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.

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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.

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