Michael J. Fox on Acting with Parkinson's, taking the wrong roles and staying positive: Until it's not funny anymore, it's funny
by David Marchese
New York Times Magazine, March 1, 2019
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It's perhaps a strange thing to suggest, but ever since Michael J. Fox went public with his diagnosis in 1998, his life has looked, from afar anyway, almost charmed. The foundation he started has raised a staggering $800 million to combat Parkinson’s disease. He’s written three best-selling memoirs and even continued to act, in substantive roles, on shows like “The Good Wife” and “Rescue Me.” His family life, with his wife of three decades, Tracy Pollan, is by all accounts a dream. And he’s still known to be an unusually nice guy, even by high Canadian nice-guy standards. His was a remarkably positive second act. “I’d developed a relationship with Parkinson’s,” said Fox, 57, “where I gave the disease its room to do what it needed to do and it left me areas I could still flourish in.” Until last year, when a scary new set of health problems arrived, threatening to alter his sunny disposition — almost. READ MORE
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What’s the last song you want to hear before you die?
by Mark Taubert
Washington Post, January 11, 2019
Windblown rain lashes against the hospital windows in an uncertain rhythm that seems even more unsteady as I enter the patient’s room near the nursing station. There is music in this room. Two people sit in chairs by the bed of a patient, a woman who is lying very still. I recognize the voice of Elton John coming from a tablet computer on the bedside table. He’s singing “Crocodile Rock.”
“She liked this,” says the woman’s daughter, smiling and rolling her eyes, as though to say “Elton John, really?” The dying woman’s husband glances at his daughter, then at me, and says, “We followed the advice from one of the nurses to play some music in her last few hours and days.” He smiles slightly, as if in apology for the jaunty tune ( I never knew me a better time and I guess I never will ) in this solemn setting.
His wife’s eyes are closed. Her breathing is steady. Her pulse is fine, about 90 beats per minute. She is much calmer than yesterday, when she was flushed, frowning and seemed in considerable pain. But she is dying. We are giving her as much support as we can to help her be free of distress or discomfort. READ MORE
“She liked this,” says the woman’s daughter, smiling and rolling her eyes, as though to say “Elton John, really?” The dying woman’s husband glances at his daughter, then at me, and says, “We followed the advice from one of the nurses to play some music in her last few hours and days.” He smiles slightly, as if in apology for the jaunty tune ( I never knew me a better time and I guess I never will ) in this solemn setting.
His wife’s eyes are closed. Her breathing is steady. Her pulse is fine, about 90 beats per minute. She is much calmer than yesterday, when she was flushed, frowning and seemed in considerable pain. But she is dying. We are giving her as much support as we can to help her be free of distress or discomfort. READ MORE
In Life’s Last Moments, Open a Window
by Rachel Clarke
New York Times, September 8, 2018
A furrowed brow and flailing arms were all we had to go on. The grimacing, the way the patient flung his head from side to side — all of it signified an unvoiced anguish. We tried talking, listening, morphine. His agitation only grew.
All cancers have the power to ravage a body, but each assails in distinctive ways. One of the particular cruelties of a cancer of the tongue is its capacity to deprive a person of speech.
Some of us thought he must be suffering from terminal agitation, a state of heightened anxiety that sometimes develops as the end of life draws near. But the junior doctor on the team, Nicholas, was convinced that we could unlock the source of our patient’s distress and volunteered to stay behind in the room.
Nicholas reappeared about an hour later. “You can understand his speech,” he announced. “You just have to really listen.”
When I re-entered the room, the reclining chair that the patient — a tall, angular man in his 80s — had been thrashing around in had been turned to face out onto the garden and the double doors were open wide. Now he sat calmly, transfixed by the trees and sky. All he had wanted was that view.
For a decade, I have worked as a doctor in Britain’s National Health Service. We are an overstretched, underfunded health service in which too few doctors and nurses labor with too few resources, struggling to deliver good care. Burnout among staff is endemic, so much so that it threatens to stifle the kindness and compassion that should be the bedrock of medicine.
But then there are the moments when helping someone is easy: Just nature is enough. READ MORE
All cancers have the power to ravage a body, but each assails in distinctive ways. One of the particular cruelties of a cancer of the tongue is its capacity to deprive a person of speech.
Some of us thought he must be suffering from terminal agitation, a state of heightened anxiety that sometimes develops as the end of life draws near. But the junior doctor on the team, Nicholas, was convinced that we could unlock the source of our patient’s distress and volunteered to stay behind in the room.
Nicholas reappeared about an hour later. “You can understand his speech,” he announced. “You just have to really listen.”
When I re-entered the room, the reclining chair that the patient — a tall, angular man in his 80s — had been thrashing around in had been turned to face out onto the garden and the double doors were open wide. Now he sat calmly, transfixed by the trees and sky. All he had wanted was that view.
For a decade, I have worked as a doctor in Britain’s National Health Service. We are an overstretched, underfunded health service in which too few doctors and nurses labor with too few resources, struggling to deliver good care. Burnout among staff is endemic, so much so that it threatens to stifle the kindness and compassion that should be the bedrock of medicine.
But then there are the moments when helping someone is easy: Just nature is enough. READ MORE
Imaginative Caregiving for the Cancer Patient
by Susan Gubar
New York Times, April 19, 2018
After the drama of diagnosis passes and the preliminary offers of assistance dissipate, a few hardy souls hang in with cancer patients for the long haul. If we are lucky, they tender surprisingly creative acts and gifts.
Imaginative caregiving is welcome because of the debilitation of prolonged treatment but also because of the barrage of clichéd responses patients receive from chance acquaintances. There I am, minding my own business in the drugstore, when someone pops up: “My aunt had your kind of cancer and died in two months.” “You don’t look sick!” “Did you eat red meat?” “The good Lord never gives us more than we can bear.” Those of us with chronic disease learn to block out this type of noise. Read on. . . .
Imaginative caregiving is welcome because of the debilitation of prolonged treatment but also because of the barrage of clichéd responses patients receive from chance acquaintances. There I am, minding my own business in the drugstore, when someone pops up: “My aunt had your kind of cancer and died in two months.” “You don’t look sick!” “Did you eat red meat?” “The good Lord never gives us more than we can bear.” Those of us with chronic disease learn to block out this type of noise. Read on. . . .
Bob Carey’s Tutu Project
Alzheimer’s?
Your Paperwork May Not Be in Order
by Jane E. Brody
New York Times,APRIL 30, 2018
I had hoped that by now most adults in this country would have completed an advance directive for medical care and assigned someone they trusted to represent their wishes if and when they are unable to speak for themselves. Alas, at last count, barely more than one-third have done so, with the rest of Americans leaving it up to the medical profession and ill-prepared family members to decide when and how to provide life-prolonging treatments.
But even the many who, like me, have done due diligence — completed the appropriate forms, selected a health care agent and expressed their wishes to whoever may have to make medical decisions for them — may not realize that the documents typically do not cover a likely scenario for one of the leading causes of death in this country: dementia. Missing in standard documents, for example, are specific instructions about providing food and drink by hand as opposed to through a tube. READ MORE
But even the many who, like me, have done due diligence — completed the appropriate forms, selected a health care agent and expressed their wishes to whoever may have to make medical decisions for them — may not realize that the documents typically do not cover a likely scenario for one of the leading causes of death in this country: dementia. Missing in standard documents, for example, are specific instructions about providing food and drink by hand as opposed to through a tube. READ MORE
A Widow's Food Guide to Grief
by Lisa Kolb
Washington Post, March 27, 2018
There are food guides for everything: the patisseries of Paris, Philly B.Y.O.B.s, farmers markets of California, even cat cafes around the world. But when my husband died a few years ago, and I lost my appetite and my ability to eat in a restaurant without sobbing, I realized there are none for the time when you need the most guidance: bereavement.
Day 1 post-death
Consider today a palate cleanser. You will probably eat no food today. Resume crying.
Day 2
5:20 a.m.: Give up on sleep. Start coffee. Forget you started coffee. Go back to bed.
7:30: Return to the kitchen and contemplate making toast. Think: What’s the point? Make toast anyway, because intellectually you know you should eat. Note the physical difficulty of chewing and swallowing. Abandon toast.
7:45: Respond to bereavement-related calls, emails and texts for several hours.
Noon: A neighbor may arrive with pound cake. READ MORE
Understanding Grief
by Jane Brody
NY Times, January 15, 2017
Although many of us are able to speak frankly about death, we still have a lot to learn about dealing wisely with its aftermath: grief, the natural reaction to loss of a loved one.
Relatively few of us know what to say or do that can be truly helpful to a relative, friend or acquaintance who is grieving. In fact, relatively few who have suffered a painful loss know how to be most helpful to themselves.
Two new books by psychotherapists who have worked extensively in the field of loss and grief are replete with stories and guidance that can help both those in mourning and the people they encounter avoid many of the common pitfalls and misunderstandings associated with grief. Both books attempt to correct false assumptions about how and how long grief might be experienced.
One book, “It’s OK That You’re Not OK,” by Megan Devine of Portland, Ore., has the telling subtitle “Meeting Grief and Loss in a Culture That Doesn’t Understand.” It grew out of the tragic loss of her beloved partner, who drowned at age 39 while the couple was on vacation. The other book, especially illuminating in its coverage of how people cope with different kinds of losses, is “Grief Works: Stories of Life, Death and Surviving,” by Julia Samuel, who works with bereaved families both in private practice and at England’s National Health Service, at St. Mary’s hospital, Paddington.
The books share a most telling message: As Ms. Samuel put it, “There is no right or wrong in grief; we need to accept whatever form it takes, both in ourselves and in others.” Recognizing loss as a universal experience, Ms. Devine hopes that “if we can start to understand the true nature of grief, we can have a more helpful, loving, supportive culture.”
Both authors emphasize that grief is not a problem to be solved or resolved. Rather, it’s a process to be tended and lived through in whatever form and however long it may take.
“The process cannot be hurried by friends and family,” however well meaning their desire to relieve the griever’s anguish, Ms. Samuel wrote. “Recovery and adjustment can take much longer than most people realize. We need to accept whatever form it takes, both in ourselves and in others.”
We can all benefit from learning how to respond to grief in ways that don’t prolong, intensify or dismiss the pain. Likewise, those trying to help need to know that grief cannot be fit into a preordained time frame or form of expression. Too often people who experience a loss are disparaged because their mourning persists longer than others think reasonable or because they remain self-contained and seem not to mourn at all.
I imagine, for example, that some adults thought my stoical response to my mother’s premature death when I was 16 was “unnatural.” In truth, after tending to her for a year as she suffered through an unstoppable cancer, her death was a relief. It took a year for me to shed my armor and openly mourn the incalculable loss. But 60 years later, I still treasure her most important legacy: To live each day as if it could be my last but with an eye on the future in case it’s not.
Likewise, I was relieved when my husband’s suffering ended six weeks after diagnosis of an incurable cancer. Though I missed him terribly, I seemed to go on with my life as if little had changed. Few outside of the immediate family knew that I was honoring his dying wish that I continue to live fully for my own sake and that of our children and grandchildren.
Just as we all love others in our own unique ways, so do we mourn their loss in ways that cannot be fit into a single mold or even a dozen different molds. Last month, James G. Robinson, director of global analytics for The New York Times, described a 37-day, 6,150-mile therapeutic road trip he took with his family following the death of his 5-year-old son, collecting commemorative objects along the way and giving each member of the family a chance to express anger and sadness about the untimely loss.
Ms. Devine maintains that most grief support offered by professionals and others takes the wrong approach by encouraging mourners to move through the pain. While family and friends naturally want you to feel better, “pain that is not allowed to be spoken or expressed turns in on itself, and creates more problems,” she wrote. “Unacknowledged and unheard pain doesn’t go away. The way to survive grief is by allowing pain to exist, not in trying to cover it up or rush through it.”
As a bereaved mother told Ms. Samuel, “You never ‘get over it,’ you ‘get on with it,’ and you never ‘move on,’ but you ‘move forward.’”
Ms. Devine agrees that being “encouraged to ‘get over it’ is one of the biggest causes of suffering inside grief.” Rather than trying to “cure” pain, the goal should be to minimize suffering, which she said “comes when we feel dismissed or unsupported in our pain, with being told there is something wrong with what you feel.”
She explains that pain cannot be “fixed,” that companionship, not correction, is the best way to deal with grief. She encourages those who want to be helpful to “bear witness,” to offer friendship without probing questions or unsolicited advice, help if it is needed and wanted, and a listening ear no matter how often mourners wish to tell their story.
To those who grieve, she suggests finding a nondestructive way to express it. “If you can’t tell your story to another human, find another way: journal, paint, make your grief into a graphic novel with a very dark story line. Or go out to the woods and tell the trees. It is an immense relief to be able to tell your story without someone trying to fix it.”
She also suggests keeping a journal that records situations that either intensify or relieve suffering. “Are there times you feel more stable, more grounded, more able to breathe inside your loss? Does anything — a person, a place, an activity — add to your energy bank account? Conversely, are there activities or environments that absolutely make things worse?”
Whenever possible, to decrease suffering choose to engage in things that help and avoid those that don’t.
by Jane Brody
NY Times, January 15, 2017
Although many of us are able to speak frankly about death, we still have a lot to learn about dealing wisely with its aftermath: grief, the natural reaction to loss of a loved one.
Relatively few of us know what to say or do that can be truly helpful to a relative, friend or acquaintance who is grieving. In fact, relatively few who have suffered a painful loss know how to be most helpful to themselves.
Two new books by psychotherapists who have worked extensively in the field of loss and grief are replete with stories and guidance that can help both those in mourning and the people they encounter avoid many of the common pitfalls and misunderstandings associated with grief. Both books attempt to correct false assumptions about how and how long grief might be experienced.
One book, “It’s OK That You’re Not OK,” by Megan Devine of Portland, Ore., has the telling subtitle “Meeting Grief and Loss in a Culture That Doesn’t Understand.” It grew out of the tragic loss of her beloved partner, who drowned at age 39 while the couple was on vacation. The other book, especially illuminating in its coverage of how people cope with different kinds of losses, is “Grief Works: Stories of Life, Death and Surviving,” by Julia Samuel, who works with bereaved families both in private practice and at England’s National Health Service, at St. Mary’s hospital, Paddington.
The books share a most telling message: As Ms. Samuel put it, “There is no right or wrong in grief; we need to accept whatever form it takes, both in ourselves and in others.” Recognizing loss as a universal experience, Ms. Devine hopes that “if we can start to understand the true nature of grief, we can have a more helpful, loving, supportive culture.”
Both authors emphasize that grief is not a problem to be solved or resolved. Rather, it’s a process to be tended and lived through in whatever form and however long it may take.
“The process cannot be hurried by friends and family,” however well meaning their desire to relieve the griever’s anguish, Ms. Samuel wrote. “Recovery and adjustment can take much longer than most people realize. We need to accept whatever form it takes, both in ourselves and in others.”
We can all benefit from learning how to respond to grief in ways that don’t prolong, intensify or dismiss the pain. Likewise, those trying to help need to know that grief cannot be fit into a preordained time frame or form of expression. Too often people who experience a loss are disparaged because their mourning persists longer than others think reasonable or because they remain self-contained and seem not to mourn at all.
I imagine, for example, that some adults thought my stoical response to my mother’s premature death when I was 16 was “unnatural.” In truth, after tending to her for a year as she suffered through an unstoppable cancer, her death was a relief. It took a year for me to shed my armor and openly mourn the incalculable loss. But 60 years later, I still treasure her most important legacy: To live each day as if it could be my last but with an eye on the future in case it’s not.
Likewise, I was relieved when my husband’s suffering ended six weeks after diagnosis of an incurable cancer. Though I missed him terribly, I seemed to go on with my life as if little had changed. Few outside of the immediate family knew that I was honoring his dying wish that I continue to live fully for my own sake and that of our children and grandchildren.
Just as we all love others in our own unique ways, so do we mourn their loss in ways that cannot be fit into a single mold or even a dozen different molds. Last month, James G. Robinson, director of global analytics for The New York Times, described a 37-day, 6,150-mile therapeutic road trip he took with his family following the death of his 5-year-old son, collecting commemorative objects along the way and giving each member of the family a chance to express anger and sadness about the untimely loss.
Ms. Devine maintains that most grief support offered by professionals and others takes the wrong approach by encouraging mourners to move through the pain. While family and friends naturally want you to feel better, “pain that is not allowed to be spoken or expressed turns in on itself, and creates more problems,” she wrote. “Unacknowledged and unheard pain doesn’t go away. The way to survive grief is by allowing pain to exist, not in trying to cover it up or rush through it.”
As a bereaved mother told Ms. Samuel, “You never ‘get over it,’ you ‘get on with it,’ and you never ‘move on,’ but you ‘move forward.’”
Ms. Devine agrees that being “encouraged to ‘get over it’ is one of the biggest causes of suffering inside grief.” Rather than trying to “cure” pain, the goal should be to minimize suffering, which she said “comes when we feel dismissed or unsupported in our pain, with being told there is something wrong with what you feel.”
She explains that pain cannot be “fixed,” that companionship, not correction, is the best way to deal with grief. She encourages those who want to be helpful to “bear witness,” to offer friendship without probing questions or unsolicited advice, help if it is needed and wanted, and a listening ear no matter how often mourners wish to tell their story.
To those who grieve, she suggests finding a nondestructive way to express it. “If you can’t tell your story to another human, find another way: journal, paint, make your grief into a graphic novel with a very dark story line. Or go out to the woods and tell the trees. It is an immense relief to be able to tell your story without someone trying to fix it.”
She also suggests keeping a journal that records situations that either intensify or relieve suffering. “Are there times you feel more stable, more grounded, more able to breathe inside your loss? Does anything — a person, a place, an activity — add to your energy bank account? Conversely, are there activities or environments that absolutely make things worse?”
Whenever possible, to decrease suffering choose to engage in things that help and avoid those that don’t.
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One Day Your Mind May Fade. At Least You'll Have a Plan
by Paula Span NY Times, January 19, 2018 When Ann Vandervelde visited her primary care doctor in August, he had something new to show her. Dr. Barak Gaster, an internist at the University of Washington School of Medicine, had spent three years working with specialists in geriatrics, neurology, palliative care and psychiatry to come up with a five-page document that he calls a dementia-specific advance directive. |
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In simple language, it maps out the effects of mild, moderate and severe dementia, and asks patients to specify which medical interventions they would want — and not want — at each phase of the illness. READ MORE
Love and Burnout: Caregivers, Too, Need Care
By CONSTANCE GUSTKE
NY Times SEPT. 2, 2016
AFTER Mark Donham’s wife, Chris, fell under the spell of early-onset Alzheimer’s, he doubled down on his marriage vows. He quit his job as a well-paid sales representative in the printing industry and became his wife’s 24-hour caregiver: dressing her, doing laundry and scheduling social visits with friends. Faith, hope and courage became his new mantra.
As Alzheimer’s slowly progressed and Chris became frailer, their lives narrowed. To explain their painful emotional journey to friends and family, Mr. Donham, who lives in Portland, Ore., began making videos and posting them on YouTube.
When his wife didn’t recognize him anymore, he said he felt as if his heart was ripping apart.
But Mr. Donham, still in his 40s, was being ripped apart in other ways, too. One day, he landed in the emergency room because he thought he was having a heart attack. READ MORE
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As Alzheimer’s slowly progressed and Chris became frailer, their lives narrowed. To explain their painful emotional journey to friends and family, Mr. Donham, who lives in Portland, Ore., began making videos and posting them on YouTube.
When his wife didn’t recognize him anymore, he said he felt as if his heart was ripping apart.
But Mr. Donham, still in his 40s, was being ripped apart in other ways, too. One day, he landed in the emergency room because he thought he was having a heart attack. READ MORE
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What it Means to "Hold Space" for People, Plus Eight Tips on How to Do It Well
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