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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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 28, 2020August 28, 2020

Listening, Learning

Tending to Endings (thirty-four)

In 2015, my friend Roya called to ask if I’d speak at our friend Pat’s Celebration of Life. Roya is a minister and was officiating the service, and Pat had been a close friend and spiritual mentor of mine for fifteen years. Pat was 82, but her death came only one week after a diagnosis of pancreatic cancer. She was beloved in a wide circle of friends and our community was reeling from the unexpected loss of her. I felt both the honor and the weight of being asked to share at her service.

I told Roya, of course I would speak, and then I did what I do: I opened a file on my computer and began typing. I wrote pages and then took a bunch out and moved paragraphs around until I had a beginning, a middle, and an end. I added more sensory detail. I edited each sentence. I read it aloud and fiddled with wording and then read it aloud again. It made me tear up which seemed a good sign. Then I sent it to Roya to see what she thought.

Roya was kind. She said something like, “This is beautiful essay about Pat that you might publish somewhere, but I’m not sure it is what people will need from you at the service.” She added, “It might good to bring a few notes up with you but to speak more from the heart. Friends and family will be hurting, and they will want to connect.”

I wasn’t thinking of that. I was thinking of how I was going to get through this talk and how I could possibly make it good enough to honor Pat. Fine goals, but I was missing one that Roya saw because she had been through this many times before.

I’ve been thinking of things I’ve learned from people who have dedicated their professional lives to end-of-life care. So often when I listen to their experiences, I hear about an angle missing from my own view. Often it is a perspective that both humbles and helps me.

Since beginning this blog, I’ve found opportunities to talk with people who spend many hours with those at the end-of-life and their families. In this week’s post I’m sharing a few insights they’ve shared with me that have helped broaden my perspective.

On Helping Families

Humans are made with a capacity to tolerate grief. And, in fact, until we know that space where love was, that is now empty, we cannot know it will one day be a source of something powerful and important in our life. So, I think when I approach dying people, and their families, it is from a place of nonverbal confidence that they can do this, that in fact there is the possibility at end-of-life of something beautiful to find in the experience. –Norm, Hospice Chaplain

Here is something I learned a long time ago. There are many things worse than death, the actual death is not the hard part. The fear, the pain, and suffering can be very hard. My 28-year-old niece has a recurrent cancer. It is not an immediate death notice, more likely a notice of a serious marathon of difficult surgery and chemo. My sister is grieving. For my part, right now, I am a sister rather than a cancer nurse, trying to be a listener, not a know-it-all. It seems that my encouragement of my sister as a strong advocate for her daughter brings Pam the most comfort. We want to know that what we do matters and that comes in the middle of so much helplessness. The intangible actions such as listening, reassuring and acknowledging feel so helpful. — Jane, former Oncology Nurse

Families are all so different. I try not to go into the experience with any assumptions about what each person may or may not be feeling. I’m there to help support them with caregiving and coping with the end-of-life, and to help them tap into their own strengths and get through it together.–Kathe, Hospice Social Worker

On Care in the Time of Covid

Although we haven’t been able to do volunteer visits due to COVID, we look for other ways to help. When the pandemic started, a number of volunteers immediately went to work on a mask project. Some volunteers have been able to do visits over the phone or FaceTime. And our staff has been reaching out to our colleagues who work within the longterm care facilities, sending them cards and pastries and letting them know we are thinking of them. Their jobs are so hard right now. We try to support them in any way we can. –Desiree, Hospice Volunteer Coordinator

One of the things that has been happening lately is that families who never expected to care for loved ones at home are now doing so because of COVID. So some of our hospice work has been helping families succeed in doing this care. And for the same reason, we now also have end-of-life patients who are isolated in hospitals and facilities due to COVID precautions. So we are discovering new ways to help them connect to their loved ones—like window phone calls and FaceTime and tele-health and more in nursing home care. –Norm, Hospice Chaplain

On Listening to the Dying

My friend Dia, who worked in the hospice field for years, has been such a gift to me as I’ve navigated this topic. Last winter, during a walk along the Boise River, she shared some of her experiences and I still hear her voice whenever I start thinking of what my own role might be.

Laura, when I started hospice work, I truly thought I was gonna be God’s little gift to the dying. I’d go in and strew all my caring and pearls of wisdom over them and then they’d have a good death. Boy, did I have it backwards! I just laugh at myself now because they were the ones who had all of the wisdom. They were the ones facing death, and they were my teachers. I still look at that hospice work as being the place where I learned more and gained more than anything else I’ve done.

Which brings me right back to humility. Sometimes for me this means listening to those who are already gone.

After my conversation with Roya, I went for a walk on the trails feeling lost and not at all up to speaking the next day. It wasn’t perfectionism that had me this time. I wanted to be honest when I spoke, and the truth was I felt sad and confused and a little angry at Pat for dying so fast. I was mad at myself, too, for not calling her more often in the months before, when I knew she wasn’t feeling well. I was utterly sad I didn’t get to see her one more time. These selfish feelings seemed unworthy of Pat’s Celebration speaker.

Somewhere during my hike, I brought my frustration directly to Pat, which felt childish, but I didn’t care. “You are the person I would talk to when I had a problem like this, Pat! If there is something you think I should say, will you please help? Because I am not feeling up to any of it.”

It was a relief just to say it aloud and I stood on the ridge and took a deep breath before heading home. Then I turned around and was completely surprised by a rainbow that arched from one golden hill to the next. It was February in Boise (not Rainbow Beach in Kaanapali), and the colors stretched across the whole sky.

“Well, okay, then,” I said to Pat. “Thank you.”

And I had at least one thing I could say to my beloved, grieving community, all of us aching and confused by the empty space where Pat was: We can be here for each other. And guess what, we can still talk to Pat, too. She told me so.

Tending to Endings is a weekly column that comes out each Friday. If you would like to subscribe, please leave your email below. You can also reach me at laura@laurastavoe.com.

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.

Thank you so much for reading Tending to Endings. One downside of my social media break is that I am not posting Tending to Endings on my Twitter Feed or Facebook site, which is one way new subscribers would find me. If you are on social media and feel a particular post was helpful and may be of interest to your friends, please feel free to share it on your page or to send a link to those who might appreciate it.

If you would like to receive Tending to Endings each week, please subscribe by leaving your name and email below.

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.

August 14, 2020August 14, 2020

We’re Here

Tending to Endings (thirty-two)

Are you taking care of yourself?

This is a question friends, acquaintances and even strangers would ask me after learning I was a caregiver for my mom. Everyone was aware of statistics about how stressful caregiving is on the health of the caregiver. This is especially true of spouses of Alzheimer’s patients for which the trajectory of decline is often long with care needs increasing with time. For years, I had been asking my dad the same question.

When I left my job to live with my parents to help with my mom’s care after her cancer returned, I no longer knew how to answer the question honestly and succinctly. Do you mean have I eaten or showered in the last few days? Well, yes, probably. Do you mean am I physically, mentally, emotionally, and spiritually in balance? Of course not, and it would take too much energy to explain why that is not possible. During those days, a trip to the grocery store was self-care. It offered a change of scenery and time for a short phone call to a friend outside of the walls of the condo.

I have numerous friends who are primary caregivers for a spouse or parent, and I have been worried about them during these COVID times. They are caring for people who are already in fragile health and so they are more isolated than usual. They don’t have anyone coming in to give them a break. They are not able to go to yoga or play tennis; they can’t have company over for visits. Groceries have to be delivered! There is no break.

Ana and Patty were always only a phone call away when I was caring for my mom.

Early in March, my friend Debbie received word from her dad that her stepmom had cancer that would require six weeks of radiation therapy in Colorado. By the time Debbie arrived to help, Colorado was already on lockdown. The medical situation was dire and my interactions with Debbie were only through occasional texts. She sent pictures showing the snowstorm that almost kept them from radiation therapy.

I was worried about my friend and longed to talk with her, but she had little time for phone and her step mom could not be left alone. COVID protocols meant others couldn’t be called in to help.

Debbie texted me,

As soon as I get a chance, I’m going to cry. But it will have to be after a split feeding, a doctor appointment and the last feeding after which I need to keep my stepmom upright for thirty minutes while she is miserable because all wants to do is go to bed.

Oh how I understood that place. I sent my friend hearts and let her know I loved her.

Debbie has been home since mid-May and her stepmom is recovering well. The crisis has passed. When I asked Debbie about caregiving during COVID, she answered by comparing it to another time she was a primary caregiver at the end of her Mom’s life.

I’m not sure this will be helpful but what I felt this time was that the whole world had similar feelings as I was having, albeit for different reasons. This time, I didn’t feel so alone. When taking care of my mom, I felt isolated because others lived as though nothing had changed. For me, everything had changed.

It reminds me that I never know the particulars of a caregiving experience except for my own. I have a tendency to fill in the details with the worst possible scenarios. Debbie’s experience was full of difficulties and graces, too, much like my time with my mom.

Friends from work made a poem book for me to carry with me when I went to care for my mom. I treasure it still.

I’m not a fan of articles that tell you what to say in difficult situations as though we can short-cut our way to empathy. Whether Are you taking care of yourself comes across as a loving question or a pat cliché has to do with context and tone and whether I’ve had enough sleep.

But what is true for me is that I would rather my friends ask pat questions than back away out of worry about saying the wrong thing. Whether they say the right or wrong thing is not going to change the gravity of the situation. But their presence in my life, even from the sidelines, can make all the difference in how supported I feel.

At times I have been that friend who has backed away. I told myself I was giving my friend privacy (without asking if that was what she wanted). Usually that distance was born of fear. As a result, I have missed opportunities to learn, to grow, to be a friend.

Sometimes being a friend to someone in dire circumstances is difficult not because there is so much to do, but because there is not much that can be done. I couldn’t give Debbie what I thought she needed most, which was a break and some rest. I often felt like I was bugging her when I would ask things like have you been able to go for a walk? And I felt like the words I had to offer were far too small to match her situation.

It doesn’t always feel helpful to stay in touch with someone during critical times. But looking back at Debbie’s and my long thread of texts which sometimes were despairing and sometimes philosophical and sometimes funny—texts that sometimes involved her telling me, no, she really could not fit in a walk that day—I am very grateful we stayed in touch.

There are definite advantages to having young mom friends who can send photos like this one of Josie! Photo Credit: Jenna Petrykowski.

During the last months of my mom’s life, when my father and I were living in the caregiving bubble that sometimes felt like chaos and other times like a cocoon, I had no energy for friendships. And yet, I needed my friends more than ever.

And now thinking back to that time, I see my friends as being central to how I got through. They sent cards and texts and voice mails. They responded to the sunset photo I sent them with hearts. They answered when I called on my walk and let me spill my sadness and exhaustion into the short time we had to talk together. They sent me poems and really good pears; they took online Scrabble turns late into the night; they sent photos of their babies they knew would make me smile.

What I needed from my friends during that time was not privacy so much as grace. I had very little to give. Still, my friends stayed. They were thousands of miles away, and yet I remember them as being with me in that cocoon of a condo during that sacred time. It made all the difference that they kept reaching out, each saying, one way or another, we are here.

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