A Poem of Farewell

God saw you were getting weaker, calmer,
so He did what he thought best.
He came and stood beside you
and He whispered "Come to rest."
We could not understand it,
no matter how we tried.
If love alone could have saved you
you never would have died.

When the Soul Leaves the House

Doesn't it seem that the home knows when the person who lived there has died?

Brian Dillon writes about "The Empty Space."

A house changes after somebody has died: There is suddenly too much space. We all know the symptoms of that change. We set an extra place at the table. We leave empty for months, even years, a chair in which the de­ceased used to sit. We imagine that at any moment the lost loved one will appear in the room (the air, the light, the whole room would subtly alter). These phenomena are familiar to the point of cliché. So well-known, in fact, that, even in the shock of our bereavement, we are sur­prised (in my case, embarrassed; shame seems to have covered for every other emotion) to find ourselves suc­cumbing to them, as if we feel our grief must, surely, be more original than that. When nothing is said of the ab­sence at the heart of the house, these lapses multiply; if only we could name the emptiness—we do know, after all, its name, her name—we would surely be better able to navigate around it, to keep moving. But time and again we find ourselves stranded in these ludicrous poses, like a photograph from which one figure has been erased: four dummies with nothing to say to one another.

A Man Cares for his Wife with Dementia -- With the Help of His Girlfriend

Design/cooking/lifetyle expert B. Smith has dementia. The woman once called "the black Martha Stewart" once presided over an empire that included restaurants and magazines, but now she has dementia. Her husband still cares for her lovingly and keeps her fans up to date through social media. But some of them are upset because he has a girlfriend, who helps him in caring for her.

“We were friends,” Alex said. “I didn’t want to go out with a married man.” Plus, she’d socialized with B. at charity events. But when Dan invited her to breakfast at a popular hotel with B., she accepted.

Finally, she saw. “This is not a man cheating on his wife,” she told herself. In the middle of breakfast, Alex helped B. to the bathroom.

Alex had a nurturing spirit. And she saw the same in him. “What I admire about him,” she said, “is that he takes care of her.” ....Despite the online response, those who know Dan and B. defend the relationship. “Anybody that would judge Dan knows nothing about the disease and the toll it takes” on a marriage, Schnayerson said. “If you can find a companion who can help you get through that, all power to you.”

Dana also pointed out that her father has not abandoned B. by any measure. “She’s in this house. She’s here every day,” she said.

And, on many days, so is Alex. “If I can be compassionate to her,” Alex said, her voice breaking, “if I can do anything for her, it makes me feel good. If it is giving her something to drink, or making her something to eat — she loves to eat — I feel good.”

Lifestyle guru B. Smith has Alzheimer’s. Her husband has a girlfriend. Her fans aren’t having it.

Susan MacLeod on What She Learned from Visiting Her Mother in a Nursing Home

This beautiful essay by Susan MacLeod about the way her visits to her mother in a nursing home transformed their relationship is illuminating and deeply moving.

Repelling what we don’t want is misguided. This is one of the first things I learned on my Buddhist path. The starting point of the path is suffering, and sickness, old age, and death require peaceful abiding, rather than hope, fear, or especially ignorance.

Unconsciously, my meditation practice began to express itself in everyday life and became present in this situation as well. Albeit reluctantly, I made my way to see Mom regularly. Like meditation, it took discipline. I was always uneasy, not knowing what to expect, how to act, what to do, what to say. I also carried an underlying anger that I was the sibling stuck doing it.

Despite all this, I knew it was important to remain open for Mom’s sake, as at some level I loved her deeply, beyond the itch of aggravation. So I began to slow down to see what was really going on....When I slowed down to be fully with Mom, I also saw more depth in the nursing home experience than I had expected. People who live in nursing homes are full of life. Beneath the restrictions of their diminishing physicality and cognition, their spirit is often strong; I know my mother’s was. And the more I visited her, the stronger and more loving she became. She would break out in a joyful grin whenever she saw me walk down the corridor, a far cry from the critical look up and down or remark about my unruly hair that I was used to from her.

Her fellow residents began to show me who they were too. Rather than rush by them, speeding to get to my mother’s room and its relative safety, I started to actually see them. I began to greet each one. I learned their names and something about them so we could converse regularly. We made jokes with each other. I would often find myself with a smile on my face looking across the dining room as I helped Mom eat, the complete opposite of the look of horror I first wore when sitting in that room....I have read this quote in my Buddhist studies: “Fear is the natural reaction to nearing the truth. It may all come down to fear of death. Or fear of tenderness. Smile at fear, make friends with it. When we look at fear with gentleness, it’s not solid.”

Call for Papers: Conference on Death and Dying

The 14th annual conference on the Social Context of Death, Dying, and Disposal, held on behalf of the Association for the Study of Death and Society (ASDS), in the UNESCO World Heritage city of Bath, will showcase academic and professional research and creative work related to death, dying, disposal and bereavement.

The conference is taking place at a time when both academia and front-line practitioners are under increasing pressure to show real world relevance and contribution. The theme of the conference is Engagement and Education.

The Call for Papers is now open - see below for details.

It is a multi-disciplinary conference open to all, including, but not limited to:

anthropologists
archaeologists
art and architectural historians
artists
bereavement counsellors
cultural theorists
critical race theorists
queer theorists
independent scholars
cultural geographers
death work practitioners
historians
literary theorists
medical and health practitioners
end-of-life and palliative care workers
philosophers
psychologists
students of religion
social policy analysts
social workers
sociologists
computer scientists
those in the legal professions

The Four Ways People Die

Mark Starmach writes on Medium about the four ways people die and how to do it well. Dr. Yvonne McMaster, a retired palliative care physician, explains that basically, there is sudden death (rare) and the others are variations on how even and long the decline is, from slow, gentle slope to periods of being better and worse to slow followed by fast.

[P]alliative care is somewhere in the background. It’s supportive medicine and therapy in the form of symptom-controlling medication, rehabilitation, and counsel, which doesn’t necessarily cure illness, but does make it easier to cope or recover. Curative and palliative efforts complement each other. Curative care makes you get better, but palliative care makes you feel better, kind of like how a sore throat lozenge soothes your throat even if it doesn’t “cure” the cause of the soreness.

As we get older, however, many of us develop conditions that are life-limiting, chronic, or terminal. (Life itself is a terminal condition, as Yvonne likes to remind me.) And this is when palliative care comes more into the foreground, focusing on a patient’s quality of life, symptoms, and emotional wellbeing, as well as the welfare of their loved ones. It doesn’t focus on curing but it isn’t “giving up,” and it doesn’t necessarily mean that death is imminent; many people receive palliative care for years.

It also isn’t the same as euthanasia.

Dr. McMaster talks about "a good death."

A good death is one as painless as possible.

A good death is one with friends and loved ones by your side and medical assistance within arm’s reach.

A good death is one where you are looked after in accordance to your values and wishes, seamlessly, as you’re moved from institution to institution.

But there’s another element to a good death, which I see as a common theme across all of Yvonne’s stories: a sense of closure.

Audrey J. Parker on Dying in Style

Audrey J. Parker writes about Dying in Style:

I have always liked to do things well and to the best of my ability, so I took my death on as a project. All I wanted was to have a fabulous end-of-life experience on my terms and to die in style. After all, death is natural and can be a beautiful thing if we allow it to be.

Some people speculate about what they would do if they knew when they were going to die. It’s not hypothetical for me. For a while now, I’ve known the exact day when I’m going to die, because I’ve elected medically assisted death to cut off the off the greatest pain and worst quality of life that would be inevitable if I lingered. My pre-planned exit is coming up very soon. I’m unable to leave my bed in my apartment now, and this bed will be my deathbed.

Despite the pain, suffering, and other negative things that have accompanied the process of my dying, I still believe that my last breath will be the most peaceful and beautiful breath of my life. I believe everyone holds the key to their own personal happiness. No matter how dire your circumstances, you control your mindset, attitude, and how you handle things. It is entirely up to you whether you take a positive or negative approach to life (and death).

She writes about what helped her most, including taking control, making time for joy, and helping others. 

Presence is the Greatest Gift

Advice for Future Corpses: A Palliative Nurse on What She's Learned About Last Days

In Advice for Future Corpses, author and palliative care nurse Sallie Tisdale shares insight and contemplation into what constitutes a good death. Managing our own avoidance and fear, she writes, is key to shepherding a peaceful final passage. Here she describes what to expect, and consider, during the last days and hours.

Death takes many forms. One death is anticipated over months. Another death is stunningly abrupt. And now and then death is held back by technology. I have seen how these deaths are different, and they are all the same, in the end: A person breathes and then breathes no more. He enters a stillness like no other. Breath. Another breath, and then no more. But when the breaths are made by a machine or the blood pressure is sustained by powerful drugs, someone has to make an awful decision....Journalist and author Virginia Morris pleads for a change of terms: “When we take a terminally ill patient off life support, we are not ‘pulling the plug,’ we are ‘freeing’ the patient to die. We are ‘releasing’ her from excessive technology and invasive treatments. When we allow death to happen, we are not killing people, we are caring for them. We are loving them....”

A dying person’s attention turns toward a place we do not see and that they cannot explain. They are done with the business of the living, as it were, and more or less finished with us. Now they are not a mother or a plumber or a friend. Now they are entirely a dying person, and the world begins to shine. In spite of going hours without speaking, in spite of needing help to button a shirt, he is busy. He may not have the energy to talk, because he is waiting for something and that takes everything he has left.

He may be waiting to understand why.

Laugh. Laugh! Sing. The last kiss, the last dream, the last joke to tell. I have been telling you all the many things we might say, and shouldn’t. Things to say as the end is coming: I love you. I hope the best for you. We will be all right. Go with peace.

The Meaning of Last Words

Mort Felix liked to say that his name, when read as two Latin words, meant “happy death.” When he was sick with the flu, he used to jokingly remind his wife, Susan, that he wanted Beethoven’s “Ode to Joy” played at his deathbed. But when his life’s end arrived at the age of 77, he lay in his study in his Berkeley, California, home, his body besieged by cancer and his consciousness cradled in morphine, uninterested in music and refusing food as he dwindled away over three weeks in 2012. “Enough,” he told Susan. “Thank you, and I love you, and enough.” When she came downstairs the next morning, she found Felix dead.

During those three weeks, Felix had talked. He was a clinical psychologist who had also spent a lifetime writing poetry, and though his end-of-life speech often didn’t make sense, it seemed to draw from his attention to language. “There’s so much so in sorrow,” he said at one point. “Let me down from here,” he said at another. “I’ve lost my modality.” To the surprise of his family members, the lifelong atheist also began hallucinating angels and complaining about the crowded room—even though no one was there.

Felix’s 53-year-old daughter, Lisa Smartt, kept track of his utterances, writing them down as she sat at his bedside in those final days. Smartt majored in linguistics at UC Berkeley in the 1980s and built a career teaching adults to read and write. Transcribing Felix’s ramblings was a sort of coping mechanism for her, she says. Something of a poet herself (as a child, she sold poems, three for a penny, like other children sold lemonade), she appreciated his unmoored syntax and surreal imagery. Smartt also wondered whether her notes had any scientific value, and eventually she wrote a book, Words on the Threshold, published in early 2017, about the linguistic patterns in 2,000 utterances from 181 dying people, including her father.

Teacher's Coffin Covered with Children's Drawings

A teacher's coffin was decorated with drawings from the students who loved her.

Past and present pupils of the school sang at the funeral, and covered Mrs East’s coffin with drawings of fairies, butterflies, love hearts, rainbows and ‘fairy dust’. Tributes paid by pupils said that they ‘loved’ their headteacher, adding she was: ‘Fun, lovely, exotic, glittery, the best teacher, kind, caring, taught us to believe in ourselves, sprinkled fairy dust everywhere.’

Read more: https://metro.co.uk/2019/01/17/headteacher-laid-to-rest-in-coffin-covered-by-drawings-by-her-pupils-8356704/?ito=cbshare

Paddleton | Official Trailer [HD] | Netflix

Mark Duplass and Ray Romano star in "Paddelton," about two friends who respond and struggle to cope when one gets a terminal diagnosis.

Condolence Letters That Console

From the New Yorker a description of a class on writing condolence letters conducted by my friend Amy Cunningham:

“Passed away” is out; “died” is in. Don’t say, “I know how you feel” or “This is God’s plan.” Handwritten letters are always good, but you can also type something and print it on ivory paper. “I’m not opposed to preprinted cards,” Cunningham said.

To illustrate her points, she shared a few condolence letters from famous literary and historical figures. “This is not a good letter, Charlie,” Ernest Hemingway wrote to Charles Scribner, the son of his late publisher. “But I still feel too sad to write a good one.” Cunningham awarded him points for completion. “Aiming for excellence is really only going to hold you up.”

Writing to a friend’s widow, Aldous Huxley veered into esoteric musings: “How are we related to what we were? Who are we now and what were we then? . . . There are no answers, of course.” According to Cunningham, this was not “a home run,” although it might have been endearing to a friend of Huxley’s....Also, don’t make it about yourself, as Queen Victoria did in a letter to Mary Todd Lincoln after the death of the President: “No one can better appreciate than I can, who am myself utterly broken-hearted by the loss of my own beloved husband, who was the light of my life, my stay, my all, what your sufferings must be.”

Living with grief: A conversation between men

The Casketeers -- Maori Funeral Directors, Now on Netflix

Elizabeth Gilbert on the Death of Her True Love, Her "Alpha Wolf" Girlfriend

Elizabeth Gilbert, the author of Eat Pray Love, tells the story of the death of the love of her life, Rayya Elias, who "didn't want gentle." She didn't want tender. She didn't want sunshine and lovely candles. She didn't want hospice and got kicked out. She wanted to live on Oreos and cigarettes. The story of the three women who loved Elias trying to keep up with her, "the Charlie's Angels way of being taken care of," and her insistence on dying as she had lived is beautiful. Here they are together.

No One is "Good" at Funerals

In 8 things this funeral director wishes you knew, Louise Winter writes:

Last year I founded Poetic Endings – a modern funeral service – because I realised that most of the funerals happening today are not serving their purpose. What should a funeral do? Why do we even have them?

She reassures us that we don't have to be "good" at funerals. We don't have to do what funeral directors tell us is how it's done. We don't even need to use one. What we do need is to talk beforehand about what our loved ones want, and to do what honors them and is kind to those who are mourning.

He Forgot They Were Married -- So He Proposed to His Wife Again

A man with dementia forgot that he was married. So he fell in love with his wife all over again, proposed to her, and insisted that they get married.

“There’s been a lot of sadness and a lot of frustration,” Linda Joyce said. “And despite all the fogginess, today has been pure joy.”

Husband with Alzheimer’s forgot he was married to his wife of 38 years. He proposed, and they married again.

Virtual Reality for EOL Caregivers -- How it Feels to Get the Bad News

Now is the Time to Talk About End of Life Care that is Quality of Life Care

[T]he American health care system never taught the public that preventing a natural death often results in a wholly unnatural life.

As an intensive-care unit nurse, I am haunted by memories of patients who were stabilized in intensive care so that their catastrophic injuries or diseases did not kill them, but who were left unable to communicate or do anything but receive medical care....The incapacitated ill are profoundly disenfranchised, and the manipulation of their bodies is extraordinarily invasive and consequential.

It's a moral crisis hiding in plain sight, yet the people involved claim to be mere cogs in the machine. When I asked an ICU attending physician why families aren't given data and clear explanations of probable outcomes rather than best-case scenarios and “only time will tell” conversations, he said, “palliative care people can do that. In the ICU, we don't really have time.” Another physician mentioned the “inertia of the system.”

It falls to the general public — the patients — to take the initiative in reforming the excesses of modern medical care.

You can determine your fate by completing an advance directive. This is a legal document in which you can explain what measures should be undertaken if you are unable to communicate; name a health care proxy who can communicate your wishes to medical providers; and lay out how you envision the end of your life.

Why you should make end-of-life care decisions now

Earther: Green Burials

Brian Kahn writes in Earther:

In fact, the only sign there’s a cemetery here is the wrought iron and stone sculpture at its entrance and a few signs demarcating the conservation land that surrounds it.

But what Davis and a cadre of conservationists and afterlife advocates are building isn’t just about reconnecting with the Earth. They’re using the cemetery as part of a greater conservation plan for the Adirondacks. If they’re successful, that template that could spread to other landscapes stressed by human activity, helping them adapt them to the very modern problem of climate change....All told, the funeral industry with its estimated 19,177 funeral homes and thousands of cemeteries and crematoriums is worth an estimated $20.7 billion.

This big industry comes with a big environmental impact. In the U.S., 5.3 million gallons of toxic embalming fluid are buried every year. Each cremation releases as much carbon dioxide as a 500-mile road trip. Whether it’s metal caskets stuffed inside concrete vaults six feet below the surface or alkaline ashes that, if not stored in an urn on your mantle, are a real harm to the environment, the modern death industry has changed our relationship with, well, life.

“It’s bizarre we’ve ended up in a place where we spend thousands of dollars pumping our loved ones full of chemicals and painting their faces and putting them in a titanium casket is normal and wrapping them in a shroud and burying them isn’t,” Michelle Acciavatti, Spirit Sanctuary’s “death doula,” told Earther.