Highlighting the need for integrated Person and Family-Centred Care...
"The results show that there might be a gap between what doctors think is important or disturbing for patients, and what patients really think. Physical, psychological, social and spiritual support is needed at every stage of the disease"
Source: Patients feel psycho-social impact of chemo more acutely than physical side effects. MedicalXpress
Am honoured to volunteer with Camp Erin. It is indeed a remarkable community and one that nurtures capacity in children and youth to grieve the death of a loved one.
"Children and teens ages 6-17 attend a transformational weekend camp that combines traditional, fun camp activities with grief education and emotional support, free of charge for all families. Led by grief professionals and trained volunteers, Camp Erin provides a unique opportunity for youth to increase levels of hope, enhance self-esteem, and especially to learn that they are not alone.
Camp Erin is offered in every Major League Baseball city as well as additional locations across the U.S. and Canada. The Moyer Foundation partners with hospices and bereavement organizations to bring hope and healing to thousands of grieving children and teens each year.
Camp Erin allows youth to:
Source: Camp Erin. The Moyer Foundation
For information on Camp Erin locations in Ontario, please visit: Camp Erin Hamilton; Camp Erin Toronto; Camp Erin Eastern Ontario; Camp Erin Montreal
"Today, as I recall the loss of my own infant son, I think about the one person who did truly comfort me. She arrived at my house with a bottle of fine brandy and said, “This is everyone’s worst nightmare. I am so, so sorry this has happened.”
Then we sat on the lawn and she poured me a drink as she listened to every horrible detail.
As I look back now, I still feel how much her gesture helped me cope through those early days of pain. She didn’t try to fix me or try to make sense of what happened. She didn’t even try to comfort me. The comfort she gave came through her being in it with me.
You can’t fix what happened, but you can sit with someone, side by side, so they don’t feel quite so alone. That requires only intention, a willingness to feel awkward, and an open, listening heart. It’s the one gift that can make a difference."
"...Today, I can say that, of course, my life was permanently changed by losing Eric, but I know it is possible to make a new life that is rich and satisfying — though often tinged with sadness.
Now I find myself going and doing and functioning, and taking joy in life and its challenges. I never believed that would be possible, but I assure you it is. There are still times, especially good times, when the pain of missing Eric stops me in my tracks. But there are good times.
I believe I have grown in my ability to be compassionate and to understand the pain that others may be experiencing. Once you know the pain of excruciating, incomprehensible loss, you can’t un-know it. But when you endure struggle, you can also learn empathy.
I am sharing this because until I was diagnosed and treated with complicated grief — which I had never even heard of before and which 7 percent of bereaved people struggle with — I felt isolated and like my life had no meaning. I hope my story will reach anyone who’s feeling like that and show them there is hope. I even appeared on CBS to spread the word about complicated grief and help others who may be struggling. The Center for Complicated Grief has a website and can be found here."
“Professor David Kissane, who heads the department of psychiatry at Monash University in Melbourne, has developed a family-focussed model of grief therapy to prevent complicated bereavement. A trial published in the Journal of Clinical Oncology earlier this year found the therapy reduced the severity of complicated grief in high-risk families and the development of prolonged grief disorder.
Professor Kissane says bereavement therapy for families is more effective than therapy for individuals when grief is being perpetuated by dysfunctional family relationships. He says the most common family configuration he sees is parents and their children, but for some families it includes a neighbour, grandparents or aunts and uncles.
‘Family centred care is based on the idea that families that grieve together stay together and they heal their grief very well,’ he tells Palliative Matters.”
“One of my favorites was a beautiful comment from Jeannette Brown, a Buddhist, who explained that “rather than make resolutions for grief, every morning and every evening we pray (by chanting, our form of prayer) for the happiness or repose of all of the deceased. We believe that if we continue our growth and pursuit of happiness, our deceased family and friends will continue to become happy as well”. I love that sentiment so much, but as someone who just barely manages to commit to a shower every day, resolutions admittedly help keep me on track.
Whatever is right for you, grief resolution or no grief resolution, we hope you find the list of ideas… helpful in thinking about how you will grieve in the new year.”
"After someone dies, you may find that your grief surfaces again and again. Often this seems to happen ‘out of the blue’ and it may feel like an unwelcome intrusion. You may have been enjoying yourself one moment and then be in tears the next. You may also notice that certain days, holidays or public events are more likely or return..."
"Because the holidays are tough for all of us, the least we can do are share our tips and tricks with one another to make the season just a smidge more tolerable." ~What's Your Grief
"It means that we are willing to walk alongside another person in whatever journey they’re on without judging them, making them feel inadequate, trying to fix them, or trying to impact the outcome. When we hold space for other people, we open our hearts, offer unconditional support, and let go of judgement and control."
Grateful for hosting and to all in attendance honouring connections.
Legacy Art Workshop Art Gallery of Burlington for the launch of the Compassionate City Charter - Burlington via @snapdBurlington
"Children's Grief Awareness Day is designed to help us all become more aware of the needs of grieving children — and of the benefits they obtain through the support of others. Children's Grief Awareness Day is an opportunity to make sure that grieving children receive the support they need.”
"Over a cup of coffee, a little cake — and sometimes beer — people meet to talk about death and fear of dying in the death cafe..."
Listen to this episode of The Current for more.
"My husband and I were always transparent with the kids. They saw me cry; they saw me get scared. We used words like died rather than passed away. Now I see the kids as these amazing, compassionate, clear-eyed people who know how to comfort others and who have made space in their life for death. That is so unusual in our culture. I want my kids to have a relationship with the fluidity of life—with the fact that sometimes people get sick and sometimes bad things happen, and to know that within that there is also grace, there’s also beauty, there’s also comfort. Because if you go down into the depths, there is treasure there. Cancer still sucks, but there’s also profound connection. It’s the privilege of allowing yourself to participate in the full experience of humanity, which includes grief and sickness and death. If you don’t look at [those things], you’re not living...
There’s this assumption that because you got better, you did it courageously. But that’s not my story. I didn’t “warrior” my way into getting better. It was not my achievement; it was science’s. Whenever I hear someone say “I beat cancer,” it just feels so disrespectful to others, such as my friend Debbie. It divides us into winners and losers. I know it’s not deliberate. We want to make meaning. We want to make sense of it. But you see how random [survival] is. I have known people who were healthier than me and younger than me who tried, I think, harder than I did to fight their cancer but who didn’t live…
The story is about losing something—yourself, people you loved, what you thought you knew about the world—yet still being whole. Butterflies are all about transformation. I try to see the beauty in all the damage. I try to see the beauty in all the ruin. And I definitely see the love."
"There is no way to escape losing a sense of who you once were. And after a year (or two), you wake up from this transformation and realize that you were not actually dying; you just felt like you were. And then you must make a choice. One option: You can give into the horror of it all and retire to bed. No one would blame you; it is a tempting alternative that lurks at the back of my brain from time to time even now. The other option is that you take the pain and harness it to do things you could not imagine ever possessing the strength to accomplish. Being around children like my daughter will teach you the very meaning of life."
“The Taylors hated the stealth that encased the disease, how it was treated like an unmentionable cousin. They wanted no part of that. Ms. Taylor decided that she would not show herself as some spackled-over person. “It was my decision to let the disease be alive in my life,” she said. “You don’t have to just throw in the towel.”
She didn’t know the order of whom she would tell, nor how to phrase something so shackled with frightful connotations. Your life becomes a script. Alzheimer’s, she knew, leaves its heavy imprint on everyone…
Just recently, Ms. Taylor had discovered the website To Whom I May Concern, the creation of Maureen Matthews, a psychiatric nurse. It arranges for people in the early stage of dementia to act out plays telling what it is like for them. Ms. Taylor clicked on some videos, at once felt the common spirit. The person saying, ‘People take that diagnosis and assume that you are now officially irrelevant.’ And: ‘It’s not that we want people to treat us as if we have Alzheimer’s. But at the same time we want people to recognize that we have it. Confusing, right? Welcome to our world.’ And: ‘The end stage is our future. But not today’.”
“There is no schedule for when you should feel certain emotions, or be over others. Choose to stand up for you and the rest of your life, and choose to move on. You don’t have to figure out how you’re going to get through the rest of your life. Just focus on staying in the game and moving forward now. It is normal to cry and be depressed, but you need to keep putting one foot in front of the other.”
“If you’re feeling sorry for me, please, don’t. During the hours I was tossed by this unanticipated wave of sorrow, I knew I could tolerate my sadness. Time has taught me that these waves come — and then go.
Perhaps more surprising, even as I lay curled in a soggy heap, I felt grateful for this wallop of forever-after grief. It provided reassurance that my sister hasn’t faded to a beloved, but distant, memory. Instead, for those hours, Pooz was once again a vivid presence in my mind and heart. There was pain, yes, but there was also the solace of knowing that she is still very much with me.
I count that as a blessing. Amen.”
“This early interaction with death is overwhelming, but a pivotal point for learning. This grief acts as a blueprint for not just how these young people process death, but their approach to the many challenges they will face in life.
If you are struggling to help a teenager with their grief, know that your concern is evidence of your care. There is nothing that can make this not awful, so don't make your aim to stop the tears, but rather to support them in what they need. Respecting their needs shows them that you believe in their ability to know what's best for themselves. You're doing good.”
“Camp Erin Hamilton is an annual three-day camp experience offered at no charge and facilitated by professional staff and trained volunteers of the Dr. Bob Kemp Hospice and Bereaved Families of Ontario - Hamilton/ Burlington. The camp is for children ages 6 to 17 who have experienced the death of someone close to them. Camp Erin Hamilton combines a traditional, high-energy, fun camp with grief support and education.”
“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.”
