Tending to Endings – Page 5

February 5, 2021November 29, 2022

About This

Tending to Endings (fifty-two)

My mom’s last clear words were, “You know, we’ll probably need to laugh about this.” She said them days before she died, when she was no longer eating or drinking. When the most we usually got was a wince for pain, or a puckering of lips when she wanted us to come in close for a kiss.

That morning, upon awakening, she noted our dismay at the state of things—her wound, the need to turn her to relieve bedsores, our pain at seeing her pain when we did. The words sounded exactly like what my mom would’ve said pre-Alzheimer’s, pre-cancer, pre-dying. They were a balm for my despair. Mom was still herself.

Mom never ever forgot that life for all its sacredness was also very funny and she worked hard to not let me forget it either. My tendency to be sensitive and serious–or as she would say it, to feel things very deeply–was what she liked best and least about my personality.

When I was young, and my sister Sandy (two years younger) was being difficult, she would tell her to go play out in the middle of Highway 83. Sandy, would grin, eyes sparkling. And I would burst into tears because my mom never told me to play in the middle of Highway 83, which I took as evidence that they had a special something.

When my mom would recount this story later, she said, “I couldn’t say that to you because you would’ve gone and done it!”

Sometimes when I think of the writing I do about my mom and how she would feel about it, I think she would remind me to include more funny parts.

I am better at laughing at myself and at life than I was as a child, but it has taken a village to get me there, a village led by my mother.

This was true even throughout her illness. When we were caregiving, and she would notice my father or sisters or I getting serious and sad, she would emerge with some quip. Part of this may have been distraction from pain. But, more than that it seemed she was saying, hey, it’s me. I’m here!. My mom was never one for melodrama, and I suspect our moments of intense emotion made her feel a little lonely.

On the morning my mom died, we called our hospice nurse, Noelle. She came and helped us bathe my mom one more time. It was an unexpected task that felt emotional and sacred. Also, I am a kinesthetic learner, and it was good for me to have something physical to do, something that held me there in the room while the fact of my mother’s death caught up with me.

Afterwards when we had mom dressed in a silky blue top and the shorts she liked to wear, and covered her in a prayer shawl Amy brought, Noelle said she would call the mortuary and we could either have Mom’s body picked up right away or we could spend some time with her. Amy and Dad and I kind of looked at each other. It was one of those moments where we weren’t sure what we were supposed to want, much less what we did want. Did we want more time with my mom’s body?

And then my dad looked at the clock and saw it was 9:30. And the three of us remembered, the dishwasher installer was coming sometime between 10 and noon.

“Let’s wait a bit,” my dad said, “I need to figure out what to do about the dishwasher delivery.”

I wished my dad didn’t actually named the reason. It seemed wrong to have a decision about my mother’s dead body hinge on an appliance repair schedule. But, Noelle had been our hospice nurse for five months now, and she knew and accepted us with all our quirks. Also, she was aware our mom and wife had just died, so we might not make much sense.

Before Noelle left to visit her next patient, she told us to turn the air conditioner on high. She said she would never ever forget my mother, and I could tell she meant it. She hugged each of us.

At first my dad and Amy and I decided since it was likely on its way, it would be simplest to just close the bedroom door and wait for the dishwasher. We knew how hard it was to get things scheduled in Maui, and admittedly, we were tired of doing dishes by hand. Given all the care my mom needed, it had been the least of our worries, but now, was it wrong to want one thing to be easier?

Amy, as though reading my mind, said, “Mom would definitely want us to have a working dishwasher.”

But as soon as I went to pull the bedroom door closed, the whole thing felt wrong. Like I was hiding something. (Maybe even a dead body!) Like the incongruity between having something as mundane as a dishwasher installation in one room while my mom’s body was in the other might make me explode. Would I even be able to keep the secret? Or would I burst like some character out of a story by Edgar Allen Poe?

I returned to my dad and said, “Maybe we should track this guy down and see if he can come this afternoon?”

My dad was even more bereft than I and thus open to suggestion. He called to get the number of the driver and left a vague message about a death in the family (not specifying the death was in our condo). He said, “I know it’s probably already on the truck, so maybe come right away or late this afternoon?”

“Should I call the mortuary?” I asked.

“Let’s give them a couple minutes to respond,” my dad said, setting down his phone, staring out to the sea.

I made phone calls to family members and found myself compulsively explaining to my Aunt Gail the complication of the dishwasher delivery being scheduled at the same time as the mortuary pick-up.

Gail, a nurse, is good in a crisis. “I don’t want to be bossy, Laura,” she said with a small laugh, “But cancel the dishwasher.”

“I know,” I said, making a firm commitment to myself to do so as soon as I was off the phone. Who cares if we ever have a dishwasher? My mom was dead.

Then the doorbell rang and its seven tolls echoed throughout the condo. “Well, hello! You’re here, come on in!” my dad said in his cheery midwestern voice, as if this was any old day.

And then a man wearing a Blazing Saddles baseball cap introduced himself as Rocky, and made his way towards the kitchen followed by a quieter, skinny man rolling a dolly with the giant box containing, I assumed, our new dishwasher.

I leaned the guest bedroom door closed and crept to the very back corner of the room hoping my aunt didn’t hear and wouldn’t judge us for not immediately cancelling the dishwasher delivery the moment my mother died.

After my conversation with Gail, I made calls from the lanai, where I could compete with the sound of the surf rather than the sounds of the old dishwasher being extracted.

I called my aunt Carol who had been in Maui helping to care for Mom the month before. We were both teary and somehow unbelieving of the news we had known was coming for months. While we talked, my eyes were trained on the water the way they always are in Maui, and I told Carol when a sea turtle swam to the edge of the coral reef in the water below.

“A good sign,” I said.

Then two men walked from the beach up to the seawall and as one stepped up the stairs, I saw the other reach for him to turn him around. At first I thought an argument, and then the reacher dropped down on one knee in the sand, extended a hand with a small (not-a-dishwasher) box.

I narrated all of this for Carol.

“Your mama is loving all this life happening,” she said.

I turned around to the bedroom to my mom’s body on he other side of the glass slider. Saw her chest not rising or falling with breath. Saw her not laughing or wincing or wondering or talking, not thinking, not breathing.

I said goodbye to Carol and slid open the glass door and went to sit with my mom. Or rather, I sat in the room where my mom’s body was and where I looked from pastel corner to corner and then out at the blue water and then asked, Where are you?

I talked to her wherever she was. We laughed about how my dad was playing host, probably offering the worker guys iced tea. I told her my sisters and I would make sure my dad was ok. I sat and breathed next to her not breathing body.

Then I went back out into the living room to be with Amy who had also finished her calls. Rocky was swearing and then grumbling in the kitchen. Finally he announced to my dad, “This opening is not made to specs.” In other words, the new dishwasher—guaranteed to fit —did not fit.

Amy looked to me and we sank lower onto the couch laughing quietly shaking our heads at the strangeness of it all.

“You know this is Mom,” Amy said. “She really didn’t want us to be sad!”

Eventually Rocky and his partner wheeled the old dishwasher out of our condo. It had taken some dismantling of tile work, but the new dishwasher was humming quietly, its red signal light on.

I called the mortuary.

My dad went to the bedroom to sit next to his wife. Or rather, to sit one more time next to the body of the wife he lived with and slept next to and laughed with for fifty-six years.

Mom would’ve liked that the reason we kept her body close to us longer, was not because we couldn’t bear to let it go, but rather, because we couldn’t bear to do dishes by hand one more day. That is how she would have told the story, preferring that detail even more than the sea turtle or the marriage proposal on the sand.

Maybe this is one of the things my mom and I did for one another in our longstanding love. I eventually learned to laugh at myself, and she made space for more deep feels, and we each reaped the benefit of wider vision, a better story, a fuller life.

More Resources

Last weekend I facilitated a workshop on writing about grief and a woman in our group told us about a podcast I had not heard of called Griefcast. Each week, the host, Cariad Lloyd, talks with a different comedian about someone that person has lost. The conversations are honest and often sad, but also of course, they are people who have a talent for seeing the humor in everything. As Cariad says in the introduction, “It’s bleak, but you’ll laugh too.”

Alice Bechdel’s Fun Home: A Tragicomic (2006) was one of my favorite reads last year.

My next writing workshop, Beyond the Obituary: Writing End-of-Life Stories is schedule for Saturday, March 6, 10 am-1 pm. The workshop is free and is offered with support from Idaho Humanities Council. Donations to the McCall Arts and Humanities Council are welcome.

That writing workshop is also part of McCall’s Cabin Fever Series: Conversations on Aging and Dying which includes workshops and panels on a variety of topics including grief, end-of-life planning, and caregiving. All events are online and participants do not need to live in McCall to join.

Thank you for reading Tending to Endings. I would love to have you as a subscriber! Leave your name and email below, and Tending to Endings will arrive in your inbox on the first Friday of every month. Thank you!

January 8, 2021January 8, 2021

Writing Life

Tending to Endings (fifty-one)

My friend Ana and I went for a walk sometime mid spring as the pandemic was taking hold, me walking in the street and Ana on the sidewalk so that we could keep six feet between us. We were not yet sure how the pandemic would affect us financially or health wise or, even more concerning, how it would affect our children, all in their twenties and still launching their adult lives.

Hospitals in Italy and in New York were filling with patients and running out of ventilators. Our empty neighborhood streets seemed eerie, like the quiet before a storm of the likes we had never seen and we did not understand.

We talked about how hard it was to write anything of substance while the whole world felt topsy turvy. We talked about not knowing what was even important enough to write about. I had just started Tending to Endings, and I couldn’t decide whether a blog about death and dying during a pandemic was serendipitous or the worst timing ever.

And then I yelled over the curb, Nouns! We don’t have to write anything important but we need to journal and include nouns!

Ana nodded, and cocked her head, waiting. She is a good friend, and she knows if she gives me time I’ll eventually make more sense.

I told her how when I go through times of great upheaval—say, the complicated pregnancy where I didn’t know for months whether my sons would make it—I cannot write anything of substance. During those long days that turned into months, I couldn’t even read anything but formulaic detective novels.

But I jotted down things in my journal each day. A few thoughts. A couple feelings. And yes, people, places and things: the green pitcher of water on the end table, the hyacinth growing through hard cracks in the flowerbed, the medication pump I wore clipped to my pajamas that was the shape and size of a pack of Camel non-filters.

Someday that would become my favorite story, but I hadn’t lived it yet.

Flannery O’Connor famously said, “I write because I don’t know what I think until I read what I say.” I love this quote and during calmer times when I have reserves, I find it true.

But during times of illness or huge loss or upheaval, I’m not sure the first order of writing for me is about making sense of anything at all. All that matters is whether my babies are going to make it to the point where they have skin that will withstand touch and lungs that will breathe air.

Instead, I think that during chaotic and confusing times, times of loss, writing tethers me like some umbilical cord between inner and outer worlds. It is how I don’t lose sight of what is right at my feet when anything more than this step is too much. I write thoughts, feelings, and concrete nouns, while every sentence on the page really says the same thing. I’m here. I’m here. I’m still here.

My favorite places to teach writing have always been with those in the midst of things or on a precipice of big change: juvenile detention centers, the school for pregnant and parenting teens, at camp on a wilderness adventure, the cancer unit of a Boise hospital. There is something about creativity that is begun amidst upheaval—before we know where things might go or how they might end—that feels particularly vivid. Maybe it is only that writing in the middle of things means I have to pay attention. And paying attention makes for better art and better life.

I was excited back in 2001 to teach the drop-in workshop at what was then called Mountain States Tumor Institute in Boise. The class was part of a new integrative health program open to cancer patients and caregivers and hospital staff. And I was nervous, too. I didn’t have much experience in a medical setting and I wondered how it would go with so many different perspectives in the room during such a vulnerable time.

One of the books I read in preparation for the workshop at the hospital was John Fox’s Poetic Medicine. It is full of poems and anecdotes and teaching ideas. But one of my favorite lines of the book is from the preface which was written by another author, Rachel Naomi Remen, M.D.:

Our poetry allows us to remember that our integrity is not in our body, that despite our physical limitations, our suffering and our fears, there is something in us that is not touched, something shining. Our poetry is its voice.

And what I remember most about that conference room as we lifted our heads to listen to what each had written was how poems would begin with chemo or medical charts and make their way to planting green beans in the garden after work or the puppy that the grandkids brought by for a visit or the messy sweetness of a shared slice of watermelon. It didn’t matter who was a patient or a chaplain or a caregiver or a teacher. We could see each other, and we were all here.

Resources on Writing

In February I’m offering a three-part workshop focused on saving family stories for future generations: Writing Family Memoirs: Getting Started. Please take a look at my workshop and events page if you or or someone you know might be interested.

I will also be teaching two half-day writing workshops through the McCall Arts and Humanities Council, Room for Grief: Writing through Loss will be held online on January 23 and Beyond the Obituary: Writing End-of-Life Stories will be held online on March 6. These events are free but with a suggested donation to the McCall Arts and Humanities Council for those who can offer support. I would love to see you there!

If you want to explore writing on your own, two classics that I’ve found particularly helpful for getting into the practice of writing are Anne Lamott’s Bird by Bird: Some Instructions on Writing and Life and Natalie Goldberg’s Writing Down the Bones: Freeing the Writer Within.

Other Resources

The McCall workshops listed above are offered as part of a winter series: Looking Ahead: Conversations on Aging and Dying offered by Community Hub McCall. They are open to the public and explore many topics I’ve written about in Tending to Endings including a Death Cafe event, advance care planning, and caregiving. I’m excited to attend some of these events myself. Sessions are online and either free or for a suggested donation.

If you would like to receive Tending to Endings the first Friday of every month, please leave your name and email below. Tending to Endings aims to build community and conversation around end-of-life matters. It is always free, and I do not share your info. Thank you for your interest!

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

December 11, 2020December 11, 2020

Missing Jane

Tending to Ending (forty-nine)

Dad and I talk about my mom often, but it feels particularly poignant here in Maui in December, two years after mom’s last Christmas. Here I can stand where her hospital bed was. I can lounge in the chair where she watched for whales and wondered each day at how she ever got to be so lucky. Here, I walk the same floors she and I paced together on the nights when she was agitated and too afraid to sleep.

And here, in the living room, I remember sweet moments like when my parents sang a duet, each holding the other’s gaze, my mom so weak her words came out as a whisper. I assumed it was a love song or maybe a solemn hymn, until my dad explained later, “No, that was the Whiffenpoof song! We sang it in college at the bars!”

It has been a year and a half since my mom died. Memories from that time bring up such a mix of emotions. I found myself saying to my dad recently, “Everything went so well, considering how horrible it all was.”

Which was something my dad but maybe no one else would understand. Horrible makes sense. Alzheimer’s and cancer are horrible. But when I think back to how many people showed up just when we needed help, and how many things magically came together in ways I couldn’t have planned, and how much love and gratitude we were able to express. Well, it is an intense mix. A season full of ache and grace.

I want to share excerpts from our recent conversation here which include Dad’s perspective on familiar themes: grief of losing a spouse, the value of community, and some of the more confusing aspects of caring for a loved one with Alzheimer’s. I want to also take a moment to acknowledge and thank my dad and my sisters. This journey is theirs too, and they have been so very gracious in allowing me to write openly (all year!) about our family during such a tender time.

The question I get most often from my friends these days is, How is your dad?

And you don’t know what to say, do you? (laughter)

I tell them you are doing well. But I always feel like I should explain more because of course this has been a profound loss. I think you’re doing well because you talk about missing mom and you are playing tennis and you aren’t isolating.

I think in many cases people find it hard to continue to do things they used to do as a couple. I talk with both my tennis friends and also our joint friends, and for that matter, mom’s friends. I even went to the ladies Saturday breakfast. I knew they would want to talk about mom, and of course they asked how I was doing. I’m not uncomfortable in that kind of setting.

That was the breakfast that used to be a book group that you went to with mom?

Yes, when the Alzheimer’s was getting bad, the only way she would go was if I went along. So, her friends made an exception for me. I was the only guy there.

I’m so glad because now it seems like it helped keep your social fabric somewhat intact too. Also with the Brennan’s. You had Sunday breakfast with them before mom was sick and when mom was sick and still now. I think there’s a temptation to back away from social situations when someone is sick, probably for lots of reasons, and especially with an illness that affects cognitive abilities.

Well, even when mom couldn’t go out anymore, that Caring Bridge site made such a difference. People could feel involved without feeling like they were intruding. People felt more included.

And you didn’t have to catch everyone up on what happened when she died. I think it meant everyone felt closer to you and after mom was gone, that probably helped.

A strong community has definitely helped. You know when Dennis’s wife died a month or so later, I told him we were going to start having a widower’s BBQ once a month with tennis guys. Whoever wanted to come. Sometimes we had six guys and sometimes twenty. It was good for him, but it was good for me too.

It’s been harder to find ways to get together since the pandemic. But I can still play tennis, still have lunch outside. Zoom with my daughters.

What else has changed during this time of grief? And what has helped?

I am not as teary as I was. I certainly was emotional during mom’s transition. I’m not one of these never-cry guys. But the activity of caring for her, that part was really helpful. You don’t want to need to do it. But in those circumstances, participation felt like—at least I can do something. It’s not worth very much, but I have a purpose here.

You often say, “Jane wouldn’t want me to mope.” Did she say that?

Yes, that came from your mother. She actually used that word. And it was towards the end. It wasn’t like she used that word often. It was when she knew she was going to die—later on, she didn’t know—but there was this time she was aware. She said, “You know everyone dies, Ron. I don’t want you to mope.” It wasn’t like she repeated it. But that one morning she said it and I hung onto it because…

…it was one of the clear things she said when she was aware.

Yes. Very clear. Ok, I thought, I’m not going to mope. I hear you.

What does the grief feel like these days?

I still always feel like I should be checking with someone. Your mom and I, well, we weren’t dependent, but we were interdependent. We operated by consensus. Whenever I have decisions, I still turn around to ask her things. I feel I should be asking someone.

Last year when I was redoing the condo, I would wonder what she would think about the new rug under the table, about whether we should move the couch. I would still ask her. And then I’d laugh, because I always knew exactly what she would say. She’d say, “Well, it’s ok. It’s nice.”

Things were never important to your mom and so she didn’t have strong opinions about them. When we redid the Pine Street house years ago and had this professional decorator help us, Barbara would come over with sixteen different ideas for the bathroom. Mom would say, “Ok, that one.”

And Barbara would say, “Well, you could…”

And mom would say, “No, that’s good.” She was done. Barbara couldn’t believe she didn’t want to think it through more.

When was the hardest time?

At the end of her life during the last weeks here in Maui. It has got to be. Every day it was the question of whether it was going to be the last time I was going to have any form of communication with her. And her pain and there being only so much we could do about it. That was the toughest, but the rest was not easy either. It was hard to lose her. It was hard when we learned the cancer came back.

I have a question for you. Did you think she decided to come to Maui, or do you think we did?

Both, or a combination. At the end she agreed that it was a good idea. Before that, she was unsure. Because sometimes she thought I just wanted a free trip.

(laughter)

Really, she was so good at reading people. She knew we were trying to get her to do things like go into the ridiculous hyperbaric oxygen chamber. And because of the Alzheimer’s she didn’t understand the reasons. So, I don’t think it was that she didn’t want to go to Maui, I think it was that she couldn’t figure out why we wanted her to go to Maui.

Because she always liked to go to Maui.

Yes, so it seemed weird. Also, she was in tremendous pain. It was before hospice.

I actually think I know the moment mom made the decision. It was the night after we found out the cancer was back and there were no good treatment options left. Sandy and Amy and I brought over pizza. She knew we were all sad.

I was very sad.

And mom turned to you and said, “We are going to go to Maui and it’s going to be just fine, Ron.” I don’t know if she said that exactly, but I felt like that was the moment.

Yes, that was my sense, she ultimately agreed with us. It was good we got here when we did.

There were so many things like that, that seemed to just barely work out, just in the nick of time. Like the memory book. And different people getting here to see her. You had some really sweet moments together, rainbow sightings and your dance marathon.

(Laughter)

You know your mom never liked dancing quite that much before. She usually was a one dance kind of person. We danced for hours that day.

Do you still feel close to her?

Oh, yeah. Yeah.

I do too.

I don’t see any reason why I wont always feel close with her. After you count the time we dated, we were together more than 60 years. I’ll always be close with her.

Also Related

My dad mentioned a couple things that I have written about in previous Tending to Ending essays that I want to link to here.

In Bridges, I wrote more about our experience with CaringBridge, a nonprofit social media service designed to help people communicate with family and friends during medical journeys.

If you want to read about our memory book project, Love in the Room covers that project and other ways to bring people close at end-of-life even, when they are far away.

If you’re curious about what a hyperbaric oxygen chamber is, you can read more in Not Knowing, which is about the beginning days of my taking on a caregiving role.

Thank you for reading Tending to Endings. If you would like to make sure you don’t miss a post, please subscribe! I began Tending to Endings to help build community and conversation around end-of-life matters.

December 4, 2020December 4, 2020

Favorite Reads 2020

Tending to Endings (forty-eight)

Before starting Tending to Endings, I blogged primarily about what I was reading, and at the end of the year I’d share a list of favorites. I want to continue that tradition here. Though not all of these fit neatly into the category of end-of-life literature, many do, and others explore relevant themes like grief, mending family relationships, and spirituality.

A number of these titles were highlighted in Tendings this year, and so I’ve included links to the corresponding posts in case you missed them. I also tagged them by Tending to Ending theme and included links to excerpts or other interesting information.

Anything I read (or reread) this year is fair game, no matter when it was published. Also I’m offering these, not from the point of view of a critic, but rather, a lover of literature. Each is a book that if we were going for a walk together, I would want to tell you about to share the experience.

The first ten are books I’ve found myself recommending over and over. Afterwards, I list all of the other books read and enjoyed this year. They are all favorites that I am excited to share. Feel free to leave questions, and please do include your own favorites in the comments!

Three of these are in this year’s list. Oliver and Wiman were favorites in prior years.

Fun Home: A Family Tragicomic, by Alice Bechdel (2006)

I have not gotten into graphic novels much. I don’t know how to read them exactly, picture first, words first, all the words on a page and then all the pictures? But this book—which is actually a graphic memoir rather than a graphic novel—wooed me completely. It is funny, sad, poignant, witty, silly, deep. There are also a lot of literature major jokes throughout, which was an added joy for me. I fell in love with it and sent it to three friends before I finished. Bechdel’s father is a funeral director and nicknames their house fun home, short for funeral home. New York Times writer Sean Wilsey offers an excellent overview in “The Things They Buried.” (Talking about Death, Grief, Relationship Work)

Braiding Sweetgrass: Indigenous Wisdom, Scientific Knowledge, and the Teachings of Plants , Robin Wall Kimmerer (2015)

Kimmerer weaves her knowledge as a scientist with her cultural wisdom and memoir to create a book that gives me guidance for my daily living, and also hope for our communities and our planet. I listened to this one first on Audible and then bought the print version because I knew it was a book I wanted to return to. I keep running into others who are reading and loving this book, which adds to my hopefulness. I included a bit about this book in the June 26 post, Listening to Land. (Ancestors, Community, Story)

The Fire Next Time, James Baldwin (1963)

I read a lot of books about race this year, and admired, learned from, and appreciated many of them. But these two essays by Baldwin continue to be some of the most beautiful and instructive I’ve read. Fire Next Time is an example of writing that manages to be angry and compassionate at the very same time. Baldwin’s skill as a writer and his honesty as a human gives him a unique power to contextualize discussion of race in America while at the same time transcending the usual obstacles of those discussions. I included quotes from this book in the September 18 post, Slow Food (Talking about Death, Relationship Work, Community).

When the Light Was Subdued Our Songs Came Through: A Norton Anthology of Native Nations Poetry, Edited by Joy Harjo (2020)

One of the things I’ve learned this year is how limited my education has been. This is true even though I have a couple of college degrees and have been a teacher my entire adult life. There are so many voices, perspectives, and histories I’ve missed. As an example, I taught high school English at a time the same 2-3 Native voices were in every anthology. Often only excerpts of poems were included, as though there wasn’t much to choose from. This book puts that practice to shame. It is a gorgeous book full of Native Nations voices (160 plus poets from 100 indigenous nations) from the 1600s to the present including brief biographical and geographical information for each poet. I am so excited about this book, which I find far more enjoyable than the average Norton anthology. Joy Harjo, Poet Laureate for the US, writes a beautiful and compelling Introduction to the book. (Ancestors, Grief, Story, Community)

Dwellings: A Spiritual History of the Living World, Linda Hogan (2007)

I read three books by Linda Hogan this year and love all of them. This slim book of essays was my favorite probably because I am an essayist at heart and anyone who can do it this well gets my full attention. Like Hogan’s poetry and fiction, these essays are grounded in the natural world and weave together wisdom, story, musical language, and exquisite imagery. The theme of this collection spoke to me during a year when many of us are spending a great deal of time in our dwellings. Here is the title essay, Dwellings, as it appeared in the Indiana Review. I also included a bit about this book in the September 18 post, Slow Food. (Talking about Death, Grief, Story)

The Five Invitations: Discovering What Death Can Teach Us About Living Fully, Frank Ostaseski (2017)

Dying (and living) involves a great deal we cannot control. Ostaseski’s book offers a window into how and why to proceed with an open heart anyway. He was one of the founders of Zen Hospice Center in the 1980s. He combines wisdom with experience with eloquence in such a way that this is one of my favorite books on the topic. I wrote about this book in the March 20 post, Welcome. (Talking about Death, Caregiving, Community)

Eternal Echoes: Celtic Reflections on Our Yearning to Belong , John O’Donohue (2000)

I read this book of reflections a little at a time during my morning meditations, and I always looked forward to it. I wasn’t sure whether to include it at first because I my favorite of O’Donohue’s is still Anam Cara. But then I realized I’ve written down more quotes from this book than any other this year. It helped me through. Here is one:

Prayer is not about the private project of making yourself holy and turning yourself into a shiny temple that blinds everyone else. Prayer has a deeper priority, which is in the old language, the sanctification of the world of which you are a privileged inhabitant. By being here, you are already a custodian of sacred places and spaces. If you could but see what your prayer could do you would always want to be in the presence that awakens.

I included more quotes from this book in the September 18 post, Slow Food. (Spirituality)

A Paradise Built in Hell: The Extraordinary Communities that Arise in Disaster, Rebecca Solnit (2009)

I think every year, Rebecca Solnit has made my list at least once. I love her philosophical perspective, her lyrical writing, and her activism. I had purchased her memoir this year thinking I’d read it, but then, with the pandemic and the social justice protests and the fallout from our political divide, this older book moved to my nightstand instead.

In A Paradise Built in Hell, Solnit studies five major disasters and the communities that arose in the aftermath. It gives interesting context to historical figures I’ve only known in broad strokes, like William James and Dorothy Day. Solnit argues that while the press and leaders often tell a story of chaos and unrest, life on the ground after these events tells a much more complex story. In the wake of disasters, she argues, “We remain ourselves for the most part, but freed to act on, most often, not the worst but the best within. The ruts and routines of ordinary life hide more beauty than brutality.”

Like all of Solnit’s work, this philosophy isn’t presented only to help us feel better. In giving many examples of how people have responded to disaster in the past, she makes a case that in crisis, there is opportunity to change our culture for the better if we seize it and come together to act towards the common good. (Caregiving, Community, Storytelling.)

The Murmur of Bees, Sofìa Segovia, translated by Simon Bruni (2015)

I read many excellent novels this year, and this is the only fiction on my top ten list, which is not usual for me. I think I leaned towards nonfiction for the top list this year because it has been a time of truth telling on so many levels. But the long list of novels below reminds me how much fiction adds to life as well. I don’t think anything objective made this one rise above the first few titles in the fiction list below, but rather, timing. All are compelling stories beautifully told. But, I read this book in March during the first weeks of quarantine, and Murmur of Bees is a family saga told with a quality of magical realism set in against the backdrop of the 1917 flu epidemic. I didn’t know this last fact until I was at a quarter of the way into the novel, but the synchronicity and historical perspective on that plight made the experience of reading feel intimate and a bit magical in itself.

Caste: The Origins of Our Discontent, Isabelle Wilkerson (2020)

Wilkerson’s Warmth of Other Suns: The Epic Story of America’s Great Migration has been a favorite nonfiction book since it was published in 2010. It expanded my view of American history with extensively researched beautiful storytelling. This book, too, is about the history of racial hierarchy in America and is told with thoroughness and precision.

The tone and the tenor of this book is different from Warmth. Wilkerson is direct and unflinching in her account, and I couldn’t help but think of how painful it must have been to research and archive these stories for us day after day. My sense was always that Wilkerson was doing so, to save us all from ourselves. I am so grateful for her commitment to this generous and important work. It is a book that has motivated me to not look away and to look for how I can take action with love.

A friend sent this quote from the epilogue of Caste, and it has become a sort of guidepost and reminder for me, that this is longterm work, and this is my work:

Caste is a disease, and none of us is immune. It is as if alcoholism is encoded into the country’s DNA, and can never be declared fully cured. It is like cancer that goes into remission only to return when the immune system of the body politic is weakened…Radical empathy, on the other hand, means putting in the work to educate oneself and to listen with a humble heart to understand another’s experience from their perspective, not as we would imagine we would feel…Each time a person reaches across caste and makes a connection, it helps to break the back of caste. Multiplied by millions in a given day, it becomes the flap of a butterfly wing that shifts the air and builds to a hurricane across the ocean.

This summer, the New York Times Magazine published a feature, America’s Enduring Caste System, by Isabel Wilkerson. (Relationship Work, Grief, Ancestors, Talking about Death).

Other Books I Loved

I probably don’t need to explain why this year’s list is longer than usual. The first few under each heading were contenders for the top list, and then they fall in random order.

Fiction

The Water Dancer, Ta-Nehisi Coates (2019)

The Vanishing Half, Brit Bennett (2020)

The People of the Whale, Linda Hogan (2008)

The Widower‘s Tale, Julia Glass (2011)

Lost Children Archive, Valeria Luiselli. (2019)

The Dutch House, Ann Patchett (2019)

How Much of These Hills is Gold, C. Pam Zhang (2020)

The Book of Longing, Sue Monk Kidd (2020)

Three Junes, Julia Glass (2003)

A Spool of Blue Thread, Ann Tyler (2015)

Girl, Woman, Other, Bernadine Evaristo (2019)

Pale Horse, Pale Rider, Kathrine Ann Porter (1939)

Crooked Hallalujah, Kelli Ford (2020)

Father of the Rain, Lily King (2011)

Anne of Green Gables, Lucy Maud Montgomery (1908) — This was my anti-anxiety medicine during our eternal election week.

The Relentless Moon, Mary Robinette Kowel (2020)–the third in the Lady Astronaut Series.

The Moon Bamboo, Thich Nhat Hanh (1989)

The Robber Bride, Margaret Atwood (2011)

American Gods, Tenth Anniversary Edition Full Cast, Audible Production, Neil Gaiman (2011)

The Time of Butterflies, Julia Alverez (2007)

What We Keep, Elizabeth Berg (2015)

Poetry

Dark, Sweet, Linda Hogan (2014)

An American Sunrise, Joy Harjo (2019)

The Tradition, Jericho Brown (2019)

Owls and Other Fantasies, Mary Oliver (2006)

Memory of Elephants, Sherman Alexie (2020) — letterpress chapbook through Limb erlost Press , Idaho

Citizen: An American Lyric, Claudia Rankine (2014)

Memoir and Biography

Two illustrated biographies for children: Enormous Smallness: A Story of E.E. Cummings, Matthew Burgess (2015) and Drawing on Walls: A Story of Keith Haring, Matthew Burgess (2020).

A Little Bit of Wisdom: Conversations with a Nez Perce Elder, Horace Axtell and Margo Aragon (1997)

The Night of the Gun: A Reporter Investigates the Darkest Story of His Life, David Carr (2009)

The Yellow House, Sarah M. Broom (2020)

Walking on Water: Reflections on Faith and Art, Madeline L’Engle (1980)

Other Nonfiction

The New Jim Crow: Mass Incarceration in the Age of Colorblindness, Michelle Alexander (2010)

When Things Fall Apart: Heart Advice for Difficult Times, Pema Chodron (1997)

Jesus and the Disinherited, Howard Thurman (1949)

How to Be an Antiracist, Ibram X. Kendi (2019)

Stamped from the Beginning: The Definitive History of Racist Ideas in America, Ibram X. Kendi (2016)

White Fragility: Why It’s So Hard for White People to Talk about Racism, Robin DiAngelo (2018)

Dying Well: Peace and Possibilities at the End of Life, Ira Byock (1997)

Trick Mirror: Reflections on Self-Delusion, Jia Tolentino (2019)

I would love to read your own favorite reads of 2020 in the comments! (If you don’t see a comment box below, click here and scroll to the bottom of the post).

I will be posting twice more this year to get to a nice round 50 posts. Then, starting in January, Tending to Endings will run once a month on the first Friday. If you don’t want to miss an installment, please subscribe and I will send a copy to your email address. Tending to Endings is cost free and ad-free, and I do not share your info. Thank you!