Missing Jane

Tending to Ending (forty-nine)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What does the grief feel like these days?

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

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

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

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

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

When was the hardest time?

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

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

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

(laughter)

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

Because she always liked to go to Maui.

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

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

I was very sad.

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

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

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

(Laughter)

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

Do you still feel close to her?

Oh, yeah. Yeah.

I do too.

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

Also Related

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

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

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

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

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

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!

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.

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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.