Death Doula Finds Joy In A Good Ending

Photo by Trevor Barcelo

Learn more about Sairey Luterman and her grief support private practice here.

TRANSCRIPT

Swept Under the Rug

When Sairey Luterman was little she sought out comfort from her grandfather.

SAIREY: He was soft spoken and so sweet and gentle. The women in my family were all tigers…And he was not. … I really did love him very much, yeah. I felt safe with him…which may seem like not a ton, but when you've got a den full of tigers and you have a safe someone, that really is pretty significant. 

When Sairey was 10 years old, she learned that he died. And she was allowed to go to the service but her parents didn’t want to talk about it. She says both of them struggle with unaddressed mental illness.

SAIREY: My mother was very avoidant of anything to do with death and dying and her children not out of protection, just I think out of not herself wanting to deal with it, but, and the messiness of how do you comfort a child? How do you communicate this to a child? So it was something happening so many years in the background in my childhood, but wasn't, wasn't spoken of. It was more a puzzle to me than a, anything else.

LAUREL:  And do you remember any specific questions or thoughts that you had during that time? 

SAIREY: I definitely remember existential threat. As a child, I can remember lying in my bed with, you know, really big thoughts like, and I might've been, let's say 10 or 11, just with sort of really what I would call existential terror. … I think anything you sweep under, try to sweep under a rug in the life and the mind of a child is going to roar back that much more powerfully. 

This is a story about how Sairey got over her fear and learned to embrace death as a grief counselor and death doula. This is 2 Lives. I’m Laurel Morales.

Escaping Into Books

From a young age Sairey Luterman loved to read. 

We lived in a home with piles and piles of books and I loved escaping into stories. I can remember just loving loving going to the Melrose Public Library and being given carte blanche you know with my library card and not being given sort of limits in any way and just leaving with piles and stacks and piles of books and being just giddy with the sheer sort of richness of it and knowing that I was going to go home and have all of this in front of me. 

So years later when it came time to pick a major, English literature seemed the obvious choice.

Was it a practical choice? That’s a whole other thing but I loved my major. I studied abroad in England. I walked the Lake District and it was just the richest, richest time. And then graduated and I thought, what am I going to do right now? And right now it felt like publishing made a lot of sense. 

She lived in New Jersey but commuted to Manhattan for her high stress job as a marketing manager for Random House. She worked hard to get books on the New York Times best selling list.

It was just a buzzy, energetic place and so I would say that I was probably a lot less flexible for sure…But a lot of that intensity worked for me. I was successful. I was well thought of. 

In 1993 she met Jim at a dive bar just outside Boston. The two married three years later. It took a while for her mother-in-law to warm up to her.

My husband is the youngest of four and I think in a lot of ways was the apple of her eye and was, you know, one more child who brought home a non-Jewish partner.

Career Woman To Full Time Mom

In 1999 Sairey had a baby and went from working full-time to three days a week for a small publishing company in Boston. 

I have very hard charging friends and lots of them stayed really hard charging professionally at a time where I stepped off.

But working part time didn’t feel like the solution.

I would get home with Theo on my hip, hungry and tired from his day-to-day care and tired myself and be trying to make his meal and draw a bath. And my husband would be on my heels, but I was home first...it sapped all the joy out of the work piece and the home piece. 

She was miserable and it didn’t make sense for their family. So after a long look at their budget and much deliberation she quit, and became a stay at home mom.

It wasn't like there was this really easy, gracious choice for me to stay home. It was a hard, hard choice with a lot of ramifications. 

She tried to make new friends at her mommy group.

…but my life, the upheaval, the change was significant…I still had no idea which end was up. I remembered what it was like to put pantyhose on and take a train… I couldn't figure my new life out. 

She wound up spending a lot of time with her in-laws. Her mother-in-law Carrie had MS and so was mostly housebound in a wheelchair.

She was always available and always delighted to see us come through the door. … she couldn't get enough of Theo and I couldn't get enough of adult companionship and having someone to have a cup of tea with and chat with… There were pieces of being mom that I was just very enamored of, but I did not have a durable roadmap at all. And she and her kindness and her love and my father-in-law's too was just profound at that time in my life. 

Over those two years Sairey and her mother-in-law became quite close.

She was a powerhouse of a human being. She was brilliant. And she was a very light-filled person. She had multiple sclerosis and it was chronic, you know, it would come and go. Her version of multiple sclerosis was brutalizing. 

Death Rally

One morning they got a call: Carrie was in a coma, they needed to come to the hospital right away. She stayed in the coma for five days.

We sort of relinquished a little bit more hope each day. So we got to the end of five days. We've been sitting vigil, we've been around her bedside, around the clock. And long about day five, she started to kind of come to consciousness a bit. And then a little bit more. And then she asked for yogurt. And then she was sort of sitting up. She was awake. We were just all trying to understand what had happened.

At the same time doctors told them that her mobility was even more compromised but she was released. At home she would sleep for long stretches of time and wake up disoriented. So they called hospice.

She was getting sicker and frailer. She would have bouts of consciousness and describe really distressing dreams and being very out of it. And then ultimately she was largely unconscious and what looks like sleeping to us for longer, longer periods of time. And my father-in-law said, ‘this is it. This is going to be at this time.’ 

Jim and his siblings made arrangements with their jobs and their families and traveled to her bedside to sit vigil again. Sairey and Jim lived one town over so they would sleep in their beds at night and come back the following day.

And one day it was in the morning, my husband and I came to visit. She'd been sleeping for the days, many days previous, but she was sitting in her wheelchair. She hadn't been out of her bed in, my gosh, some time, a long time. She was sitting by her bird feeders, which were mounted on the window and she had a basket of laundry and she was folding laundry and she was very animated.

So they thought she’d recovered again.

We were exhausted. We were half out of our minds. We were so tired.

And the following day we got a call that she had died. I remember where I was sitting on the floor like playing blocks with Theo in our apartment in Arlington. I wasn't in Lexington, I wasn't by her. … I hate the expression mind blowing but it was. I couldn't understand what had happened. And we'd essentially left my father-in-law alone with her. She was very agitated and very unhappy and that he felt quite traumatized by how that last bit went of her life. We were all flattened and just astounded. And it took me years to get over the trauma of that loss. And even just still talking about it, I think, like my stomach sort of did a flip. What I realized was we knew nothing. That I knew nothing about dying. 

The hospice team didn’t dissuade them from leaving, didn’t mention something called a “death rally.”

In fact she was very close to the end of her life and that this was her way of wrapping things up, that this is something lots of people do before they die. Sometimes it’s close to the end sometimes it’s approximate. I don't remember that hospice worker saying anything to that nature. They weren't an effective advocate.

It was at that moment that Sairey made a critical decision, one that would lead her down a new career path.

I realized I never wanted to be in that position ever again. I realized that that was one of the most important times in a life and that I never wanted to be as ignorant of that process on every level as I was. I realized that not only could this not be true for me, my role as an advocate for my loved ones, for instance, would need to, but also my role in my own dying. I thought, am I just going to leave this to the universe and hope it works out okay? You know, no. And so I slowly started to tunnel into what was the end of life? What was true of death and dying? What did we need to know?

Close Call

Three years later in 2004 Sairey and her husband had a baby girl named Anna. When she was nine months old she developed a urinary tract infection.

And she kept getting sicker and I kept becoming more frightened because it was the first time in my life where the doctors clearly didn't know what the heck they were doing and what was going on. And it was terrifying. She ended up getting horribly, horribly sick with a urinary tract infection. And she ended up with some scarring on her kidney from that first urinary tract infection and ended up being admitted to Children's Hospital, this little curly haired cherub.

For several months they were in and out of the doctor’s office.

It was horrifying in that you'd have to be fully checked out to not be aware of the suffering and the suffering of the children around you and their families, their parents. The look on the other parents' faces… We'd have testing done on Anna and I remember one day they were scanning Anna's kidneys, I believe, and things were delayed and Anna was crying and it was just awful. And we got in for sort of our turn and the nurse said, ‘I know your story's not good either,’ she said, ‘but you know, the child, the four years isn't going to live.’ And I thought, my God.

The doctor prescribed round after round of antibiotics. This went on for more than two years. 

Feeling really just out of my mind. My husband is a scientist and calmer in demeanor and more scientific and a rock. That was part of how I survived and we survived. 

Finally the doctor suggested surgery. Sairey and her husband had to weigh the pros and cons of the procedure on their three year old daughter.

I remember my husband's stepmother saying, it was like driving into a wall at a thousand miles an hour to sign your child up for surgery just created so much anxiety and fear and worry because of course surgery comes with risks and we were aware of that too. So we had the surgery and she came through it.

‘The Universe Conspired’

In the months following, Sairey could finally breathe.

I felt like the universe had coalesced in such a way and shown us, like you know, in …the Scrooge …like, we've been shown how bad it could be. What else was out there? What our story could have been? And you know, you would see these children on dialysis bags, these massive dialysis bags and think, my God, you know, so I thought, what can I, how can I make this, make an offering to the universe around this? 

It was around this time that Sairey went to a play at a local theater and someone stood up and spoke about a place called The Children’s Room, a non profit dedicated to helping kids and families cope with grief. 

And I thought, well, that's it. That's what I wanna do. I wanna go to the Children's Room. I wanna be trained as a volunteer. I wanna understand more about grief and loss.

Sairey went through their training and then began to search for other classes to learn more about grief and the end of life. She compiled her own curriculum of classes offered at different colleges in the Boston area.

I just started to learn, couldn't get enough of this understanding that I was starting to develop this bigger picture. 

She used all her hours she’d worked at the Children’s Room to get a certification in Thanatology, the scientific study of death and the needs of the terminally ill. Then she hung out her shingle as a grief counselor. A couple years later she added death doula to her title. 

So two years ago when her mom was hospitalized with congestive heart failure and kidney disease, Sairey understood what was unfolding.

There are ways that death, I think we just throw our hands up and we say we're powerless and we're this and we're that, but we really aren't. We just don't want to take responsibility is what we really are. And it's scary. And that's real too, right? It's scary. It's a scary thing for some people. It's not scary for me, but it's scary for people. We were late stage kidney disease so we had just had a long conversation with a palliative care doctor and I walked into the room where my mom was and where my dad was and I looked at her and I thought, she's already begun dying. She's on her way. We need to get her to safe harbor and out of this hospital and somewhere cozy and nice but I was able to look at my own mother and see was able to evaluate her and see, this is a dying person. This is not a person who wants to keep on living or is going to keep on living.  When we, my dad, my sister and I met with a palliative care doctor, I was able to talk to her like a colleague only about my mom and change the trajectory of the end of her life in a way that most honored what she would want, what I knew she would need for comfort and care and I was completely in voice. 

A Good Death

Sairey says it’s helpful to begin working with a person who has a limiting diagnosis before they are actively dying.

So that we can build a relationship and get to know each other and. Really for me to start to understand the family and to start to understand what their life was like, what their familial relationships are like. What do they need to make peace with? What do they want to let go of? What do they want to bring closer and think about?

LAUREL: Can you talk about what makes you a good death doula?

SAIREY: I'm very good at paying very close attention to people. My work is really hard work. To pretend differently is to end up with a really great solid case of burnout and to be able to help no one. And so I typically companion a single family at a time. I am available to them in a very, I can't think of a better word than sort of concierge way. And after I finished working with a family, I enter a period of quiet and retreat because I so firmly believe in the value of a good ending and a good closing on this life. 

LAUREL: And I love what you said, doesn’t get said often enough, for people who want a good death. We talk about a good life. But we don’t, we don’t want to say that.

SAIREY: I feel so joyful to, when I am able to work with someone to help them have a beautiful ending.The joy is in helping a person manifest a close to their beautiful, wonderful, complicated, hard, messy life in a way that feels organic to them and calm and good. And there is joy in that. It's no different than I think probably being a midwife who's bringing babies into this world and helping with that process then that baby shows up and there's joy. When my person closes their eyes on this world and I know that things were in order. Things were good for them. Things ended on the note they wanted. I always do my best. Some cases I feel like are really very rich and wonderful. Dying's a hard thing. I'm not perfect. No one's perfect. We all carry our baggage with us. So is the outcome always joyous? I don't know. Is it better than what I think most people would have had if I were not in their corner? Absolutely. Yes.

LAUREL: So how has this work changed you from that career-driven marketer in publishing to now?

SAIREY: I'm much more happy and relaxed and joyful. I laugh more. I think that I don't cling to things very tightly. My sense of perspective is very different and can sometimes be very make me feel a little bit lonely if I'm not sort of around my people, right? Like my sense of perspective about what is important and what is a value. It's always in front of me always.

LAUREL: What do you want people to know about death? Probably a whole book.

SAIREY: What do I want people to know about death? I guess this is gonna sound crazy, but the first thing I would say is we all die. And I know that you think that people know that, but people don't know that. People tell themselves really different stories about their lives and what's happening and what's important. So I'm here to tell you Americans are the only people who come and sit in my office and say, if I die. Europeans do not say things like that, right? I'd like to think in model humility too. Right. Like we are all dying. We are some more slowly than others, some more quickly. Many of us don't know our expiration date. Some of us do, but we will all die. Start to make peace with that. Hold that in your heart that you get a limited time in this amazing place to enjoy and to look into your loved one's eyes and to laugh and to eat chocolate and drink too much coffee. But know that this time is limited and the choices that you are making right now are the choices that will shape the end of your life and how you die.

This is 2 Lives. I’m Laurel Morales.