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!

September 25, 2020November 12, 2020

No Time at All

Tending to Endings (thirty-eight)

It is true our lives

will betray us in the end

but life knows where it is going.

—Linda Hogan, Parting

My first reaction upon hearing from my sister on Friday night that Ruth Bader Ginsburg had died was noooooooo. It was resistance to the tumult and chaos that was about to ensue, still six weeks before the election. So many of us wanted her to hold on. She so wanted to hold on. My first reaction was self-centered fear.

But I have walked close to death recently and so it didn’t take but a minute to pull myself back, to pause and remember what this is. To whisper to the night: Thank you. Safe Passage. Much love. You were brilliant. Go in peace knowing what you gave us was more than enough. For, don’t we all deserve to be sent off on a wave of love? I want to be that love.

And then, what I knew next–RBG is still with us. We haven’t lost what matters most, so long as we pay attention.

I recently listened to a friend’s story of caring for her mother. Cat’s mother died only a few weeks ago and I got to sit on the bank of the Snake River in Hagerman and listen to her story of the long, hard illness and the quiet moments during caregiving, and the magic that happened between them in the days leading up to her mom’s death.

Cat said, “People keep asking if I’m alright, and my heart is actually OK. Grief is quickly followed by comfort and my relationship with my mom has grown even stronger. When I find that very quiet space inside of myself that’s where I can find her.”

And I knew what she meant. I do grieve the loss of being able to call my mom and talk through the election or the last book or whether the plant that surprised me in my yard is a flower or a weed. I miss being able to sit with her or travel with her or play a game of Scrabble.

But, also, I feel as close to my mom as I ever have. She is with me. So is my friend Susan and my mentor Pat and my grandma Jean. When I go to that quiet place within me, these soul friends welcome me. I rely on them.

It always feels tricky to write about things of the spirit that happen in such interior spaces. I worry it will sound like I’m trying to talk people into a particular belief, which is not my aim. So I’ll just say that my experience of death has changed as I’ve spent more time with those who are dying and especially since the death of my mom. One of the things I carry with me is that my relationship with my mom or my friend Pat or my friend Susan or my grandmother are transformed, but not ended.

I don’t fully understand any this. Sometimes I wish I came from a culture where interaction with the souls of those who have departed is accepted in everyday life—where they show up in dreams and stories and across the dinner table—because I don’t always have the language to talk about these experiences.

But I know it is true that my mom helps me every day.

So why not RBG as well? True, I didn’t know her personally. But her work transformed our culture and the way many of us see ourselves and the world. She is with us.

Like many of us, I am troubled by the fact that we seem to be living out the plot to a dystopian novel lately. We are told we are polarized. And maybe we are. Or maybe the loudest voices are and we are living in a culture that has incentivized and thus magnified the extremes: those willing to take up arms, those seeking to confound rather than to understand. Or maybe sometimes the person we identify as the fringe is someone acting on impulse having a particularly bad day.

None of this is to say that we aren’t standing–collectively and individually–on a precipice or that things couldn’t tumble in a variety of directions. My own sense, though, is that the choice before us is ultimately not between left and right. And it is not about finding some happy middle. Instead, I suspect the radical choice that matters is whether we are going to dig deep and find the courage to choose love? Or are we going to let fear have the day?

Last week I included a link to a podcast of an interview between Krista Tippett and angel Kyoda williams, a Zen priest, activist, and author of Being Black: Zen and the Art of Living with Fearlessness and Grace. During the interview, williams describes this kind of love that relies on internal work and action in a way that I found helpful:

It is developing our own capacity for spaciousness within ourselves to allow others to be as they are — that that is love. And that doesn’t mean that we don’t have hopes or wishes that things are changed or shifted, but that to come from a place of love is to be in acceptance of what is, even in the face of moving it towards something that is more whole, more just, more spacious for all of us. Its bigness. Its allowance. Its flexibility. It’s saying the thing that we talked about earlier, of “Oh, those police officers are trapped inside of a system, as well. They are subject to an enormous amount of suffering, as well.”
I think that those things are missed when we shortcut talking about King, or we shortcut talking about Gandhi. We leave out the aspects of their underlying motivation for moving things, and we make it about policies and advocacy, when really it is about expanding our capacity for love, as a species

Later in the interview, williams identifies the kind of action that comes from that place of love:

I think that if we can move our work, whatever work we’re up to, whatever kind of desire that we have for our own development in life, to be willing to face discomfort and receive it as opportunity for growth and expansion and a commentary about what is now more available to us, rather than what it is that is limiting us and taking something away from us, that we will — in no time at all, we will be a society that enhances the lives of all our species.

And that is the phrase that makes my heart catch: no time at all. Tippett comments on it, too, the hope inherent in that statement, and williams confirms it is exactly what she means.

…we are evolving at such a pace — even what we’re experiencing now in our society, we’re just cycling through it. We’re digesting the material of the misalignment. We’re digesting the material of how intolerable it is to be so intolerant. We’re digesting the material of 400, 500 years of historical context that we have decided to leave behind our heads, and we are choosing to turn over our shoulders and say: I must face this, because it is intolerable to live in any other way than a way that allows me to be in contact with my full, loving, human self.

My mom, too, believed in this kind of love and the power of it to transform. She might express it differently, at least to me, her daughter. For, when I bring my fretting about the election and about the supreme court seat to the quietest place in myself, Mom responds with her half smile and a glint in her eye, Oh, Laura, so you think the fate of equality and our nation rests on one 87 year old woman staying on the bench?

And she is not trying to diminish RBG’s work or the importance of this election or what follows. She is reminding me that strategy and politics will not be enough to save us. For that we need a Love that includes all of us.

A Question for Readers

Thank you for reading Tending to Endings. In a future issue I am planning to write about ways to begin conversations with parents about end-of-life planning. Have you had conversations with your parents that have gone well or not so well? What did you learn? Or, have your kids brought the discussion to you? How did it go?

If you are willing to share your experience or thoughts or questions on this topic, please send an email (or a voice memo file if that is easier) to Laura@laurastavoe.com.

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

September 4, 2020September 4, 2020

Saying More

Tending to Ending (thirty-five)

Two weeks ago, when I wrote about CaringBridge, I typed out the name of the cancer my mom had and then I pulled it out again before sending out Tending to Endings. I questioned this decision–this is a blog about talking about things after all–but I hesitated because it seemed unnecessary for the point of the post, and it’s a cancer that is not easy to drop easily into a sentence without feeling the need to say more.

Ultimately, I decided that I would instead write another post about how certain diseases carry stigma that make them difficult to talk about, which of course can ultimately lead to more isolation during a time when community support could help the person and the family.

It makes sense that I would hesitate before putting medical information about my mom on the internet. There is a spectrum between public and private and posting on the web falls to one extreme. But stigma goes beyond that—it makes us hesitate even among close friends and family. It makes us question whether we are betraying a person by mentioning their struggle.

Alzheimer’s of course is one such disease. Many people feel they need to hide the symptoms. For my mom this tendency started in earnest only after she had lost some of her capacity to make decisions. In the beginning of her disease which was first called a mild cognitive impairment, she would be very direct. When someone asked a question she couldn’t answer, she would often say, “I’m having a problem with my memory. Can you remind me…”

Years before she was diagnosed, she was aware of memory changes, which she attributed (and may well have been at that time) due to normal aging. Still, words she shared with friends and family in a book of collected poems, seem prescient now.

It was later, in the last couple years of her life, that Mom treated her cognitive changes more secretly and I do not know whether this was fear of judgement or a symptom of her disease or something else.

I have been quite open about my mom’s Alzheimer’s on this blog. I believe she would agree that one way to relieve the stigma for others is to be willing to talk about it. Also, my mom and I shared a belief in storytelling as a way of finding strength. We may not be able to control outcome of all of the events in our lives, but in telling the story, we can choose our perspective, and this can be empowering and freeing.

Ron and Jane during my mom’s last visit to Idaho. August 2018.

The other disease my mom had was cancer of the vulva. You can say breast cancer these days or ovarian cancer or prostate cancer because of all of the people who have talked about these cancers in the past. But cancer of the vulva is still a bit much. It tends to stop any further conversation. Genitalia are not typically mentioned in conversation in our culture and when they are it is often as objects of desire or shame. Just mentioning my mom’s cancer feels utterly personal.

I often felt angry that my mom had to have this particular combination of illnesses. My mom was all about making meaning out of life and Alzheimer’s had robbed her of the ability to shape her own story. Then this second disease gave her intense, chronic pain in an area that is already sensitive. Because of the Alzheimer’s, she often did not know why she was hurting. Due to the shame that so often accompanies vaginal pain for women in our culture, I worried my mom would be afraid to acknowledge when she was hurting, or worse, feel somehow responsible for it.

I no doubt was projecting some of my own imagined responses onto my mom’s story. And in fact, my closeness with my mom during the last months of her life gave me a window into the ways my assumptions were wrong. Or maybe not wrong exactly, but one-dimensional like a flat character in a bad novel. I’m not saying there is anything good about Alzheimer’s or vulvar cancer, only that life with it can still contain good—and in fact contain a multitude of experiences. That is not something my fear presupposed.

My mom’s life was changed drastically by these diseases, and in ways that included pain, exhaustion, and at times, trauma. But her life also included curiosity and joy and contentment. During her five months on hospice care, there were many moments where she enjoyed eating pineapple or teasing my dad or telling us stories about my grandparents that I’d never heard before. She would grin upon spotting an egret or catching the eye of a toddler. She sit on the lanai and joke that it was so nice of the sky and the ocean to turn her favorite shade of blue.

And even later, when my mom’s memory and verbal skills had faded, she continued to shape her own story in ways that were both subtle and fierce. Watching that unfold was one of the most profound, reassuring experiences of my life. While my writing skills are not up to communicating the experience fully, a poem I wrote on CaringBridge the day before her death, reflects some of her strength.

Given the choice, I would not pick Alzheimer’s or cancer of the vulva for a way to go. But it is interesting to me that I have come out of that experience feeling less afraid of death and disease, not more. This is even true of Alzheimer’s which has long been a fear of mine.

I don’t know how to get past the stigma of vulvar cancer or any disease other than by first being willing to name it. For me the aim is not desensitization but rather the beginning of integration. By welcoming the unsayable into the lexicon of what it means to be human, I can begin to open. I see the disease has boundaries; I see the person again. Openness makes it possible for me to overcome fear and be in relationship with my community, with reality, with possibility. With Jane Stavoe in whatever way she shows up that day. Ultimately, it is a very satisfying way to live.

Whale watching on March 16, 2019. (Cheering neighbors and voice of Jane Stavoe).

More Resources

On the topic of saying more, recently I was introduced to a podcast Death, Sex, and Money, hosted by Anna Sale. The show has aired since 2014 and is quite popular, so many of you may already know about it. I’m not sure how I missed it for this long!

It is billed as a show “about things we think about a lot, and need to talk about more.” Even in episodes with a different theme, death tends to make its way into the conversation. Which is how I think it actually should work in a more perfect world: that discussion of dying weaves its way into many conversations because it is such a common and profound human experience, rather than being relegated to Death Cafés or blogs that focus on focused on end-of-life.

One recent episodes that may be of interest is A Widow’s Guide to Grieving. As I listened, I was reminded of how many different ways there are to experience grief, and how refreshing to hear a variety of perspectives. I’m including the link to this particular page because it also includes a playlist on the topic of grief, which is one of the themes I get the most response from on this blog.

Thank you for reading! If you would like to subscribe, please leave your name and email below.

August 21, 2020August 21, 2020

Bridges

Tending to Endings (thirty-three)

I am in the midst of a hiatus from social media accounts, and I have been thinking about forms of technology. The ways we use them to both connect and to distance ourselves. Technology has been the hero during quarantine times in so many ways. Telehealth counseling sessions and FaceTime from hospital rooms and yoga classes on Instagram. Like many, I have been bemoaning the ways technologies are imperfect, while also being incredibly grateful that I can have Zoom coffee with my dad on a Tuesday morning.

My break from social media is not because I don’t see benefits. And I am reminded of how, when my mom was on hospice care, we eventually decided to communicate with friends and family over an online social media platform designed for keeping people informed about a medical journey.

There are of course other ways to accomplish this communication–email lists, phone trees, private Facebook groups, posting to your own website. We chose CaringBridge because I had seen it work well for friends. CaringBridge is a nonprofit organization that offers the service for free. It does not place ads on user pages or share or sell user information. (It does solicit donations). The information posted can also be kept more private than some social media sites, depending on the settings selected.

I could share photos like these on CaringBridge and friends knew that even though my mom was at the end of her life and there was much to grieve, it wasn’t all bad.

By the time we began posting updates, my mom had been on hospice care for three months. When I wonder now at how long we waited to inform people more broadly that my mom was dying, I think it had to do with our own jagged journey towards acceptance.

Also, I wrestled with the ethics of sharing my mom’s experience when, because of the Alzheimer’s, she did not have the capacity to make that decision herself. Sometimes Mom understood she had cancer and other times she forgot. She often knew her mind was not right, but she usually wanted to hide that fact. Most of the time, she did not understand she was dying, and if I brought it up, she would look at me like I was the one not right in my mind. Like many important decisions, my mom no longer had the context or the capacity to give approval.

It might seem right then, to err on the side of privacy. But there is a cost for that, too. My parents were married fifty-six years and lived in the same township for the entirety of that time. My mom wasn’t only a joiner in the community, she was a leader. As soon as she learned something new, she wanted to create a group in her living room to talk about it.

My parents had bridge club friends and church friends and antiracism group friends and teacher friends and former students who grew up to become friends. She had friends she met at peace marches and parenting groups and while walking to the train station. When my parents began spending half the year in Maui, they nurtured a community there too.

These people weren’t mere acquaintances. They were people my mom loved. Many did not know she was at the end of her life. That suddenly felt very wrong. Yet, it would’ve taken hundreds of phone calls to catch everyone up.

I asked my dad and my sisters whether they were ok with me keeping a journal on CaringBridge, not for medical updates, so much as for bringing friends and family closer to all of us during the last days of her life. They were supportive of the idea, and I am forever grateful they continue to give their blessing when I write about our family. It has helped me process a very profound time.

We did talk about what my mom would want if she was able to make that decision. We knew Mom would not have wanted people to feel bad or worry about her. My mom liked that she was a very strong person and she wanted others to know that she understood how fortunate she was. On the other hand, she would’ve wanted others to take comfort in knowing that she was surrounded by love. She would’ve wanted her family to feel the support of our community. She would have been just fine with all the times I reminded friends of her commitment to peace and to making the world a better place through acts of love.

We decided to move forward and I’m so glad we did. We were able to work as a family to decide the level of openness and landed on being fairly general about the medical journey and more specific about the emotional one. We felt it was important to name some of the heartbreaks as well as the love for the sake of honesty and because others in our circle of friends were trying to cope with illnesses, too. Particularly those that carry stigma like Alzheimer’s, can be isolating when everyone is silent.

I never have had qualms about that decision since. The clearest confirmation of came afterwards, when my dad flew home to Chicago wheeling the walker my mom no longer needed through airports, carrying the box of ashes up to the agents at each security checkpoint. Because on the other side of that lonely journey, he had hundreds of friends to welcome him home.

No doubt people would’ve showed up for my dad even without CaringBridge, but the fact that friends and family carried some of the story and understood some of what he had just endured, mattered. And I think it helped others, too. The most common thing people said to me at my mom’s Celebration of Life is how much they appreciated being kept in the loop through our online journal. And in the months to follow, my dad had more dinner invitations than he possibly could attend each week. I believe that made my mom very happy.

Below are few excerpts from our CaringBridge journal, which makes for a very long post this week! But I wanted to include examples. And, next Friday, August 28, is the 81st anniversary of Jane Stavoe’s birth. As my dad reminded me, it seems an appropriate time to honor some of her last days here on earth.

Welcome to our CaringBridge webpage. We know many friends and family of Jane Stavoe are thinking of her and our whole family as Mom enters this last stage of life. Thank you so much. We feel your love and support. Jane is living with both cancer and Alzheimer’s, and both have advanced considerably in these past few months. She and my dad are here in Maui, which is their second home and, according to Mom, paradise. All three of her daughters have had time here this winter, and Sandy and I are here now. Amy will be back to visit in early April. My mom is receiving excellent care at home here through Island Hospice and of course also, every day, from the love of her life, Ron Stavoe.
I will attempt to write brief updates often for those who would like to stay in touch. Mostly these will probably be about small everyday things rather than health updates, since right now our focus is being together, keeping mom as comfortable as possible, and noticing beauty and grace. The two things Mom says most often these days, is “Ron, aren’t we lucky?” And, “We are soooooo blessed.” It is remarkable considering all she is facing each day. But it is because she has practiced gratitude, and because she has people like you in her life that, that is what she has to say.

Evening of March 27

Journal Entry by Laura Stavoe

Mom spent the day out on the lanai, first listening to a book with Sandy, then soft music. She slept most of the day and did not want much food or water. It is becoming more difficult for her to speak.
Still, she smiles often. She grins at our jokes. She always says “I love you” back (if she’s awake). She said at least twice today, “we are sooo lucky.”
There have been times over the last week or so that mom has become agitated and anxious, both because of the Alzheimer’s and because she is facing a very hard transition. But talking softly to her and reassuring her of the love that surrounds her, relaxes her. Love really is powerful. We remind her often of the many people who are sending love her way.

Last month on an anxious day of my own, I wrote a short little meditation. I read it to my mom the other afternoon and I felt her breathing and her whole body relax and she smiled. It may be that she has always been my biggest cheerleader for my writing. Or it may have been the words helped. In any case, thought I’d share it here.

Today I breathe. I won’t always breathe. Today my lungs fill, my limbs move, my eyes see. I do not know what is next, but it is not this. And this is a gift worth showing up for. Today I get to be here with you, with us.

My Dad posted occasionally as a co-author. (He is more fluent in emoji than anyone else in our family):

Amy’s Arrival

Journal Entry by Laura Stavoe — April 2, 2019

Journal Entry by Ron Stavoe — April 3, 2019

Gifts

Journal Entry by Laura Stavoe — April 6, 2019

From the lanai where I sit this morning, I can see on my left, through the glass sliding door, the rise and fall of my mom’s chest, and to my right, the waves rolling onto shore, one after another. I feel that when mom’s breath ceases, these waves will still be breathing for her.
People have said such nice things about my sisters and I being here. And I have to admit I never in my life have thought of myself as nurse material. I used to joke with my kids that they could be sick up to two days in a row and after that, I was done.
But oh, what a gift. If you have this opportunity, take it. Yes, it’s almost unbearable at times, the heartache that comes with watching someone you love lose memory and mobility and words. And the pain when there is no way to alleviate it. That does feel almost too much.
But it also means staying connected. It means learning about our own strength and capacity for love, both giving and receiving. And even about our own weaknesses. It means being granted so many moments and a thousand gifts that I don’t yet have words for.

April 9, 2019

Journal Entry by Laura Stavoe

Mahalo and Celebrating Jane

Journal Entry by Laura Stavoe — April 10, 2019

I have much I want to say to this beautiful community of friends who have helped us to walk through this time and I know I will not be able to say it all in the manner that you deserve. I want to first thank you for responding with such tenderness and kindness to these posts. We know that my mom valued community and honesty and connection, and you have helped make one of the most difficult times in our lives, a time and a place to honor her as well as helping us to feel a sense of community and love.
Yesterday Dad and Amy and I walked to the Hula Grill and ate crab wantons (mom’s favorite appetizer) and listened to a local play James Taylor and John Denver songs. We saw rainbows in every direction. Those of you from Maui know that rainbows are not rare on what is sometimes referred to as Rainbow Beach. Still, there seemed to be even more than usual, and in deeper colors, bows that stretched across the whole sky.
All of this to say, we are ok. And we are taking care of ourselves and each other. And we are thinking of mom with every step and every breath and that feels mostly good, though sometimes we also ache from loss and those losses we know are yet to come. We will be in touch shortly with more information about Jane’s Celebration of Life which will be held on April 22, Earth Day, at the Metropolis Ballroom in Arlington Heights, Illinois.

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Next week I will be sharing lessons I’ve learned from hospice workers and others who have dedicated their professional lives to end-of-life care.

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.

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