– Meet The Death Positive (Or Accepting) Practitioners
Have we lost the ability to die ‘well’?
By Tessa Dunthorne
Dead Uncertain: Why We’re Disconnected From Death
‘I was lucky, in a way,’ considers Dr Emma Clare. ‘I was brought up by my grandparents, so I always had that awareness that they were closer to the end of life than most people’s parental figures. We were also very immersed in nature, my grandad always outdoors in the Peak District, and bringing home dead wildlife to look at and appreciate. We especially liked birdwatching, and sometimes he’d find [dead] birds, like hawks, that you don’t often get to see up close – he’d call me outside, we’d have a look, and we’d be like, “wow, isn’t life amazing”.’
Emma is an end of life doula and has a PhD in death competency from the University of Derby. Not dissimilar to the doulas who stand alongside midwives for new mothers, she is one of the palliative and post-life care workers who step up in difficult times to hear the wishes of the dying, facilitate conversations for newly bereaved families, and provide a strand of support that the medical system cannot give. In short, she – and her peers – are the people who make death a bit more human – because, essentially, we’ve lost the ability to die well. And it’s come in no small part from our increasing disconnection from nature.
In a recent episode of environmental journalist Rachel Donald’s podcast Planet: Critical, agroecologist Nikki Yoxall bemoans how we’ve begun to think of death in nature as a waste – as something we should try to fix. She argues that we’re increasingly ‘cleansed from decay’, a cycle within which all living things exist; that the invention of plastic itself can be credited with this alienation, as a material that defies that natural cycle with its foreverness.
We’re experiencing a nature deficit, and this is impacting our ability to connect with natural cycles
We’re also experiencing a wholesale nature deficit. Rewilding Britain suggests that 90 percent of our time is now spent indoors; we’re less food and nature literate, too The biggest indicator of this is how we’re living beyond the limits of nature, having transgressed six of the nine planetary boundaries set out by climate scientists. But it’s also cropped up in an unexpected way: how we interact with and experience the inevitability of death.
Like plastic, we’re now approaching a technological crux in history where we can (to an extent) deny the natural cycle of life and death (just look at the tech bros in Silicon Valley dropping millions in the search for everlasting life). Human beings have also, of course, made strides in medicine that have almost doubled our lifespans. But by doing so, argues Emma, we have also medicalised our experience of death.
‘Medical advancement is obviously a good thing,’ says Emma, ‘but it makes us feel like we’re aside from nature – that we can conquer death. And we think we know how to avoid it, when actually we don’t – we only know how to prolong the dying process.’
Dr Kathryn Mannix, the palliative care doctor behind With The End In Mind (William Collins, £9.99), argues that medicalisation has radically altered our experience of death. Or, rather, ended our experience of death. ‘Instead of dying in a dear and familiar room with people we love around us,’ she states, ‘we now die in ambulances and emergency rooms and intensive care units, our loved ones separated from us by the machinery of life preservation.’
Emma agrees. ‘One of the reasons that this discomfort starts in society is that a lot of our deaths are now behind closed doors, whereas even a hundred years ago, most people died at home with kids around.’
University of Exeter’s Dr Laura Sangha, a specialist in early modern death cultures, points out that frequent observance of dying in the past didn’t affect the gravitas of loss. ‘Seeing death more, particularly among young children, didn’t mean you grieved less,’ she says, ‘evidence points to parents and children having strong bonds, and parents experiencing heartbreaking suffering when they lost their offspring. But the fact that it was more likely to happen would have meant that you developed strategies to emotionally prepare.’
Other cultures still retain this emotional preparedness, suggests mortician-cum-YouTuber Caitlin Doughty in her book From Here To Eternity (Orion, £8.99). It sees her go around the world following different practises of mourning and burial. She found that Westernised society has shed holding space for the bereaved to grieve openly and without judgement.
In contrast, she found that the Toraja people, from South Sulawesi, Indonesia, embalm the bodies of loved ones and maintain them for years after a person dies, until their burial (after which they are often exhumed on special occasions). In Belize, families bring bodies home from the hospital for a full-day wake and pre-burial preparation, rubbing loved ones in rum to help release rigour mortis-seized limbs more quickly. Closer to home, in Ireland, wakes are held to display the body and queues of people come to pay their respects. In these examples, seeing is believing or at minimum the rituals enhance our understand of our place in the cycle; and it encourages a sense of purpose to help us grieve in meaningful ways.
‘Doulas want to bring death back into the community,’ says Emma, ‘we want to get to a point where people have basic knowledge around death.’
Community seems ultimately the key to unlocking our peace with the end. There is a hunger for open spaces for process and grief – you need only to look at the success of Death Café, which, since starting in an East London basement in 2011, has seen 10,000 events take place in 85 countries.
‘My late son, John, had the idea of Death Café because of his spiritual beliefs,’ says Susan Barsky Reid, his mother and co-founder. ‘He was a devout Buddhist, and so examined death and dying daily. I think he thought it would be helpful for people because there is so much death denial around.’
Indeed, From Here To Eternity concludes that the key to a calmer approach to the end comes as a collective. ‘Death avoidance,’ Caitlin explains, ‘is not an individual failing, but rather a cultural one. Facing death is not for the faint-hearted; it is far too challenging to expect that each citizen will do so on his or her own.’ And Susan points to joy in this shared challenge. ‘My first experience of a death café was life affirming; people laughed a lot and it was very fun. There was such a feeling of intimacy that one got from being with a group of strangers for an hour and a half.’
And then there’s that final link: nature. ‘One of the reasons I’ve been set up to be comfortable with death is because of nature,’ says Emma, ‘because all of nature is constant life and death, and in fact the things we think are most beautiful in nature ultimately tend to be death – like the autumn leaves falling from trees. All of the things we appreciate in nature are only possible because of that cycle from life to death, and I think the more time you spend being really present in nature, the more you feel like part of it, and that normalises being part of the cycle.’
What To Do Next
Read… Dr Kathryn Mannix’s palliative care memoir, With the End In Mind.
Attend… A local death café – they take place all over the country (deathcafe.com).
Consider… How you might like to be buried – and talk about it with loved ones – even if you think it’s a while off!
Recently I was asked this question at a recent death cafe. This young professional had found himself at a loss for words at the bedside of his friend who was dying an early death due to a chronic illness. This is actually a very common conundrum for most people but especially men who have been taught that revealing their emotion and being openly vulnerable is not only not masculine or professional. This affects us all because its now often socially unacceptable to acknowledge death is inevitable to a dying person.
A 2020 article on Psychology Today by Jade Wu PH.D, she states there are multiple reasons why we fear death. These reasons range from our personal physical health, age and religious devotion. I strongly recommend this article as some of the study results are not what you would expect. Our inability to relate to someone who is dying is directly related to how we relate to death ourselves.
Religious beliefs referred to being raised from the dead in a perfect body at the return of Christ can actually embed the thought that being dead is a less than perfect state. Others believe that if you profess your belief at least once on your deathbed, no matter what your life was like, you will be accepted into the pearly gates. While others don’t even believe in the existence of the soul and that when we die we rot like a log, the end.
There is no irrefutable evidence that can prove a part of us will continue to exist after death. Yet there are near death experiences, past life experiences, paranormal evidence and a long history of metaphysical experiences which support the continued existence of self-awareness; which when viewed as a body of work, has convinced me personally. I personally have investigated a good number of hauntings to feel completely comfortable stating that disembodied spirits (and entities) are absolutely real and interact with us often.
I have had multiple experiences of being with people as they pass. The practice of working with dying people, like most exposure therapy eases the fear of the unknown realm of the Dead. This too changes a person’s perspective. The only way to help others with death is to choose to wrestle with that shadow yourself. As I’ve stated probably in EVERY article, tomorrow is not promised; therefore, by not preparing yourself for these situations you may loose a valuable opportunity.
Trigger warning: I think one of the biggest fears, is not that of death directly, but that by acknowledging death can be imminent, it may cause a person to lose the will to live. This can be internalized by grieving individuals as having accidentally caused someone’s death and actually they are beating themselves up as having inspired a suicide. Suicide is a whole Pandora’s box which I previously wrote an article on The Right to Die and Death With Dignity (physician assisted suicide) movement.
Allow me to state that a person who is having serious health issues is not the same as a person who is actively dying, particularly in elderly patients. The phrase “active dying” refers to the fact that the doctors have done all they can and death is imminent in hours to weeks.
This is not the same as a Hospice level diagnosis. Technically one can qualify for Hospice if the doctor’s diagnoses is that death is likely to occur within 6 months. However, I often see in my local area, that by the time someone is given that diagnosis, they are actually only weeks away from death. This can be particularly confusing for me personally because I know they dont want to offer hospice services for people who may go on living for years. Part A of Medicare pays for hospice care at first for six months. After that six months an unlimited number of 60-day periods becomes available, if you are still considered terminally ill. In other words, hospice care is available in increments of 60 days for an indefinite period of time.
Let us consider several possible scenarios and options of action:
What if the dying person is at home and on hospice? These are really wonderful situations that are the most comfortable. Often the patient has some clarity and is aware. Depending on medication levels, there is a good chance you can have a nearly normal ability to converse, even with the elephant in the room.
What can you do?
First and foremost, treat your friend as you always have. Joke with them and chat about your usual things, just be comfortable. Nothing is worse than making the situation about you and your inability to deal with the situation. Focus on your friend/loved one.
Let’s address the elephant in the room! Gauge the awareness of your friend by inquiring what they know about their diagnosis and what the expected outcome may be.
Ask how they feel about that diagnosis and the likely outcome.
Ask if they feel prepared to face that and how you could help them feel more at peace with it.
This is often where people will be flippant and dismissive. This is where they are trying to be polite and allow you (and themselves) an out rather than go where things can be intensely emotional. All you need to do is to communicate that you are there to support them and that you can LISTEN. No one is expecting you to fix it or have answers.
Address the situation as if they are going on a trip; it is actually the ultimate trip. This can even involve into an easy way to communicate and give structure to the unknown aspects of leaving.
Details are important. Talk about your favorite memories with them. Skinny dipping, coffee in the morning, that trip to Vegas. Go for laughter!
It doesn’t have to profound. Be sure to tell them how important they are to you and what you garnered from having them in your life. Even if its that they made the best pancakes in the world, that is important!
Words can fail, but your actions will express all that needs to be said. Don’t be afraid to show your tears… this is pain leaving the body. The harder you push emotional pain away the more painful it feels and the harder and longer your grief will be. It’s ok to break down, sob and hug them. YOU both will get more out of that than you can imagine! BE VULNERABLE. Can you imagine how valuable you are making that person feel. And it allows them the opportunity to comfort you! WHAT A GIFT!
Perhaps you’ve come to visit with a person is in and out of consciousness or clarity. People in a facility/hospital setting are often on a great deal of pain medication or dementia and it can be a struggle to have a conversation or they may completely unable to communicate.
What you can do:
Hold their hand and touch them gently. Remember that scents, and touches may be intensified so be gentle, but please do it. Loving, gentle touch is often missing from the end-of-life because its all medically centered. You can also brush their hair, wash their face, arms, hands or feet. Apply lotion and lip balm. (I’ve never understood why cosmetic cleanliness seems to take a backseat to medical care when dying. If I’m dying, please brush my hair, wash my face, and (Scout) please do a bit of light makeup! I need to feel presentable to receive guests and address such a momentous occasion.)
Don’t be afraid to lie next to them or cradle them in your arms.
Talk out loud to them, they can hear you. Hearing is the last sense that is lost. Your voice may be like part of a dream in their experience, so be aware of what you are putting into their mind.
Be honest with them. If you are their heath care agent/proxy, their closest living relative, or the acting death doula, please tell them they are dying. Tell them the diagnosis and what is happening to them.
Tell them where they are and who is in the room. Tell the who the aid/nurse is and what procedure they are doing. People are not packages and nursing staff can get caught up in doing an job. Even doctors no longer speak to those who are unconscious. They are still alive and likely aware!
Don’t talk about the will, the funeral or the burial! This is business and in reality, it only affects the living… not the dying person! Be aware and considerate of what is important to the dying person.
Everything listed above still applies.
Consider talking about their closest loved ones who have already died. I am a firm believer that the dead come to greet/gather up those who are dying. Sometimes they will tell you who is coming to gather them. Ask the nurses if they have noticed her talking about anyone that might be passed; this will not be a strange question to them, trust me. Its likely whomever they loved the most during their life, often its a parent, spouse, sibling or best friend. You can help them reconnect with them by assuring them that “Uncle John is here to be with you.”
Take time to think about these things before you go into their room. You can have a set of favorite memories ready as well as a possible discussion about who has already passed that will be there to greet them. Don’t be afraid to look like a fool, to be emotional or to be out of control. Death is the ultimate revealer of what is actually important.
In 2015, Isdale, then 31, was diagnosed with stage four bowel cancer and given 18 months to live. Despite a period of remission and 170 rounds of chemotherapy, the disease has since spread to her lymph nodes.
I always thought, “I’ll get my career sorted, then we’ll get married, have children, go travelling.” And then cancer happened. You grieve for your future self. Your imagined children and your career. If I died tomorrow, what I’d be saying on my deathbed is I regret not spending enough time with my family. So that’s what I focus on.
I have a “Yolo list” of things I want to experience in life and my husband and family work very hard to ensure we do as many of them as possible together. They’ve taken me snorkelling in the Maldives, hot-air ballooning over Cappadocia and snowmobiling in Iceland. We’ve stayed in a cave hotel, seen the pyramids, the Colosseum, and flown in a helicopter over New York. We’ve hand-fed tigers, taken the Rocky Mountaineer train, been paragliding and seen the tulip fields of Holland.
My life is most likely going to be short, so on my good days, when I’m well enough, I really live. I go out and do anything I want: for a nice meal, to the theatre, cinema or an escape room.
My illness has changed the way I prioritise things. Although I loved my career as a doctor, it often meant long hours, missing out on Christmases and birthdays, exams, stress. Giving that up is a big sacrifice, but it’s one I’m willing to make to gain more time with my loved ones. It is ironic that it took being told I was dying before I really started living.
Anything that doesn’t make my heart sing is less important to me these days. I don’t sweat the small stuff any more. Life is too short for cleaning. The laundry pile will wait. And if I want to eat a piece of cake, I damn well do.
‘Don’t waste energy fighting’
Michèle Bowley, 57, Basel-Stadt, Switzerland
After Bowley found a lump in her armpit in summer 2020, a biopsy revealed breast cancer. The disease spread to her lungs, liver and bones, and in late 2021 she was given a prognosis of three to six months.
Accept yourself and your situation. Don’t waste energy fighting. The most important things in life are other people. Pay attention to your needs and do what makes you happy. Do something creative, learn something new, get involved in something that matters to you. Enjoy your life to the last breath.
I have no regrets. I’ve always done what was important to me and have reached my full potential regardless of what others expected or thought of me. I’ve had a fulfilled life; I’m ready to go.
‘Having a sense of purpose brings joy’
Mark Edmondson, 41, Sussex, England
Mark Edmondson: ‘I’ve never been happier.’
In 2017, Edmondson was diagnosed with colon cancer. After doctors also discovered more than 30 tumours in his liver, he was given a year to live. He has since undergone more than 140 rounds of chemotherapy and over 30 operations.
Prior to getting cancer, I had ambitions of becoming a managing director or CEO; I wanted to achieve something in my career. Within hours of the diagnosis, that disappeared. I don’t care for work any more, but I believe strongly in having a sense of purpose, something to motivate and distract you, and bring joy and satisfaction. I get that from the business I started: a support service for anyone facing adversity. If someone had said, two years into my treatment, “Do you feel able to support other people through their diagnosis?”, I would have said no way. But as time has passed I do, and I’ve spoken to more than 100 people. I love coaching and mentoring. I’ve never been happier.
I lead every session with this quote and loop back to it at the end: “It’s not what happens to us, but how we react that defines who we are.” So how do you want to be defined? Cancer or no cancer, that question should dictate how you live.
I’m a big believer in being as honest and open as possible. Men are notoriously bad at sharing our feelings, but I want to change that for my boys.
We get pushed along in this world by consumerism, but it doesn’t matter what car or house we have, as long as we’re comfortable. What really matters is love, relationships, kindness, caring for people, being around people. I want to create the best relationships I can, and live the happiest life I can, because I no longer know what my timeframe is.
‘It’s not about the quantity of time I’ve got, it’s the quality’
Chris Johnson, 44, Tyne and Wear, England
In 2019, Johnson was diagnosed with a rare gastrointestinal cancer. In 2020, hundreds of small tumours found on his liver led to a prognosis of two to five years.
I’ve got limited time, so I’d rather be doing things with family and friends, and having a positive impact on the world around me. I’m not in the office wearing a shirt and tie any more. In 2021 I was running marathons, and last year I completed the National Three Peaks Challenge.
Fundraising has been the main driver but exercise also helps with the side-effects of my treatment, though as that progresses, it’s becoming harder to do long distances.
I still care about politics, the climate and my football team, but I don’t get stressed about them any more. It’s not about the quantity of time I’ve got it, it’s the quality.
People talk about beating cancer or winning. I’m never going to beat cancer, it’s not an option. At some point it will kill me. But until then, how I live my life is my version of winning.
‘Cancer sorts out what really matters’
Siobhan O’Sullivan, 49, New South Wales, Australia
After feeling unwell for two weeks, O’Sullivan was diagnosed with ovarian cancer in August 2020. It had already spread beyond her ovaries, and did not respond to chemotherapy.
I have a lot of colleagues and friends around the world, and people have mailed me gifts from every corner of the globe. An English friend flew out to see me for three days; he spent longer in the air than with me. This is the kind of generosity of spirit that people have shown me and it’s been very moving.
Cancer has been extremely effective in sorting out what really matters and what doesn’t. I was always a very busy person, and if I was meeting someone for lunch at 1pm and they strolled in at 1.20, I might have been irritated. Now I’ve realised none of that matters. I would love to have had this insight and these connections without having to go through this cancer bullshit. But I don’t think there’s a shortcut to it.
Siobhan O’Sullivan died on 17 June 2023.
‘Sharing your feelings helps’
Harry Soko, 59, Salima, Malawi
Harry Soko: ‘When I’m alone, I wonder why I got it.’
In July 2020 Soko noticed a pain in his right thigh. A year later he was diagnosed with skin cancer, which will significantly shorten his life: a 2014 study at the care centre where he is being treated found only 5% of patients with the condition live more than five years.
Normally we say, “If you are suffering from cancer, the immediate result is death.” So my family accepted it. The community accepted it. When I’m alone or sleeping, it comes to me: “Why am I suffering from cancer? How did I get it?” It takes time to accept. But if you share your feelings with others, you become free. You have no worries.
‘My illness stripped me of my fears’
Juan Reyes, 56, Texas, US
Reyes was diagnosed with ALS in 2015; he’d had symptoms for two years, and the average survival time is three. In the next six months he became a wheelchair user; he has since lost the use of his hands.
I’m very much an introvert, quiet and reserved, and afraid of public speaking. Having to live with ALS has stripped me of many of my fears. I’ve always had a very silly streak with close friends and family, and now I use that as a power, to entertain and educate through comedy.
The first time I did standup was in October 2019, at a fundraiser for ALS I’d organised at a local comedy club. I didn’t intend to do it, but as I was opening the evening, I took a chance. Afterwards I felt incredibly alive.
I also went skydiving six months after diagnosis. The first step out of the aircraft took my breath away. The rush of air was deafening, then I was suspended above the landscape. The serene silence, interrupted by the rustling of the canopy, was life-altering. I’m so glad I experienced this. I’m dying, so what is there to fear?
‘Stop worrying about having a good job or needing a big house’
Caroline Richards, 44, Bridgend, Wales
Her son was 16 months old when, in 2014, a swelling in Richards’s stomach was diagnosed as bowel cancer. She was told that, with successful chemotherapy, she would probably live for two years.
These past nine years have been really good, probably better than if I hadn’t had cancer. Different things became a priority: spending time together rather than worrying about having a good job or thinking you need a big house.
In a way I feel lucky – I could have died when my son was three or four. I feel as if I’m living on borrowed time. But he knows me. He’ll remember me.
‘Find gratitude’
Tyra Wilkinson, 50, Ontario, Canada
A family history of breast cancer meant that when Wilkinson was diagnosed with the disease in 2015, she had already made plans for a mastectomy. Seven years later, the cancer had returned and spread to her spine, making it incurable.
My husband and I had plans for when our kids were grown. We have always said we’d be the most fit grandparents, playing with our grandkids on the ground. Even if I’m alive I won’t be able to be that grandparent, because I’m just not capable of doing that stuff now.
Find the gratitude for what you have because it can always – and will always – get worse. Be grateful for all the things that are going your way right now.
‘Go to the parties. Stay out late’
Amanda Nicole Tam, 23, Quebec, Canada
Amanda Tam: ‘Don’t hold back.’
After noticing symptoms in January 2021, Tam was diagnosed with amyotrophic lateral sclerosis (ALS) that October – five days before her 21st birthday.
I wish I had gone out more with my friends. I wish I had gone to parties and stayed out late. Living life free-spirited is something I feel I missed out on, and I regret that I didn’t take advantage of that when I was younger. Life is short and you should live it how you want, regardless of what people think. Don’t hold back. Say what you want to say and do what you want to do.
‘Have a goal. Don’t accept defeat’
Mark Hughes, 62, Essex, England
More than 20 years ago, pneumonia led to the discovery of a tumour in Hughes’s lung. Surgery was successful, but the cancer had spread to his lymph nodes. In 2010, a rare form of the disease, which is now terminal, was found in his bones.
It’s about having a goal, a purpose, setting your sights somewhere. I won’t be beaten down or accept defeat. The only way is forward, and there’s always a finishing post I’m aiming for. If you get knocked down, get back up, brush yourself down and go again. That’s what keeps me going.
‘You are enough; you make a difference’
Chanel Hobbs, 53, Virginia, US
At 37, Hobbs found herself unable to run without falling; she was diagnosed with ALS and given a life expectancy of up to five years. She is now dependent on a ventilator and feeding tube.
Before my diagnosis, I was very independent. I prided myself on doing things on my own. But I’ve learned that others really want to assist, and it brings them joy knowing they can make a difference, however small.
I always used to plan every single facet of my life. I wish I had been more spontaneous and done things when they crossed my mind. For example, looking out the window and wanting to go for a walk, but doing housework instead. How I yearn for a walk today. Now I give myself grace. I have learned not to compare myself with others. Find what makes you feel meaningful. Remember: you are enough, you are human, and you make a difference.
‘No matter how you feel, get up, get dressed and get out’
Simon Penwright, 52, Buckinghamshire, England
In the early hours of 24 January 2023, Penwright was woken by an unpleasant taste and smell. Doctors discovered three brain tumours, one covering half of his brain. He was diagnosed with an aggressive form of glioblastoma and given less than 12 months to live.
It would be so easy to wake up in the morning and just lie in bed. I’m not a gym person, but when I’ve done a bit of exercise, I feel fantastic. No matter how you feel, get up, get dressed and get out.
If you’re OK one minute, then have a cardiac arrest and you’re gone the next, your options are taken away. So I guess I’m grateful that I can get organised and make the most of my relationships. I’d take this route every time.
‘I’ve stopped caring what others think’
Sukhy Bahia, 39, London, England
Sukhy Bahia: ‘I want my kids to know milestones are bullshit.’
Diagnosed with primary breast cancer in 2019, Bahia was given the all-clear by her oncologist in March 2022. Five months later, she discovered the disease had spread to her bones and her liver.
I’m a single mum. It’s heartbreaking because you think you’ll be around for your kids for a really long time. My daughter is nine and my son is six, and I’m completely transparent with them about my health. I’m hoping to leave things for when I’m not here – birthday, graduation, wedding, new home, new baby cards, and a cookbook of all their favourite recipes. I’m also planning video blogs, giving advice on things they may not be comfortable asking anyone else, like consent and puberty.
I want them to know that they never have to impress anyone or try to fit in, and that milestones are bullshit. Nothing needs to be done by a certain age or time; you can always change what you want to do in life.
I’ve stopped caring what other people think of me. From my teens, I always wanted a full sleeve tattoo. Last year I decided to start one with the birth flowers of my children, to show how much they mean to me.
My kids love them; my parents aren’t over the moon, but they accept there are worse things I could be doing with my life.
‘Never create a new regret’
Kevin Webber, 58, Surrey, England
On holiday in 2014, Webber noticed he was visiting the bathroom a lot. Soon after he was diagnosed with prostate cancer and given four years to live.
I don’t have many regrets. Maybe I wish I’d taken my kids to school more. When they grow up, you realise that meeting you had at work, you could have probably moved it back an hour.
In that moment, when you know it’s over, I don’t want to look back with any remorse. You can’t change yesterday. Never creating a new regret is an important way to live your life.
I have three missions every day. Enjoy myself, but never at the expense of someone else. Try to do some good – and that doesn’t have to be raising 10 grand for charity; it can be smiling or giving someone a seat on the bus. And make the best memories, not just for you on your deathbed, so you can lie there and go, “Oh, that was great when I did that”, but for everyone else.
‘I realised what I really wanted to do’
Sophie Umhofer, 42, Warwickshire, England
In 2018, after 10 months of tests for conditions such as IBS and Crohn’s disease, Umhofer was diagnosed with bowel cancer, which had spread to other parts of her body. She was told she could live for three more years.
Initially I felt as if I had to cram the rest of my life into the couple of years I’d been given. I’ve written birthday cards and letters for my kids until they’re 21, preparing them for me not being here.
Obviously I wish it hadn’t been cancer that caused this, but I’ve changed so many things about myself. Before my diagnosis I would get very stressed out. I had this perfectionism when my kids were young that they had to have routines. I spent so much time being worried about things I didn’t need to do. And once I became a mum, I sort of gave up what I wanted to do.
I regret that I didn’t take action for myself a bit more. But this diagnosis meant that all of a sudden, I realised what I really wanted to do. When I was going through chemo I was trying to find things I could do to keep myself entertained, and I started watching motorsport. When I got a bit better I actually entered a competition and got through to the finals. I ended up getting a job in motorsport and now work full-time looking after a team. I wish everybody could see how much better life can be if we change the way we think.
‘Leave the damn house’
Arabella Proffer, 45, Ohio, US
Arabella Proffer: ‘You never know what’s going to happen.’
In 2010, Proffer was diagnosed with myxoid sarcoma. Ten years later, the rare form of cancer was found to have spread to her spine, lungs, kidney and abdomen. Told to get her affairs in order, she now plans her life two months at a time.
A year before I was first diagnosed, my husband had joked, “Hey, why don’t we cash out our retirement and follow Motörhead and the Damned on tour through Europe?” When I got the diagnosis, I thought, “We should have done that.”
My mantra is to leave the damn house, because you never know what’s going to happen if you do. No interesting story ever started with, “I went to bed at 9pm on a Tuesday.”
‘Just buy it. Do it. Go and get it’
James Smith, 39, Hampshire, England
In 2019, Smith noticed a twitch, then a weakness in his left arm. Two years later he was diagnosed with motor neurone disease (MND).
When I was told I’ve probably got only a few years to live, my wife was pregnant with our youngest. In the back of your mind you’re thinking, “Am I going to see them get married? Have kids?”
I did turn to alcohol, but it wasn’t doing me any favours; I was using it to block out what I didn’t want to think about, so I nipped it in the bud. Now I’ve come to terms with what I’ve got and I just take every day as it comes. I focus on what I can do, not what I can’t do. I had to give up my career as a barber, but I’ve found a new passion in creating my podcast, which shares my story and those of others to raise awareness of MND. Talking to others and relating to people going through the same situations as me is like therapy.
It’s horrible to say it takes a terminal illness to actually live life, but when I hear people going, “I’d love to do that”, I realise getting diagnosed has put a different perspective on life. I used to think, “I won’t buy that because I don’t know what’s around the corner.” Now it’s just buy it, just do it. If you want something and can afford it, go and get it. If you want to do something and you’ve got the means, go and do it.
‘I soon realised what I liked about life’
Ali Travis, 34, London, England
At 32, Travis began experiencing severe headaches. After an MRI revealed a mass the size of an orange on his brain, he was told he had a glioblastoma and his life expectancy was 12 to 14 months.
Last year was the best year I’ve had because in a very, very short space of time, I realised what I liked about life. It’s the closeness of relationships, old friendships. And, for me, being a geek.
If I’d been hit by a bus, I’d have been a stressed guy with a load of problems who couldn’t see past the end of his nose. So, despite all the surgeries, the constant chemotherapy, the radiotherapy, I would choose this route.
‘Look after yourself first’
Sonja Crosby, 55, Ontario, Canada
Sonja Crosby: ‘Cancer focused me.’
In 2012, doctors discovered a tumour on Crosby’s left kidney. She was diagnosed with a rare form of cancer, and most organs were removed from her left side. In 2017 she was given six months to live.
Cancer focused me more precisely than anything else I can think of. When my doctor told me I had a few months left, I said, “Can we put that off another six months? I have this big project at work I want to finish.” He said, “No, you have to be your priority now, not work.”
You can’t manage all aspects of your life. I’ve realised it’s not selfish to look after yourself first, that your friends and family will do a lot more if they know you’re open to receiving help.
‘My favourite saying is: it is what it is’
Rob Jones, 69, Merseyside, England
In October 2012, Jones was told he had bowel cancerthat had spread to his liver. He had 27 rounds of chemotherapy.
I’m not a bucket list person; I don’t go through life saying, “I wish I’d done that.” My wife says I’m one of the worst people in the world to buy anything for, because if I want it, I get it. It’s the same in life, if we can afford it. But I’ve never had dreams of doing a world cruise or a flight to America. I’m a home bird really.
I read once that cancer victims are lucky in life, because they generally have a timeframe of when they’re going to die. They can put their life in order, say goodbye to loved ones, ignore all the people they’ve tolerated to be polite. Whereas people who have a massive heart attack and die on the spot, they don’t have that opportunity. I sort of get that now. But I’m not allowed to talk as if the end of the world is nigh, because everybody thinks I’m invincible. Of course, none of us are.
My favourite saying is: it is what it is. If we had the choice, we’d all live a long, happy life. But when would we choose to die? There isn’t a convenient time.
Rob Jones died on 28 July 2023.
‘What’s the point of earning, earning, earning, if there’s no joy in your life?’
Jules Fielder, 39, East Sussex, England
In November 2021, Fielder was diagnosed with double lung cancer, then shortly after told the disease had spread to her spine and both sides of her pelvis.
You get caught up in that world of work: pay your bills, eat dinner, sleep, repeat. But now I truly feel very different about money. What’s the point of earning, earning, earning if there’s no joy in your life? When I watch really power-driven people who want more and more, I want to tell them it’s the small things in life that are beautiful. We live in quite a toxic world, but it’s your choice what you expose yourself to. Iget up, I walk my dog, I listen to every single bird that chirps. I’m grateful for that.
‘Be authentically you’
Mike Sumner, 40, Yorkshire, England
Mike Sumner: ‘There are always positives.’
While on TV show First Dates in March 2020, Sumner noticed a loss of movement in his foot. Eight months later he was diagnosed with motor neurone disease. He has since married his date, Zoe.
I don’t waste time now. Life is too short to be doing any shit you don’t want to. Concentrate on making the memories you want and never say no, never make excuses. Do things you’ve always wanted to do. We went to Los Angeles to see the Back to the Future set at Universal Studios. I’ve been meaning to go for years. It was our little pilgrimage.
In the short term I keep positive by thinking about weekends, because we often go away and do something fun – next weekend we are going to a classic car show. In the longer term, I look forward to our next holiday – we always go to Orlando. When I feel the warm air on my skin, and hear the crickets of an evening, it lifts me emotionally.
Day-to-day I look forward to Zoe coming home from work so I can give her a cuddle. I look at my model car collection and think about the happy memories I have of driving. When I feel a bit low, I treat myself to something nice to eat – pizza, a burger or a battered haddock – while I can still enjoy food.
You have to be authentically you. But try not to moan because there’s always someone worse off than you. Focus on the positives; there are always some. For example, I’m married to Zoe.
‘Keep things simple’
Alec Steele, 82, Angus, Scotland
In 2020, while in hospital for a routine checkup, Steele collapsed. Tests revealed idiopathic pulmonary fibrosis – which causes scarring on the lungs and leads to difficulty breathing – and he was given a prognosis of one to five years. He now requires a 24-hour oxygen supply.
The first six months after diagnosis were dreadful. I was trying to get all my affairs in order, and I told my medical team I was determined to have one last game of cricket. The physiotherapist and I worked as hard as we could, and in late April 2021 I got my game, wicketkeeping with oxygen strapped to my back. A photographer took a photo and put it on the internet. It is now displayed at the Oval, next to Ben Stokes’s photo. Last year I had 16 games, which has just been wonderful.
I’ve realised I have to keep things as simple as possible. I soon learned that negative thoughts were destructive and I trained my mind to work out those you can do something about and those you can’t. If it’s the latter, discard them. If you can do something, work out what and get started to tackle the problem.
‘Switch every negative to a positive’
Kate Enell, 31, Merseyside, England
In July 2021, less than a month after finding a lump in her breast, Enell, then 28, was diagnosed with stage four breast cancer. It had spread to her liver and bones, and has since moved to her brain.
For two days after being diagnosed I locked myself in the bedroom; I didn’t see or speak to anyone. But on the third day I thought, “Wait – if I’ve only got a short timescale, do I really want my little boy to see me miserable?” Now I just try to do as much as I can while I’m here. I’m quite good at switching my brain now. Say I get upset about not being able to have more children, I switch it round and think, “Well, I am a mum.” Whenever there’s a negative, I try to switch it and keep positive.
I feel like I’ve had some of my best times in the first few years of my diagnosis, because it makes you home in on what’s important. Everybody around me has made more of an effort, we’ve done lots of family events. It’s made us realise that what’s important is spending quality time together.
‘Success, status, reputation – they are not important’
Ian Flatt, 58, Yorkshire, England
Ian Flatt: ‘What’s important is to find joy every day.’
Flatt had always led a very active life, but in April 2018 he began struggling with severe fatigue. By the following March he had been diagnosed with MND and he has since lost the use of his legs.
I can categorically say that the things I valued and felt were important are not important. Success, status, reputation – they pay the mortgage, but I think I lost myself a little bit in all that. I’m much more emotional and empathic now. I’ve always been a reasonably popular guy, I have friends that go back 30-odd years, but I’ve never had the depth of friendship that I have now. Or maybe I had it and didn’t appreciate it.
What’s important now, every day, is to find some joy. I look out at the birds, the trees – I’ve a favourite one I can see out of my bedroom window. Through being a bit reckless, I lost the use of my legs sooner than I would have. I remember accepting that and thinking, “OK, I’m not going to walk, so let’s go out in the tangerine dream machine [his off-road wheelchair].” We went out, had a pint of Guinness, and now my memory of that day is a joyful one.
‘Your energy is valuable’
Daniel Nicewonger, 55, Pennsylvania, US
In May 2016, after he started struggling to take a full breath, Nicewonger was told he had colon cancerthat had spread to his liver. The prognosis was two years.
It took this to clarify what’s really important. You get very good at saying, “No, I choose not to invest energy and time in this, because my energy and my time is just that much more valuable.” If I could have understood that at 30, I’d have moved through life in a totally different way. But that’s unrealistic. Wisdom is wasted on the young.
‘Don’t mess around. Be direct’
Angus Pratt, 65, British Columbia, Canada
Angus Pratt: ‘I discovered self-confidence.’
A lump on Pratt’s chest in 2018 led to the discovery of breast and lung cancer. He was given a 5% chance of living to 2023.
I had my diagnosis in May, my wife was diagnosed with pancreatic cancer at the start of October, and by the middle of November she was dead. I had to ask myself the big question: am I leaving behind what I want to leave behind?
I’ve taken on writing assignments, helping scientists translate research into patient-friendly language. Recently I was asked to contribute a painting to an auction, and I was surprised people would pay for my art. One of my joys is a local poetry group that meets in the park. Sometimes we have an open mic. I guess I’m trying to say I’m a poet, too.
I’ve discovered self-confidence. I really don’t care what people think about me any more; it’s not important because I’m going to die. I don’t have time to mess around, so I’m going to be direct. That’s stood me in good stead.
‘I should have trusted myself more’
Henriette van den Broek, 63, Gelderland, the Netherlands
When Van den Brook was diagnosed with breast cancer in 2008, the disease had already spread to her lymph nodes. She was well for a number of years, but in 2020 she discovered that the cancer had spread to her stomach and was terminal.
Every day when I work as a nurse, it feels like a party for me. I realise how meaningful I can still be to other sick people. I enjoy the little things more, dare to have the difficult conversations.
It’s a pity I’m only finding that out now. I feel like I need to catch up on this in a hurry and get the most out of life. I’m discovering the things I’m good at, but I’d have liked to discover them sooner. I should have trusted myself a lot more and been less insecure. I only have the guts now.
‘Treat every smile like it’s your last’
Ricky Marques, 42, St Helier, Jersey
In summer 2022, Marques began to lose weight. In November, a CT scan led to a diagnosis of lung cancer. The disease, which has spread to his bones and lymph nodes, was so advanced that he was given a prognosis of weeks or months.
When I was younger I had a son, and when he was eight, he died in a car accident. My life collapsed and I thought, “How am I going to recover?” When I was diagnosed with terminal cancer I thought, “What else am I going to get? Didn’t I already have my share of bad luck? Don’t I deserve to live?”
The lesson I’ve learned is every time someone smiles at you – a little touch, a little gesture – look at it like it’s the last one because, guess what? Maybe it is.
At the end of every year in the past, I anxiously waited to crack open my new daily planner for the coming new year so I could jot down resolutions. I like a clean slate.
Every year those resolutions tumbled to the bottom of my to-list before I’d finished humming “Auld Lang Syne.” Things like, be more disciplined/stop procrastinating, tackle my TBR stack/try a digital sabbatical, and cut out sugar/lose ten pounds/no more than one dessert a day, topped the list year after year.
This year, I’m Googling phrases like “Is an advance directive the same as a living will?” “Where is assisted suicide legal?” “What drugs are used in assisted suicides?” When I type the last question into Google, the first thing that comes up is the number “988” and encouragement for me to reach out for support.
My arm felt heavy, the muscles rippled beneath the skin and my finger strokes on the keyboard weren’t landing as efficiently as they once had.
I don’t have a solid diagnosis yet. Instead, I have a plethora of odds and ends symptoms, disorders, dysregulation, immunodeficiencies and viruses after I contracted a nasty respiratory illness that lasted for seven weeks at the end of 2019 after a return trip to the Midwest to visit family for the holidays.
The Downward Spiral
The downward spiral started with an episode of super ventricular tachycardia a week or so after I was “on the mend.” My resting heart rate hit 150 plus beats per minute which began a series of trips to the local emergency room, tests and procedures. That illness triggered a marked decline of my health and was likely the beginning of this chosen end that I’m facing now.
But then, last March, three years after that first trip to the ER, I noticed weakness in my right forearm while I was working from home one afternoon. My arm felt heavy, the muscles rippled beneath the skin and my finger strokes on the keyboard weren’t landing as efficiently as they once had. Words were missing letters…Knoledge. Languge. Mariage. Muscles spasmed.
The next few months brought resting tremors, and trouble swallowing. My speech became sluggish in the evenings when I was most fatigued. I started to struggle with short-term memory, mixed up words in conversation, and it felt like words I used frequently had been stowed on shelves in my brain and I could no longer reach them.
I’m doing things like leaving the kitchen with the faucet running, burners on, and recently, I put a container of yogurt in the drawer with my Pyrex lids.
‘Maybe ALS’
In August, my rheumatologist referred me to a neurologist — my life inundated with ologists. Immunologist. Gastroenterologist. Rheumatologist. Neurologist. He suspected that rather than an autoimmune disease, a neuromuscular disorder was the root cause of many of my symptoms including the weakness, tremors and autonomic dysregulation which caused functions like heart rate, blood pressure and temperature to become unpredictable, and sometimes dangerous.
Now, after most physical exertions, like taking a mildly warm shower, my body temperature spikes to 102-104 degrees, my heart races to 130-150 plus beats per minute.
“Maybe ALS,” the rheumatologist said. Amyotrophic Lateral Sclerosis. A terminal diagnosis.
Thus far, ALS can’t be ruled out with certainty as a diagnosis, but it also hasn’t been confidently diagnosed at this point in the MRIs, EMGs and blood draws. I’m being referred to another neurologist for further evaluation. According to the ALS Therapy Development Institute, some patients initially receive a “suspected, possible, probable, or definite ALS” diagnosis as other disorders and diseases are ruled out.
I think in terms of quality of life, and regardless of which of those diagnoses the doctors land on, my decision to end my physical, cognitive and emotional suffering remains the same.
On paper, ALS is the worst-case scenario in terms of outcome with a life expectancy of two to five years depending on the progression of each individual patient. Best-case scenario, this myriad of symptoms, this failure of my fifty-two-year-old body, is that my faulty, gone-rogue immune system that has already attacked my other organs — lungs, liver and spleen — has started its assault on my brain causing inflammation and/or deterioration.
A Decision Made
This brain that I’ve filled with ten years of study in higher education, ideas for essays, books yet to be written, language, memories of my children, their children, my parents when we were all much younger — has been damaged. There is no way to know if there’s any hope of recovering what’s been lost. But now, I think in terms of quality of life, and regardless of which of those diagnoses the doctors land on, my decision to end my physical, cognitive and emotional suffering remains the same.
I haven’t officially told my family, many of those relationships are estranged/strained, and, even as a child, I oft communicated in writing. As a child, I asked my mother if she was mad at me on lined steno pages left on the kitchen table, asked her to check yes or no.
I’ve written letter after letter to my husband throughout our nearly-twenty-year marriage — in the beginning, letters of love and wanting, more recently, letters of request and reflection. I’m sorry you ended up with a sick wife.
I have expressed my frustration and fatigue with being sick for so long to some members of my family, said things like “This isn’t sustainable,” or “I’m not sure how much longer I can do this.” But they are of the mindset that I need to get out more, that I can somehow right the ship of my sick and fledgling body with positivity. Even my husband has talked to me about the power of “mind over matter.” Those are all different conversations.
On my worst days, I’m frequently utilizing my newly-purchased rollator after being humbled by several trips and a few falls.
Now, I have to try to take a short walk or do some sort of activity after every meal to help my stomach empty itself of its contents, lest the gastroparesis cause the food to stagnate and form a solid mass in my gut. On my worst days, I’m frequently utilizing my newly-purchased rollator after being humbled by several trips and a few falls. Some days, I struggle to feed myself and swallow food and drink, regardless of consistency.
While my brain and my body continue to weaken, I think about the trivial, everyday things like not being able to make and pour my own coffee, think about how my hands are no longer strong enough to hold one of my beloved coffee mugs that I’ve collected over the years from my children or from pottery-making friends.
I can no longer stand in the kitchen for extended periods while I make doughs and roll them into glazed and streusel-ed pastries or stir a pan of homemade hot fudge that I gift to friends and neighbors. I worry that my arms won’t hold my new granddaughter expected in the spring.
Leaning Into End-of-Life Plans
On a grander, more humiliating scale, I’ve wet myself more than once trying to maneuver my faltering, quivering body out of bed in the morning. As my speech slurs with fatigue and my word recall is failing, I think about the joy I’ve always found in oral communication — it’s how I connect with the world around me. I’m a storyteller, a teacher, a talker. The idea of losing these things that make me me is unbearable, as it is for anyone diagnosed with a debilitating and potentially terminal disease.
See a meteor shower. I checked this one off the list.
I am leaning into these end-of-life plans, engaging both the creative and Type A aspects of who I am. I am taking online art classes, learning to sketch, to paint, trying to teach myself to knit while simultaneously writing my care plan, getting my “final wishes” down on paper. “Final Wishes” is such an odd statement. I imagine genies seduced from bottles and how you can’t “put the genie back” once it’s freed and am reminded of the permanence of my decision.
Making Lists
I don’t like the term “bucket list,” but I’ve been making one —well, part bucket list, part to-do list. In my mind, I’ve divided this into three parts: places to see/go, things to do, things to no longer do. The list has things like:
Places to see/go:
1. See the northern lights in Maine, hike while I’m there.
2. See fall foliage somewhere in the northeast. One more time.
3. Visit another country. I’ve settled on Algonquin Park in Canada’s Ontario province. Stargaze, see the northern lights from there too.
Things to do:
1. Go camping. Sleep connected to the earth.
2. See a meteor shower. I checked this one off the list.
3. Plant a garden.
4. Collect and compile recipes for my kids, make care packages for each one with sentimental items.
5. Finish/sell my book.
6. Write letters to loved ones. See loved ones.
Things to no longer do:
1. No more offering myself up to those who aren’t interested in genuine loving/considerate relationships.
2. No more hating myself for the past. I want to love the life I lived, flawed as it was in many ways.
3. No more finishing books that I don’t like.
It’s been four years now, counting that lengthy viral illness. I’m tired. I reached the decision to end my suffering after much thought and consideration. I don’t know exactly when, but I’m close to settling on an assisted end-of-life plan.
But now, instead of wondering how my disease/s and decompensation will progress, worrying about the logistics of needing a greater level of care, I’m thinking more about living for the first time in…well, at least four years, maybe more. I’m seeking joy, love and kindness and looking for everyday opportunities to pour those things back out into the world around me.
Some days, I’m successful and other days, I’m not. I’m not a gracious sick person. But in all of this, I’m grateful that in planning for my death, I’ve finally learned what’s important to me…finally learned how to live.
I wrote half of last month’s column in an airport, trying to get to my grandmother before it was too late. Neither of us made it; she was gone before I even boarded. When I was done ugly crying – on the phone to my cousin as he broke the news, then again in front of the alarmed workers of the airport Costa – I wanted to metaphorically tear up everything I’d written and start on this instead, even if I didn’t have a clear idea of what this was yet, beyond something about rosemary’s tie to memory and a roast lamb no one would ever make for me again.
But it was the Winter Solstice coming up, and my first entry in a column on the place where food and magic intersect; and, crucially, it was too close to that moment of raw grief to pull it together into something coherent, something worthwhile. So I finished that piece on tea and mead and spices and the interwoven debts that we owe each other, and I’m bringing this to you now instead.
Rosemary is the herb of memory. I miss my grandmother.
When dealing with traditional herbal correspondences it can be hard to separate the magical from the mundane. Partly because our ancestors didn’t make that distinction themselves, seeing magic, faith, and physical medicine as part of a single whole in a world entirely imbued with the sacred. But also because, as traditional herbcraft has faded out of practice, attributions which were once meant to be understood literally can seem like metaphor or mysticism, only to then surprise us when we rediscover their physical nature. Rosemary, and the impact it has on memory, is one such example.
When Ophelia includes the herb in her list of accusatory flowers, it’s easy to assume her famous quote, “rosemary, that’s for remembrance” is as metaphorical as the rest. But rosemary has long been a herb associated with funerary rites, with death, and with remembrance of the departed, traditionally being placed on the biers of the dead. Its strong smell, which lingers in the room like a memory, would have helped to cover the beginnings of decay, as well as indelibly tying itself to that moment of grief and loss in the mourner’s neurology. Scent is one of the key triggers of memory, even with substances that don’t specifically effect cognition – how much more powerful rosemary’s impact then, with the discovery that it does.
Rosemary has other folkloric ties to memory outside of the funeral parlour – with Ancient Greek students supposedly using it as a study aid, and Sir Thomas Moore declaring the herb sacred to friendship because it provokes remembrance of the living, not just the dead.
As modern medical research examines herblore to see if there are effective treatments that have been overlooked, or that can be made effective with modern scientific techniques, rosemary has had its turn in the laboratory. Studies indicate that ingesting rosemary enhances recall speed as well as improves episodic and working memory, and may even have a positive impact on Alzheimers, though more research needs to be done to understand why.
Even inhaling the scent of rosemary seems beneficial, though the impact is smaller, and works best if the subject is exposed to the scent both during the learning process and then again when asked to recall things later on – scent as a memory trigger, enhanced by the effects of rosemary’s unique chemical composition on the brain.
A bouquet of herbs, including rosemary, in a bowl
This puts us in a position where rosemary is uniquely suited to remember and honour the beloved dead. Symbolically linked to the dead through religious rites and burial practices, tied to love and the transition from one life stage to another (it is worn at weddings as well as funerals), rosemary also helps us to remember in a literal, physical way. Eaten regularly, it may help preserve the memories of those departed, as well as prompting us to remember meals shared or time spent cooking together when the familiar scents reach us and work their neurological magic.
To combine the spiritual with the physical is a very powerful thing, grounding us in both realms at once, and binding them together in us. That which is gone is never really gone.
Garlic and Rosemary Lamb
Growing up, my grandmother was the only person who could cook a roast lamb I actually enjoyed eating. I don’t know how she did it, and she was a cooking by instinct sort of person so there are no recipes left behind. I still don’t eat lamb that much, though it’s appeared more often in my house since I married a New Zealander, but I knew it was exactly what I wanted to make for this column, and my grandmother. I hope you like it.
Lamb with rosemary and peppers
Lamb shoulder (900g)
Fresh rosemary (2 – 3 tablespoons, chopped)
3 bulbs of garlic
500g baby potatoes
125 ml red wine
Olive oil
Salt and pepper
Flour
Start by setting the oven to pre-heat at 240 C (220 C fan, ~450 F). While that’s heating up, mix four tablespoons of olive oil with eight cloves of crushed garlic, the rosemary, and the salt and pepper. When thoroughly mixed rub it all over the lamb shoulder. Halve the remaining garlic bulbs and place them with the potatoes in a roasting tray, drizzle with olive oil, crack salt and pepper over them, and then place the lamb on top. Finally, pour the wine over it all and cover with a tinfoil tent before placing it into the oven.
Let the lamb roast for fifty minutes and then remove the tinfoil for the final ten minutes to let it crisp up nicely. Once it’s done let the lamb rest for fifteen minutes. While the meat is resting, remove the garlic and potatoes from the tray so you can turn the drippings into a gravy by whisking in flour over a low heat until it reaches your preferred consistency.
Gavin Blomeley was lucky his mother was incredibly organised before she died. She left a note that included the passcode to her phone and access to all her online passwords.
“I can’t even begin to imagine how difficult this could have gotten not having these passwords or knowing this note with all of her passwords existed,” Blomeley says.
“In the note, my mum had an alphabetised, formula-based logic to all her passwords including banking, pensions, social media – everything.”
Untangling the web of someone’s online life after they die creates additional stress on top of grief and funeral planning, and it is getting increasingly complicated as more and more daily tasks are carried out online. There are bank accounts, email accounts, online bills and streaming subscriptions, as well as various social media accounts to consider.
There is no one-stop-shop or single method to memorialise or delete accounts. Some companies, including Google, are now deleting accounts after two years of inactivity but there is no consistency across platforms.
“Facebook, in some ways, is probably actually pretty progressive and a leader in this space,” says Bjorn Nansen, a digital media researcher in the “death tech” team at the University of Melbourne.
“Over time, they’ve developed their policies; you can nominate a legacy contact, so that when you pass away that person … can follow your wishes, and either close your account or memorialise it.”
Nansen says other platforms don’t have the same policy.
“You just have to follow the same old workarounds, which is, you leave your passwords to somebody and your wishes as to what you want to be done with the accounts and content. Often, you’re breaching the terms of service.”
He says it is getting more complicated with the advent of two-factor authentication using biometrics to ensure that only the account holder can access the account.
Nansen says online companies should make the process easier but increasingly people are including directives in their will and this is likely to increase over time as baby boomers die.
“We’re entering a period that’s been referred to as ‘peak death’. The baby boomer bubble means there’s going to be a high volume of deaths and it’s always going to be the next generation that’s going to have to deal with it … it will make awareness of the issue wider and may help bring around change.”
Standards Australia says about 60% of Australian adults have made a will but not all of those have accounted for their digital legacy.
The nongovernment standards body is part of a group of organisations from 35 countries proposing core principles and guidelines for how organisations should manage the process when a relative or executor requests access to an account of someone who has died.
Adam Stingemore, general manager of engagement and communications at Standards Australia, says that means developing a common set of definitions that companies can then build into terms of service.
“The worst time to be dealing with a challenge like this is if you know someone in your family has died, and there’s a feud between parties,” he says. “What we want to do is get ahead of that on these different types of platforms. There’s common sets of questions and people can make choices about what happens to their data and assets.”
Nansen says another factor is the privacy of the person who has died, and whether they want personal messages and content to be seen by family members or deleted.
“There’s complexity and nuance,” he says. “You might have emails, you might have messages, you might have photos, you might have videos that for a whole range of reasons you might want deleted or not want certain people to see.
“If you really want to be thorough, it’s not just providing access and instructions to a digital executor; it might be quite detailed instructions about different platforms and different content.”
Blomeley says his best advice is to ensure power of attorney is arranged beforehand, and access to accounts included as part of a regulated will.<
He says the process of shutting down his mother’s accounts was time-consuming, despite having all the passwords. It took several weeks to sort out, through the grief of losing his mother.
“Thankfully, we were all in a position where we were able to take time off work … but I can imagine this being much more complicated for certain individuals, based on varying circumstances.”
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Last summer, my 88-year-old mother was diagnosed with late-stage colon cancer and opted for in-home hospice. She died three months later.
Talking about death can be difficult. It can bring up feelings of fear, anxiety, and sorrow. It can also feel awkward as it requires acknowledging one’s own (or a loved one’s) mortality. In some cultures, death is openly accepted and celebrated (think of Mexico’s lively, colorful, loving Day of the Dead ceremonies, which include costumes, parades, and feasts), but in others the topic is ignored and avoided.
However, there are many benefits of having an open and honest discussion about our eventual death with those who love and care for us. It can offer solace to grieving families to know what a family member most desires. When a person is nearing the end of life, family may be under enormous stress. Letting those who love and care for you know about end-of-life decisions ensures your wishes are known and respected, eases the burden on loved ones, and helps prevent the kinds of in-fighting that sometimes surface. Additionally, to talk openly about such things can be a profoundly intimate act.
I was lucky that my parents spoke openly about death. Years before my mother’s diagnosis, she asked me to be her healthcare proxy. After signing paperwork to that effect, we met with her primary care doctor, working through our questions and concerns together.
Around the same time, when Mom was still perfectly well, she showed me what she called her death file, which contained paperwork she felt I’d need later, including information about the family tomb in New Orleans, people she wanted notified upon her death, insurance information, and more. Over the years, we added papers that we thought might be helpful (a copy of her birth certificate, a notarized letter reiterating her wish to donate her organs, etc.).
Because we had been so open with one another, when Mom chose hospice at the end of her life, I asked her a question that some might find unusual. “Mom,” I said, “would you like to help me write your obituary?” She very much wanted to. I wrote a rough draft, which she marked up in pencil from her bed. We worked until she felt it was right; then she chose the photo she wanted to accompany it. Reviewing her life and legacy together in this way is one of my most cherished memories.
One afternoon just a few days before she died, she asked the hospice nurse, “Why is it so painful for me to swallow?” The nurse told her something perfectly reasonable, but for some reason, Mom asked again. I leaned over where she lay in her hospital bed and said, “Mom, you’re having difficulty swallowing because you’re dying.” The hospice nurse looked shocked at my directness, but Mom clutched my hand and said, “Oh, honey, that’s very reassuring.” Because I had listened to her over the years, I knew that she did not want to be spoken to like a child, and that she longed for direct, open talk.
If I were to offer advice about how to begin such conversations, I would suggest listening with a nonjudgmental heart. If a loved one brings up the subject of their own aging or death, try to just listen. Ask about their wishes and thoughts rather than immediately offering opinions. Being a good, loving listener without judgment allows the people we love to explore and develop their own personal philosophy around end-of-life issues.
Our culture has many taboos around illness, aging, and death, and we are directed in may ways to never speak about it. As my mother demonstrated, though, death can be approached with kindness and pragmatism. Like the proverbial “monster under the bed,” avoiding the topic altogether only increases people’s anxiety.
I’ve taught Death Studies classes, and while every family and situation is unique, my college students almost uniformly wished they could talk about such things more openly with their families, but they didn’t know how to bring up the subject. The Conversation Project — a nonprofit dedicated to helping people talk about their wishes for end-of-life care — created a free guide to help get the conversation started (theconversationproject.org/get-started). And there are many other resources available — books, videos, and podcasts — that can be a huge help.
I have found enduring comfort from the certainty that I was able to help my mother have the death she wanted, at home, pain-free, watching the birds from her bedroom window. It was a gift from her to leave me with no lingering regrets. I suspect it will comfort me for the rest of my life, and I wish for this level of intimacy and comfort for all families.
