|
"We thought that hope was the best gift we could give to her, and to ourselves. Mainly, we were just terrified to talk about or face the prospect of her dying".
Wow! These words say it all. People are so terrified to talk about dying, that they bright side terminal illness'. Death is not a failure or wrong, it's natural and normal process of living. Let's give life, and death, dying, and grief the dignity they deserve, and start having necessary conversations now, even if young and healthy! HuffPost UK Dina Gachman When my mum was diagnosed with stage IV colon cancer in the spring of 2015, my first instinct was not to sit her down and talk about her end of life wishes. My first instinct was to scroll one year into the future on my iPhone calendar and type in “Mum Beats Cancer Party.” Despite her diagnosis, my sisters and I decided that intense, relentless hope was our only path forward. As I write in my book So Sorry For Your Loss, that future calendar date came and went, and no party ever happened. My mum spent nearly four years enduring chemotherapy and fighting with all her might to live, so how could we possibly bring up a conversation about hospice care? What kind of cold hearted daughters would we be to ask her if she wanted to die at home or in a hospital? We thought that hope was the best gift we could give to her, and to ourselves. Mainly, we were just terrified to talk about or face the prospect of her dying. I interviewed palliative care physicians, grief counsellors and a death doula for my book, to get their perspective on these end of life discussions that are so painful to have with someone you love. One thing that struck me was that so many of them said that it’s easier to have these talks long before a loved one is sick, so that you can have a conversation that’s not weighted down by so much fear and anxiety. In the United States, where I live, and in the UK, grief and death are not our favorite cocktail party topics, so we tend to avoid them altogether, until we’re forced to confront them. For us, that confrontation happened when my mum went into the hospital in the fall of 2018. Her colon tore and the physicians told us there was nothing left to do. So there we were, my father and my sisters and myself, facing bureaucracy and paperwork and horrible decisions in the midst of our deepest grief. Not an ideal time to make smart choices. If we’d had these conversations long before my mum was sick, maybe it would have made those early days of losing her just a tiny bit less wrenching. I’ll never know. What I do know is that while I was writing So Sorry For Your Loss, I told my healthy, young(ish) husband that we needed to sit down and talk about our end of life wishes. I informed him that I don’t want our son, who is an only child, to feel guilty for putting me into hospice care instead of bringing me home, where my son would likely shoulder the majority of the caretaking. Having that conversation when someone’s life is actually hanging in the balance would not be as easy as it is now. I don’t love the conversation, but I do believe that it helps to have it early, and to be as clear about your wishes as possible. It won’t lessen the blow of loss, or make things easy, but it could make them just the smallest bit easier, and when you are in the throes of grief, that is a gift. A study conducted by The Nuffield Trust and Hospice UK found that in 2020/2021, hospices supported about 300,000 people in the UK. Some people I’ve spoken to said they had positive experiences with hospice care, and the nurses we encountered were kind. It’s just that caring for someone you love deeply as they die is a pretty traumatic experience. As I was researching my book, I interviewed Liz Hamel, vice president and director of survey research at the Kaiser Family Foundation in the US, and she said of at home hospice, “It’s harder than people think it’s going to be, and people are not prepared.” I would say that for my family, that is an understatement. Hospice, for us, was like being tossed into the running of the bulls while being handed a paper that says ‘YOU ARE RESPONSIBLE FOR ANOTHER HUMAN LIFE – GOOD LUCK AND DON’T SCREW IT UP!’ Only much, much scarier. Hospice, death and end of life issues are not easy things to talk about, and I wouldn’t recommend bringing them up at every cocktail party you attend. But bringing them up with loved ones before anyone is sick is something I would highly recommend, though, because it makes the discussion that much less fraught. I’m sure my husband doesn’t love it when I say, “OK let’s talk about how you want to die!” but in the end, opening up those talks now will hopefully ease a little bit of our grief in the very distant, oh so far away future. Dina Gachman is an award winning journalist, a Pulitzer Center Grantee, and the author of the new book So Sorry For Your Loss: How I Learned To Live With Grief, and Other Grave Concerns.
0 Comments
‘People want to shake it out’: dance away the tears at a ‘grief rave’ in a pink disco kiosk7/24/2023 There are many ways to help process the emotions of grief. This article is just one more example that there is "no one way to do grief".
The Guardian - London artist Annie Frost Nicholson is touring her Fandangoe Discoteca dancefloor to help people process bereavement This summer brings a new way to deal with grief. It’s not a helpline or a new antidepressant – instead artist Annie Frost Nicholson has created a disco where you can dance away your existential pain. The Fandangoe Discoteca, a brightly coloured kiosk whose design is inspired by De Stijl and postmodernist architect Ettore Sottsass and which holds up to eight dancers, arrives at London’s Canary Wharf this month before touring the UK and Europe over the summer. As well as DJ sets, there’ll be meditation and yoga workshops, dance classes and “grief raves” where clubbers can request tracks which remind them of absent or lost loved ones. A new start after 60: ‘I became a powerlifter at 71 – andI’ve never felt so good about myself’“ It’s a non-traditional way of accessing the complex, universal subject of grief,” says Nicholson. “I like to find a hook to help people access their feelings without being prescriptive.” Inside the mini disco, which is touring the UK and Europe this summer. Photograph: Joe ClarkThis mini disco is a collaboration between Nicholson and the Loss Project, a social enterprise focused on ways of processing grief. It’s the artist’s latest work looking at ways to deal with grief in various forms – bereavement, climate grief, political grief and mental health issues. The artist has made uplifting art about tragedy since she lost most of her family in 2011. Her mother, sister and sister’s partner were killed in a helicopter crash while celebrating her sister’s birthday with a sightseeing tour around New York. Her father survived the accident, but he had terminal cancer and died a few years later. For some time after her loss, Nicholson couldn’t make art at all and worked as a teacher. Then she invented an alter ego that let her explore her grief. As the Fandangoe Kid, she made graphic public art, and in 2021 took an ice-cream van – the Fandangoe Whip – around the UK to serve therapy, workshops and sorbet to the public. When she took it to New York in the summer of 2022, she held the first grief rave and found how much people wanted to dance through their feelings. “Over the past few years we’ve been listening to public ideas about grief,” says Nicholson. “Post-pandemic, people were desperate to share their experiences and talk – words were falling out of their mouths. Now there’s a real shift to wanting to shake it out.” Dance is used in death rituals around the world, such as in Māori, Yoruba and Jamaican cultures, but cathartic movement doesn’t feature in traditional British approaches to grief. “The UK has changed in terms of being more open about grief, but it remains stigmatised,” says Carly Attridge, founder of the Loss Project. “Many people tell me that after a bereavement friends or relatives ignore them because they don’t know what to say, so they avoid the situation, which can be very isolating. Using the arts, podcasts, blogs, dance and even boxing has shown me that there are many faces of grief and also a desire to understand grief in different ways.” The dancefloor can be a site of solidarity, repair and even healing Emma Warren, author Emma Warren, author of the dancefloor history book Dance Your Way Home, had recent experience of death and dancing when a friend died suddenly in his early 30s. “His parents are Jamaican, and after the church service and burial, there was a DJ and dancing. It struck me as really sensible. Taking to the dancefloor after such a long, painful day offered hope.” She says that dance is undervalued in British culture. “Improvised dance – where you just move to show how you feel – improves divergent thinking and the ability to solve problems. But we generally don’t consider ordinary dancers who aren’t particularly good to be valuable even though the dancefloor can be a site of solidarity, repair and even healing.” The Fandangoe Discoteca will also be a wake for the Fandangoe Kid. Nicholson has decided this will be the last project using the moniker – which came from a childhood family nickname. From now on, she’ll create art as Annie Frost Nicholson. Frost is her mother’s maiden name. “I introduced the alter ego so I could navigate everything that’s happened in the last 12 years,” says Nicholson. “But I don’t need to hide now. I’m not afraid of the depths any more.” Openly engaging in EOL (end-of-life) conversations can be daunting. But learning more about the process, and what possible things to say, can be helpful. Read more below.
BY KATE FAVARO - Hospice of St. Lawrence Valley There are some conversations most people dread having. Whether it’s an excited ten-year-old asking “where do babies come from?”, a heartbreaking “it’s not you, it’s me” speech, or telling a family member “no, I won’t lend you money, again”, there is frequently a sense of unease around these topics. Another commonly avoided conversation, one that people will go to great lengths to avoid, is the plan for when they get seriously ill and die. Talking about your eventual death, or the death of a loved one, is difficult for many reasons. First, we are a superstitious bunch. What if talking about death makes happen? (We talk about winning the lottery and quitting our jobs but I’ve yet to see that come to fruition for anyone I know personally.) Talking about death and preparing for it does not cause it. Others conclude that it can bring up a lot of questions, maybe reveal some skeletons in the closets, and potentially create tension among family members. Perhaps the biggest reason we avoid this conversation is because we simply don’t know where to start or what to expect. Hospice of St. Lawrence Valley offers the following suggestions: • Know the “why.” Why does this matter to you? Why does it matter now? Why/how will it help the people you’re talking with prepare for your death? Focusing on the purpose for the conversation can help keep family and friends focused on the bigger picture and the benefit to planning for an illness and death. If the “why” is because you’re facing a serious, life-limiting illness be honest with them and talk about that too. • Come prepared. Getting an idea of what goes into advanced planning yourself can lower your own anxiety and make the subject easier to talk about. Comprehensive advanced planning will include looking at multiple areas of your life including but not limited to: health care decisions, legal documents, financial information, online presence, funeral and burial plans, and legacy. Not sure where to start with learning about this process? Hospice recently released their Traveler’s Guide to Life Road Maps for the Journey’s End advanced planning guide, which you can learn more about on our website. • Set yourself up for success. Conversations about end-of-life planning are not one and done. If you’re working to complete a Traveler’s Guide to Life Road Maps for the Journey’s End advanced planning guide, recognize this should be an ongoing conversation with family and friends. Go into this project knowing it is not something you sit down and complete on a rainy Tuesday afternoon. This can help keep you from getting overwhelmed and discouraged. As an aside- if you try to have these conversations with friends and family and they refuse to participate, do the work anyway and be sure to tell them where they can find it. These conversations are hard, without a doubt. They make you and your loved ones imagine a world without you in it- an awful but eventual guarantee. However, the beauty of having these hard conversations is they give you the gift of time to share with your loved ones. When you get to the end of your life, having a plan in place, you can focus on what really matters. Spend time sharing your favorite cookie recipe, laughing about good times, and saying goodbye rather than worrying about what funeral home to use or where the will was kept. For more info on advanced care planning and getting the conversation started visit www.hospiceslv.org or call 315-265-3105. Kate Favaro is Bereavement Coordinator & Volunteer Manager with Hospice of St. Lawrence Valley. THE SAGE CONNECTION I firmly believe in lifelong learning. But I must confess when Danny Stusser asked me to go to a Death Café to get material for my column, I was dumbstruck. What on earth is a “Death Café”? For that matter, what in the world is a “Death Doula”? And what was I thinking when I agreed to go to one? A chat about life's end over coffee and cake does not sound like anything my friends and I would discuss when we get together for a visit. I had absolutely no clue what to expect when I entered the Death Café being held at the South Sound Senior Center in Olympia. What I found was a delightful group of seniors, and a death doula by the name of Glenn Harper, talking about a subject we cannot escape and is too often avoided. The Death Doula or End of Life Doula: Glenn Harper is the Death Doula leading the Death Cafes at the Virgil Clarkson Senior Center in Lacey and Olympia Senior Center. He describes his title and role in this way; “During the pandemic, I took and graduated from a four-month online end-of-life doula course. Many people are familiar with a birth doula, which is a person who guides new mothers through preparation for the birth process. More recently, the term death doula, or end-of-life doula, has been used to refer to people who assist people who are dying, and their families, to navigate the challenges that accompany the transition at the end of life. This can be anything from assistance with paperwork such as living wills, do not resuscitate orders, funeral arrangements, respite care for the terminal patient to allow family caregivers a break, memorial celebrations of life, etc. Often, a third party can help navigate some of the challenges that come with the end of life with a more objective and clear-eyed view than people closer and more emotionally charged. Having said that, the dying person’s wishes should always be of uppermost importance. The Death Café: The Death Café I attended could seat 12 comfortably and was pretty full when I arrived, but as time wore on, more people arrived and more chairs were added. We all introduced ourselves and talked a little bit about lost loved ones and the emotions, guilt, and fear, death and death discussions can bring to mind. Another common denominator was the fact so many of us had family members unwilling to discuss our end of life, period. Being seniors that had all lost loved ones, end-of-life options were discussed and ranged from the natural composting burial allowed in our state to common services like cremation and burials, along with different rituals observed by different cultures and beliefs. As more stories were shared, more questions arose and tips were offered, like always use the legal form for a Do Not Resuscitate (DNR) and follow the legal requirements for this and other forms. Another question: the difference between a medical power of attorney and a standard power of attorney? Another question concerned whether you would want lifesaving steps to be taken if you were found unconscious or not breathing. Everyone seemed familiar with the recommended placement of your DNR on the refrigerator so first responders could quickly find your wishes. But, as one guest asked, what if you are not home when this happens? Another guest informed us you could put DNR on your phone under your emergency contact. Cards and bracelets, similar to the medical alert type, are also available. I found several options on Amazon for DNR wallet-size cards, medical alert-type bracelets and refrigerator magnets No one who spoke seemed to fear death itself but did not want to linger in pain. The Death with Dignity Law was touched upon, but tabled for another day as time began to run short. All in all, it was a very comfortable and informative gathering and I would attend again. |
Archives
September 2023
|
RSS Feed