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:
Work
Do
Solve
Fix
Make.
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.

1. Families can come together during the time of vigil and bereavement. Things that separated us before can fall away while we do the awesome work of walking together in mutual love for a dear one. For that I am so grateful.
2. So much advocacy is required on behalf of the dying one. There is no substitute for the direct observation and care of the family. It was up to us to make sure that the things we thought were supposed to happen, happened, and vice versa. Like not giving meds that are no longer needed, not giving meds crushed in applesauce when swallowing is no longer possible, making sure orders are communicated to facility staff, not turning a dying person side-to-side every two hours when it causes pain; etc. It is so important to spend as much time there as possible.
3. Every act of kindness on the part of the caregivers is merciful and touches the family members deeply. 
4. Facial tissues that are soft are worth the extra expense.
5. I can Facetime with a sibling for hours even though we may not talk much; it is important and it helps.
6. I can't sleep in a recliner. It's okay to go home when you can't sleep.
7. Even though in your head you know there is no question you are doing the right thing to provide comfort care only, and let go of your 91-year-old father who has suffered with dementia for years, it is normal in your heart to want to say, "Stop! Just kidding! I'm not ready; let's not do this today."
8. There is so much wisdom in caring for the body after death for a day or two and not hurrying the process of saying good-bye.
9. Photos help, at all times, before, during and after. They help us remember, and remembering helps us grieve, and grieving is good.
10. Kind words of love and compassion are so supportive and helpful. I always knew that I should reach out to others in the time of grief; I never knew just how much it helps. The last thing I did before going to sleep was read through facebook comments and the first thing I did upon waking was read through the new ones. Cards, calls, gifts, and offers to postpone commitments are so gracious and appreciated. Now I know.

         -Merilynne ​

​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:

• Most people do not think about death until they have to.
• Most people are afraid to talk about death because they fear what they don’t know, have no experience with death, or have unresolved grief around a loss.
• We need to accept and try to understand where people are coming from and ease into talking about death.
• If approached gradually by someone from within their own community who is understanding and gentle, many people will welcome new information that may be of use to them. 
• If we refrain from speaking negatively about cultural norms, our message is more likely to be heard and considered. Speaking negatively may lead to feeling judged.
• If people feel accepted or encouraged, they will more likely care about your message, trust you, and build a relationship with you.

​And after all that, be aware that:

• Most people will continue to not talk about death. Do not judge them for it.
• Accept that it is beyond the scope of your ability to change how our culture thinks and (doesn’t) talk about death.
• Simply be available to those who want to talk. 
• Hone your message and present it with integrity; speak from the heart.

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:

1. Be more comfortable with being uncomfortable.
2. Create safe, mixed space opportunities for discussion (between those who identify as white and our black and brown siblings). This must be done intentionally.
3. Handle mistakes that are inevitably made, and to address them quickly without being derailed.
4. See others through the Green Lens, which helps us all to be more generous and gracious to each other.

The safe spaces created by The Dying Year include:

1. Our end-of-life doula classes and the in-depth discussions we have there
2. Our open EOLD discussions every Wednesday
3. All our personal interactions and mentoring sessions

2020 Classes

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.

Wednesday discussions

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!

Research

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!

Love,
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:

1. Assistance with Advance Care Planning; they may not call it that, but they want to plan ahead and get their affairs in order.
2. Information about funeral and burial options; this most often comes in the form of a question about “green funeral,” which is confusing, but can be parsed out into a request to learn about home funeral and/or green burial.
3. Personal care; families who are newly caring for a dying loved one need assistance with very practical matters like keeping the person clean and dry. We simply aren’t familiar with how to change briefs, or help someone get dressed (or the caregiver is physically unable to do these things). If the person is in hospice care, the aide can come up to three times a week, but either this is not enough, or the person is not yet in hospice care.
4. Sorting, cleaning, decluttering

Are you willing to put yourself out there as an ACP facilitator or learn home health aide skills so as to be marketable? It might not be your favorite thing to do, but it is a means to begin to serve people in ways they know about, are needing, and are seeking. I believe that the “softer,” more intimate aspects of doula care that we so love to do, such as provide companionship, talk about spirituality or reconciliation, or sit vigil at the bedside, are difficult to market (for lack of a better word). They require a getting-to-know-you period in which a trusting relationship is built. It might be helpful to look at these services as the end result, not the starting point in your doula work.
 
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.

You never see photos of a home funeral that depict someone doing paperwork; it is not the part of a DIY funeral that is visualized or sentimentalized in education. In a completely DIY home funeral, somebody close to the family must obtain the death certificate, fill it out properly, track down a physician to sign it, and file it manually with the county clerk, among other things. If the person died in a care facility or hospital, paperwork must be completed before the body can be released to the family and taken home. Equipment, several strong people, and a large vehicle are required to transport the body to a home, and to final disposition. Very few families will be able to do all of these tasks. If they don’t, is it still a home funeral? 

Many natural death care educators emphasize a completely DIY home funeral. I believe that we need to broaden our scope and simplify our message. Most people benefit from spending time with the body of their deceased loved one after death, even if they do not take on the other aspects of death care, and do not call it a ‘home funeral.’ (The problem is, there is no catchy name for it.) Let’s educate people that they can simply be with the body in the early hours after death in many circumstances*, even if they do not do anything else in the care. Let’s not just educate about home funeral. Our message needs to be broader.

For example, in the care facility where she died, my husband sat with the body of his mother for four hours after her death, during which time he prayed, cried, sang, anointed her and held her. No-one would call this a home funeral, but he did what he needed to do and benefitted greatly by it. It was a precious, sacred time of which I was privileged to be a part. Other family members were invited but did not attend. 

When my uncle died, close family members gathered in his room in assisted living. The hospice nurse invited us all to help wash and dress him. It was a cool November evening and we were told that for the next 24 hours we did not need to do anything beyond opening the windows and keeping the room cool. Without having planned ahead of time, one thing just led to another. We gathered the following morning to pray, sing, tell stories and comfort each other. We invited a larger circle of friends for an afternoon “open house” where we served coffee and cookies. Twenty-four hours after he died his body was removed for cremation. 

I don’t think anyone would call either of these situations a home funeral, per se. But they were very meaningful; nothing else was desired or needed. How can we encourage others to know about choices such as these? By emphasizing DIY home funerals, are we making it too complicated for most families? Yes, everyone should have the option to do as much as they want when a loved one dies, but many do not want or need to do it all and can similarly benefit from simply being with the body for a while. Yet most people do not know they can do this, do not know to ask for it, and do not understand how it can benefit them. I believe it is unnatural to have to hastily say good-bye to the body, yet we have come to believe that that is the only option. 

Many will benefit from simply spending time with the body for a little while, even if they don’t do the other aspects of the funeral care. It does not appeal to, nor is it practical for, everyone to file paperwork, obtain dry ice, wash, dress and cool the body, have a days-long visitation, take the body to the crematory or cemetery, etc. For those who want to do these things, it should be possible, but not doing these things is also very beneficial. Let’s find a way to also educate people about the benefits of being with the body, without calling it a home funeral.

"Home funeral" = Beautiful, beneficial, difficult, requires planning and resources, not practical for many families.

"Spending time with the body" = Uncomplicated, spontaneous, simple, practical, beneficial.

*This article speaks about deaths that are expected and that occur from an illness, such as the death of someone in hospice care or someone who lives in a nursing home or was cared for in a hospital. In the case of an unexpected, sudden, accidental or violent death, the circumstances are quite different; it can be very difficult to spend time with the body immediately after death. Often emergency personnel are involved and the family does not have immediate access to the body of their loved one, which adds to the tragedy. Death care educators should address this in education and help prepare students to be available to the family, liaise with officials, increase communication, and assist where possible, such as by viewing the body and reporting to the family, obtaining personal effects, or being a witness to or helping in the loving care of the body. In these tragic circumstances, we can be creative in assisting the family in other ways, such as gathering mementos, creating memorialization opportunities and ceremony, and being a helpful presence in grief and bereavement. 

Listen to webinar here.
The end-of-life doula (EOLD) field is a rapidly growing profession that is not currently regulated. Many who are drawn to caregiving at the end of life are exploring death doula/death midwife training. With 10,000 boomers turning 65 every day in the US, we need creative ways to care for the elderly and the dying at home. Is certification necessary to set up a business and work as an EOLD? I’ll be discussing this on Wednesday, April 29, at noon EDT, in a zoom webinar that is open to all; email me to receive the link.
Credentialing by an independent professional organization may be on the horizon in a few years. Currently, however, it’s important to understand that certification is conferred only by independent trainers or training organizations. In other words, individuals certify their students according to what they independently have decided are the necessary knowledge, skills, and/or experience to have. Among different trainers and training programs there is great diversity of style, philosophy, and content with no professional oversight of any kind. 
Let me give you an example. Mr. Z, an entrepreneur, decides he wants to offer EOLD training. He’s had life experience or professional experience that he, with no sanction by any other professional body or group of people, think qualifies him to offer such training. He designs his class or course based on his definition of an EOLD and what he thinks the role entails. He then also decides to offer certification, based on a process that he made up. It may include field experience, it may not. It may include a test or written assignments, or not. He decides to confer a credential. A common credential currently used by many trainers is CEOLD - Certified End-of-LIfe Doula. But here’s where it gets tricky. Someone who earns a CEOLD from his certification program does not compare with someone who earned a CEOLD from another training program. Ms. A’s training program may use an entirely different definition of what an EOLD is and does. Ms. A may include a different skill set and philosophy. No outside regulatory body that has sanctioned or compared either program, but they may use the same CEOLD credential. 
This is confusing to students, EOLDs, consumers, and healthcare organizations alike. The benefit to the student of obtaining certification is that they know their knowledge and skills compare to someone else who is certified by the same training organization. The drawback is that it means nothing overall until there is some oversight of training organizations by an independent professional organization.
There is one organization that is not a training organization that confers a credential — the National End-of-Life Doula Alliance (NEDA). It is called a proficiency badge and it is open to anyone, regardless of training background. It assesses knowledge only, not skills or experience, and is based on a set of core competencies defined by a consortium of EOLDs and trainers. It provides a first step in bringing everyone together to define this profession. and it sets the stage for a more robust regulatory process to come.
Join me to discuss this further. Bring your questions and concerns and ideas. By sharing our views and hashing this out, we’ll help move this profession along. I’m interested to know what you think.