started to make plans to celebrate her 80th birthday in August. With Mum and Dad’s five daughters living so far apart, times when we were all together are rare and precious.
Then, at the end of February, came a letter from my eldest sister Emma in place of Mum’s normal Sunday email. “Mum isn’t feeling great,” she wrote, “and she asked me to write so you wouldn’t worry.” But, of course, we instantly did begin to worry, and it was only a few days before the diagnosis we’d dreaded arrived. Mum’s cancer had metastasised and spread to her brain and possibly also to her lungs. Her oncologist immediately set her on a course of radiotherapy and cortisone to shrink the tumours, telling us that it would take up to two weeks before we knew whether the treatment had been effective.
Vicky, who has experience caring for the terminally ill, travelled to Johannesburg to help Mum and Dad, and they had long and honest talks about the decisions Mum faced. She wasn’t quite ready, she said at first, to leave Dad, “this beautiful world”, as she put it, and us. But over the next few days, Mum’s condition began to deteriorate, and she became increasingly uncomfortable and frustrated. Mum was a very private person. She loved order; she hated mess and squalor, and illness is often messy and squalid. She told Vicky again and again that she didn’t want to go through more treatment. She didn’t want Dad to see cancer killing her. She wanted to die quickly and quietly. She didn’t want any fuss.
It was Emma who first told Mum about an article she’d read several years earlier in the Journal of the American Medical Association about voluntary refusal of food and drink as a means of bringing about death in the terminally ill. The author described it as a relatively painless way to die: a gradual slipping away into a coma, followed by death. Typically, a person will take between five and 10 days to die this way and, crucially, they have the option to change their mind and stop the process until almost the end. Mum just latched on to the idea, Emma remembers. She decided that she was going to stop taking the cortisone that was keeping the tumours in check, and stop eating and drinking as well. She wasn’t going to let the disease take over.
Like many people, I simply didn’t know that choosing to stop eating and drinking is, as Jassy put it, “a Thing”. But it is – it’s a thing about which you can find pages and pages of information on the internet, once you have a reason to Google it. It’s a thing that’s been reported quite extensively in medical literature, known variously as VSED (Voluntary Stopping Eating and Drinking), VRFF (Voluntary Refusal of Food and Fluid), PRNH (Patient Refusal of Nutrition and Hydration), or self-dehydration. It’s a thing doctors who have practised for a long time and seen many patients die at home describe as “taking to their bed” or “turning their face to the wall”. It’s a thing that was explored and argued by lawyers acting for the man known publicly as Martin, whose case was recently heard alongside Tony Nicklinson’s. It’s a thing, as I discovered when researching this article, that people seem afraid to talk about.
‘She wanted the kind of death most people would choose, if we could’ (from left): Jassy, Juliet, Sophie, Emma and Vicky with their parents.
There is nothing illegal about refusing food and drink; in fact, feeding a competent person against their will constitutes assault. Nonetheless, Mum was afraid that something would happen to prevent her reaching her goal. She worried about falling and breaking a hip, ending up in hospital and being caught in a spiral of intervention that would prolong her life. She worried that intravenous nutrition and hydration would be given to “keep her comfortable” if she became unconscious. She had signed a living will expressing her preferences, but such advance directives are generally regarded as worthless unless the dying person has a supportive medical team who understand their wishes and are prepared to act upon them.
South Africa’s legal position on assisted dying is fundamentally the same as Britain’s: if you help another person bring about their death, you could risk prosecution. As in the UK, there have been attempts to clarify the law on end-of-life decision-making processes, removing the grey areas that currently exist. Professor Willem Landman, CEO of the Ethics Institute of South Africa, is one of the leading figures campaigning for a change in the law. He explains that in 1998, President Nelson Mandela commissioned a report into the legal and ethical issues surrounding assisted dying, assisted suicide and euthanasia, but after being tabled in parliament in 2000, the report was ignored by the ministry of health. Landman believes this may be because the then minister of health, Dr Manto Tshabalala-Msimang, regarded the issue as something of a middle-class problem. Perhaps it is. When birth and death are less medicalised and a more integral and familiar part of life, perhaps choice in such matters seems an unnecessary luxury. Perhaps mothers do die gently, cared for by their daughters, without worrying about indignity and fuss. But they don’t die quickly, or without pain.
Mum had always talked frankly to us about death. My sister Juliet remembers when she was a little girl and terrified of dying, Mum telling her, “Your body is like a suit of old clothes – by that time you will be tired of it and you won’t want it any more.” Mum hated clutter and hoarding; when a thing had outlived its usefulness, it was to be disposed of without sentiment, whether it was a favourite dress the moths had got to, a book that was falling apart at the spine or her own body. She made it clear to us that she would far rather be dead than be a burden on her husband and daughters. Now, with her hands becoming increasingly unsteady and fits of dizziness coming unexpectedly, she was finding the colostomy bag she’d had since her surgery in 2008 difficult and humiliating to deal with. She felt that her body was wearing out and, more frighteningly, her head felt heavy and fuzzy.
Over the course of a long phone call, Vicky told me that Mum had made a decision. She was going to stop taking the medication that was checking the spread of her cancer, and stop eating and drinking, too. We had about a week to say goodbye, so Juliet and I flew to Johannesburg as soon as we could. It was the sort of family reunion Mum loved, and in many ways it was like all the other happy times we have spent together, filled with love and laughter. We planned meals together, cooked in Mum and Dad’s tiny kitchen, ate and drank together, just as we’ve always done on family holidays, over Christmases and at other celebrations – only this time it was Mum’s life we were celebrating, while she went through the process of dying.
It was the most remarkable week of my life, and it has left me unafraid of death.
I’d been afraid of seeing Mum since this latest illness. I was expecting to find her diminished, somehow less herself. But I was amazed by how well she seemed. Vicky had cropped her hair so that she wouldn’t have to experience it falling out, and Mum, with the pride in her looks that beautiful women never lose, was obviously upset by her appearance. But to me she looked lovely. She shone with happiness at having all her daughters there with her and Dad. She was full of her usual curiosity and humour. She didn’t look like someone who was ready to die, and this frightened me – what if somehow stopping eating and drinking didn’t work, and Mum lingered on in pain? What if the process didn’t take a matter of days but a matter of weeks? Part of me knew how much she would hate to be thwarted in her intent; part of me longed to keep her with us for longer, and hoped that, even now, some sort of miracle might happen. I even suggested to Mum that she should stay at home for a few days, just to see how she felt, but she was adamant: her decision had been made. The next day, she was going to move to the nursing home at the retirement community where she and Dad lived, and she was going to die there.
Although Mum was unable to walk unsupported and her hands were very shaky, she was alert and lucid, chatting to us as she always had. Her appetite was small, but she was still enjoying food: pizza with olives and anchovies, strong cheddar cheese, the fruit cake Juliet had baked and been saving for Mum’s 80th birthday. Juliet’s cake was the last thing Mum ate, on Wednesday 28 March, when her brother visited to say goodbye, and she had a last chat with her sister in the UK. We were all in tears that morning, except for Mum, who stayed calm and cheerful.
I didn’t see Mum leave her home for the last time. Dad, Emma, Juliet and Vicky were with her, and Juliet cried afterwards when she told Jassy and me how Mum had gone around the little house where she and Dad had been so happy, saying goodbye to it and all her precious things, before being driven the few hundred yards to the nursing home. The staff there welcomed her and settled her into bed, and she curled up and went to sleep.
It’s fortunate that Mum was surrounded by people who supported her decision. Her GP believes that people at the end of their lives should have the right to be “conductors of their own orchestra”, and made it plain that she would prescribe whatever pain relief Mum needed to mask the symptoms of her advancing cancer, and whatever sedation she required to alleviate distress. The management of the nursing home hold the same view. Her GP gave them written instructions explaining Mum’s decision and outlining the care she would need. “She is a very brave lady,” the email concluded. And, of course, Mum had five daughters who adored her and a husband who’d worshipped her for almost 60 years, and we were all unequivocally on her side.
The five of us sisters rallied behind Mum and Dad; we were a team. As I write this, it’s difficult to isolate my own feelings and experiences from those of my sisters – who said what, who made decisions, who cried. It’s a gruesome analogy, but the five of us, Dad, Mum’s GP and her carers were like a cheerleading squad urging her on towards the goal she had chosen. This isn’t always the case. I was horrified to read a 2011 report in the New York Times which told the story of Armond and Dorothy Rudolph. The Rudolphs, both in their 90s and with failing health, made the decision to end their lives together by stopping eating and drinking while they were still mentally competent and able to live independently. The management of the assisted-living facility where they had their home responded by attempting to evict them. It was only after intervention by the couple’s family, the local press and medical and legal experts that the attempt was stopped. Armond Rudolph died after 10 days without food and drink, and Dorothy a day later.
We laughed a lot over the next few days. We teased Juliet about developing late-onset colour-blindness when she kept putting bottles of red wine in the fridge, while the white stayed warm on the kitchen counter. Jassy and I speculated macabrely about what would happen if the nurses forgot to take down the “Nil by Mouth” sign over Mum’s bed after she died – we imagined some poor old dear being moved into her cubicle and waving plaintively as the tea trolley rattled unheedingly past. Emma and Juliet still haven’t let me forget the nightmare 10-mile walk I dragged them on around the suburbs of Johannesburg, possibly the world’s least pedestrian-friendly city. One night after dinner, Emma and Juliet went to visit Mum, and the three of them chatted and reminisced until eventually my sisters were asked to leave – their laughter was keeping the other old ladies awake.
In the midst of Mum’s death, our normal lives went on. I was writing a seemingly endless list of product descriptions of cheeses – I’d hoped that Mum would have enjoyed working with me on them; a writer herself, she would have embraced the challenge of describing the differences between stilton and roquefort. But she was too drowsy, although she loved being read to. We planned each day as it came: who would be spending time with Mum, and when; who would cook, and what, and for how many. Of course we talked about Mum and what was happening, sharing our fears about what the next few days would hold, and our happy memories of her. Often, it felt just as if she was there with us, as she always had been when the family was together.
There were hard parts, too. By Friday, although Mum was still spending a lot of time asleep, her waking hours were difficult. She was dreaming, she told us, about drinking ice-cold Coke, and waking feeling desperately thirsty, as one does with a bad hangover. Chips of ice helped to relieve the dryness in her mouth, and she had sugar-free mints to suck as well as frequent glycerine mouth swabs, but the thirst remained. She also developed a pounding headache as her blood sugar level fell. Emma bought her some Coke, thinking that the occasional sip would make her more comfortable and do little or nothing to prolong her life. But Vicky, determined to support Mum completely in her decision, said, “It could set her back days!” and took it away, leaving the nurses crying in her wake. That day, Mum said to us, “I didn’t realise it would be so hard.”
She wasn’t the only one. Being a spectator at the death of someone you love is bitterly hard. We expect medical science to intervene to relieve suffering, and to a great extent it does. But the journey is a lonely one. Even surrounded by the people who loved her most, and professionals who gave her the very best palliative care, Mum fought her battle for death alone. How much more lonely, and how much more frightening, the process must be for people who aren’t supported by their family, or aren’t able to communicate their wishes, I can only imagine.
Mum spent a lot of the next three days asleep, but when she was awake, we chatted to her and to each other, and Jassy read to her from her new novel, which is dedicated to Mum. She also enjoyed having her hands massaged with her favourite body lotion as her skin began to get dryer, and the scent greeted us when we came into the ward to see her. Dad was his usual self: strong, serene and often silent, surrounded by his five chattering daughters, but occasionally cracking us all up with his characteristic dry wit. He spent a lot of time at Mum’s bedside, sitting with her while she slept. Mostly, it was a peaceful and happy time.
On Sunday, Mum began to slip away. In the morning she was still alert, asking for ice to suck and chatting to us almost normally, but by the evening she was no longer able to speak easily. I’d had a bad cold for the previous few days, and when I heard the new rattle in Mum’s breathing, I became convinced that she had caught it and my virus was going to be the thing that finally carried her off. I sat by her bed and cried my heart out – a mixture of guilt, grief and all the stress of the last few days just pouring out of me. I felt embarrassed by my tears in the face of Mum’s courage – absurdly, I didn’t want to worry her. She asked me several times, “Am I going to be all right?” I told her that she was, and that I loved her. There wasn’t anything else to say. That was the last time she spoke.
For most of the six days it took her to die, Mum was in no pain. The morphine patches she had been prescribed relieved any symptoms her advancing cancer might have caused, and the sedatives kept her calm and drowsy. However, it’s not known whether such palliative care actually removes the dying person’s experience of hunger and thirst, even once they have lost consciousness. A paper published in the Journal of Medical Ethics in 2011 concluded that “continuous deep sedation may blunt the wakefulness component of human consciousness without eradicating internal affective awareness of thirst and hunger”. I hope that, for Mum, the dreams of ice-cold Coke and the sensation of thirst stopped once she fell asleep on that Sunday night.
On Monday morning, Mum was moved from the main ward where she had spent the past five nights. The curtains around her bed had remained closed while she was there – Mum would have wanted the privacy, we knew, but still we speculated darkly about whether the staff had kept her hidden in case the other ladies got ideas and decided to emulate her. Her new bed was in a private room. She barely woke when she was lifted, and she was losing the ability to swallow. In the afternoon, the vicar came to say the last rites, with all five of us sisters and Dad there, perching on her bed and chairs around it. Mum seemed to be aware of the words of the service – perhaps owing to the vicar’s maximum-decibel delivery, which we all laughed about afterwards – but she was sliding deeper and deeper into unconsciousness.
That evening passed slowly, as time does when you’re waiting for something important to happen. I carried on with my writing – the cheese product descriptions were complete and I’d moved on to fish, and it was comforting to escape into work. Emma and Juliet were spending the night at home with Emma’s partner and his children. Dad did a crossword puzzle; Vicky made a batch of chicken soup, using Mum’s recipe. Over dinner we talked about the practical things that would soon need to be done, and decided that Vicky would be the one to phone the undertaker, and that she would remove and take care of Mum’s rings and watch. We asked Dad if he felt it was important for him to be there when Mum died, but he felt that he had already said a very temporary goodbye – he was, and remains, confident that they will be together always once he joins her. So Jassy, Vicky and I took the familiar route up to the nursing home to see how Mum was and decide what to do about spending the night with her. It was the last time we’d walk that way; within a few minutes of our arrival, she was dead.
I went back to Jassy’s house that night and wrote about Mum’s death. My overwhelming feelings were relief and pride – my brave, beautiful mother had taken on the hardest challenge of her life, and won. I could go home to my partner, whom I missed desperately, my home in London and my little cat. My sisters and Dad felt the same, I think: tired, but triumphant, too. We’d achieved what we had set out to do, as sisters and as a family.
Even if Dignitas had been a practical option for Mum, I don’t believe she would have chosen it. Apart from anything else, she loathed travelling. (I suspect she would also have regarded the cost as a wanton extravagance.) But what if there had been another way for her to take? An injection administered by a doctor she trusted, or pills brought to her by Dad or one of us? I’m not sure. Perhaps she wouldn’t have wanted anyone else to bear the responsibility of having ended her life. Also, I think part of her relished the challenge, the control and the independence of doing it the hard way.
In the obituary that was read at Mum’s funeral, Vicky remembered a saying that Mum was fond of quoting: “Old age is not for sissies.” Mum was no sissy – as Emma put it later, Mum was a soldier. She embarked on her final journey with steely determination, astonishing courage and immense dignity. I feel honoured to have been a part of the process. I’ve seen that it is possible to choose and achieve a good death, on one’s own terms. I used to be in favour of changing the law on end-of-life choices; now I am evangelical about the importance of autonomy in terminal illness and death. I’m so proud of what Mum did, and of how my father, my sisters and I helped her to achieve it. But that doesn’t alter my passionate belief that people in Mum’s position, or Tony Nicklinson’s, or Martin’s, should have more, better and easier choices.
[G]rief is a natural response to losing someone or something that’s important to you. You may feel a variety of emotions, like sadness or loneliness. And you might experience it for a number of different reasons. Maybe a loved one died, a relationship ended, or you lost your job. Other life changes, like chronic illness or a move to a new home, can also lead to grief.
Everyone grieves differently. But if you understand your emotions, take care of yourself, and seek support, you can heal.
What Are the Stages of Grief?
Your feelings may happen in phases as you come to terms with your loss. You can’t control the process, but it’s helpful to know the reasons behind your feelings. Doctors have identified five common stages of grief:
Denial: When you first learn of a loss, it’s normal to think, “This isn’t happening.” You may feel shocked or numb. This is a temporary way to deal with the rush of overwhelming emotion. It’s a defense mechanism.
Anger: As reality sets in, you’re faced with the pain of your loss. You may feel frustrated and helpless. These feelings later turn into anger. You might direct it toward other people, a higher power, or life in general. To be angry with a loved one who died and left you alone is natural, too.
Bargaining: During this stage, you dwell on what you could’ve done to prevent the loss. Common thoughts are “If only…” and “What if…” You may also try to strike a deal with a higher power.
Depression: Sadness sets in as you begin to understand the loss and its effect on your life. Signs of depression include crying, sleep issues, and a decreased appetite. You may feel overwhelmed, regretful, and lonely.
Acceptance: In this final stage of grief, you accept the reality of your loss. It can’t be changed. Although you still feel sad, you’re able to start moving forward with your life.
Every person goes through these phases in his or her own way. You may go back and forth between them, or skip one or more stages altogether. Reminders of your loss, like the anniversary of a death or a familiar song, can trigger the return of grief.
How Long Is Too Long to Mourn?
There’s no “normal” amount of time to grieve. Your grieving process depends on a number of things, like your personality, age, beliefs, and support network. The type of loss is also a factor. For example, chances are you’ll grieve longer and harder over the sudden death of a loved one than, say, the end of a romantic relationship.
With time, the sadness eases. You’ll be able to feel happiness and joy along with grief. You’ll be able to return to your daily life.
Do I Need Professional Help?
In some cases, grief doesn’t get better. You may not be able to accept the loss. Doctors call this “complicated grief.” Talk to your doctor if you have any of the following:
Trouble keeping up your normal routine, like going to work and cleaning the house
Thoughts that life isn’t worth living, or of harming yourself
Any inability to stop blaming yourself
A therapist can help you explore your emotions. She can also teach you coping skills and help you manage your grief. If you’re depressed, a doctor may be able to prescribe medicines to help you feel better.
When you’re in deep, emotional pain, it can be tempting to try to numb your feelings with drugs, alcohol, food, or even work. But be careful. These are temporary escapes that won’t make you heal faster or feel better in the long run. In fact, they can lead to addiction, depression, anxiety, or even an emotional breakdown.
Instead, try these things to help you come to terms with your loss and begin to heal:
Give yourself time. Accept your feelings and know that grieving is a process.
Talk to others. Spend time with friends and family. Don’t isolate yourself.
Take care of yourself. Exercise regularly, eat well, and get enough sleep to stay healthy and energized.
Return to your hobbies. Get back to the activities that bring you joy.
Join a support group. Speak with others who are also grieving. It can help you feel more connected.
Here’s a question we all have to answer sooner or later: What do you want to happen to your body when you die? Funeral director Caitlin Doughty explores new ways to prepare us for inevitable mortality. In this thoughtful talk, learn more about ideas for burial (like “recomposting” and “conservation burial”) that return our bodies back to the earth in an eco-friendly, humble and self-aware way.
[T]here are many ways that death has followed me throughout my life. I was born with my umbilical cord wrapped around my throat and a disability nearly caused my death several times as an infant. When I was three and I stopped growing, my growth hormone, before it was made in a lab, was taken from cadavers.
Fearing death dominated my childhood so much that I became extremely paranoid. Growing up with a gay parent and hearing about Matthew Shepard, I had to trust the friends I brought home into my life. Already having been bullied in school for supposedly being a lesbian, I didn’t want to give them any reason to escalate the harassment physically. While I know I’m not personally going to be targeted, the spectre of death is ever present.
But so much of death is about mourning people who have died, when, for LGBTQ people especially, there is a kind of death that is not really discussed, explored or acknowledged—the death and mourning of the living. Estrangement grief is a thing, and it’s complicated to mourn a person who is not dead.
“Death positivity” is about coming face to face with mortality and, instead of fearing and ignoring it, embracing it. I came across this movement through the “Ask A Mortician” channel on YouTube run by Caitlin Doughty, who is also behind the death positivity movement Order of The Good Death. Fundamentally, death positivity is about challenging the way our society views death and creating a culture that allows people to be more prepared and ready to make the difficult choices around death that they may be avoiding.
All around the globe, people have signed up to be part of The Order of The Good Death, and this may mean something as simple as taking an active interest in making end of life wishes to educating people locally about burial options to campaigning in local government for options such as water cremation, which aren’t available in all areas.
The process of becoming death positive is about embracing the realities that lie at the end of my life, it also has helped me embrace several lessons that have helped me live my life.
I am estranged from both of my parents: one of them disowned me and the other has mental health problems that make a relationship between us difficult. Other family members either don’t show very much interest in me or, when I have attempted to reach out for support, have either not responded or told me they were tired of “weird.” As someone who has always felt quite strongly about family ties, these losses were difficult to endure. But the lessons I have learned through death positivity have made them much easier to cope with.
1. Sadness is not shameful.
This seems obvious, but it isn’t. Part of death positivity encourages people to think about what choices they want for their bodies after death. That got me thinking about the complex way I’ve felt about funerals I’ve been to—how cold and incredibly formal they’ve felt and how awkward it was to express strong emotions in austere settings. I decided I didn’t want the people I left behind to feel how I felt. I wanted them to feel like being sad was okay. And in doing so, I had to tell myself that it was okay not only for the people who lost me to mourn, but for myself to mourn the people I have lost.
Estrangement isn’t always permanent, but holding on to the hope of change in many instances can end up causing more pain than it’s worth. It may seem on the outside that your estranged relative has more of a chance of coming back into your life than a dead relative, but that isn’t true for everyone.
Giving others the space to grieve helped me understand that it was okay for me to grieve. At least now when I mourn the loss of people in my life, I can accept that I have these feelings and not fight against them.
2. Grief and recovery aren’t linear.
In thinking about how I wanted to prepare as much as possible for my loved ones before I die so that they don’t have to stumble around in the process of grief, I had to come to understand it more. Despite the presence of death and loss in my life, there have been few family members I have actually felt sadness at losing. My mother was 18 when she had me and her mother was 18 when she had her, so I have a relatively young family. I lost my grandfather and step-grandfather when I was in high school, but I knew both of these men as abusers of my mother.
When they passed, I wasn’t even remotely sad. Many of my great uncles and aunts had passed, and I lost a second cousin to a tragic accident, but I didn’t have very close relationships with these people. It was when my great grandmother died in 2013 and I didn’t have the money to fly home and attend her funeral that I came face to face with my biggest loss.
One of Caitlin’s videos talks about the reasons people fear death, and one of them is the impact it will have on their loved ones. Much of what I suspected from both Caitlin’s videos and the crowdfunders I’ve contributed to for funeral costs spelled out the reality of the impact “traditional” funeral homes and their soaring prices can have on families. I had to understand that grief is expressed in so many different ways and it’s not as simple as “letting it go.”
In the case of my great grandmother, losing her felt so odd and numb that I had almost no emotion when I heard the news that she had passed away. She was 98 years old and the morning I got the news, I’d had a funny feeling that she was gone. Without having ever experienced a massive loss, I didn’t at the time know what was normal. And I secretly felt ashamed that I hadn’t shed many tears, though I told nobody.
Years after her death, I was trying to recall how she made biscuits every Sunday morning for breakfast. My mind walked through the process of her pouring flour and lard on her biscuit pan, but there was a lot I couldn’t remember. When it occurred to me that I couldn’t ask her anymore, something broke in me and I finally cried. After being active in Death Positive communities, I knew and understood that grief wasn’t linear and that sometimes the sadness comes and goes when it wants.
Likewise, I stopped telling myself to “let it go” when I was grieving estrangement from my parents. When you experience a loss, you have good days and you have bad days. Thinking about my own death and preparing for it meant thinking about what my loved ones would go through in their grief. I would never expect them to just stop feeling their feelings, so why should I expect my feelings to suddenly go away?
3. Celebrate the time you have.
The Order of the Good Death may sound very morbid and odd to some. But in her videos, Doughty points out that “the good death” is not about failure if you don’t plan, but about the idea that avoiding conversations about death ultimately means much more hardship than addressing it at all.
Facing my own mortality in a healthy way encourages me to actually take advantage of the time I have. When death becomes something that moves from being in the unknown, terrifying and looming but never addressed to being looked at, planned for, and understood, that also means that you’re more likely to take advantage of life.
Loss and grief become part of the process of death and equally part of the process of life. When I learned to address the fact that all life will end including my own, it felt easier to for me to cope with the idea that several of the relationships I once valued and held dear in my life were also at an end—and that’s okay. And what’s more, it’s helped me appreciate what time I do have and know not to waste it on people who hurt me or don’t respect me for who I am.
Death positivity may sound like a bizarre notion, especially as a queer person and a disabled person fighting in many instances to stay alive. It’s not about wanting to be dead. It’s not about being happy about dying. But it’s about facing the reality of death in a way that isn’t the paranoia and fear I’ve had sit heavy on my shoulders.
And doing so has helped me cope with what a lot of other people like me go through when we lose a family member either because of our own identities or because of their inability to accept and see us for who we are in a loving and positive way. Reckoning with the face of grief and mourning has given me tools to use to cope with a different but also painful kind of loss.
Because I embrace the fact that I will die, I live better.
For years, Dr. David Wong has questioned why religious people, who say their souls go to heaven, would go to such extremes to protect their dead body by embalming, select expensive wooden caskets and then even protect the casket. Perhaps green funerals are the alternative?
By Dr. W. Gifford-Jones
[H]ow would you react if you saw people dumping 800,000 gallons of formaldehyde, a carcinogenic substance, into the earth every year?
Then witness them cutting down four million acres of forests annually? I suspect the environmentalists who fight underground oil pipes would be raising holy hell about formaldehyde and rampant destruction of trees. Yet this is what it takes to bury the U.S. dead every year. So why are environmentalists so silent?
Now, a film called “Echo Death Takeover: Changing the Funeral Industry” has been produced by The Order of Good Death, founded by funeral owner Catlin Doughty who advocates green funerals.
Some readers may wonder why I’m writing about death when I’m trained to keep people alive. But pollution of many types is currently causing serious respiratory and other health problems. Moreover, for years I’ve questioned why religious people, who say their souls go to heaven, would go to such extremes to protect their dead body by embalming, select expensive wooden caskets and then even protect the casket. And although I’m not a religious authority, don’t they always say at funerals, “Ashes to ashes and dust to dust?”
So, what to do about the current burial procedure? Formaldehyde was discovered by a chemist, August Wilhelm von Hofmann, in 1867 and it quickly replaced arsenic as the prime way to embalm bodies. Now we know that formaldehyde is a hazardous substance, highly toxic to humans. It is linked to cancer and irritates the eyes, nose and throat.
Some readers would reply, “But what about cremation? Is this more eco –friendly?” Unfortunately, where there’s fire there’s smoke. Cremation also produces harmful substances such as carbon dioxide, hydrochloric acid, sulphur dioxide, dioxin, mercury from amalgam dental fillings and carcinogens.
If the body is embalmed, smoke also contains vaporized formaldehyde which remains in the atmosphere. That is, until it bonds with water. Then we are rained on with formaldehyde. So be sure to take a good raincoat and hat if attending a rainy funeral. Besides, cremation requires heat that could be used for other purposes.
So, what is a green funeral? It’s a process called alkaline hydrolysis, also called flameless cremation or water cremation. The body is placed in a pressurized steel container filled with 95 per cent water and five per cent potassium. For the next three hours the body undergoes chemical decomposition, reducing it to soft bone fragments. This mixture of amino acids, peptides, sugar and salt can then be used for fertilizer.
Water cremation is not an illogical proposition for the next century. It’s now legal for human disposal in four U.S. states and in 14 for pets.
Are there negatives to water cremation? I imagine some would be disgusted at the dissolving of a loved one in a warm alkaline bath. But, surely, it’s less psychologically shocking than having Grandpa inserted into a fiery inferno.
Another alternative is to wrap the body in a biodegradable shroud made of cotton or unbleached bamboo, place it in a biodegradable casket in a shallow grave and let bacteria break down all these ingredients.
So, what’s going to happen? I hope that good sense will one day finally prevail and the days of spending thousands of dollars on today’s burial rites will finally end.
Shakespeare, in his play “Hamlet,” describes the scenario of life and death so well. He wrote: “Worms are the emperor of all diets. We fatten up all creatures to feed ourselves and we fatten ourselves for the maggots when we are dead. A man may fish with the worm that hath eat of a king and eat of the fish that hath fed of that worm.”
This is not a pleasant thought or the best bedtime reading. But regardless of how expensive the casket is the worms finally win. So, isn’t there a better way to protect the planet and return all the minerals and other elements to the earth?
So, what is my wish on death? My family knows I want a simple bench along the waterfront in Toronto where people can relax and enjoy the view. My ashes beneath can help the trees grow.
