Relationship Work – Page 2

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!

October 30, 2020October 30, 2020

Devotion

Tending to Endings (forty-three)

This week I’m including a short passage from the book I’ve been working on these past two years. It explores many of the themes I’ve written about it Tending to Endings, but from a perspective closer to the experience, before I knew all that would happen with my mom.

Readers occasionally ask for more about living with Alzheimer’s, and so I chose this excerpt from November 2018, a few weeks after I went to stay with my parents (near Chicago) and a few weeks before we learned the cancer had returned. Mom was also receiving daily treatments in the hyperbaric oxygen chamber for pain associated with radiation wounds from her previous cancer treatment.

Excerpted from “Chamber,” Band of Brightness

My dad has written “Laura’s Birthday” on the whiteboard we keep on the kitchen counter to help my mom know what is happening each day. He has drawn balloons and a smiley face along with the two other agenda items: Oxygen Therapy and Sandy and Bill bring dinner.

“It’s Laura’s birthday,” mom says when she stands over the counter staring at the whiteboard. By her tone, I know she is taking in this information.

“Happy Birthday,” she says because she still knows what to say. In one of the books I read about Alzheimer’s, I learned that social skills are often strong even after memory and other communication skills fail because they are habit. My mom has always been very good with social skills. She is from the Midwest. Also, she knows a smile can connect people and it is important to her to make people feel welcome and liked. She has practiced a lifetime at smiling at children and homeless people and new mothers and the old woman on the bus. She still does this now that she is that old woman.

Even with her broad smile, I can see questions in her gray-blue eyes. How old? Are we doing anything special today? Did I get you a present? Are you my child? I can feel my mother’s anxiety because I am her daughter and, also, I am practiced at fear. I wonder how to reassure her.

We are careful to not ask her questions because then she feels put on the spot. But it is hard to know how to bridge the gulf between us. She is so very aware of condescension. It feels wrong to assume she doesn’t know things and just ramble on all the answers for questions she hasn’t asked. Also, she can only process so much information at once, so giving her a long stream of facts can overwhelm her.

I say, “Thank you for giving birth to me, Mom. Thank you for taking such good care of me while I was a baby and ever since, for fifty-four years now!”

“Wow, fifty-four,” she says. “How did that happen?”

It is my birthday and I am here in the town where I grew up with my mother and my father who brought me into this world, a place I left at age 19 in 1984. Amy, my youngest sister, takes me out to lunch. My sister Sandy, two years younger, brings Szechwan shrimp for dinner. Friends from Boise send texts and cards in the mail. My dad assures my mom that they gave me my birthday check. I preorder Michelle Obama’s as a present to myself. Becoming.

This birthday more than anything else, I think about the vulnerability of being born. We don’t choose it. We just become. And at first, we are not able to do a damn thing to take care of ourselves. I remember watching my sons just after they were born and thinking— they cannot pull the blanket up if they are cold because even their arms are not yet under their control. Their need was so great it made me ache for them and love them more than my own heart.

There was a swath of time in my early adulthood that I took issue with my mom for not being as nurturing as I would’ve liked or in the ways I preferred. I was an emotional daughter and we had different ways of coping with emotion.

But today all I can think of is how much she loved me and how dependent I was on that love. It’s not the work of mothering or the pain of childbirth that awes me, it is the devotion. During that time when I could not live without care, my mother made sure I got from one hour to the next, first in her womb and then here on earth. Of course that is enough. That is everything.

Before dinner, I brave the early winter and cross the parking lot for the 4:30 hot yoga class. I stand on my mat in the heated room with other yogis and feel this body —this fifty-four-year-old body—that still moves that still breathes that still works pretty well. Yes, there is a pain in my sacroiliac joint that makes backbends difficult. But I am here, connected to earth, breathing.

At some point, the only logical response to birthdays is gratitude. I have lost friends my own age. My own mother is leaving or shedding her own self or some other process I do not understand, a little every day. The opposite of becoming.

I am here. I can do sun salutations and humble warrior and, on a good day, standing bow. I can relax into pigeon pose and feel those hips that have birthed twins open and stretch. I can breathe through savasana and sense my connection to the other yogis in the room and my sisters and my children and the tree outside the studio and the trail outside my writing room all the way in Idaho. I can sense my connection to my mom, the woman who carried this body into this world.

Thank you for reading Tending to Endings. Next week I will be posting something about legacies. If you would like to subscribe so you don’t miss these weekly posts, please leave your name and email below.

October 16, 2020October 16, 2020

Giving Care

Tending to Endings (forty-one)

On Monday, John had bilateral knee replacement surgery. It’s COVID times and so this means I pulled up to the circular drive of the small hospital and hugged him at the curb like I was dropping him off at the airport. Only this time, rather than luggage, he walked through the sliding glass doors carrying a collapsible walker and an Iceman cooler pack.

Then I drove home and watched the phone.

It was an hour before the nurse called me to let me know he had gone into surgery. “We know you can’t come see him, so you can expect a call from the surgeon in about two and a half hours, maybe a bit longer since it’s both knees.”

Sitting in hospital waiting rooms has never been my thing, and yet now that my husband was in surgery, I felt something important was being kept from me. It’s what we do when we can’t do anything to help a person suspended between life and death—we wait as close by as possible to hear news.

My wording may sound dramatic, I realize. They weren’t doing a heart transplant, after all, only replacing his knees. Still, certain experiences remind me of our vulnerability more than others and surgery is one of them. I admit to feeling a similar sensation each time I am on a plane, and my sons have received many texts over the years: The plane is about to take off! I love you very much!

This is not John’s first knee surgery. That happened nineteen years ago, during the first months of our relationship when John skied into the trees looking like the expert powder hound that he is and emerged, much later than expected on one ski, the other leg dangling limply behind.

“I forgot I wasn’t 18,” he said, with a look of despair. He had taken a jump and landed on the side of his ski and busted an ACL.

When John’s surgery was scheduled about a month later, he asked whether I would help him during recovery. We weren’t living together at this time, and this would mean him staying at my house for a few days.

Sometimes people send me nice notes about this blog and tell me how empathetic I am. Sometimes, I start to believe it. And then I remember that my first reaction to anyone needing anything from me is so often self-centered. This seems particularly true of nursing opportunities. On occasion, for instance, I would attempt to talk my kids out of being sick when they were young. Once—as my sons are fond of reminding me—this resulted in Gabe throwing up on the bus on the way to school and me having to come get him in the nurse’s office.

When John asked if I would help him post surgery, I said, “Sure!” It seemed the right thing to say.

But what I felt was very reluctant. I wasn’t even sure we were at the pick-each-other-up from the airport stage in our relationship. The weekends when my kids were at their dads was supposed to time to catch up with my own life and work and to have some semblance of social life. I liked John, but my priorities were my kids and healing myself, not a serious relationship.

My counselor pointed out that helping someone post-surgery did not actually mean we were at any particular point in our relationship. It could just mean I was helping out a friend. That seemed slightly more realistic than my perspective which considered helpfulness as a sort of gateway drug that could result in my ending up accidentally married again.

And so, after John’s surgery, the boys stayed at their dad’s for couple days, and John stayed at my house. I don’t remember having to do all that much nursing. Mostly I remember having a relaxing weekend and making it through couple seasons of the Sopranos that someone loaned us in box set.

Top: Our wedding guests included our parents, our kids, and my friend, Jen, who married us. Bottom: For our honeymoon we floated the Colorado for 18 days with a world class string quartet (but no showers) through the Grand Canyon.

All this comes back to me in a rush of memories as I try to do simple chores while I waiting for the surgeon to call. Much has changed. John and I are married, something we did very much on purpose about four years after that first knee surgery. He has helped raise my kids and I’ve gotten to share in the joy when two of his daughters each brought a beautiful, new human into the world.

There has been a little sickness, but so far, mostly health. And ’til death is a more of a comfort to me these days than it used to be when it brought on a sensation akin to vertigo. Admittedly this may be in part because our life expectancy suggests only two to three decades to go. But also, I know I have a pretty sweet deal.

And I’ve learned some things the long, hard way. Caregiving, it turns out, is not one-sided. The times I’ve been needed the most—with my sons at the beginning of their life and with my mom at the end of hers—have been the most profound experiences of my life.

The prayer wheel at the Sawtooth Botanical Garden where we married contained 10,000 prayers of Tibetan monks and the blessing of the Dalai Lama. We and our guests went around three times to release blessings: once for our closest loves, once for our community, and once for all beings on earth.

Of course we need each other. We need family members or friends to nurse us back to health and a midwife to welcome the baby and the pilot to fly us over the ocean to be with our dying parent. During COVID times we need staff at hospitals to say reassuring things to our loved ones as they go into surgery.

And we need the surgeon to call. Which he finally does after a little more than three hours, by which time I have stopped doing my half-hearted chores and am instead putting all my energy into staring at the phone and trying to remember to breathe.

“It went really well,” the doctor says, “And, wow those knees were worn out. Some of the worst I’ve ever seen!” I know this will please John, both because it confirms his rugged lifestyle, and because it means we didn’t waste time, pain, and money on unnecessary surgery.

I text his daughters and my sons and all the other people in our life who made me promise to let them know how surgery went. And then I go into the kitchen and my own knees buckle a bit, and I weep. This surprises me. Of course it is relief, I’m feeling, and also a recognition of all those blessings circling in the breeze. Of so much love.

Reader Question

I’m planning and upcoming post on resources for those who are primary caregivers for family members. If you have resources to share that have helped you through the day-to-day experience of being a caregiver, please email them to Laura@Laurastavoe.com. These can be books, podcasts, films, groups, websites, or even stories of your own experiences. I’m also interested to know whether COVID protocols have changed caregiving for you and how are you getting through. And as always, I’m interested to hear thoughts, questions or suggestions about Tending to Endings either by email or in the comments below.

If you would like to receive Tending to Endings each Friday, please leave your email here. Thank you for your interest!

October 9, 2020August 16, 2021

Words and Wishes

Tending to Ending (forty)

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

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

Asking for Help

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

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

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

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

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

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

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

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

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

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

Allowing for Natural Death

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

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

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

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

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

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

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

Yes, No, Maybe

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

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

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

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

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

She wrote on the whiteboard, “Yes.”

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

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

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

Keep Talking

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

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

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

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

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

Understanding Surrogacy

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

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

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

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

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

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

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

More Resources

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

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

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

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

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

September 11, 2020September 11, 2020

Fear Itself

Tending to Endings (thirty-six)

On the morning of September 11, 2001 after I saw television coverage of a plane hitting the second tower of the World Trade Center and realized something horrible and big and very scary was happening in our country, I drove to work early. Normally I worked from home in the morning and taught middle and high school English in the afternoons at Riverstone International School in Boise. But on this morning, I got in the car and drove in early because my sons were in Ms. Rose’s first grade class at Riverstone. The first thing my fear wanted on the morning buildings were hit by planes was to be in the same building as my sons.

Fear has long been my nemesis. My parents would tell a story about how one summer while we were on vacation, they wanted me to overcome my fear of jumping into the swimming pool. They would count, one, two, three—and I would bend my knees in preparation for launch. But something stopped me each and every time. I think I was afraid of breaking my heels or anklebones on the bottom of the pool or water going up my nose and drowning or some invisible monster lurking in the deep end. I had an active imagination.

My parents promised me I would be fine. Then they promised me ice cream sundaes with two scoops, then three. Pretty soon —just to see how far this would go—mom promised a new bicycle, and eventually a Barbie Playhouse, which she was totally against. We weren’t allowed to have toys that were advertised on TV. Other families eventually joined in on cheering me on. Even with added peer pressure, I remained firmly on the concrete, my toes gripping the pool ledge.

On the drive home from Wisconsin, no one else in my family seemed overly concerned by my failure—it was a funny Laura story, as they told it—but what I remember feeling was despair.

It wasn’t only jumping into pools that scared me as a kid. I was afraid of dogs, being tickled, roller coasters, berries that might be poisonous, spent fireworks, being alone in our unfinished basement, and the way bubble bath suds would expand exponentially under the thump of the faucet. Bubbles may seem harmless to the average person, but after my bath I lay in bed imagining foam filling up the whole bathroom and moving down the hall towards the room where I slept.

I did eventually jump in a pool and even became a competitive swimmer and a lifeguard. According to my mom this happened because I finally took lessons from Mr. Finny who was a bald man with a gruff, raspy voice and a huge belly. He would bark instructions from the pool deck. Mom said, I was more afraid of Gil Finny than the water. It was a success of sorts, but I couldn’t count on Mr. Finny to be standing on deck every time I needed to do something scary.

I could write a book on all my methods of trying to manage fear. Much of my early life I tried the closed-eyes-and-try-not-to-think-about-it variety of getting through. Or I would vacillate between complete avoidance and immersion therapy, throwing myself into new situations before I had time to be afraid. Results varied.

I’ve never found FDR’s famous quote about nothing to fear but fear itself all that helpful. If I am afraid of the pool, or the new job, or the course of climate change, or the pandemic, and I fail at talking my way out of that fear, it means I actually do have something to fear. Maybe not the thing, but my fear. Which is kind of scary, right? It’s the bubbles expanding exponentially all over again.

Gabe and Dylan on the Main Salmon. Laura, Dylan, and Gabe on the Lower Owyhee. (circa 2002)

On September 11, 2001, I was afraid, but what made me get in that car and drive to school was a desire to make sure I was near my kids in case they needed me. This may not have been logical or noble. There wasn’t anything I really could do at school, and it wasn’t like I was running into a burning building. I just sat in the teacher prep room and talked with other teachers about what was happening and how we were going to help our students and our children and ourselves cope with the tragedy still unfolding.

But when I think back to the that day, the difference between that and many other frightening times in my life was that I was not thinking of myself.

I can take no credit for this impulse of course. It came with the kids, this freedom from self-centered fear. But the example has been more useful to me than advice from Nike ad campaigns or my own attempts at fear management.

I realize not everyone needs to become a parent to discover the power of love, but motherhood gave me a crash course in getting over myself. It was like a freebie view into what life can be like when I’m not buckling under the weight of self-centeredness. And it came without any effort on my part, like grace. Of course raising kids took work. But I never once had to talk myself into loving them.

Dylan on the Middle Fork of the Salmon River, September 2020. (photo credit Ali Smith)

People talk about whether disaster bring out the best or the worst in people. And the answer for me is both, sometimes both in the same day or hour. Love doesn’t always come as easily as it did on a river of maternal hormones. Sometimes I think of how I can be helpful. Other times I sob or get snippy with the Verizon representative or have an anxiety attack or spend an afternoon in bed. Sometimes I have to remember to turn my attention to love and then to practice doing so again.

When I taught high school I learned that I could only teach well by loving my students. Other strategies failed because I was terrified to be up there in front of that class. There were so many variables to any given lesson plan, so much could go wrong interacting with 160 teenagers each day. If I was thinking about me and whether I was doing a good job, I’d never make it.

But if I was thinking about them, about who they were and what they needed and how I might help, well, then the fear lifted. I didn’t have to tell them I loved them, which would’ve been awkward and maybe unprofessional. What mattered was showing up with their wellbeing at the center. It meant listening to who they were and helping them find their way. The result was that teaching was a lot more rewarding and time consuming and fun. We formed a community.

Some call it service work, but it feels more reciprocal to me than that. I think of what I turned to on that day nineteen years ago. I wrote poems with my students and reached out to my one friend in New York and listened to those who were worried about loved ones they hadn’t yet heard from. I held my sons as much as they would let me and then played with them in the backyard before dinner.

When I asked others what they had done on the day of the attacks: they reached out to loved ones, gardened, played with the dog, went for a walk, baked bread. Acts of love.

It is another September full of loss. We do not know the extent or what will be left or what we will create anew. We are mid story in the pandemic, in the fire season, in the election, in the climate emergency, in the injustice still unreckoned. Fear is a seductive force and there are plenty of invitations to stoke it.

Or, I can show up for Love.

More Resources

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

The study of disasters makes it clear that there are plural and contingent natures–but the prevalent human nature in disaster is resilient, resourceful, generous, empathic, and brave.–from the book’s prelude, Falling Together.

John Lewis: Good Trouble. A documentary film about the legendary civil rights leader who died in July, and definitely a story about love in action.

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