Giving comfort: Candles

Our immediate environment can affect our mood and outlook. Being confined to a particular place – especially when it is not of our choosing, such as a hospital room – can be challenging for all who spend time there. It is important to bring comfort where possible.

Candles provide soft and warm light in a room, and are usually associated with times of happiness and relaxation. Not only soothing, the next generation of candles are ideally suited to small and shared spaces and are amazingly convenient to use. Flameless candles that have flickering LED ‘flames’ emit no smoke, no overpowering scent and pose no risk if forgotten. They can be activated or dimmed from bed with a remote control. You can find flameless candles that have natural wax shells, but if you have a preference for traditional candles with a burning wick, make sure they’ll be well received. A person’s sense of smell may be more sensitive due to illness or treatments and some institutions will have rules about candles.

Annie Bolitho, End of Life Companion

In supporting people as they navigate the end of life, Annie brings a calm and practical approach. She can help facilitating family discussions, planning for end of life, and organising the funeral. She is an excellent MC.

Annie helps her clients create what they want as end of life experiences. Her long experience means she makes things easier through meeting information needs and speaking directly about things that will be needed.

As a facilitator Annie helps make difficult conversations easier. This way wishes are fulfilled and fitting arrangements made. She holds the space comfortably for both individuals, families and communities in sad and testing times.

In her role as an educator, Annie facilitates workshops on death, grief and loss for health and social work professionals, and convenes regular Death Cafes in Melbourne. Annie’s passion for making the time of death and bereavement easier led her to establish Kinship Ritual, offering bespoke funerals and end of life planning.

Meeting Annie in person, I could see that her personality and demeanor are just as important as her credibility and knowledge to the roles she takes on. I felt instantly comfortable as she patiently and genuinely listened to my ramblings in response to her pertinent questions, and I was grateful for the nuggets of wisdom she offered as we chatted.

Annie publishes a blog and newsletter, and she’s recently distilled many of her insights into a book ‘Death, a Love Project: a guide to exploring the life in death and finding the way together.’ She hopes it will help people to think a little differently about death and guide them to meet it better prepared. The book’s publication is currently being crowdfunded via a ‘Death, a Love Project’ Pozible campaign so you can help to make it happen!

Podcast: Human/Ordinary

Sam Loy (2017 – present)

The Human/Ordinary podcast is inspired by the belief that all people are equal in our normalcy and that each of us have extraordinary stories to tell. Through the sharing of a wide variety of people’s stories, this independent Australian podcast beautifully explores what it means to be human. Of particular interest is the Headstone Series, exploring how we die and how we live with our mortality. Each of the storytellers are allowed to shine, with their fascinating experiences woven into a well structured and informative presentation, delivered with eloquence and genuine warmth. It’s sometimes hard going because of how amazing the stories are, but listening is highly rewarding!

Some new producers have recently joined the team and they are currently seeking public support via a crowdfunding campaign. Human/Ordinary is on Facebook and Twitter, and and the podcast is available via heaps of different services listed on the website.

App: WeCroak

The app designed to help you find happiness by contemplating your mortality will send you invitations to stop and think about death. The WeCroak app is inspired by a Bhutanese folk saying: to be a happy person, one must contemplate death five times daily.

To assist you in enjoying life more, this mindfulness tool will offer up quotes about death from a poet, philosopher, or notable thinker at unpredictable times in your day, just like how death arrives.

Diligently opening the notification at random times reveals a contemplative message that might make you nod in agreement, have a chuckle, or even receive a small dose of perspective to help you focus on the important stuff. It’s surprising to find that five messages seems a lot. WeCroak could become yet another thing giving you that feeling you’re missing out for lack of time, because if you don’t take the opportunity to open the message before the next one arrives, you can’t backtrack. I guess there’s something symbolic about how ephemeral the quotes are, but over time it made me feel like my phone was demanding I capture the fleeting wisdom it had to share or miss out. Who am I to question ancient wisdom, but I feel like two quotes would be a little less oppressive!

Many quotes don’t actually relate to mortality at all, but simply aim to inspire reflection. Beware that amidst the loftier quotes are some rather grim statements of facts from places like hospices that may not be for everyone, particularly the recently bereaved.

You can support the cause by submitting a favourite quote of your own, becoming a patron and supporting their podcast series of expert authors talking about life. Otherwise it’s a trade of AU$1.49 for your five daily reminders of your death.

Book: We’re all going to die

Stefan Hunt (2017)

This simple book is a lovely thing. Its textural material cover with white screen printing give it a retro crafty feel and its thick matte pages are reminiscent of Little Golden Books. We’re all going to die hits its mark as a ‘children’s book for adults.’ It started a a poem, penned by the author / illustrator in a time of crippling anxiety. Stefan Hunt took comfort in life’s only guarantee and wrote a short Dr Seuss-like story about the day that Death came knocking. The words are lighthearted and funny, and paired with quirky minimalistic illustrations that encourage the reader to live life to the fullest.

The book naturally became a short film (Hunt is a film maker) with a poignant message: Fear Less and Live More. You can watch it here. A subsequent Kickstarter campaign to fund an immersive arts festival was a huge success owing to the universal theme and Hunt’s irresistible mix of vulnerability, eloquence, and humour. The festival has now gone to the US and toured around Australia and the Caretailors crew were excited to recently attend one of the sold out nights in Melbourne. Much more about overcoming fears than about death, the participatory evening was true to the WAGTD mission, with thought provoking but lighthearted activities that supported the audience to consider embracing more uncertainty.

The book might not change your life, but you’ll be glad to have it. And its purchase supports an artist with a passion to positively impact others. You can buy the book online, and do take a moment to browse through the videos and associated projects on the site.

Katrina Spade

Changemaker

Founder & CEO, Recompose

There has been a big win for alternative death care in the US in recent weeks, with human composting poised to become available. A bill was passed in the Washington State House of Representatives to legalise two sustainable death care options, alkaline hydrolysis and “natural organic reduction” (also known as “recomposition”). Once the bill receives the sign off from the Governor, Washington will become the first US state to allow human remains to be reduced to soil through controlled composting.

While it took a wide ranging effort from people willing to testify, religious leaders writing letters of support, political advocates and lobbyists, and everyday people who actively made their wishes known to their legislators, the main push came largely from Recompose.

This human-composting Public Benefit Company is headed up by Katrina Spade who has long championed a reconnection with death, and encouraged meaningful participation by everyone in this natural part of life. Through Recompose she has developed a new model of death care that facilitates a deeper connection with nature and invites a more conscious relationship with death. The model also includes a patent-pending system for body disposal that has been developed over years of research to transform bodies into soil.

Natural organic reduction is defined as the “contained, accelerated conversion of human remains into soil” – a process that takes about 30 days and results in soil that can be collected for use by loved ones. With over 7000 people on the Recompose mailing list, there is much interest in an ecologically friendly and productive alternative to cremation or burial. Using one eighth of the energy of cremation, there is a potential savings of 1.4 metric tons of carbon for every person choosing this method.

Reconnection to the basic human act of caring for a loved one’s body is an important part of the vision that Recompose has for its services, and families are encouraged to participate in the care and preparation of the body (alongside staff).

For further information about the approach read this 2018 Endwell interview with Katrina Spade on Medium or watch Recompose team member, Caitlin Doughty, talk about the ‘burial practice that nourishes the planet‘ in a 2016 TED talk.

Read news stories on CNN and The Guardian for more information about the vote.

Recompose is on Facebook and Twitter.

Join us – become a Caretailor

Thanks for your interest in Caretailors.

Caretailors seeks to better connect specialised service providers with people near the end of their lives (and their loved ones). We’re currently doing heaps of research and we’d love your feedback to fine tune how we build something truly useful.

If you work with clients with the special needs that come with life limiting illnesses or advanced age, you can help guide us to best support your work.

We’d love you to fill out the online survey to provide valuable information about your work (it takes about 15 mins). This will also allow you to list in the Caretailors directory (free of charge).

Alternatively, there’s a simple form to quickly register for the Caretailors directory.

Caretailors will whip up your profile for the directory and contact you soon!

End of life doulas

The names that describe end of life doulas are as diverse as the role itself: death consultant, end of life carer, death attendant, death doula, death midwife, soul companion, end of life practitioner, or transition guide.

You might normally associate the term ‘doula’ with births, but their guidance can be just as impactful at the other end of life. It makes sense to have learned companions who can guide you through unknown territory at both ends of the mysterious journey. For thousands of years the family and community of many cultures have supported people to die at home. In recent decades many of us have experienced a stark medicalisation of dying, with the deaths of the majority of people taking place in unfamiliar sterile environments with their family reeling from information and emotional overload.

End of life doulas support the dying and their loved ones, bringing a wealth of knowledge about living, dying and grief. They can offer information and options to assist with decision making, and help people to achieve their final wishes. As well as practical knowledge, they bring compassion, encouragement and empathy to help families feel safer and less alone during the journey to their loved one’s death and beyond.

End of life doulas can assist people to reframe, if not embrace death as an inevitable part of life, and prepare them emotionally and spiritually for death. They can share their knowledge of the dying process which can allay fears of the unknown, and empower family members to participate in the creation of the death that the dying person had wanted.

Available services can range anywhere from a quick phone consultation to weeks of live-in care. End of life doulas bring a holistic approach to the home, aged care facility, hospital or hospice, and can work alongside the medical professionals and palliative care specialists who may also be involved.

Typical services can include arranging care or coordinating services, assisting with paperwork, listening and facilitating conversations, or helping to plan a person’s final days. What might be needed is a decluttering specialist to lessen the burden of sorting through a lifetime of possessions in the midst of grief. Queensland death doula Leigh Cusack from Kendall and Co was flown interstate to clean a house full of boxes of possessions so her client could die happily knowing she wasn’t leaving a mess for her family. Christy Moe Marek, an end-of-life doula from ‘Tending Life at the Threshold’ in Minnesota, USA, sees local patients in person and others via phone and video conferencing. She focuses on creating a safe space for clients to do the emotional and ‘soul’ work needed to help them prepare for their death, as well as helping the family to feel competent and central to the process and less afraid of the unknown.

What a individual brings to the role will differ so you should aways see if their approach aligns with your own before engaging a doula. Although pioneers like Zenith Virago have been working and training Deathwalkers for decades in Australia, the activity here has been limited compared with the UK, Canada and the USA. End of life doula and educator, Helen Callanan, from Preparing the Way, estimates there are at least 40 death doulas currently working in Australia. However the popularity of online courses and workshops offered by organisations like the Australian Doula College means that there will be many more end of life doulas available to choose from in the future, which has led to a new directory and also calls for new guidelines and accreditation. Victorian End of Life Doula, Maria Lazovic, has put together a great list of questions to ask when hiring a death doula to help find the right person for each unique situation.

Join the Caretailors community

Caretailors is the place to hear about doing death better. Many of us think we can improve how we die in Australia, and the good news is that it is changing. Let’s highlight those forging a path to improve everyone’s end of life experiences, either as a service provider for individuals or a champion for communities. Connect with Caretailors to hear about events, ideas and practitioners that are making a difference.

Are you supporting a loved one that is dying? Maybe you’ve recently had the profound experience of losing someone dear to you. Death is a time to come together – to gather support around the dying and their loved ones to make memories and honour our most important connections.

Or are you one of the special people who improve the end of life experience of others? Are you interesting in joining a community of care providers whose services nurture the dying and their loved ones? We’ll support each other to raise awareness of the meaningful contributions you make.

Subscribe to the Caretailors email newsletter

Introducing Caretailors

Growing up I was sheltered from any experience of death and dying, so I encountered a steep learning curve when my mother was diagnosed with brain cancer. Coping with the practicalities of her illness, nurturing our changed relationship, managing our family’s dynamics, navigating through the hospital and palliative care systems, and making our remaining time together count was as educational as it was profound. While her illness changed everything and her loss was devastating, I feel so privileged to have shared her beautiful death.

We met some amazing people along the way – exceptional practitioners of various types – specialising in helping the dying or assisting families of the deceased. I’d never heard of their services, products and therapies before. But when the needs of our beloved mum entered unfamiliar territory, we were lucky to find a range of caring services through conversations and helpful tips.

I’ve experienced the deaths of other loved ones since then, and I’ve become wiser each time. But whenever I hear about someone doing great things to care for our dying and dead, I wish I had known earlier! I want to raise awareness of the wonderful options available to all of us so we do our best for our loved ones (and ourselves) when time together is limited.

Caretailors will shine a light on the incredible individuals who improve our end of life experiences.

Of course there are infinitely variable paths leading to death, and everyone has a different story to tell. But there are many people out there who can support us in unimaginable ways. I’d give anything to have her back, but my mother showed me there is grace, healing and beauty in death.