“From Japanese pop-up magic to Scandinavian storytelling to Maurice Sendak, a gentle primer on the messiness of mourning and the many faces and phases of grief.”
.The Gift of Presence, the Perils of Advice @PARKERJPALMER
“Here’s the deal. The human soul doesn’t want to be advised or fixed or saved. It simply wants to be witnessed — to be seen, heard and companioned exactly as it is. When we make that kind of deep bow to the soul of a suffering person, our respect reinforces the soul’s healing resources, the only resources that can help the sufferer make it through.
Aye, there’s the rub. Many of us ‘helper’ types are as much or more concerned with being seen as good helpers as we are with serving the soul-deep needs of the person who needs help. Witnessing and companioning take time and patience, which we often lack — especially when we’re in the presence of suffering so painful we can barely stand to be there, as if we were in danger of catching a contagious disease. We want to apply our ‘fix,’ then cut and run, figuring we’ve done the best we can to ‘save’ the other person.”
When the #Patient Won’t Ever Get Better @danielalamasmd #hpm #ACP
“In the early moments of critical illness, the choices seem relatively simple, the stakes high – you live or you die. But the chronically critically ill inhabit a kind of in-between purgatory state, all uncertainty and lingering. How do we explain this to families just as they breathe a sigh of relief that their loved one hasn’t died? Should we use the words “chronic critical illness”? Would it change any decisions if we were to do so? Here, I find that I am often at a loss.
I was quiet on the other end of the phone line that night. Was my patient stable? For the moment, she was. But with each event like this one, and there would be more, my patient would move further from the hope of ever reclaiming that life she had had in the fall: living in her own home, watching movies, cooking. I felt that I could see the weeks and months spooling out, a moment of calm, a new emergency. But this wasn’t the time to tell her daughter, not on the phone, not tonight.
And so I told her the truth – one truth, at least. Her mother was critically ill, but stable for the night”.
@CanadianHPCAssn #National #Hospice #Palliative Care Week Busting the #Myths #hpm
National Hospice Palliative Care Week will run May 1-7, 2016 under the theme Hospice Palliative Care First and features an FAQ, Mythbusters, and includes information for health care professionals.
"There are many ways to start the conversation about end-of-life care in Canada. Spreading awareness and education is one of the best ways to advocate for change and ensure that every Canadian has access to quality hospice palliative care.
Visit the official Advance Care Planning website at www.advancecareplanning.ca for resources to share and distribute.
Learn about the integrated palliative approach to care developed by the Way Forward project at www.nationalframework.ca
Use the “Power of 10” materials developed by the Canadian Hospice Palliative Care Association to spread the word about hospice palliative care in your communities. These materials can be found here: www.chpca.net/week
Spread the materials developed for this year’s campaign “Hospice Palliative Care First” found here: www.chpca.net/hpcfirst "
@BreneBrown The Power of #Vulnerability: #Courage, #Compassion and #Connection
"Feel the story of who you are with your whole heart...
Courage to be imperfect...
Compassion to be kind to themselves first and then to others. We can't practice compassion with others if we can't treat ourselves kindly...
Connection - this was the hard part - as a result of authenticity they were willing to let go of who they thought they should be in order to be who they were... fully embraced vulnerability they believed that what made them vulnerable made them beautiful...
to do something where there are no guarantees..."
@BreneBrown on #Empathy. "What makes something better is connection"
"What is the best way to ease someone's pain and suffering? In this beautifully animated RSA Short, Dr Brené Brown reminds us that we can only create a genuine empathic connection if we are brave enough to really get in touch with our own fragilities".
Lessons for the #Living: On #Dying and Dinner Parties @elderlyprograms #hpm
The Sky Isn’t Falling @Speed4Sarah in @brainchildmag on her #diagnosis of #ALS.
“I was spinning, untethered from the person I felt I had once been. A marathon runner, a devoted mom and wife, an independent woman who had never particularly liked asking for help. I was consumed by my sadness and confusion, by my anxieties about what was to come.
And then I discovered other people who were like me. Young moms and dads, people in their 20s who never had a chance to start a family, all of them living with ALS. I found them by writing about my experience, by joining a group on Facebook, and by becoming heavily involved with several nonprofit organizations that raise money for ALS research. My people, it turned out, were not the ones in the senior home who had lived long lives and had much to show for it. My people were the ones who were fighting for their lives, fighting for more time with their children, fighting a disease that we’d been told would certainly kill us–and soon”.
My Gift of Grace. Helping everyone have better conversations about end of life.
"My Gift of Grace is a game that helps everyone have better conversations about end of life. These conversations are challenging, but we can rise to the challenge together, and to prove it, we hold public games in Philadelphia on the final Friday of every month.
The game can be played by families, co-workers, teams, strangers, or a mix of any of these. There are no age restrictions or experiences you need to have before you play. The game adjusts itself to the level of comfort of the players and to how long a group wishes to play.
Get the game at mygiftofgrace.com, or find out about our public engagement work at ourcommonpractice.com "
#Grieving When You’re an #Introvert
"The process of mourning and grieving is hard for everyone, but there are elements of the losing a loved one than can feel especially difficult when you’re an introvert.
As an introvert myself, when I was mourning the death of my parents, so many of the traditional parts of the mourning process felt very invasive to me. For instance, people coming over to my house after the funeral. I had just been taking care of ailing parents and planning a funeral and now I have to have people over? I know that everyone meant well, but having people in my home, some of them I barely knew, felt very unsettling. And then came the inevitable questions, are you going to sell the house, are going to move and what are going to do now?"
Wondering What Caused the #Cancer @nytimes
"I think the question reflects a human desire to revisit events that occurred over a lifetime, and speculate whether a change in course could have avoided an untoward outcome.
In truth, though, except in very rare cases, it is almost impossible to say that a specific environmental exposure triggered a given person’s cancer. The majority of cancers arise randomly, as if thumbing their nose at our collective need to find a cause.
But that doesn’t stop me from trying, during the part of the clinic visit when it’s my turn to ask the questions. And sometimes, I even convince myself that I have uncovered that nugget of truth that explains disease".
MyGrief.ca helps you to understand and work through your #Grief. @VirtualHospice
"MyGrief.ca Because losing someone is hard. MyGrief.ca helps you to understand and work through your grief.
- Confidential
- Access in the privacy of your own home
- Developed by families and grief experts
- Stories from people who have "been there"
- A resource for professionals"
@DianeSAckerman on What Working at a Suicide Prevention Hotline Taught Her About the Human Spirit @brainpickings
“Choice is a signature of our species. We choose to live, sometimes we choose our own death, but most of the time we make choices just to prove choice is possible. Above all else, we value the right to choose one’s destiny. The very young and some lucky few may find their days opening one onto another like a set of ornate doors, but most people make an unconscious vow each morning to get through the day’s stresses and labors intact, without becoming overwhelmed or wishing to escape into death. Everybody has thought about suicide, or knows somebody who committed suicide, and then felt “pushed another inch, and it could have been me.” As Emile Zola once said, some mornings you first have to swallow your toad of disgust before you can get on with the day. We choose to live. But suicidal people have tunnel vision—no other choice seems possible. A counselor’s job is to put windows and doors in that tunnel”.
Important Conversations with Experts in the Field about #Dying and #Death. #hpm
Important conversation about supporting quality of life and the need for universal access to Palliative Care - the comprehensive care supporting individuals and families facing a life-limiting illness from time of diagnosis to end-of-life and into bereavement.
The role of #Social #Workers in #Palliative, #end of life and #bereavement care. #hpm
"Social work is essential to palliative, end of life and bereavement care. Some social workers deliver specialist palliative care social work; many others encounter people who are close to or at the end of their life, or are becoming or are bereaved. Social workers have a great deal to offer".
#Canadian Virtual #Hospice. Information and #Support on #Palliative and #End-of-Life #Care, #Loss and #Grief. @VirtualHospice
"The Canadian Virtual Hospice provides support and personalized information about palliative and end-of-life care to patients, family members, health care providers, researchers and educators."
Observing the Wish to #Die at #Home. #hpm
“We often hear from family members that they find great value in our Guide for Family Caregivers, detailed information on how to handle such common end-of-life symptoms as breathing problems, pain, changes in behavior and sleeplessness. The piece details several signs that may signal a loved one is transitioning from life to death, such as no appetite or urine output, and changes in breathing sounds and patterns.
We encourage people to be a calm presence, to hold the loved ones hand, to call in others who wish to be present, as well as call Hospice for support. Hearing is the final sense to go, so we encourage family members to continue speaking to their loved one, reassuring that everything is all right.
‘What we are trying to do is normalize what they are going through,’ says Joel. Death, after all, is not an aberration but a universal end we all one day meet. ‘We want the family members to know what the very end of life looks like and what they can do when the time comes. What can they do? Literally, just hold your loved one’s hand’.”
Letting #Patients Tell Their #Stories. @DhruvKhullar
“As we acquire new and more technical skills, we begin to devalue what we had before we started: understanding, empathy, imagination. We see patients dressed in hospital gowns and non-skid socks — not jeans and baseball caps — and train our eyes to see asymmetries, rashes and blood vessels, while un-training them to see insecurities, joys and frustrations. As big data, consensus statements and treatment algorithms pervade medicine, small gestures of kindness and spontaneity — the caregiving equivalents of holding open doors and pulling out chairs — fall by the wayside.
But all care is ultimately delivered at the level of an individual. And while we might learn more about a particular patient’s preferences or tolerance for risk while explaining the pros and cons of a specific procedure or test, a more robust, more holistic understanding requires a deeper appreciation of ‘Who is this person I’m speaking with?’
In Britain, a small but growing body of research has found that allowing patients to tell their life stories has benefits for both patients and caregivers. Research — focused mostly on older patients and other residents of long-term care facilities — suggests that providing a biographical account of one’s past can help patients gain insight into their current needs and priorities, and allow doctors to develop closer relationships with patients by more clearly seeing ‘the person behind the patient’.”
What Happens After Now? Being in the #here and #now is what #mindfulness is all about.
"Many of us come to mindfulness seeking relief from the confusing jumble of thoughts that dominate our lives much of the time. So the first gift that mindfulness gives us—after we get accustomed to the shocking simplicity of sitting and doing nothing—is a little bit of peace. We’re no longer as tormented by our thoughts, since as we observe them come and go, no single thought seems to be a big deal anymore. It’s like being at a laundromat watching the clothes tumble in a big dryer. We don’t have to tumble along with the clothes; we can just watch them fall through space."
#Memories of a #Caregiver - Honoring Voices: Walking Alongside The #Caregiver. #hpm
In Part 2 of our "Honored Voices" series, we listen to bereaved caregivers and support professionals and what can be learned from their experience. This video is designed for those who are currently supporting caregivers or those who have experienced the loss of a loved one.