Month: May 2016

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Dying traditions, and new life, in the funeral industry

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Vice president Arthur DeFilippo prepared a headstone at Woodlawn Memorials in Everett, a family-run business where sales have been declining for a decade.
Vice president Arthur DeFilippo prepared a headstone at Woodlawn Memorials in Everett, a family-run business where sales have been declining for a decade.

Death is inevitable, but, increasingly, traditional burials are not.

From diamonds made from cremated remains to eco-friendly interments, the $20 billion funeral industry is being reshaped, creating opportunities for the entrepreneurially minded — and financial hardship for those with business models more set in stone.

Consider:

At Rockland Golf Course a few years ago, a kayaker paddled to the middle of a pond with the cremated remains of a golfer who had hit many an errant ball into the water. As the rower released the biodegradable container and the ashes dispersed, a bagpiper played “Amazing Grace” and 75 members of the man’s golf league chipped shots into the water.

A Great Barrington woman wrapped her mother’s body in a cotton sheet and laid her in a cardboard coffin lined with dry ice. The family then held a three-day vigil at her home dance studio, inviting people to play music and see and touch her face for the last time.

In Woburn, a carpenter with a degenerative brain condition is set to be buried in a suit embedded with mushrooms, which will neutralize the toxins in his body as it decomposes into the earth.

In Seattle, plans are underway for a facility to turn corpses into compost; in Italy, a pair of designers is working on a biodegradable burial seed pod that will allow a person’s decaying body to provide nutrients for a tree planted on top of it.

But the number of alternatives to caskets and cemeteries is making life tough for undertakers and monument makers.

At Woodlawn Monuments Inc. in Everett, sales have been in a “freefall” over the past 10 years, said co-owner David DeFilippo. His family has been making tombstones since his great-grandfather opened a shop in 1907, but DeFilippo, 50, said the company – which also employs his mother, aunt, and uncle — is likely to end with him.

“People always say to me, ‘You’re set, people are always going to die,’” said Jeff Hardy, of the Chelmsford burial vault company Hardy Doric Inc. “Well yeah, it’s what happens to them after that keeps changing.”

Death rates are rising as America’s population ages, but with some estimating that cremations surpassed burials for the first time last year, and other cheaper alternatives becoming more popular, profits are being tamped down.

Lewis Funeral Home on Nantucket closed its doors in 2013 after 135 years in business, citing the rise in cremation as a cause. Families who opt for cremation spend 42 cents on the dollar compared with those who have traditional burials, said Teresa Gyulafia, strategic communications director at Batesville, a funeral product manufacturer in Batesville, Ind. — “a big economic burden to the industry.”

Interest in cremations has risen swiftly in recent years, particularly among the growing ranks of the nonreligious. In the 1960s, less than 5 percent of deaths resulted in cremations, according to the Cremation Association of North America. But after the Catholic Church lifted the ban on cremations in 1963 and started allowing cremated remains at funeral Masses in 1997, the practice has become more common. In Maine, which has one of the country’s highest cremation rates, 73 percent of deaths resulted in cremations last year. In Massachusetts, it was 45 percent.

By 2030, the national cremation rate is expected to be 71 percent.

The movement toward cremation and natural burials harkens back to the way things used to be done. Cremation was big during the Roman Empire, before the practice became associated with pagan rituals. Embalming arose during the Civil War as a way to preserve the bodies of fallen soldiers being shipped home from the battlefield.

In response to a shifting market, traditional funeral providers are branching out, offering more custom products and personalized service. To counter a drop in domestic sales, Dodge Co. in Billerica, the world’s largest supplier of embalming fluid, has been selling more sports-themed urns and video tributes. New England Casket Co. in East Boston, founded by an Italian cabinet maker in the 1930s and now run his grandson, makes a casket with a camouflage lining and a rifle holder, among other unique offerings, and has started making more oversized caskets for an increasingly larger clientele.

At Magoun-Biggins Funeral Home in Rockland, owner Bob Biggins offers concierge services: making arrangements with caterers, helping plan dinners at country clubs, and arranging bereavement rates at hotels for out-of-town guests.

Biggins coordinated the golf course memorial. He also put together a funeral procession for an ice cream man led by his iconic truck, complete with popsicles for guests at the grave site, and had a body shop paint a casket to look like a school bus for a local driver.

“You have to adapt to meet what your clients’ needs are,” Biggins said, “and it’s not the old-fashioned cookie-cutter funeral.”

As death becomes less of a taboo topic — at “death cafes” the end of life is discussed over tea and cake — people are also increasingly looking for unique ways to memorialize the dead. Off the coast of Florida, a manmade reef serves as an underwater mausoleum for cremated remains. The Daytona International Speedway considered creating a place to house urns, known as a columbarium, to accommodate NASCAR fans who had been scattering ashes inside the track.

The burgeoning natural burial movement is also changing the industry. The Green Burial Council, which certifies environmentally friendly providers, started with a single funeral home in New Mexico in 2006; today, there are more than 300.

When Mount Auburn Cemetery in Cambridge held a workshop on green burials two years ago, on a sunny Saturday in June, 150 people showed up. “It was the first beach day of the summer, and all these people came to hear about death and disposition,” said Candace Currie, director of planning and cemetery development.

Mount Auburn has sold about half of its 50 natural grave sites in the past two years, and the nonprofit Green Burial Massachusetts Inc. is working to establish the first all-natural cemetery in the state. Mourning Dove Studio in Arlington has seen a sharp uptick in demand this year forbiodegradable caskets made of recycled paper, woven banana leaves, cardboard, and pine.

The process of alkaline hydrolysis, in which bodies are dissolved in a lye-like solution with the help of heat and pressure — seen as a more environmentally friendly alternative to cremation — is legal in a handful of states, including Maine and Vermont.

Some question the movement toward scattered ashes and unmarked graves as too ephemeral.

“How are we going to record our existence?” said Jacquelyn Taylor, a former professor of funeral service education at Mount Ida College in Newton who works as a data analyst for the Dodge Co.

But just because people want a natural burial doesn’t mean they don’t want a place to be remembered.

Dennis White, the Woburn carpenter with a degenerative brain disease, will be the first person to be buried in a Coeio mushroom suit. White, 64, liked the idea of returning his body’s energy to the earth, free of toxins, but wanted a plaque to mark his final resting spot. In Limington, Maine, he and his wife found a cemetery that would let them do both.

Ann-Elizabeth Barnes, the Western Massachusetts woman who held a home funeral for her mother and helps others do the same, said the experience helped bring her closure.

“The first day she looked like herself. She had a little smile on her face. She looked quite peaceful,” she said. “The next day she was just a little bit caved in. The next day she was definitely a cadaver.”

At that point, Barnes knew, “It’s time, she’s gone, we can really say goodbye.”

Complete Article HERE!

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Here are 5 things you may regret at the end of your life, from a nurse who works with dying people

If you had a crystal ball to see what you’d regret as you were dying, would you make changes now?

By Angie Aker

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You might think watching people die would depress a person. It actually taught her how to live.

Bronnie Ware spent years as a palliative care nurse, helping patients be as comfortable as possible in the time just before their deaths. She compiled their stories and the most repeated regrets she heard them utter in their final days.

Do you ever imagine what the final years and months and days of your life will be like?

Shared originally on her blog, ” Inspiration and Chai,” here are the top five regrets, with quotes from her blog as she recorded them.

Regret #1: I wish I’d had the courage to live a life true to myself, not the life others expected of me.

Look at yourself in the mirror. Are you living your best life right now? What’s stopping you?

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“This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made. Health brings a freedom very few realise, until they no longer have it.” — Bronnie Ware

Regret #2: I wish I hadn’t worked so hard.

This one speaks for itself.

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Regret #3: I wish I’d had the courage to express my feelings.

What if getting the words out is essential to your growth as a human?

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“Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming.” — Bronnie Ware

Regret #4: I wish I had stayed in touch with my friends.

Is there someone you treasure who you haven’t spoken with in much too long?

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“Everyone misses their friends when they are dying.” — Bronnie Ware

Regret #5: I wish that I had let myself be happier.

If you didn’t wake up joyful today, why not? What can you do to change that?

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“This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called ‘comfort’ of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content, when deep within, they longed to laugh properly and have silliness in their life again.” — Bronnie Ware

Were there any regrets on this list that felt familiar to you? Others that you didn’t see listed?

These are five universal wake-up calls we all need to be reminded of. There’s no shame in tagging all the friends you need to call when you share this.

Complete Article HERE!

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8 simple words to say when when someone you love is grieving

By Tim Lawrence

8 simple words to say when when someone you love is grieving

I’m listening to a man tell a story. A woman he knows was in a devastating car accident, and now she lives in a state of near-permanent pain; a paraplegic, many of her hopes stolen.

I’ve heard it a million times before, but it never stops shocking me: He tells her that he thinks the tragedy had led to positive changes in her life. He utters the words that are nothing less than emotional, spiritual, and psychological violence:

“Everything happens for a reason.”

He tells her that this was something that had to happen in order for her to grow. But that’s the kind of bullshit that destroys lives. And it’s categorically untrue.

After all these years working with people in pain as an advisor and adversity strategist, it still amazes me that these myths persist despite the fact that they’re nothing more than platitudes cloaked as sophistication. And worst of all, they keep us from doing the one thing we must do when our lives are turned upside down: grieve.

Here’s the reality: As my mentor Megan Devine has so beautifully said: ‘Some things in life cannot be fixed. They can only be carried.’

Grief is brutally painful. Grief does not only occur when someone dies. When relationships fall apart, you grieve. When opportunities are shattered, you grieve. When illnesses wreck you, you grieve.

Losing a child cannot be fixed. Being diagnosed with a debilitating illness cannot be fixed. Facing the betrayal of your closest confidante cannot be fixed. These things can only be carried.

Let me be clear: If you’ve faced a tragedy and someone tells you in any way that your tragedy was meant to be, happened for a reason, will make you a better person, or that taking responsibility for it will fix it, you have every right to remove them from your life.

Yes, devastation can lead to growth, but it often doesn’t. It often destroys lives — in part because we’ve replaced grieving with advice. With platitudes.

I now live an extraordinary life. I’ve been deeply blessed by the opportunities I’ve had and the radically unconventional life I’ve built for myself.

But loss has not in and of itself made me a better person. In fact, in some ways it’s hardened me.

While loss has made me acutely aware and empathetic of the pains of others, it’s also made me more inclined to hide. I have a more cynical view of human nature and a greater impatience with people who are unfamiliar with what loss does to people.

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Above all, I’ve been left with a pervasive survivor’s guilt that has haunted me all my life. In short, my pain has never gone away, I’ve just learned to channel it into my work with others. But to say that my losses somehow had to happen in order for my gifts to grow would be to trample on the memories of all those I lost too young, all those who suffered needlessly, and all those who faced the same trials I did but who did not make it.

I’m simply not going to do that. I’m not going to assume that God ordained me for life instead of all the others, just so that I could do what I do now. And I’m certainly not going to pretend that I’ve made it simply because I was strong enough, that I became “successful” because I “took responsibility.”

I think people tell others to take responsibility when they don’t want to understand.

Understanding is harder than posturing. Telling someone to “take responsibility” for their loss is a form of benevolent masturbation. It’s the inverse of inspirational porn: It’s sanctimonious porn.

Personal responsibility implies that there’s something to take responsibility for. You don’t take responsibility for being raped or losing your child. You take responsibility for how you choose to live in the wake of the horrors that confront you, but you don’t choose whether you grieve. We’re not that smart or powerful. When hell visits us, we don’t get to escape grieving.

This is why all the platitudes and focus on “fixes” are so dangerous: by unleashing them on those we claim to love, we deny them the right to grieve.

In so doing, we deny them the right to be human. We steal a bit of their freedom precisely when they’re standing at the intersection of their greatest fragility and despair.

The irony is that the only thing that even can be “responsible” amid loss is grieving.

I’ve grieved many times in my life. I’ve been overwhelmed with shame so strong it nearly killed me. The ones who helped — the only ones who helped — were those who were simply there.

I am here — I have lived — because they chose to love me. They loved me in their silence, in their willingness to suffer with me and alongside me. They loved me in their desire to be as uncomfortable, as destroyed, as I was, if only for a week, an hour, even just a few minutes. Most people have no idea how utterly powerful this is.

Healing and transformation can occur. But not if you’re not allowed to grieve. Because grief itself is not an obstacle.

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The obstacles come later. The choices as to how to live, how to carry what we have lost, how to weave a new mosaic for ourselves? Those come in the wake of grief.

Yet our culture treats grief like a problem to be solved or an illness to be healed. We’ve done everything we can to avoid, ignore, or transform grief. So that now, when you’re faced with tragedy, you usually find that you’re no longer surrounded by people — you’re surrounded by platitudes.

So what do we offer instead of “everything happens for a reason”?

The last thing a person devastated by grief needs is advice. Their world has been shattered. Inviting someone — anyone — into their world is an act of great risk. To try to fix, rationalize, or wash away their pain only deepens their terror.

Instead, the most powerful thing you can do is acknowledge. To literally say the words:

I acknowledge your pain. I’m here with you.

Note that I said with you, not for you. For implies that you’re going to do something. That’s not for you to enact. But to stand with your loved one, to suffer with them, to do everything but something is incredibly powerful.

There is no greater act for others than acknowledgment.

And that requires no training, no special skills — just the willingness to be present and to stay present, as long as is necessary.

Be there. Only be there. Don’t leave when you feel uncomfortable or when you feel like you’re not doing anything. In fact, it’s when you feel uncomfortable and like you’re not doing anything that you must stay.

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Because it’s in those places — in the shadows of horror we rarely allow ourselves to enter — where the beginnings of healing are found. This healing is found when we have others who are willing to enter that space alongside us. Every grieving person on earth needs these people.

I beg you, be one of these people.

You are more needed than you will ever know. And when you find yourself in need of those people, find them. I guarantee they are there.

Everyone else can go.

Complete Article HERE!

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Personal Rituals Can Help You Deal with Grief

By Thorin Klosowski

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Grief, whether it’s losing someone we love, the end of a relationship, or whatever else, is a complicated emotion. While we all tend to deal with grief in different ways, The Atlantic points to research that shows just how much personal rituals can help you deal with your grief.

Coping with grief is tough and most of us tend to turn to rituals to deal with it. These rituals could be something as simple as listening to a specific song in the morning or going to a hairdresser at a scheduled time each month. After a series of different studies and questionnaires, researchers think that these rituals add a feeling of control back once it’s lost:

One of the most common responses to loss is feeling like the world is out of control. Day to day, most people go about their lives thinking they are in command. They decide what they do, whom they see, and where they go. And death—a familiar part of life in the past, when diseases were untreatable and public parks were cemeteries—is now remote, for the most part unseen, and often unthought of. So the sudden death of a loved one can shock and stun. The bereaved can be overcome by a helplessness that is otherwise foreign to their lives. As Didion writes in The Year of Magical Thinking: “Everything’s going along as usual and then all shit breaks loose.”

When Norton and Gino probed deeper into the emotional and mental lives of their research subjects, they found that rituals help people overcome grief by counteracting the turbulence and chaos that follows loss. Rituals, which are deliberately-controlled gestures, trigger a very specific feeling in mourners—the feeling of being in control of their lives. After people did a ritual or wrote about doing one, they were more likely to report thinking that “things were in check” and less likely to feel “helpless,” “powerless,” and “out of control.”

We’ve talked about developing personal rituals before, and from the sound of it, in times of grief it’s really important to keep up those rituals.

Complete Article HERE!

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10 Things Your Doctor Won’t Tell You About Dying

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Learn what science has discovered so far about what happens when we die.

Death is a subject many people do not like to discuss, but it’s a part of life that we will all have to face. Sometimes the more you know about a certain subject, the less frightening it becomes. Here are 10 things you may not know about dying.

1. Dying is often a process. There are numerous causes of death, many of which are instant. For people who know death is approaching — whether from sickness or old age — there are certain signs. These signs include slowed breathing, weakened heart rate, and a change in color, says Zachary Palace, MD, medical director of the Hebrew Home at Riverdale in New York.

“In general, in the time leading up to death, usually the person will become pale because of a drop in blood pressure,” he says. “The fingers may get cold or turn blue. If you feel the pulse, it will be weak, and then they start to develop an irregular type of breathing, and that’s a sign that things are pretty ominous.”

2. When breathing slows, death is likely near. Dr. Palace explains that there may be gaps in between breaths where it looks like the person stopped breathing for 15 to 20 seconds. He says families often worry at this point, but he assures them that it’s a normal part of the dying process.

3. There are two stages of death. The first stage, known as clinical death, occurs when a person’s heart stops beating. About four to six minutes later, brain cells start to die from the loss of oxygen and biological death occurs.

4. Resuscitation may be possible during clinical death. But it’s not possible during biological death. However, doctors may be able to delay biological death by cooling the body, thus extending the window for possible resuscitation. Palace also points out that drowning victims or people in a colder environment may also delay biological death. “The colder the body is, the slower the metabolic rate,” he explains, “so you’re using oxygen up slower and that window may be longer.”

5. Hearing may be the last sense to go. Though it has not been scientifically proven, it is widely believed that hearing is the last of the senses lost before death. “It’s the most passive sense,” Palace explains. He says that when death seems imminent, “weencourage families to talk and share their last thoughts, love, and support with their loved ones because even though the blood pressure is dropping and they’re fading out, they can hear what we’re saying.”

6. You may urinate and defecate. When we’re alive, our brain is constantly sending signals to tell different parts of our body what to do. At death, these signals stop, and our muscles mostly relax. “The neck of the bladder and the sphincter are in a constant state of contraction, so when there’s no more neural signals to the bladder or bowels, then they relax,” Palace says. “So it’s not uncommon just after death for urine to come pouring out or for someone to defecate.”

7. Morphine is only used to ease the pain associated with passing. Palace says the biggest misconception he hears is that morphine is given to patients to help induce death. He says this couldn’t be further from the truth. “Obviously, physician-assisted suicide is not legal in most states, so morphine is not given to help hasten the end,” he says.

When people are dying, Palace explains, blood pressure drops and they are getting less oxygen to their organs. The body responds by gasping for air in a futile attempt to increase their respiratory rate. Doctors refer to this as air hunger. “That gasping is very difficult for families to see, as it obviously looks painful, and that’s where the role of morphine comes in,” Palace says. “The proper dose of morphine relieves the sense of air hunger, so they’re breathing more calmly and more comfortably.”

8. The body as a whole may be dead, but certain parts within are still alive. The brain is the first organ to begin to break down, and other organs follow suit. Living bacteria in the body, particularly in the bowels, play a major role in this decomposition process, or putrefaction. This decay produces a very potent odor. “Even within a half hour, you can smell death in the room,” he says. “It has a very distinct smell.”

9. There may be a scientific explanation to the notion of your life flashing before your eyes. A 2013 study from the University of Michigan found that dying rats displayed high levels of brain waves shortly after their hearts stopped beating. Researchers believe the finding could have implications for humans and possibly explain the near-death experiences many cardiac arrest survivors report. “It will form the foundation for future human studies investigating mental experiences occurring in the dying brain, including seeing light during cardiac arrest,” lead study author Jimo Borjigin, PhD, said in a statement.

10. Consciousness may continue after death. There is little scientific research available that tells us what happens to the mind after death, but a 2014 study may offer some insight. Researchers at the University of Southampton in England examined over 2,000 cardiac arrest patients in the United States, United Kingdom, and Austria. Of those who survived, 140 were surveyed about their near-death experiences, and 39 percent reported feeling some kind of awareness while being resuscitated. This sense of awareness included feelings of peacefulness and a sensation that time slowed down or sped up. Thirteen percent reported feeling separated from their bodies. While only two percent exhibited full awareness, researchers say this proves that more studies need to be done.

Complete Article HERE!

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Caregiver Stress

Help Yourself Help Others

By Angela Morrow, RN

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Families are the mainstay when it comes to providing long-term care to the elderly or disabled, more so than nursing homes, government agencies, or private agencies. More that 22.4 million people in the United States provide some form of informal, unpaid care to someone who is elderly or disabled. Those caregivers include spouses, children, other family members, and friends. Caregivers face a variety of physical, emotional, and socio-economic strains that can cause caregiver stress and, if not properly relieved, lead to caregiver burn-out.

Physical Demands

Caregivers are often required to do a number of physical activities that can stress the body. These may include:

  • Lifting the patient (in and out of a bed, wheelchair, bathtub, or car)
  • Turning the patient from side to side in bed
  • Bathing the patient
  • Feeding the patient
  • Cooking for the patient as well as for themselves
  • Additional shopping

These physical tasks can be very exhausting, especially when piled on top of other demands such as caring for young children and work. These physical demands can also be very difficult for caregivers that are elderly or frail themselves.

Emotional Demands

Caring for someone who is ill or disabled can be very taxing emotionally as well. Sometimes the person you’re caring for can’t remember you or has a hard time following directions or communicating their needs, particularly if he or she suffers from dementia. The person you’re caring for may also have behavioral problems such as yelling, hitting, biting, or wandering away.

This may make you feel frustrated, angry, or resentful towards your loved one.

Socio-economic Demands

Let’s face it – caring for someone can be a thankless job and it is almost always done without pay or reimbursement. It can demand so much of your time that you are unable to continue working. It can also be very costly.

Most items needed for day-to-day care aren’t covered by insurance such as adult diapers, food and health shakes, latex gloves, etc. These factors combined can really put a dent into your financial situation.

Am I Stressed?

It would probably be abnormal to not have any days when you feel stressed. Stress that doesn’t get any better after a short time or is getting worse needs to be dealt with before it leads to burn-out. Common signs of caregiver stress include:

  • Feeling sad or moody
  • Crying more than is normal for you
  • Having low energy
  • Feeling like you don’t have any time for yourself anymore
  • Changes in sleeping patterns (insomnia or sleeping too much)
  • Changes in eating patterns (having no appetite or overeating)
  • Isolating yourself from friends and family
  • Losing interest in hobbies
  • Feelings of anger or resentment towards the person you are caring for

All of these feelings are normal and can occur from time to time as you care for someone. The important thing to remember is to take care of you as well.

You are no good to others if you’re stressed out and sick yourself.

I Am Stressed! Now What?

Remember first and foremost that this is normal. Talking to your doctor, nurse, medical social worker, or chaplain can be helpful in finding ways to manage the stress that goes along with care-giving. You may need to ask family or friends for help so you can take a break. Asking for help does not make you a failure and taking a short break can help reenergize and refresh you. If you have any type of supportive in-home care, such as home health or Hospice care, take advantage of the times that the nurse or home health aide is there. Take a short break and escape to your room with a good book knowing your loved one is in capable hands.

Caregiver Burnout

If caregiver stress continues without treatment, burnout is a real possibility. Burnout is essentially when you feel so overwhelmed that you are unable to care for your loved one and often unable to care for yourself. If think you are reaching that point or are already there, it is important to find help. The first thing you need to do is find medical attention. Then, you can utilize resources in your community. These may include:

  • Adult Day Care – If the person you are caring for is able to safely leave the home, this may be a good option. These centers offer seniors a place to socialize and participate in activities and provide you a much needed break.
  • Skilled Nursing Facilities – Nursing homes (or convalescent hospitals) and assisted living facilities may be able to provide you with respite care. Especially if your loved one is on Hospice. Respite care is part of the Medicare Hospice Benefit.
  • Private Care Aides – Private aides can be hired for a variety of schedules. You may want help for just a couple of hours a day to take a short break or you may choose to have someone there around the clock.

Utilizing this type of support requires financial resources so if you are a little strained in that area as well, start with your church or synagogue. They may have programs that offer support. There may be other community supported programs in your area that offer respite services as well. You can also look into the National Family Caregiver Support Program (NFCSP) through the U.S. Department of Health and Human Service’s Administration on Aging (AoA). They can assist you in finding resources in your area. Their website can be found at www.eldercare.gov or you can call 1-800-677-1116 for more information.

Just remember that you are not alone. Taking care of yourself does not make you selfish or uncaring towards your loved one. Taking care of yourself means you will have all the strength, compassion, and patience needed to provide the best care to others.

Complete Article HERE!

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“I want to die at home, surrounded by people who love me”

For Dr Kate Granger, preparing for a ‘good’ death has allowed her to accept her diagnosis of incurable cancer

Kate and her husband Chris at the renewal of their wedding vows
Kate and her husband Chris at the renewal of their wedding vows

“Facing death is not something anybody ever wants to contemplate. But that is exactly what I’ve had to do for the past five years. At the age of 29 I had the perfect life. Happily married, successful career, great network of friends and family, beautiful home and in the early stages of planning to conceive our first child. My life was all I’d ever dreamed it would be. But all that was shattered into minuscule pieces when the cancer sledge hammer hit us, and we discovered my incurable diagnosis; a diagnosis that came completely out of the blue and destroyed our lives as we knew them.

As a doctor specialising in the care of older people I had some familiarity with dying. I’d sat and held the hands of patients as they drew their final breaths. I’d comforted families through difficult conversations around end of life care for their loved ones and their eventual bereavement. But now it was my own mortality that had come into a sharp, unavoidable reality.

The cancer was very aggressive and advanced; my kidneys had failed; I was in intractable pain. There really was no hope of cure no matter how optimistic your view. As a clinician I didn’t know any way to get through something so life changing, other than addressing it head on. Within days of discovering I had bone and liver metastases, I had made the decision that I did not want to undergo cardiopulmonary resuscitation. I wrote my Bucket List. I made a will. I started work on a memory box for Chris. I specified my end of life care preferences in writing. Attending to these practical considerations gave me a peace of mind that allowed us to accept what was happening, and then move on with living in the present with a degree of calmness.001

Thoughts about death often creep into my consciousness though. I wonder about what it will feel like, what symptoms I might experience and I reflect frequently on my personal vision of a peaceful, ‘good’ death. I’ve picked out my favourite music, particular candles with soothing scents and the books I’d like my Mum to read to me. I desperately want to die at home, surrounded by the people who love me. These preparations are designed to create an environment with comforting childhood memories, making me feel as safe as I can despite the horrendous circumstances.

However given my professional experience I know only too well that I may not achieve my serene death ambitions. I know that my symptoms may become uncontrollable at home, especially if I develop a bowel obstruction. I fear being bundled into an ambulance and carted off to hospital. I fear my eventual loss of independence. I fear not being strong enough to see it through to the end.

I have been extremely publicly transparent about my health problems by writing books and using social media. Looking back I think this is thanks to my inner teacher; I want to share my experiences to improve care for other patients. I felt so useless and lacking in purpose at the beginning of my illness. Getting my laptop out to write the whole sorry saga down seemed a natural response. I needed to process what I was going through and I wanted to emphasise how healthcare professionals’ behaviour impacts the people they look after. This project has now gone one step further, and I plan to share the end of my life on Twitter using the hashtag #deathbedlive. Unexpectedly I now have a huge social media following, and I hope one of my final legacies will be to promote a national conversation in society around death and dying by using this powerful voice.

I’m one of the lucky ones. I genuinely believe that. I have the support of an amazing husband, who has been there for me every single step of the way. He has made our lives truly incredible and I never know what the next lovely surprise might be. We are able to live comfortably in our own skins, with the lurking existence of the death gremlin, because we are honest and open with each other. Talking about death is never going to be an easy task, but Chris knows my wishes and I am absolutely sure that he will protect them right up until the end.

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