"We’ve all been told we should live each day as if it were our last, but how many of us truly can? Life is a journey. We’re in the middle of it. When we hear the news, we know — for the first time really know — our journey will end. What do we want from our doctors at that moment? What do they want from us? No matter where we sit, we are infinitely far apart and impossibly close. They have given us something no one else on earth has ever given us before, and we are transformed."
A New Vision for Dreams of the #Dying. #eolc #hpm
"Dr. William Breitbart, chairman of the psychiatry department at Memorial Sloan Kettering Cancer Center, who has written about delirium and palliative care, said that a team’s response must also consider bedside caregivers: “These dreams or visions can be interpreted by family members as comforting, linking them to the legacy of their ancestry.
But if people don’t believe that, they can be distressed. ‘My mother is hallucinating and seeing dead people. Do something about it!’ Dr. Breitbart trains staff to respect the families’ beliefs and help them understand the complexities of delirium.
Some dream episodes occur during what is known as 'mixed-state sleep' — when the boundaries between wakefulness and sleep become fragmented, said Dr. Carlos H. Schenck, a psychiatrist and sleep expert at the University of Minnesota Medical School. Jessica Stone, the teenager with Ewing’s sarcoma, spoke movingly about a dream of her dead dog, Shadow. When she awoke, she said, she saw his long, dark shape alongside her bed.
Dr. Banas, the neurologist, favors the phrase end-of-life experiences. 'I try to normalize it for the family, because how they perceive it can push them away from that bedside or bring them closer,' she said."
Quality of #Death. My Journey with Stage 4 Breast #Cancer.
"We shouldn’t be afraid to talk about what a good quality of death is while balancing a good quality of life. I believe a good quality of life relates more to the application of medical intervention or lack of medical intervention. For me, a good quality of death relates to the amount of grace and love that surrounds me. I am hopeful, it will fuel empowerment and strength as I face my death. I want to find grace and love in myself and the people sharing this journey with me".
"Before You Know It Something's Over". The #Death of a #Parent.
"I want to talk to you about how it feels to spend your whole life grieving, to have your ghosts precede your actuality, to feel that nobody you know will ever truly know you because they never knew him. To recycle fourteen years of material like a song that never gets old, because you’re just so frustrated that there’ll never be a new album, even though everybody else is probably sick of the song and likes your new songs so much better. I want to talk to you about how I got free".
#Denial is Tricky. On #Being. @SharonSalzberg
"At our core, we assume that hiding from pain will somehow keep us from feeling it. Of course, trying to shut our minds off to suffering effectively ensures that it will persist, in some form or another…
Denial is tricky. Sometimes, we think we are not in denial because we recognize the existence of an uncomfortable feeling, but still turn away from it. Our denial voice might say, “Of course I know I am going to die, but why think about it?”
We need not dig deep into all the possible physical maladies we might experience when we die — that’s not the point of opening up to discomfort. The larger point is that each moment becomes immensely powerful when we strip away various denials. We can recognize our fear of death, of change, of letting go of our attachments, and feel the discomfort of that recognition. By being honest with ourselves about our various forms of suffering, we don’t feel more suffering — we create freedom".
#Dying is About #Living. ~ Metastatic Me
"One lives with a terminal illness by taking each day as it comes. In the beginning, I would tell myself that I wasn't going to die that day, and that I wasn't going to die the next day or even the next week. After time, the days started to accrue. Slowly but surely, plans were made; goals were set.
And so I learned that dying is really about living.
It's about taking each day for what it is, piecing together something good in it, and moving on to the next day. It's about planning for the future, while simulatenously planning for a future without you. It's about understanding the limitations that being sick puts on you, accepting those constraints, and doing things anyway. It's about simplifying your day to day life to enjoy more time to do the things that bring you joy".
The Geography Of #Sorrow. Francis Weller On #Navigating Our #Losses
"In his book Weller invites us to view grief as a visitor to be welcomed, not shunned. He reminds us that, in addition to feeling pain over the loss of loved ones, we harbor sorrows stemming from the state of the world, the cultural maladies we inherit, and the misunderstood parts of ourselves. He says grief comes in many forms, and when it is not expressed, it tends to harden the once-vibrant parts of us".
Helping #Children #Cope with #ALS
"When a family member has been diagnosed with Amyotrophic Lateral Sclerosis (ALS) children have many questions and concerns about the person they know and love. We offer these guidelines as a tool to assist your family when talking or sharing information and personal feelings about ALS. You may also want to share this information with other important adults involved in your children’s lives such as teachers and coaches".
"How Long Have I Got Left?" ~Dr. Paul Kalanithi
"I began to realize that coming face to face with my own mortality, in a sense, had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live".
"My Marriage Didn’t End When I Became a Widow". ~ Dr. Lucy Kalanithi
"One night recently, alone in bed, I read “A Grief Observed” by C.S. Lewis, and I came across the observation that “bereavement is not the truncation of married love but one of its regular phases.” He writes that “what we want is to live our marriage well and faithfully through that phase, too.” Yes, I breathed. Bereavement is more than learning to separate from a spouse. Though I can no longer comfort Paul, the other vows I made on our wedding day — to love Paul, to honor and keep him — stretch well beyond death. The commitment and loyalty, my desire to do right by him, especially as I raise our daughter, will never end".
Lucy Kalanithi is an internist at Stanford University’s Clinical Excellence Research Center. She wrote the epilogue to her late husband Paul Kalanithi’s forthcoming book, “When Breath Becomes Air.”
How one couple’s loss led to a push for psychological care for kids with cancer.
"The standards say families should be educated early on about palliative care and its role in helping to “reduce suffering throughout the disease process.” And they say children with cancer should receive “developmentally appropriate” information to prepare them for the treatments and procedures they will undergo".
Supporting Grieving Preschoolers. The Dougy Centre.
"Explaining death to a young child can feel overwhelming and intimidating. These tips may help you navigate how to talk with and support grieving preschoolers after a death".
Op-Ed 'I have terminal cancer. And I'm dying in a yearish.'
"I understand that my infinitesimally tiny piece in all this is coming to a close. Letting go will be difficult, but death has its own clock. So I will take solace in the idea that, once gone, I may come to occupy a small space in the hearts of the people who loved me most. And perhaps from there, I will be a source of a few simple reminders: Time is limited. Life is miraculous. And we are beautiful".
"You don't get over bereavement, you get on with it": Mumsnet.
"Have the boys 'got over the worst of it'? Who knows? We take every day as it comes. We are on a journey that takes us on a bumpy and unpredictable ride, with little in the way of helpful signage. Just because we have faced a huge trauma, does not mean that we are exempt from facing further difficulties en route".
Words to Live By...
"There’s an irony about end-of-life conversations. When done correctly, they’re really not about the end at all. In fact, they are probably more about life than any other conversation you’ll ever have".
The Year I Ran Away from Christmas: A Mother’s Perspective on Grief and the Holidays.
"I have no need to run away during the holidays anymore. The other day my daughter, now a young woman, reminded me that Christmas is her favourite time of the year. I smiled and said, 'It’s mine too’."
Click the image above to read more about Judy's experience.
Getting through the holidays.
"The pressures around the holidays can be even more challenging after the death of a family member".
Click on the above image for tips that may help, as well as a Holiday Plan Worksheet to provide some guidance.
How not to say the wrong thing.
“Draw a circle. This is the center ring. In it, put the name of the person at the center of the current trauma... Now draw a larger circle around the first one. In that ring put the name of the person next closest to the trauma... Repeat the process as many times as you need to. In each larger ring put the next closest people. Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. When you are done you have a Kvetching Order.
Almost nobody would complain to the patient about how rotten she looks. Almost no one would say that looking at her makes them think of the fragility of life and their own closeness to death. In other words, we know enough not to dump into the center ring. Ring Theory merely expands that intuition and makes it more concrete: Don't just avoid dumping into the center ring, avoid dumping into any ring smaller than your own.
Remember, you can say whatever you want if you just wait until you're talking to someone in a larger ring than yours.
And don't worry. You'll get your turn in the center ring. You can count on that".
Good Grief: Healthy Ways To Help A Child Mourn Their Sibling. ~Crossroads Hospice
"Few things are as powerful as the bond between brothers and sisters. The connection can often seem unbreakable, until tested by tragedy. Without a doubt, when a child loses a sibling, it can prove a very difficult journey. But with love and support, a child can weather this journey in time.
A guiding presence ensures they process and mourn in a healthy way. While each child’s needs are unique, all parents and guardians can keep these tips in mind when discussing the loss of their sibling".
Click on the photo to access resources on this topic.
Never Bottle Things Up. ~Lily's Story
"Lily Nash's mum, Claire, died only four months ago from breast cancer. Since then, Lily, aged 10, has been meeting with Esther Gwynne once a week for bereavement counselling”.
Click on Lily's photo to read more as she shares her story...