Talking about Death – Page 5

January 31, 2020June 14, 2020

Waking Slow

I wake to sleep, and take my waking slow –Theodore Roethke

Tending to Endings (five)

If you have not filled out an advanced directive yet, you will get no judgement from me. I just completed and signed mine this week, January 27, 2020. What finally tipped the scales was not the horrible predicament I would put my family in should I suddenly end up in a coma, but rather the thought of my friends running around looking for my advanced directive saying, “I know there has to be one somewhere. Laura was smart about things! She’s writing blog about this stuff!”

I’m not proud of this. But I include it here in case, you, like me, do not always take care of important things.

I have started the form many times.

In fact, the first time I held an Advanced Directive was after I left the emergency room in 1999. The minivan I had been driving was T-boned by a truck carrying a septic tank. My fault. I had stopped at a two-way and gotten confused on which direction to turn. It was a sunny day on a rural road. I remember there as being no other vehicle in sight—only alfalfa fields and clear skies and the Owyhees in the distance—until I pulled into the intersection and my wrongness slammed into me. Metal crunched and clawed; the world spun; my chest hurt. Powder rose like smoke dancing in shafts of light. I did not know if I was dead. Eventually a cop approached tentatively, fear in his eyes. He didn’t know either.

The other driver and I were, somehow, fine. On the way home from the hospital, I stared at the typed form the receptionist had offered, the words “Living Will” centered at the top beside a rose emblem.

If anyone needed a living will (any will) at that time, it was me. I was going through a divorce. I had preschool-aged twins. Had I ended up brain dead on life support that day, it would’ve been left to my parents and soon-to-be ex-husband to muddle their way through on my behalf. I would not have wished that on any of them.

Two decades later, I finally have an advanced directive.

I contemplate why this has taken so long.

Fear: Particularly when my kids were young, death was so unthinkable. Making plans for death somehow felt akin to giving my consent. (Denial is a cunning force.)
Selective Laziness: I have a general dislike for legalities and paperwork. I am much quicker to take on the physical and relational work than the paperwork in pretty much any area of life. (I’ll do yoga and eat well, but procrastinate calling to get health insurance quotes.)
Ambivalence: I don’t know exactly what I want at the end of my life. How could I? I haven’t been there.

It is this third one that has been the last to fall.

At the last Death Café in Boise someone said, The form is quick. I filled it out in fifteen minutes on my lunch hour.

But when I pull up the forms on Honoring Choices Idaho , the very first question gives me pause: What abilities are so important to you that you cannot imagine life without them? It seems to me a trick question. I’ve learned many times that my imagination is not very accurate in predicting whether I can find peace or joy in various circumstances.

I remember what an ICU nurse once shared, The most important thing is to have a health agent who knows you well enough to interpret and follow your wishes.

This helps me move forward.

My problem was the form was asking me to make black and white decisions for a potential future time in which I knew things were likely to be gray. But I could identify people who I trusted to be flexible thinkers and to know how I might perceive various situations.

Sallie Tisdale, writes, in Advice for Future Corpses, “A friend who knows your values and can handle a crisis is ideal.” I am lucky to have a few to choose from. My husband is my primary, and I add two friends. They are alternates, but they are also people who I know could be helpful to John should he have to make difficult choices.

There are a couple of check boxes asking whether I want CPR or a Feeding Tube or a Ventilator in cases where “Your doctors have determined your illness or injury cannot be cured and death is likely, or your brain function will not return.”

This is pretty clear, and I think I know my answer. Still, I am 55, healthy, and quite fond of living. Before answering, I send the language to a friend who is a nurse along with this question: If I check no to CPR, they will still give me CPR if there is a chance I can recover, right?

It takes her about thirty seconds to respond: Yes, you are absolutely right – the situation only applies if there is no brain function or chance of recovery. The doctors and nurses are very diligent about the certainty of the prognosis.

That gets me through the pick-only-one boxes.

The National Hospice and Palliative Care Organization has templates for advanced directives from each states and a wealth of other resources. And Honoring Choices Idaho offers guides, for the document and also related topics such as dementia and organ donation.

The online resources are extremely helpful, but even more so were the actual conversations I finally had with friends, family, and those with experience in end-of-life care. An advanced directive includes space for comments, nuance, and values. No one could answer these for me, but others could provide context. Our collective experience regarding end-of-life matters is much richer than any one individual’s.

The form took, well, about fifteen minutes. Or twenty years and fifteen minutes depending on how you look at it.

It feels good to print and sign the document. Like any other life decision, this one is made without knowing the future. But I discovered I can influence something that matters a great deal to me if I can lift the burden of those decisions off of my family. Which of course is what people have been saying about end-of-life planning all along.

I take my waking slow. I learn by going where I have to go.

Full text of Theodore Roethke’s villanelle The Waking can be found here and is well worth the read!

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January 24, 2020June 14, 2020

Love in the Room

Tending to Endings (four)

I am no expert on death. I am the new traveler reporting on unexpected discoveries, not the one writing the guidebook. For that, there are people who have worked in this field for decades and who know so much more than I do.

Even so, I feel compelled to share things that made a difference if for no other reason than I could’ve so easily missed them. There is so much we cannot control about death, namely, the loss itself as it barrels on towards us. Sometimes that loss is so big it seems like nothing we do could possibly matter.

In the summer of 2016, I arrived in Portland to visit my friend Susan when there was no longer any chance of her recovering from a brain aneurysm. The family was waiting to remove life support until the following evening when more loved ones would arrive.

I felt privileged to be in that room, but not all that helpful. I mostly wandered from the chair by her bed to the window to the bathroom to the coffee cart and back by Susan’s side. The loss of my friend was already palpable.

Friends began texting me things to tell Susan. I would sit by her and read them. This felt like one small, good thing: reading love aloud and then replying to the sender that I had done so. Days before I had been the one pacing in Boise and my friends Lori and Mary were reading my messages. It mattered.

Not everyone can be in the room. Whether because of distance or timing or because the person needs calm or wants privacy or because most of us collect more friends over a lifetime than can fit around a deathbed.

After the texts I moved on to the messages left on Susan’s Facebook page. A friend dressed in purple wrote “I finally listened to the podcast you sent me about Prince!” Her first-graders held up artwork of birds and messages of love. College friends recounted funny memories. Those of us in the room were reminded of how big Susan’s circle was, how colorful and full her life.

Susan (left) in the Sawtooths with friends Donna and Theresa

Last January, a few weeks after my mom went on hospice care, I was struggling to find ways to bring more relationship into our days. Conversations, even with close friends were stressful for Mom due to the progression of Alzheimer’s. She knew she wasn’t thinking clearly and so she largely avoided social interaction. This was not my mom’s nature, but rather, a symptom of her disease. Mom had a huge circle of close friends, and in her regular state of mind, she would never back away from them.

Mom’s 80th birthday was coming up in August. I talked with my sisters and dad about an idea for an early gift. My mom had often created photo/story books for her grandchildren. Whenever my sons would visit Chicago or Maui or when she would visit Idaho, she would buy a three ring binder and slip photos with a story about their adventures into plastic sleeves.

I asked friends to email a photo of themselves along with one thing they learned from Jane. I included that she was living with Alzheimer’s and cancer and we felt this early gift would be good medicine. I said, short was best as mom could not process a great deal of text, but that her sense of humor was intact. Mostly, I wanted her to see their smiling faces.

It took less than a day for friends to begin sending responses.

Once messages began arriving I saw what a gift this was for all of us. My dad and sisters and I knew my mom’s life was rich, but we had been so focused on the day-to-day. Their words reminded me of my mom’s whole story and helped me to feel connected to her wider community.

Marilyn and Sherm Loken (above); Mom at her every-Tuesday peace vigil (below)

Entries came from former students and fellow peace activists and and grandchildren and bridge group members and college friends and a refugee family my mom had helped resettle. We ended up needing a second binder.

Mom’s response was more than I could’ve hoped. She pored over the photos of friends. She asked me to read entries to her over and over. She smiled.

Eventually she laughed, and said, “These are so nice. If I keep reading them I’ll get a big head.” She began referring to them as her big head books. She wanted me to tell all of her friends that they each deserved a book just like it.

This of course is not a new idea. People create videos and quilts and playlists and piles of greeting cards. But, I am newly aware of how this small thing turned out to be a big thing. Not only for my mom who recognized her life in all those smiling faces. Not only for the family. But for all of us who knew three months later–when Jane Stavoe was no longer on the planet–that we had expressed our love.

In August, Dad asked my nephew Sam to create a digital version and we sent out a link of Mom’s Big Head Book to family and friends on her birthday, the day she would’ve turned 80.

This morning, reminded of all this, I pulled up a YouTube video my friend Susan’s coworker sent to the hospital when Susan first fell ill. Students sit in the grass and tell their favorite things about their teacher: she is creative and kind and funny. She teaches them about birds. She teaches songs. And then they sing “Alligator Pie”. Mostly they say they love her and they want her to get better. One first-grader says, “Mrs. Gardner is almost the best teacher I’ve ever had in my whole life,” and I know Susan is laughing.

Not everyone can be in the room. But you can always squeeze in more love.

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January 17, 2020June 14, 2020

Books by Mortals

Tending to Endings (three)

Hospice workers often say, “Every death is different.” I would add, every decline, too. One reason I didn’t find much literature directly applicable during the time I was caregiver for my mom is that Alzheimer’s affects people in such individualized ways and it keeps changing. My mom was either in a much earlier or a much later stage than whatever I was reading about at the time.

Also, I was grappling with the hugeness of what I was going through at the same time I was trying to figure out how to help my mom remember how to sit down in a chair. Books either left the existential crises out or approached it in a way that felt clinical. OK, I may have had unreasonable expectations on what the average book could offer.

But two helped me a great deal, and I have been recommending them ever since.

I first read Atul Gawande’s Being Mortal: Medicine and What Matters in the End in 2016. Gawande, a surgeon, gives historical and cultural context regarding end-of-life treatment, and he draws on research and case studies and personal memoir–all compelling–to arrive at a series of conclusions:

…our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.

Two years later later when it felt like mom’s options were closing in, Gawande’s words helped me envision a broader landscape from which to make choices. For instance, when I explain to friends why my mom’s dying was beautiful and good as well as devastating, I include that we were able to get her Maui, my parents’ second home and her favorite place in the world.

It may seem an obvious decision. Mom, age 79, had two terminal diseases: inoperable cancer and advanced Alzheimer’s. My parents hadn’t spent a winter in Chicago in fifteen years. Why would we hesitate?

And yet, one constant of being a caregiver was that I was hardly ever sure I was doing the right thing.

Was it more important for my parents to be close to a deeper family support system or to get to their island home? Should we stay near Chicago where there were more medical specialists? Was the nine-hour flight too much for my mom to bear? Also, Alzheimer’s made it difficult to know what my mom truly wanted.

What Gawande’s book gave me was not a prescribed course, but rather, a broader framework. It offered language beyond treatment options: What is important? What is meaningful? What are we afraid of? What would make this a good day?

Those simple questions helped me make peace with a thousand imperfect decisions. A few —like getting mom to Hawaii and onto home hospice care—significantly transformed her experience. Mom spent her last four months at home on the lanai watching whales rather than in doctors’ waiting rooms.

I read the second book, Advice for Future Corpses (and Those Who Love Them): A Practical Perspective on Death and Dying in the weeks after my mom’s death. Sallie Tisdale, a palliative care nurse, covers the particulars of dying from the point of view of someone who has been beside many deathbeds. Her tone is warm and open and direct. Somehow found it very comforting to have versions of what I had just been through recounted. It made me feel less alone.

Tisdale does not suggest that having extensive experience with death means that we understand it. One things that helps me trust both of these writers is each approaches the topic of death with a sense of humility. “I have never died,” Tisdale writes, “so this entire book is a fool’s advice.”

Tisdale’s writing is elegant and honest and often funny. I found her section on grief especially relatable.

No one tells you that grief is like a long march in bad weather. You’re forgetful and find it hard to make decisions and have no interest in the decisions you are being asked to make. You lose track of time, because time changes too, shifting and slowing, speeding and stopping altogether. An hour becomes an elastic, outrageously delicate thing disappearing or stretching beyond comprehension. One is deranged, in the truest sense of the word: everything arranged has come apart.

Ultimately this book helped me consider my own future and that I really do not want my death to usher in complications and decisions and paperwork for those who love me. Tisdale includes an enlightening chapter about the body after death and also useful templates for death plans advanced directives.

Early her book Tisdale writes, “We share a grand social agreement about mortality. We choose not to notice, if we can.” I read both of these books during a time when mortality and all of its messiness was already in my face. I have not always been so ready to read about the end-of-life, and I am well aware that these topics can be anxiety producing.

But I will say that while the books are very straightforward and direct about death— no euphemisms, no glossing over the hard stuff—one reason I am so quick to recommend them is that ultimately, I also found them empowering and hopeful. As honest as these authors are, each also treats the topic of death with gentleness and love. They write about mortality with a great deal of professional knowledge, but also from the perspective of, well, being mortal.

Next week I plan to explore the idea of memory books.

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January 10, 2020June 14, 2020

Talking Death

Tending to Endings (two)

I first heard about Death Cafés when they started receiving press in 2013, and I didn’t think they were for me. The New York Times compared them to salons in the European tradition, but where the topic was always death. I was a live-for-today person. Death was in the future. Why focus on it?

But last summer, when my friend Mary Ellen asked me if I wanted to attend a Death Café, I said yes. What changed between then and now is that I lost people. Also, I entered middle age and began suspecting I really might be mortal. Also, I had seen death up close and it was not what I expected. Most of all, in caring for my mother during the end of her life, I became aware that death is not actually in the future. It is happening all around us every day. Almost everyone I know is walking through end-of-life issues with someone close to them.

And yet, many of us find it difficult to talk about these experiences. More than religion or politics. More than anatomically correct names for genitalia. Death is what shall not be named at the Thanksgiving table or almost anywhere. It is a rule no one told me but that I have always known: Death is private.

I’ve been to exactly two Death Cafés, so I’m no expert. But I wanted to share my experiences here as a potential resource for those looking for more conversation related to end-of-life issues. The Death Café website gives helpful information, particularly on what Death Café is not. It is not a class or a grief support group. It is not a place to proselytize or advertise. It is a place “to eat cake, drink tea, and discuss death.”

My first was held at the Unitarian Universalist Fellowship in Garden City last September. When I sat down, I was surprised to find myself next to a friend who I hadn’t seen in years, a pediatric oncology nurse. Of course, I thought, there are other people who are aware that death happens all around us.

The groups were facilitated by people with career knowledge about death and dying: a social worker, a therapist, a Buddhist chaplain. But the conversation was unplanned and diverse, and our facilitator mostly kept it moving with gentle prompts and questions.

Death Café isn’t a class, but I learned things. Participants came with a wide range of perspectives—healthcare professionals and social workers and people interested in the death positive movement and quite a few caregivers. It was interesting to hear people talk about the end-of-life from so many angles.

Our group moved easily from one topic to another. We talked about ways to begin the conversation of advanced directives with family members; about what it was like to sit by a loved one’s side as they died; about what people envisioned as a good death for themselves.

Our time together included a few teary moments and lots of laughter and interesting questions that got me thinking. But probably the group’s biggest gift for me was how ordinary and open the conversation seemed. Death Café is a place where talking about death is expected. You don’t have to get over the awkward hump of introducing a topic many find difficult to discuss.

One reason I have hope this will become easier in everyday life is because it already has, maybe not with death, but with birth. During my mother’s and her mother’s generation women often didn’t know what to expect when they were expecting. Pregnancy and birth were considered too private to discuss: too scary, too painful, too personal. One consequence of keeping birth (or death) secret is that an important life transition becomes viewed primarily through a medical lens.

I had a complicated twin pregnancy and will always be grateful for the healthcare advancements that saved my sons’ lives. But the story of their birth was much more than a medical journey and so was my own. New motherhood changed my identity, family dynamics, body, ethical and spiritual perspective, career trajectory, finances, friendships, and a host of concrete things like insurance and my sleep cycle. Thanks to a cultural shift that happened between my mother’s generation and mine, I did not feel alone in talking or writing about those changes.

Death, too, is a bigger story, and the death of someone close affects many of these same areas (identity, family dynamics, finances, sleep…). While death may also have some unique hurdles (birth doesn’t need a positivity movement), I believe we have a great deal to gain by being open to conversations about the end of life.

Death Café is one place to start. Participation is free and on a drop-in basis. You do not have to sign up. In addition to the Death Café website, Death Café Boise on Facebook gives local information including dates and locations of gatherings. The next Boise Café is schedule for March 16, 7 pm at Congregation Ahavath Beth Israel in Boise.

But if Death Café is not your cup of tea, or if there isn’t one in your area, or you want to get started sooner than March, it is not hard to replicate Death Café’s main purpose with a group of friends. The more I’ve waded into this topic, the more I have discovered that the awkwardness around death is often just lack of practice, and others, too, are hungry for conversation.

Next week, I’ll write about why I keep recommending two books: Atul Gawande’s Being Mortal, and Sallie Tisdale’s Advice for Future Corpses (and Those Who Love Them).

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January 3, 2020June 14, 2020

Tending to Endings

Tending to Endings

January 3, 2020

I didn’t know what to expect from a Death Café. I think I imagined costumes, though I knew that wasn’t it. Café seems to suggest something artistic or French. Would everyone be in black? Would people be preoccupied with the afterlife? Would someone try to sell me a funeral plan or a cemetery plot?

I walked into the room in the Healthwise building in Boise to find four circles of chairs in a large carpeted room. No stage make-up in sight. No mortuary brochures. Just people dressed in fleece and flannel, or just-from-work clothes. People dressed like this was December in Idaho. By the start time, most of the chairs were full and the room was humming with conversation. Apparently, a fair number of people in Boise (all different ages) want to spend a Monday evening talking about death. I was one of them.

For most of my life, I have not been a fan of endings. I preferred beginnings—a fresh start, an open road, the sense that anything could happen. I did my best to avoid goodbyes, often distracting myself from them with new adventures.

Recently though, I’ve seen endings in a new light and up close. In 2016 I was present for the death of two friends, and then, last year, I spent much of the last five months of my mother’s life by her side. These experiences were profound and challenging and beautiful and most of all humbling.

In fact, the last time I felt a transformation as big was 25 years ago when I gave birth to my twin sons. Why didn’t someone tell me, I thought. Of course, they had tried. But until I felt that wave of change course through my own body and my own heart, I had no idea of its power. I spent the next five years writing about birth and motherhood and little else.

In the U.S., something even more true about death than birth is that we rarely talk about it until it is upon us. Sometimes, not even then.

There are reasons: fear of the unknown, the worship of all things youthful, a belief that dependency is somehow shameful. To mention end-of-life can feel like naming a failure, taboo in a culture that considers anything possible with enough sweat, intention, and networking.

However, I have come to believe this tendency to ignore endings has a high price.

Particularly with my mom’s death, I learned that there were things we could do to make moments better, more livable, sometimes even more meaningful. My father and sisters and I seemed to stumble upon these things in the nick of time, rather than having resources at the ready. We were my mom’s caregivers and emotional support and spiritual guides and yet, we had no prior training.

Like birth, death up close is very different than I imagined. It is less scary and more mysterious. It is bigger and more painful and more intimate and more beautiful. It is more interesting.

I am not alone in recognizing that we may want to rethink our approach to endings. Surgeons are writing books on mortality, hospice has become mainstream, and dozens of people in Boise, Idaho show up at a Death Café on a Monday evening in December. Many are looking for ways to make this final stage of life less frightening, less lonely, more integrated with the rest of life.

I am not sure of my own role in this arena, but I’ve been preoccupied lately with figuring that out. I have read books, subscribed to podcasts, applied to become a hospice volunteer, attended death cafés, considered new coursework and new careers. Most of all, I’ve been doing what I do with things that attract and confound me. I write.

Ultimately, death is not poetry, or philosophy, or theory. It is experience. And like all of the other experiences in our lives, our choices often lie, not in what happens to us, but in how we prepare, perceive, and respond to them. Do we shut down or do we stay open? Do we draw close to community or do we isolate? I suppose my current obsession is because I believe that if we keep our hearts and minds open even to death, we will gain something unexpected, something true.

And so, with this new year and a new decade begins my new blog about endings. This is not a column that that will argue for a particular approach to caregiving or dying, but rather, a place to explore resources and ideas and, most of all, to find support. One of the biggest things I learned as one of my mom’s caregivers is that the specifics of any chronic debilitating illness do not lend themselves to simple answers. Even opinions I thought I was firm on regarding end-of-life care often seemed irrelevant in the complicated landscape of Alzheimer’s and cancer that pervaded the end of my mom’s life. What I believe people need most—caregivers and loved ones as well as those near death—is a supportive, kind community as we navigate the challenging, sometimes unbearable, terrain.

If you are interested in joining me on this gentle expedition—I hope you will subscribe to my blog below. (I won’t share your email address with anyone.) Next Friday I will write more about my experience at death cafés in Boise, which I found helpful and engaging. And in future weeks, I will find other people and places and resources in Boise and beyond. If you subscribe, I will be able to send the post directly to your email. You can also find each week’s post at laurastavoe.com, where you can contribute to the conversation and peruse other resources.

Thank you for reading. I wish for you a new year full of beauty and light.