End-of-Life Planning – Laura Stavoe

December 26, 2021December 26, 2021

Choices

It is common in creative writing classes to begin an assignment by giving students constraints. Write a story in which a lemon, a large body of water, and a gas station all appear. Write a poem where each line starts with the letter J. Write a scene where a man on a job interview accidentally locks himself in a bathroom. One gift of constraints is they keep my analytical mind occupied so something more creative and serendipitous can sneak in the side door.

Life gives us constraints. Some unique to us or to our community and many shared. A dependency on fuel sources that are destroying human habitat. A new variant when everyone is weary. The fact that each of us will die though we don’t know how or when.

My mom lived her life as though her constraints were challenges giving her the opportunity to engage her creative acumen. When she gained weight after quitting smoking, I remember laughing with her on the phone when she said, “It finally occurred to me I could buy bigger clothes!” That was classic Jane. More than positive thinking–though there was that–Mom found her own way through things by looking for where she had choices.

The end game was always for her to be happy in her life so she could continue to be a positive force in the world. She was a giver who did not believe in martyrdom. Which means she found ways to want to do a lot of things that were good for her community and her family and the world.

Dad with Mom on her last trip to Idaho, August 2018

The hardest thing for me to accept about my mom’s diagnosis of Alzheimer’s was that she would not be able to finish her own story. Towards the end of her life the constraints grew exponentially, and her cognitive skills diminished just as quickly making it hard for her to see her way through. Still, she continued to look.

Given the expansiveness of my mom’s life as a teacher and peace activist and poet and gardener and friend, watching her work so hard to find purchase was heartbreaking. Often when my dad would offer her a wedge of pineapple, she would receive it with glee. Once, when she was more pensive I asked her, “What are you thinking, mom?” And she looked up with a small smile said, “I’m thinking how lucky I am that I can swallow.”

Seeing her Jane-ness emerge from around the constraint of Alzheimer’s, that was painful, and also, gold. “These things happen…” Jane Kenyon writes, “the soul’s bliss / and suffering are bound together / like grasses.”

One of the things that has occurred to me while writing a blog called Tending to Endings is that we often don’t know during a health crises (or any other hard time) whether we are near the end or enduring a very hard middle, or on the cusp of a comeback. I look at those two photos of my mom only seven months apart and see that what felt like an era in the life of our family was really one half of a year.

During that last visit to Idaho, my mom’s health wasn’t good. She suffered from radiation wounds from cancer therapy and the Alzheimer’s was wreaking havoc on her short-term memory. But she could still play a mean game of Scrabble; and she knew the mechanics of getting in and out of the car; and when she was picking up her prescription of Aricept and the pharmacist would ask for her birthdate, Mom could still recite it before adding, “You know this is for my memory, right?”

That she would not see another summer? I did not know that. The pandemic has already lasted far longer my mom’s final bout with cancer.

As I’ve listened to more and more friends, family, colleagues, students who are walking through serious health events with their parents or spouses, I’ve realized that they often think the truth they need to accept or get others to accept is that the end is near. But what has often been truer for me is that I don’t know where I am in the story, that the future is uncertain, and the decisions need to be made in unfamiliar and shifting terrain. Sometimes they need to be made on someone else’s behalf which can feel nearly impossible to get right.

Last year I had the privilege of interviewing Chaplain Norm Shrumm about talking to our families about end-of-life wishes, ours and theirs. The holidays seems a good time to revisit the conversation. The whole interview is full of compassionate wisdom, and these words in particular have continued to help me:

And to the point you bring up about dementia like in the case of your mom, it can help to remind ourselves what that role of health surrogate entails. You are being asked to make decisions on a pretty high level emotionally and ethically. There isn’t any trickery there. I think that is what we sign on for: In the event I cannot make decisions for myself because I’m unconscious or because I no longer understand the complexity of the situation or its implications—my health surrogate will make those decisions.

I don’t argue against the guilt because I don’t think that helps. We have guilt because we are in moral distress and there is ambiguity. It is not a slam dunk decision. So, we just need to do this alongside of the guilt.

And what you are being asked to do is to draw on all your love for this person to make the decision on behalf of this person that she is unable to make. You landed in this role for this very reason. And so the moral weight of deciding on her behalf what would be the best death—remembering there is no option available to not have a death—rests with you. You’re being asked to clear the path towards the gentlest death, a soft landing.

Sometimes we get to help people finish their stories. I won’t have all the information I need any more than I know all the variables in my own life.

There was a time after my mom was on hospice care. This was after she had lost the ability to know how to sit down in a chair and had stopped using the whiteboard to find out what day it was and instead would just look to me or my dad for reassurance that all was well. She was no longer the first one up every morning, the way she had been for most of my life. Except on that morning, I woke up before dawn and came into the kitchen to find my mom studying the calendar.

“Would you like coffee, Mom?”

“That would be wonderful,” she answered, and her voice sounded like her old self. I inhaled deeply, noticed she was wearing her robe and glasses. She looked up and her blue eyes met mine.

“Laura, I woke up knowing that I haven’t been right. It’s as though I’m suddenly aware that it has been me who is crazy and not everyone else. I don’t know if this will last, but right now, it feels so good to understand. It’s like I’ve been gone and I am back.”

She was back, and I wanted to crawl in her arms and beg her to stay.

We sat on the couch each holding our mugs. She took long sips from the cup she often requested but, these days, usually let sit before her growing cold. We talked like we had on so many dark mornings throughout my life.

“I am here,” she said, “I am in Maui having a good conversation with my oldest daughter, Laura. I wish I could write it all down. I don’t know how long this will last.” Then she said, “If I wrote a book you know what it would be called?”

“What?”

“Choices. My life really started once I knew I had choices,” and she looked up at the ceiling like she so often would when thinking, and then to me. “It wasn’t which choices, or that I had choices. It was me knowing I had them.”

I too, wished I could write it all down. Wished I had brought my phone into the living room so I could turn on the recorder. Wished she could stay.

That was the last time we were in our rightful roles: mother, daughter. By the time the pastel glow of morning revealed a daytime moon, the fog of Alzheimer’s returned. But the living continued and we made our ways somehow through those final months together. And my mom, Jane Stavoe, shapes my story, still.

More Resources

While teaching the community college course this semester, I put together a list for my students. These are the books and podcasts and films that I find myself returning to often. You can now find that in-progress list at the Laura Library link on my website.

Three recent podcast episodes that I loved and may be of interest are “70 Sounds Young To Me,” a 70 over 70 interview with Diane Meier, a pioneer in palliative care medicine; “The Fullness of Things,” an On Being episode with poet and Zen monk, Jane Hirshfield; and George Saunder’s on Longform, which may be slightly off topic for this blog, but he has been one of the people who have helped me stay more grounded, hopeful, and (I think) kinder during the pandemic. He is a fiction writer, writing teacher, and wise soul.

If you would like to receive Tending to Endings when it publishes, please leave your name and email below. I plan to continue to post once or twice each month in 2022, though not necessarily on a regular schedule. I hope you’ll continue to find it useful. May your last days of 2021 be restorative and full of love.

December 26, 2020January 5, 2021

In the End

Tending to Endings (fifty)

I am incredibly grateful for all who have joined me this year for what I initially called a gentle expedition. End-of-life is not the topic I ever saw myself writing about in the past. Sure, the idea of death has come into my mind often enough. I am a ponderer. However, most often, thoughts of death arrived as a fleeting fears that I tried to contain or make sense of or explain away. Most of all, I tried to avoid them.

As a child, I was even afraid of words associated with death. There was a road sign near my house marking a Dead End, and when alone, I always pedaled faster past it. I was concerned to attend what my mom called a wake (did the dead person ever wake up?). The word cremated seemed especially icky, and the concept utterly terrifying. I found funeral homes unsettling and strange, all the windowless rooms and thick upholstery; the shiny wood coffins lined in satin brought to mind images of vampires. Cemeteries were places to visit on Halloween and only if you were very brave.

I was a child who was easily frightened for sure, but going through this list, I also notice how often our cultural representations of death are paired with images of horror and fear.

Even as I got older, I rarely attended funerals or memorial services, and when I did it was because I felt obligated. They were something to get through. I didn’t know what to say to people I was close to who had lost someone. I didn’t know how to grieve when someone I knew and loved died. Often my experience of grief felt solitary.

Throughout my life I have written about my obsessions which went, in rough chronological order: swim team; boys; nonviolent activism; pregnancy, birth, and motherhood; wild rivers and wild places. I was not interested in the actuality of death, and for the first fifty years of my life, I had the luxury of not being faced with it too terribly often.

Then, within a four year stretch, I experienced four deaths of women who I was very close to: Pat Lambert (November 13, 1933 – February 2, 2015), Susan Gardner (March 25, 1959 -July 17, 2016), Ellen Erksine (November 6, 1952 – July 19, 2016), and Jane Stavoe (August 28, 1939 – April 9-2019).

Pat at her 80th birthday party; Susan holding a future sled dog; Ellen on game day.

I was present for the deaths of three of those women. Susan and Ellen each died unexpectedly and within two days of each other, one in Portland the other in Boise, and I somehow made the seven-hour drive along the Columbia and over the Blue Mountains to the bedside of each in time. I saw the body of each of my friends go from inhabited and alive to uninhabited and dead.

A couple years later, I accompanied my mom up to that same door. The whole time my mom was on home hospice care, I was aware of what a gift it was that this was not the first time I had attended a death. I had far less anxiety about what might happen which made it possible for me to just be with my mom.

On Sunday the New York Times ran two different stories about the physicality of death. “The Movement to Bring Death Closer: America’s Home Funeral Guides Want Us to Be Less Afraid and More in Touch with Death,” is a feature by Maggie Jones that I listened to on The Daily’s Sunday Read, but is also available in print. “What is Death?: How the Pandemic is Changing our Understanding of Mortality,” is an opinion piece by BJ Miller, a hospice and palliative care physician. I found them both compelling and Jones’s feature on home funeral guides particularly rich in story and resources.

Jones writes of home funeral guides,

Their goal isn’t to persuade every family to have a multiday vigil; it’s to support them as they choose the kind of goodbye they want. For some families, that’s as simple as asking a funeral home to wait several hours before picking up the body.

We didn’t have a home funeral guide when my mom died, but we did have a knowledgable and experienced hospice team who were able to suggest things that made a big difference.

I think there was a time when I would have said I don’t need to see my mom when she’s dead because I want to remember her when she’s alive. I certainly would not have known ahead of time that I wanted to help care for her body, but when our nurse Noel asked if my sister and I wanted to help bathe and dress her, we both very much did.

Even after Noel left, we waited a few hours before calling the mortuary. While I felt deep sadness, and the utter stillness of Mom’s body was profound, I was not frightened. In some ways my mom looked more like she did when she was well, free from the confusion of Alzheimer’s and the pain she had lived with for so long. And between the time of death and when the two young attendants came from the mortuary, stopping at the foot of her bed to bow their heads before lifting her, I had gone to be by her side many times. The memories I have of those hours we spent with my mom’s body are quite comforting to me now.

In each of these cases, with my mom, and with Susan and with Ellen, I was not trying to be near mortality, but rather, be near my loved one, which is probably how most of us are eventually tricked into sidling up to death when we finally do.

And Pat’s death, too, which was the first of the four and the one I experienced from a distance, taught me a great deal. When I first learned Pat was in the hospital with pancreatic cancer, I hesitated rather than heading to the hospital with some of my friends. By the next day, Pat was not up for my visit, and when I called later, she didn’t feel well enough to talk. Pat died less than a week after her diagnosis, and I never had the chance to say goodbye. This still brings a lump to my throat.

Pat Lambert’s memorial rock on the Boise River.

After I returned to Boise after my mom’s Celebration of Life in the spring of 2019, I listened to a replay of an On Being interview with Joanna Macy, A Wild Love for the World. Macy was talking about climate change, and the idea that so many people don’t want to think about all of the ecological chaos right now because of how painful it is and how little we can do to stop it. She brings up the double-edged sword of this, and paraphrasing, she says, if your mother is sick and dying of cancer you may hesitate to go into her room because you don’t want to see her illness that you can’t cure. But you go because you love her, and she is your mother.

Macy continues, “…there’s absolutely no excuse for making our passionate love for our world dependent on what we think of its degree of health, or whether we think it is going to go on forever. This moment, you’re alive.”

Being with loved ones at the end of their life has changed my perspective on death. Instead of wanting to pedal faster, I want time, when it is offered, to say goodbye, to help where I can. I want to sit with the fact of it.

During my trip to Maui this month, I looked out at the ocean often and thought how a whole ecosystem exists beneath the waves. A world unaware of pandemics or the election season or me. A world, teeming with life. I am humbled by the face of death. I want to pause and take it all in, knowing there is so much life in the end.

Looking Ahead

I am tempted to share ideas I plan to write about for Tending to Endings in 2021, but then I remember how I thought this year I would be writing from the field–volunteering at hospice centers and visiting mortuaries and nursing homes! It was not a good year for field work, but it was an excellent year for reading and research and reflection and writing about questions big and small. Thank you for staying with me!

Recently I have received three part-time teaching opportunities related to death and dying which was unexpected and wonderful. Teaching has always been my favorite way to learn, and I’m sure it will add to what I will have to share here. I will let you know when I have more information about those courses (two are workshops and one is a full semester class) as well as the family memoir class I will offer online.

Tending to Endings will continue to be cost free and ad free in 2021. Please consider subscribing.

With love and gratitude,

Laura

October 9, 2020August 16, 2021

Words and Wishes

Tending to Ending (forty)

Even with all of my writing and thinking about end-of-life matters, it is not easy for me to open a conversation with family members about death, mine or theirs. With friends, it’s easier, but interestingly, our conversation often turns to how difficult it is to have these conversations with family!

This week, I had the opportunity to visit via Zoom with someone who has far more experience with end-of-life conversations and who knows firsthand how important they can be. Norm Shrumm has devoted many years to hospice work and is currently Chaplain for St. Luke’s Hospice in Boise, Idaho.

Asking for Help

Many find it difficult to discuss end-of-life matters until a parent is already in a serious medical situation. By that point, it’s often the medical staff driving the conversation. Do you have anything to help us begin earlier, before there is a health crisis?

I think people are nervous for a variety of reasons. For one, there is grief in opening this conversation. Also people may fear that they will somehow get it wrong. One thing to know is that the elderly also feel the awkwardness about talking to their loved ones. As we approach the conversation, I think it helps to assume everyone is uncomfortable. Because everyone wants to protect everyone else.

The framework that has been useful for me with my dad that I offer to others is to ask one’s parents for help. We often say that we don’t want to be a burden to other people. And so, I would say to my dad: In the normal course of events, at some point I’m going to be in the position of having to make decisions for you. What would make this much less of a burden for me is if I had some idea of what you would want.

So, I’m the one who is asking—not, how can I help you—but, would you please help me because it is likely that I will be in that circumstance. I think it helps people realize that everyone has a role.

Another thing that can help is to make sure it is a two-way conversation. When I would sit with my dad, I would ask him want he wanted, and then I would also say, let me tell you what I would want.

One tool my family and I used that I would suggest for anyone who wants help with this conversation comes from a nonprofit organization called Five Wishes. They offer resources including the language of a living will, naming healthcare decision makers, and also questions that lead to discussions about values and priorities at end-of-life.

I brought copies of the handbook up to Seattle, where the rest of my family lives, and we set aside a couple days to page through it together. In this way, it wasn’t only about my parents. My siblings and I were all middle aged and so it was certainly relevant to us as well as our parents. And of course it happens sometimes that parents unexpectedly end up being the ones to have to make these decisions for their adult children.

That document let us walk through this process together in a way that was very tender. It was an imperfect process, and not everyone even finished. But it didn’t feel grim. It felt very loving, and it brought forth stories and lots of laughter as well as tears.

I would add that during this time where COVID has changed hospital protocols, it is even more important to have these conversations. Right now, the expectation of people gathered around a hospital bed making decisions for someone is not happening. So, all the more reason for people to have a conversation ahead of time. We need to be able to say to each other—I need you to help me with something. Because, to do nothing is not a good option.

Since the COVID crisis, Norm Shrumm has begun end-of-life conversations with his son, Kevin.

Allowing for Natural Death

And can you say more about why doing nothing is not a good option?

One of the questions I ask when people come onto hospice care is, How do you see this going? Help me to help you have the kind of ending you envision.

Most people will say they want to die peacefully at home and to be kept comfortable. But if decisions are not made clearly and communicated ahead of time, there is a danger of taking a very different course.

When the EMTs come upon a 98-year-old man who is unconscious with no pulse–unless they have more information–they have no choice but to begin pounding on his chest to try to get him back. This is because the healthcare system is driven by these defaults and driven by people avoiding liability.

One of the positive changes I’ve seen is in the language about how we talk about medical interventions. Rather than having a Do Not Resuscitate (DNR) which to me sounds like I’m saying–I give you permission to abandon me if I’m struggling–the forms are beginning to use the language Allow Natural Death (AND), which seems a far better description of how most of us might want to be cared for in our last moments.

So the question is not, “Do I want to live or want to die?” Choosing CPR is not necessarily a choice to live, but it is a choice to get beat up en route to possibly waking up in ICU on a ventilator. The likelihood of getting someone back to baseline, especially someone elderly, is not good. And so there should probably be an acknowledgment that this question is not choosing between life and death but rather, what kind of treatment they want to experience.

If someone tells me, I want to die in my own home with my loved ones around me. Then, I say, You want an early hospice referral. That way, we can get you home with a team of people around you who are ready to stay the course and won’t intervene and do something that will bring about more difficulty.

Yes, No, Maybe

Sometimes I found the questions on the Advance Directive forms difficult because they seemed so definite. “Do you want to be on life support?,” for instance, seems more complicated at 55 than 98.” I always want to say, “Well it depends.” Can you say something about that?

Yes, first, all of these documents offer an open box that allows for modification. It doesn’t have to only be yes life support or no life support. You can include preferences in an Advance Directive such as, I am only willing to be put on a ventilator if there is a reasonable likelihood of my return to a good quality of life.

Of course, as we get older, what we mean by quality of life keeps changing and we can keep modifying that. I visit people in nursing homes who don’t know their families due to dementia and yet from what I observe, they have a good quality of life. So we have to be careful about being too hard and fast about our judgements.

I have a story from a chaplain I work with. A woman was on life support, and she and her husband had had this conversation ahead of time about what they each wanted. She had told him, she was only willing to be on life support for three days. On that third day, the husband tearfully told the team that by the end of the day, they needed to remove the ventilator because he had promised her that he would follow her wishes.

The doctors let him know they believed there was a chance for her recovery with a couple of more days of support. But he felt it was important to keep his promise. Ultimately the team and the husband decided to reduce the woman’s sedation, which is unpleasant but which also might give her the opportunity to interact. Within a few hours the woman was alert enough that she could answer questions on a white board. Someone asked her, “Do you want to stay on a ventilator for a couple more days? We think it could help.”

She wrote on the whiteboard, “Yes.”

And the husband was beside himself because she had been so adamant. He said, “Honey, what do you mean? You always said, only three days.”

She took back the whiteboard and wrote, “Change in perspective.”

So you can include preferences in your Advance Directive that allow for these changing circumstances.

Keep Talking

It seems to me that these examples point to the importance of continuing the conversation rather than answering the questions and sticking the paperwork in the drawer?

One of the things I asked of my family members during our Five Wishes gathering, was rather than saying no to any life support, would they instead allow for being placed on life support long enough to give time for family to gather. I was the one family member who no longer lived in the Seattle area, and I wanted the opportunity to be present if I could. At that time, my parents were in their eighties and my mom was already experiencing heart and kidney problems and needed dialysis.

About a year after that gathering, I visited my parents again and this time my mom looked even more frail. As I kissed her goodbye, I said into her ear, “Mom, I know a year or so ago I asked that people in the family be willing to be on life support until I get here. But, the fact that I live a half days journey away is on me. That is not your problem.”

I thought she would answer, Oh honey. That’s ok. I’ll still do it. But that’s not what she said. Instead she kissed me, and she said, “We have had a wonderful life.”

So, these ongoing conversations really invite us to complete our relationships while we can.

Understanding Surrogacy

Can you say something about selecting a health surrogate and maybe especially something for those who have family members who have lost cognitive capacity due to Alzheimer’s or serious dementia? For me it felt more complicated because my mom could converse but not necessarily understand the context of her situation or her choices.

For a variety of reasons, naming a health surrogate, which may also be called a health agent or a medical power of attorney, is even more important than the paperwork. To have someone show up to talk with the medical team who knows your mind and who understands your wishes is a much stronger support to the team than a piece of paper. Medical professionals are more likely to follow the directions of a health agent than words on a piece of paper, and in fact, they will listen to them over the paperwork.

And it’s important to talk to that person about the decision. Some people who you might be inclined to select—maybe a sibling or a spouse—might say, “I could never take you off life support.” Stranger things have happened in the hospital. So it is important that the people around you and especially the people you select as healthcare decision makers understand your priorities.

And to the point you bring up about dementia like in the case of your mom, it can help to remind ourselves what that role of health surrogate entails. You are being asked to make decisions on a pretty high level emotionally and ethically. There isn’t any trickery there. I think that is what we sign on for: In the event I cannot make decisions for myself because I’m unconscious or because I no longer understand the complexity of the situation or its implications—my health surrogate will make those decisions.

I don’t argue against the guilt because I don’t think that helps. We have guilt because we are in moral distress and there is ambiguity. It is not a slam dunk decision. So, we just need to do this alongside of the guilt.

And what you are being asked to do is to draw on all your love for this person to make the decision on behalf of this person that she is unable to make. You landed in this role for this very reason. And so the moral weight of deciding on her behalf what would be the best death—remembering there is no option available to not have a death—rests with you. You’re being asked to clear the path towards the gentlest death, a soft landing.

So, coming back around to that original question that we started with saying: Will you please help me because I may be in a situation to have to make decisions when you cannot, and I would rather have that information. That way, when the time comes, I won’t be making decisions about removing life support. Instead, I can be with you, sharing those last days with you and helping you towards that soft landing.

More Resources

Thank you to Norm Shrumm for sharing his time, experience, and wisdom. Here are a few resources he recommends for those who want to learn more.

Dying Well: Peace and Possibilities at the End of Life, by Ira Byock, M.D. A palliative care and hospice physician shares his own insights with an aim at helping people experience less trauma and more peace at the end of life. Published in 1997, this book begins with an emotional and insightful account of Byock’s experiences during the death of his father. He is also the author of The Four Things that Matter Most and The Best Possible Care.

The Five Wishes website includes handbooks with guidance on a broad range of end-of-life issues and includes guidance towards finding information specific to your state.

For those who live in Idaho, the website Honoring Choices Idaho offers a number of templates and guides you might find useful.

If you would like to subscribe to Tending to Endings, please leave your name and email below. It is cost free and ad-free and I will not share your email. Tending to Endings aims to build community and conversation around end-of-life matters. If you don’t see a comment box below, you can get to the comments at the end of the post here. You may also reach me at laura@laurastavoe.com. Thank you for your interest!

June 12, 2020July 16, 2020

Mending

Tending to Endings (twenty-four)

In November of 2016 I visited my Mom and Dad in Maui. One evening I asked them if I could read a letter:

In recent years, I’ve become more aware of how some of my actions in the past were hurtful. You have always been so generous and loving to me that it didn’t even register how unthinking I was sometimes, even well into my adulthood.

When I pull that letter up from my computer now, I have a number of responses to the timing. One is that I can’t believe it took me so long to see how some of my actions affected my parents. The things I wrote about in the letter were more than fifteen years old in 2016. They weren’t secrets to them or me, I just had not discussed them directly.

Secondly, I am struck by the timing because any further hesitation and I would’ve been too late. My mom’s cognitive abilities were declining, something that happened slowly at first, but accelerated after her second cancer surgery. Had I waited even one more year, my mom would not have been able to receive the information without it causing confusion and probably distress.

Life prompted me to do this work. My summer had been marked by loss. My friends Susan and Ellen had each died unexpectedly in July, Susan of a brain aneurysm and Ellen a two days later of an infection. These deaths of friends who were near my age and who I was very close to brought my own mortality into focus. They also gave me insight into particulars of death related to relationships.

For example, Susan’s husband and daughter were incredibly welcoming to friends and colleagues and extended family when Susan was in a hospital on life support. The time there was very difficult because we were losing Susan, but I also witnessed an ease in the relationships among those who came to help help and to express their love and to say goodbye. When Susan was removed from life support, she was surrounded by friends, colleagues, step-children, her daughter and son-in-law, her husband, and her ex-husband, Katie’s father.

Susan and I had been friends for many years, and I knew what I was witnessing was a result of her commitment to the work of nurturing and mending relationships. Even the medical staff commented on how rare it was to have so many caring people lending support.

Susan had lost her own mother to cancer when she was in her twenties. And in that hospital room in Portland, I knew that the single most important thing to Susan that day and going forward would be that Katie had her dad by her side and a circle of strong support around her.

This experience prompted me to take stock in a more deliberate way. What I needed to tell my parents was that the distance I had put between us during hard times in my life was never because of them but because of me. For much of my young adult life, I made a habit of pulling up stakes and starting something new whenever things got too painful. I would leave jobs, relationships, whole states behind and then throw all of my attention into something new.

I would talk to my parents about these changes after everything was back together again, and I felt on stable ground. Or, on those occasions when things were so bad that I needed their help, something they always graciously and lovingly provided. This pattern continued until 1999 when I was going through a second divorce at the age of 34.

I had many relationships to mend after that and a lot of work to do. Certainly in the fifteen years between that time and my amends, my relationship with my parents had already grown much closer due to those changes.

Still, I had never directly acknowledged how the distance I created hurt them. My mom had made a practice of never guilting us about anything, and it was fairly easy for me to remain in my self-centered haze. But now I had adult children of my own. I was freshly aware of how difficult that time of distance must’ve been for my parents, when they knew their daughter was struggling.

I am deeply grateful for the nudge that prompted me to write and read that letter. I was able to tell my parents that I saw how much they loved me all along and that they had always made it easy for me to come home. I told them that their loving support made all the difference in my life when I finally was ready to grow. I told them thank you.

My mom told me she knew all that and that she loved me and that I was a beautiful writer, which is exactly what my mom would say. My dad folded the letter and thanked me and told me he was going to keep it in the nightstand to read again. I could tell that it mattered to him that my mom got to hear my words.

Often my amends lately have been recognizing and receiving love, sometimes belatedly. Many people besides my parents have been good to me throughout my life, and I at times have been too self-centered to notice the depth of their care. I think of my friend Louise who I only recently reconnected with about two years ago after having lost touch in 1991 when I moved from San Diego to Idaho.

When I was going through my first divorce, I was in a great deal of pain and fear. I was also in graduate school and pretty much avoiding feelings by staying very busy taking 22 units and student teaching and commuting on the weekends between San Diego and Los Angeles.

Louise knew I was struggling and that I was more isolated than usual, and so she mailed me a letter every week that I received at my rented room in Los Angeles. I only remembered this now because while going through boxes during quarantine time a few weeks ago, I found piles of handwritten cards and letters and artwork she had mailed me. One for every single week of the year I was away. I am someone who resents having to find a stamp and envelope when bill arrives that I can’t pay online, so I was impressed by her commitment!

I’m sure I appreciated Louise’s notes at the time, but I hadn’t even remembered this act of love. I was so glad I found them and that we are in touch again so that I can say thank you for reminding me during that time that I wasn’t alone.

Laura and Louise 2017. Letters from Louise, 1989.

This work of righting wrongs of course takes many forms in spiritual and religious traditions as well as programs for addiction recovery, counseling practices, and justice groups. Sometimes it is called reckoning or reparations or amends, all of which imply an admission of wrongdoing, an attempt to repair, and a commitment to doing better going forward.

Going forward, I made that commitment to remain open and available to my parents. I became more actively engaged in their lives, and I showed up when I could be helpful. Which of course ended up being the greatest gift of all for me. I was able to be present during the years when my parents needed me most and to be by my mom’s side when she died.

Frank Ostaseski writes in The Five Invitations, “as people come closer to death, I have found that only two questions really matter to them: Am I loved? and Did I love well?”

The second question in particular was one my mom asked in different ways during the last weeks of her life. Had she given enough? Had she shown enough love? My dad and my sisters and I took turns reminding her of all of her grandchildren she nurtured, the children she taught, the daughters she’d raised. We read to her all of the stories her friends had sent about her teaching and activism and book groups and gardening. My mom was a sharer of ideas and enthusiasm and love. What a gift to be able to crawl in bed beside my mom during those last days and whisper to her about all of the ways she loved us.

More Resources

Most books I’ve read recently about death and dying spend at least some time on addressing the topic of unfinished relationship work. One that went into more depth and approached the work from a variety of interesting contexts is The American Book of Living and Dying: Lessons in Healing Spiritual Pain, by Richard F. Groves and Henriette Anne Klauser.

I also want to mention that one of the reasons this topic came to mind this week is because like many, I have been reading antiracism scholars including Ibram X. Kendi and Robin DiAngelo both of whom speak powerfully to different facets of antiracism work. One thing DiAngelo’s White Fragility offers related to amends are examples of ways to acknowledge and take responsibility for times we fall short in a way that does not put more pressure on the recipient or do more harm.

If you would like to subscribe to Tending to Endings each Friday, please leave your name and email below. Thank you!

May 1, 2020June 14, 2020

Imperfect Plans

Tending to Endings (eighteen)

A friend recently sent me a link to an end-of-life planning guide, a checklist her daughter had passed along to her. It came to her the way these things often do—because her daughter had lost someone and then had to try to retrieve all of the necessary information to take care of loose ends which involved figuring out accounts and passwords and estate paperwork and utility providers. It is often a daunting project full of frustration.

It made me think of that question asked on medical dramas: Are your affairs in order? To which even after all my talking and writing about tending to endings, I can still only answer, some of them.

I was grateful for the list. A stay-at-home order during a global pandemic seemed a very good time for end-of-life planning. I didn’t want our kids to have to wade through everything or guess at what we would want.

Then, I opened up the webpage and saw twenty-six different templates, most requiring me to gather information from various locations. I looked at the cabinets in my office and thought of the information stored on various bank and institutional websites or in boxes in the garage. I looked at the blinking curser on the fillable form and then I closed the file.

This isn’t the first time I’ve begun this project. In fact, last year when my mom was sick it started to seem rather important. None of it more so than my will, which I had not revised since I was a single parent 18 years ago, which means I’ve blown past at least five of the suggested times experts say you revise your will.

I had coffee with a friend who is a lawyer, “Do John and I need a lawyer, or can we just write out what we want?” I asked. “We don’t have much.”

“Have you and John adopted each other’s kids?” she asked.

“In our hearts, we have.” Which is pretty much how I like to do things, with all of my heart and saving the pesky legal details for last. John and I didn’t even wed until five years together. By then our lives and families were very much married in by practicalities and commitment and love.

“You need a will,” she said. And then she described a scenario that involved a car accident in which one of us dies and the other is in a coma and then dies a week or two later. The point being, without a good will, we run the risk of inadvertently disinheriting one set of kids.

That seemed pretty important. I went home and told John, and we talked about it and agreed we needed to get on it. Then another year passed.

There is something about having to distill life’s most emotional transitions into legal language that stumps me. These feel like sacred decisions that for the sake of legal clarity have to be worded as though we are in a courtroom.

And some of my trouble has to do with how I work and think. When writing, for example, I lean towards what some would call an organic process. Others might call it a mess.

There are writers who start with structure and then flesh out their ideas. They find outlines helpful. They think the academic five-paragraph-essay demystifies the writing process. They understand and actually use bullet journals. My journal, by comparison, is a combination of a computer file in Scrivener, a soft leather-bound book on my shelf, a spiral that also contains to-do lists, and index cards I carry when walking then fold and toss in a box (with thanks Anne Lamott).

I begin every project with far too much material and I have to write and write before I even know what I really want to say. Only then can I pare away what doesn’t belong and then rebuild again.

A writer is not so much someone who has something to say as he is someone who has found a process that will bring about new things he would not have thought of if he had not started to say them. –William Stafford, A Way of Writing

And so a fillable form with its blinking boxes doesn’t really work as a starting point for me. Not for something important like a will or a death planning guide.

Instead, on the second week of our stay-home order during the coronavirus pandemic, I sat down with John to talk about what we wanted to happen to our estate if something happened to one of us. He is 64. I am 55. We have five grown children between us. The conversation was long overdue.

Each of us and all of our kids are are generous. We share well and we all prioritize many things above finances. John and I love and admire and respect the kids we brought into the world and the ones who became family later. We wanted things to be equal. Still, the more we talked the more we saw that even a goal of being fair isn’t always simple. Not from every angle or given every variable.

Our family lacks the symmetry of the Brady Bunch. My sons were six when John and I first got together, and John has helped to raise them. John’s daughters were adults and living very independently when John and I met. Karris, Amy, and Marcy are my family, but I didn’t parent them. Our kids love and admire and enjoy each other, but they were not all raised as siblings in the same home.

John and I talked through things and then drafted a letter that included not only information about property, but the basics of our advanced directives and who our executor would be and where we would keep more specific instructions. We created an In-Case-of-Death (ICOD) folder that is still in progress and that we will continue to add to. We included a section in the letter about how each of us felt about death. And life, too. It included quite a bit about how we felt about them.

We invited discussion. At first I worried. What if we explained something poorly, what if we offended someone, what if we had missed something, what if what we thought was fair seemed unfair to one or all of them? What if they thought we were weird for sending such a personal letter? What if it caused discord?

And then, of course, it came to me that any of those things would be fine. They would be fine because we are still here and we could listen and talk them through, which is so much better than having that response after one or both of us are gone.

Our plans are imperfect, and we are far from done. But I feel much, much better for having started the conversation and the paperwork. And really, can something called affairs, ever truly be in order? We call them that because they are in flux and hard to pin down with a better, more specific word. Our affairs don’t just mean the numbers, but the tasks undone and promises made and amends still owed and the details of our life which is still in progress.

At first what received back from our kids was crickets. At least for a couple days. Then, eventually, from each, sometimes with a bit of prodding, acknowledgement and appreciation for taking the time and being clear. And kindness.

When I talked to one of my sons, Dylan, he said, “Yes it all seems fine. It’s hard to think about, it seems a bit morbid. Maybe that’s not the right word.”

“I think of death as natural, though. It will happen to all of us.”

“Yes, I know. But just because it happens to everyone doesn’t mean it’s not serious.”

And I knew what he meant, and I was grateful even that he saw it that way. It is serious, maybe even sacred.

Sometimes I wonder if we avoid conversations about dying as much out of fear of intimacy as fear of death. Our wishes surrounding death and our anxieties, too, speak to what we hold most dear, what we don’t want to lose, what part of our heart we hope will continue to live.

More Resources:

If you are interested in the list of tools my friend sent to help organize end-of-life documents you can find them on the at livingsmartguides.

If you would like a more organic method of thinking through end-of-life matters, I found these questions helpful in getting started:

Who do I want to make decisions if I can’t make medical decisions for myself and what information do they need?
Do I have any unfinished relationship work? What to I want people to know?
Who will take responsibility of pets, children or other dependents.
What happens to the property when I die?
What happens to my body when I die?
Where is everything and how do people access it?
What spiritual practices or end-of-life services do I want?
Do I want a legacy project or memorial fund?

A book I’ve mentioned before that has helped me a great deal and that includes a planning guide is Advice for Future Corpses (and Those Who Love Them): A Practical Perspective on Death and Dying, by Sallie Tisdale.

I would love to have you as a subscriber! Please leave your name and email below and I will send you Tending to Endings each Friday