Laura Stavoe – Page 14

February 14, 2020June 14, 2020

About Living

Tending to Endings (Seven)

The first time I contacted hospice was a little over one year ago. Before I made the call, I called friend Betsy from the shower stall in the back bedroom of the condo where my parents lived in Hawaii. It was the furthest point away from my parents’ bedroom, and there were two sets of doors closed between us. Betsy is a nurse who has worked in palliative care, and I wanted to ask her about hospice.

I can’t give a good explanation for my fear and secrecy. Hospice was the logical next step for my mom: Her cancer was inoperable and other treatments hadn’t worked. Mom had a clear advanced directive she created long before she had Alzheimer’s symptoms. My father and sisters and I all knew from that directive and from knowing my mom for many years that she would not want us to prolong her life under these conditions. Mom was living with two terminal diseases.

But there I was huddled in a shower stall whispering to my friend in Idaho and feeling very, very guilty. Bringing in hospice felt like a betrayal. I felt, maybe not that I was causing my mom’s death, but like I was rushing it or agreeing with it or saying that it was ok with me.

This, even though I have been pro-hospice ever since I heard of it, which I believe was back in the 1970s when my mom became enamored by the teachings of Elisabeth Kubler-Ross and shared them with everyone who would listen including her children.

I believe quality of life matters. I believe in choices. I know that research shows hospice does not shorten lifespan. But when faced with my mother’s actual decline and actual pain within her actual living breathing self—the choice to make the call felt, well, wrong. Because the loss of my mother felt wrong.

“Oh Laura,” Betsy said, “Hospice will help all of you.”

“Mom can still sometimes walk to breakfast,” I told her, thinking this was evidence that my mom wasn’t sick enough for hospice.

“That’s excellent. Your hospice nurse will help her to enjoy that more. Some people receive care for years. Most people wait too long and they don’t get the full benefit of hospice which is really about quality of life.”

I remembered the slogan on the Islands Hospice brochure: It’s about Living. I think I actually rolled my eyes at that one. All we could think of these days was illness and death. It seemed a stretch.

Betsy also assured me the staff would tell me if it was too early, in which case there were likely palliative care options available.

I talked with my dad and sisters after that call, and then I made another to Islands Hospice on Maui.

What receiving hospice care meant for my mom was that for the next four months her pain was managed at a level that allowed her to walk to breakfast and play Scrabble and dance in the living room with my father. It meant she never spent another hour of her life in a doctor’s waiting room.

Noelle, our nurse, would visit twice a week and talk with mom out on the lanai of the condo while she checked her blood pressure. Mom quickly befriended Noelle, telling jokes and asking her about her own children.

My dad and I learned the skills necessary to help take care of my mom between Noelle’s visits, and we had a number to call if we had a question or if we needed a nurse to visit at any hour of the day or night.

I don’t want to paint a picture that suggests all of this was easy for any of us and especially for my mom. There were still many moments of uncertainty and worry. There were times when we couldn’t help my mom nearly is as much as we wanted to. There was still unimaginable loss ahead. But the move to hospice care meant less chaos and more guidance and support for our family. For my mom, it meant less pain and more human connection. More regular life.

Betsy was right. Hospice helped all of us. And yes, the pamphlet slogan was right too.

This week I made another call to hospice. This time to enroll in training to be a volunteer. As I’ve begun to explore end-of-life issues, it feels important to be with more people who have firsthand experience. Death and dying can seem abstract when we talk or write or think about them. But they are not abstract. Any more than labor and childbirth are abstract. I don’t want to forget how hard it is, or how full of life.

I look forward to sharing more of what I learn through hospice training and volunteer work. You can also find excellent information at the National Hospice and Care Organization including answers to frequently asked questions, research findings, and a historical timeline for hospice in the United States.

And if you have other topics related to end-of-life that you would like to suggest, please email laura@laurastavoe.com or leave comments below. (If you don’t see a comment box, click here: laurastavoe.com).

I will be traveling next week, and so I will be posting a collection resources I am excited to share on February 21. I will return with a regular column on February 28.

I truly appreciate everyone who reads Tending to Endings and all who have subscribed (72 of us now!). If you would like to receive the post each Friday, please leave your name and email below. My hope is to help create community and conversation around end-of-life matters so that we are better able to support one another.

Have a beautiful week,

Laura

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February 7, 2020June 14, 2020

I Hear You

Everyone likes to hear a good listener–Ron Stavoe

Tending to Endings (six)

One summer afternoon, my dad returned home to get ready for his summer job at the Pepsi-cola company. He was between his junior and senior year in high school. His sister Jeannine met him at the door and told him their mom died. The news caught him completely off guard.

My dad knew his mom was sick. She had been going to doctors since he was in the eighth grade. But no one had told him the illness was cancer, and always, always she was going to get better.

“I was a teenager and should’ve been smart enough to figure it out,” dad says, “My mom kept losing weight. She was sleeping in a cot in the living room because she was too weak to make it up the stairs”

I would describe my relationship with my dad as very close. And yet, it is December 2019 when my dad tells me about that day in 1956 that changed his life. I knew the fact of his mom’s death before that, but not the story. From the way my father reaches for details—”I came home from school…no, it was summer…I must’ve been out with friends.”—I don’t think he has told it often.

The degree of silence in my dad’s home was in part due to an era. But, even today there are not many places where it feels natural to launch into a conversation about someone who is about to die or someone who has. Counseling sessions and Death Cafes are two. Most celebrations of life, some funerals.

I was with a group of friends a few weeks after my mom died. I had just returned to Boise. It was a potluck for some occasion, a sunny spring afternoon. It felt good to be home and among friends after five months away. But I also felt that strange distance that trauma and loss can carve. I had been through something that was hard to explain even to myself. On any given day, I felt many things: grief, gratitude, relief, hurt, rawness, love, peace, exhaustion, numb.

My friend Kathy came up to me holding her cup of ginger tea, her blue eyes smiling and said, “Would you have time to meet for coffee sometime soon? I would love to hear more about your mom.”

What I felt then was a wave of relief. Pretty much all I could think about was my mom and all we’d been through over the past five months. I had been meting out small pieces of story to friends and anyone who would listen in order to not overwhelm any one person.

Often our reticence about death is good intentioned. We don’t tell because we don’t want to burden others with loss that feels heavy and disorganized and raw. We don’t ask because we don’t want to overstep or to awaken pain. I didn’t ask my father about his mother because I knew it would make him sad.

But how much else do we leave unsaid when we sidestep the whole story. As I’ve begun to make room for more of these stories in my own life–both the telling and the listening–I’m realizing quite a lot. Stories of death are, after all, actually stories about life. It’s the only part of death we actually know anything about.

Now, Kathy’s question seems perfect to me. Do you have time for coffee? I would love to hear the story. It did not feel intrusive, it felt like an invitation. We met the next week and I sat in my sunny living room and told her about my mom. It was a gift to be able to walk through that time again with someone listening.

In January I attended something called a Story Circle that was held downtown Boise in the Linen building and hosted by Idaho Coalition Against Sexual and Domestic Violence. The topic of the circle was about heritage and we shared stories about the origin of our names and stories of our people.

One of the biggest gifts of the evening was feeling connected to people in my community who I had never met, and this happened for me, not so much through telling my story as through listening. Regardless of our ethnic or geographic background, as each person shared, I found those soft familiar places, those points of connection.

Last Christmas I finally asked my dad to tell me the story of my grandmother. And he did get teary, though mostly when explaining to me things about his mom that made him proud. She was active in local politics and president of the PTA and the leader of a kitchen band. “She was never angry, but she was always involved,” he says. “As soon as my dad came home, she would hand off responsibility of all of us to him and head out to some gathering or public meeting.”

“She influenced people,”he adds, “She would get my dad involved with things, saying, Art, why don’t you go talk to the kids at school about what you do at Crane Company. And he would.”

And I realize now that in this way, grandma was a lot like my mom. And dad and I talk about that rare quality some people have of being able to draw people to them, not with promises or persuasion or anything other than their own way of being in the world.

My mom would collect quotes she loved whenever she read–Henry David Thoreau and Marian Wright Edelman and Anna Quindlen and Wendell Berry. But one of her favorite quotes of all time was something my father said back when I was still in grade school, Everyone likes to hear a good listener.

And this seems ironic now, and like it has taken me a very long time to hear my father. When he finishes telling me about my grandmother I ask him to tell me about his father and I listen and I listen and I listen.

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January 31, 2020June 14, 2020

Waking Slow

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

Tending to Endings (five)

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

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

I have started the form many times.

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

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

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

Two decades later, I finally have an advanced directive.

I contemplate why this has taken so long.

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

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

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

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

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

This helps me move forward.

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

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

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

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

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

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

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

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

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

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

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

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

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January 24, 2020June 14, 2020

Love in the Room

Tending to Endings (four)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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January 17, 2020June 14, 2020

Books by Mortals

Tending to Endings (three)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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