Sometimes life is an uphill struggle.
What gets you through?
Some days were good this winter,
some not so good.
Now its springtime and I'm looking ahead - I have a chance to reinvent myself.
Which of these things will help me brighten my future?
I am so glad we decided to have an online virtual memorial gathering soon after my father’s death. It brought us together as siblings and gave us something to do during those first days and weeks after he died. It was difficult and it took a lot of work. It was distracting. After it was all over there was a let down and I felt my grief more deeply and in different ways than I did leading up to the memorial. But it gave us so many benefits — we shared our memories, created a beautiful 7-minute slide show, met with old friends and family far and wide, and we have a recording of the whole gathering that we can cherish. If we hadn’t done this at this time, I don’t think we would have done anything in the future when we can gather in person again. Or at least it would have been different, and perhaps more difficult. It is satisfying and comforting to look back on this gathering now, even though it had to be online.
The inspiration and model for this came from the “zoomeral” of my partner’s aunt. The first thing I did was tell my siblings about that experience and how beautiful and helpful it was. I called the organizer of that event to ask about the details – super helpful!! I had planning meetings on zoom with my siblings — this gave them an opportunity to get more comfortable with that platform.
Our event took place about 2 ½ weeks after my dad died. It was a bit of a scramble, but we didn’t want to wait too long and it was worth it. I think there is a lot of value in doing it soon to give you something to work toward, to express your feelings while they are still very fresh, to give others a chance to participate and come together, and to get past it so you can focus on other things and other ways of grieving.
We kept it short; it’s difficult to be on zoom for very long, and we wanted kids to be able to be there. Fewer transitions between speakers, photos and music means less potential for technical glitches. We had some prayers, about 5-10 minutes of music, a 7-minute slideshow with music, personal sharing from the children of the deceased for 15 minutes, and about 15 minutes of open sharing. An additional wonderful feature was having breakout rooms after the formal gathering for further discussion among friends and family.
We hired a zoom technical assistant to:
You also need an MC for the event. My recommendation is that it be someone close to the family, but not an immediate family member. The MC is the primary speaker who is the leader, welcomes everyone, sets the tone, states the purpose of the event, keeps things on track, invites others to speak, and closes the event. In our case, the MC was also the pastor who led the prayers at the beginning and end.
Other things we did:
Biggest lessons learned:
I hope this information helps anyone planning to do a virtual memorial.
Steven Birenbaum, How to Hold. Virtual Memorial Service, NYT 1-14-21
Debbie Waldman, How to Pay Your Respects During a Virtual Funeral, Wired, 3-17-21
There are no cue cards, there is no rule book.
I only have the bits and pieces of what I have
learned from other people’s stories,
from books or movies,
from a class.
I have to write my own story,
I have to figure this out for myself;
I have to design my own plan.
I have to walk this journey in my own shoes,
no one to guide me.
It’s like flexing a new muscle,
developing a new skill;
one I always knew I would have to learn,
one you can’t really prepare for,
something I knew lurked ahead but ...
Now I have jumped off this cliff.
I come from a very productive-oriented life:
With producing things there is a sense that, if you just do it right, it will work.
Put in the time, follow the directions, get the right tools, make it work;
use your problem solving skills.
With this grief, there is no …
It is different;
it is not a problem to be solved with my mind.
It takes time,
but another kind of time.
Time to just be, to feel.
I almost have to get sick to slow down and feel,
be with my memories.
This is a different kind of work;
one I am not as good at.
It feels weird, ungrounded, unhinged, new.
This is where I can rely on what I have heard,
what I have learned from others’ experiences:
This is normal.
I have to keep telling myself that.
It is ok to just sit.
In fact, it is necessary.
My dad died February 9, 2021. All that I have learned and talked about for so many years helped me to be at his bedside and be fully present with his dying and my grieving. I want to share a few lessons that I learned on this journey. Thank you for listening, and for your compassion.
My dad lives in a facility and is dying of dementia. Each week I look at him on a screen. He is being taken care of by caring, young (mostly) women. I am so grateful for them and the love they give him. Some of them are activities directors, some are aides. They each have their individual job description, but a lot of what they do overlaps, especially now during Covid-time. All hands are on deck to be with the residents of assisted living facilities because family, and others, can’t be there. My father’s aide tells me she is spending as much time as possible with the residents. The aides and others know that they are the heart and hands of the family and loved ones right now and they focus even more on providing companionship, touch, humor, love, and so much more.
There are other roles that overlap with caring for people at end-of-life: fixer/handyperson, therapeutic pet care person, meal deliverer, housekeeper… the list goes on and on. The longer someone works in a caring profession, the more they learn by experience about end-of-life. But many of them do not have specific training about specific areas of end-of-life care like the dying process, grief and bereavement (including their own), life review, comfort touch, vigil-ing, community resources, advocacy, advance care planning, and funeral options. That is why so many people are attracted to the end-of-life doula role. The doula learns about and addresses all of these areas. The doula does not replace the other roles; doulas add another layer of support, spend time, focus on companionship, and collaborate with all care providers. Doula-ing is all around us, it is not new. It takes many people in all of our capacities to care for each other. The doula concept brings it all together under one title, but others are still needed. We all need each other. Doulas bring everything they have and everything they are to the work. Doulas are changing end-of-life care.
My research collaborator, Dr. Marian Krawczyk of the University of Glasgow End-of-life Studies Group, and myself have recently published an open-access article on the research we did on the end-of-life doula (EOLD) role in four countries. There has been a lot of interest in this work, including a recent town hall with the International Federation on Aging. We are keen to discuss our findings with the broadest audience possible, particularly during the COVID-19 pandemic where end-of-life doulas are providing innovative services to address the myriad needs of families caring for dying individuals.
We conducted 22 semi-structured interviews with key innovators and pioneers in the EOLD movement, five each from Australia, and the UK, and six each from Canada and the US. Some of the things I found most interesting about our findings are the broad range of descriptors of the EOLD role (see Table 2, below), the emphasis on community care and responding to the needs of the individual/family rather than imparting one’s own values, and the tension between mainstreaming EOLDs while preserving individuality and integrity as companion and advocate. More papers and more research will emerge from this data, including why the movement has gained such momentum, issues of professionality, standardization and regulation, women’s work, training, and much more. I hope you’ll read it and let me know what you think!
We all know that we live in a death-denying culture. Talking about and preparing for death is not something most people do. Here's a few pointers that I have learned from experience, that may help you do some self-examination and alter your approach to talking with others: I have learned:
The Dying Year made a positive impact in 2020!
What a year it has been. All of the turmoil and pain of the multiple pandemics and the death and loss we have experienced has exposed many cracks in our lives and in our systems. It is my sincere hope that some light may shine through the cracks on you and your loved ones as we come to the close of this tumultuous year and begin the new one.
During the hardships of this year, we at The Dying Year have made an impact as we have done our best to create safe spaces to increase awareness and learn and grow together. Our aim is to help us all be better end-of-life caregivers. We will continue on this journey to learn to talk about difficult and uncomfortable issues. When this company began in March we were immediately thrust into helping EOL doulas adapt to the realities of providing Covid-appropriate care. Then our greatest change began when George Floyd was murdered. I (Merilynne) and many other white-identified people started examining, and stepping out of, the selfish and self-protective bubbles we had constructed, into a deeper awareness of oppression, white-supremacy, and systematic and institutional racism. Through all of this, we have been looking at how our biases and practices affect our work. What a growth year it has been! Some of the things I have learned include how to:
Jess, Toula, Robin, Olivia, Star and Merilynne taught four series of end-of-life doula trainings to 41 students. Three students have received their EOL doula certification and nine more are on their way!
Merilynne taught five Advance Care Planning Facilitator trainings and certified 8 facilitators through the Respecting Choices® program.
Kim Adams and Merilynne taught 19 people how to help families care for their own dead at home in the hours and days after death at the Home Funeral/Green Burial workshop.
On average, twelve people attend our Wednesday EOL doula open discussions every week, where we explore many diverse topics, from building business skills to examining implicit bias to working in various care settings to Alzheimer’s care. This group has become quite a nurturing space for us to share and learn together. We welcome you, we honor you, we strive to see you as complete and whole, with your own answers, as someone who can contribute to us all, and who deserves to be treated with respect and dignity. Many thanks to Rachel Briggs for her steadfast and dedicated assistance in keeping this group going. Networking and community building is a primary focus of this group and all are welcome to attend, no matter where you are on your journey of becoming. If you would like to contribute a topic or be a speaker, please let us know!
A primary accomplishment has been the publication of EOL doula research. Merilynne began a collaboration with academic researcher Dr. Marian Krawczyk in the fall of 2018. In 2019 we interviewed 21 EOL doula pioneers in four countries (Australia, UK, Canada and USA) about the EOL doula role and services provided, as well as thoughts on professional development and challenges within the field. “Describing the end-of-life doula role and practices of care: Perspectives from four countries” was published December 7 in the Journal of Palliative Care and Social Practice. This contributes greatly to the very slim body of research about our growing profession.
At The Dying Year, our goal is to continue to bring together EOL doulas from all backgrounds, locations, and experience levels to help grow this profession. We are very grateful to Marta Bartholomew, our new virtual assistant, for coming on board in December to help with this work! The more doulas there are, the more people there will be having doulas. We are needed now more than ever and we need not struggle alone in our communities. Please join us however you are able! Becoming a member of Patreon is the best way to get involved and support The Dying Year, and in so doing, support and nurture yourself on your journey. Bless you! And Happy Holidays!
Merilynne and everyone at The Dying Year
On Tuesday, January 19 and 26, from 7-8:30 pm EST/4-5:30 pm PST, I am so pleased to host guests Marilyn Ababio and Kimberly Habi from Comfort Homesake in LA to talk about Soul Injury and Soul Healing for Caregivers. I met Marilyn at a ReImagine event in the summer and was struck by her wisdom and gentle heart. We’ve been wanting to do an event together for a while and here it is!
We all have a spectrum of wounds that injure our souls. Our circumstances differ but the results can be devastating: avoidance of pain, debilitation, separation from our “real self.” We feel defective. To come into our power and heal, we need to restore ourselves, change our lives, and acknowledge what has hurt us. As we look at our pain, develop a relationship with it, listen to it, and re-own it, we can disarm our hearts and “re-home” our pain and break down our barriers.
In this presentation we will learn some practical techniques to do this important work, lead healthier, more authentic lives, and transform our losses into living consciously in alignment so we can be peace-makers. I hope you will join me to learn from these two brilliant women; it will help us all be better caregivers, both for ourselves and for others at end-of-life. Don’t wait to do this awesome, vitalizing work.
Register once for both presentations. The cost is $15 – 30 sliding scale, but no one will be turned away for lack of ability to pay – just contact me. You will be sent the zoom link when I receive your payment. Patreon Contributors, Supporters and Sponsors receive discounted registration.
Marilyn and Kimberly's bio's can be found on the homepage.
I believe the end-of-life doula profession is here to stay. However, I think it will continue to change and develop, and every EOLD practice will look different. There are too many variables for a one-size-fits-all practice model. Different communities and populations need different services, and different EOLDs have different strengths and skills they want to offer. In addition, the fact that we do not have an agreed upon definition or set of standards makes it difficult to educate the public about EOLDs so that they can be utilized. How do we fix all this? I don’t know, but I have some ideas. What do you think? Take the short survey here and receive the article "Full Moon Funeral" for free!
I recommend that doulas start by offering services that are already known about and in demand. In my experience, I have found that people want these things:
For example, I see a lot of students entering the profession because they are interested in sitting bedside and vigiling during active dying. But how realistic is it that a family will be comfortable inviting a stranger in to such a profound, emotional and private setting? If this is one of the aspects of doula work that draws you, you may need to become known in your community through offering other services.
I’d love to know your thoughts. Please fill out this short survey for anyone interested in EOLD work (aspiring or experienced). How do you feel about what I have said? What services do you (want to) offer? Everyone who submits their responses will receive a complimentary copy of an essay I wrote entitled “Full Moon Funeral,” about the first home funeral I attended in 2009. Thank you so much — I can’t wait to hear from you!
Join us every Wednesdays at 12 pm Eastern/9 am Pacific for discussion from other EOLDs. Register here to receive the link.