Leaning In

IMG_1330I wrote this after a visit to Massachusetts to see my mom when we were told she might have as little as two days to two weeks left to live. She’s still with us in this world. Despite advanced stages of bladder cancer, she’s not having pain yet, for which I’m grateful. I want to share my thoughts about the visit because I don’t think we talk about the transition from life to death enough, and that creates more fear around it than necessary. My mom has a great hospice team supporting her, and warm, dedicated staff caring for her at the nursing home. It’s still hard—and heaps of sad—to prepare to say goodbye. But as during the year my dad’s cancer spread to his lungs, I’ve found that knowing I don’t have much time left with my mom makes me more mindful of simple moments, and things as ordinary as the joy in her voice when she says hello to me when I call become transcendentally beautiful.

10/26/15

One of the most powerful moments this week was watching my mom’s face light up as she ate a purple Popsicle after kidney surgery. She sank into the delight of that cool moisture as only a very thirsty person can. And as only someone with childlike dementia can, she discovered the wonder of a grape Popsicle as if for the first time. It was beautiful. My wife and I smiled. My mom smiled. The nurse smiled. “Delicious!” my mom commented. I’ll remember that moment forever.

Each day Heather and I were in Boston, we made sure to take photos of me and my mom. We took a bit of video on our phones, at the suggestion of a caseworker who had lost her parents within a year of each other. It didn’t matter what her story was, just that she reached out to share, and that she understood my pain, and I understood hers. Ultimately it’s those small acts of compassion that make being human a lot easier. None of us get around losing family members. None of us get out of having to spend some time in stark medical environments. But the bittersweet moments at the beginnings and endings of things can be the most powerful.

On the flight out to Boston a flight attendant asked where we were heading. There must have been something in my face when I told her we were going to visit my mom in the hospital, because her expression and warmth communicated that she understood more than I’d told her. She came back to find me at the end of the flight. I don’t remember exactly what she said, but she offered words of compassion and support, and it meant so much. Never hesitate to reach out to someone. Connect as someone who has basic knowledge and experience of human suffering, and who would like to lighten it in others. The person you reach out to will never forget your smile, or the warmth in your voice.

Losing someone comes with a huge dose of mindfulness, if you’re able to see through the, “I don’t want to experience grief again! I know what it feels like and the next six months will hold some really stormy emotions and it sucks and I’m pissed off and I want to keep it away!” and LEAN IN. Resist the urge to pull away. Distancing yourself won’t take away the sting of loss. But if you lean in, in the quiet of each moment, in the somber stillness of the middle of the night, you’ll absorb a sense of peace that will be with you always.

I have memories, tucked away and cherished, from my last year with my dad. The day he sat quietly at the side of the trail in the Smoky Mountains in his orange rain poncho, waiting for us to complete the hike to the waterfall that he couldn’t make with us. The last time I spoke with him, on Father’s Day a week before he died, when I described with delight the tiny, mermaid-like hummingbird in my garden, and he told me he was going to call me “Heather Sparkling Eyes” because of the joy in my voice. And then he told me he was going to fix a window at an apartment he owned, and we said I love you and goodbye. A week later I lost him, but I’ll always have that moment of joy we shared.

I found out my mom had acute kidney failure a week after she’d been in the hospital with congestive heart failure, which was also when I found out she had dementia. Despite all her health crises in the past year—a broken foot, pneumonia, COPD—this time felt different. The prospect of losing her felt more real. More serious. More imminent.

As I sat awake meditating at 2:00 a.m., with the rest of the world sleeping, I let go of a host of difficult memories once and for all. When the phone rang, I felt peaceful as I spoke with a compassionate doctor. I absorbed with sadness that my mom might have very little time left. I worked through the first of a series of difficult decisions I’d need to make as my mom’s health care proxy. And out of the quietness, I knew nothing was more important than to be in Boston with my mom. The next day I planned that trip.

My mom’s face when she saw me was indescribable. Such joy. Such incredible joy. I was so grateful that she knew me, that the kidney tubes they’d implanted to keep her body running had drained off enough of the toxins for her to surface, to talk, to laugh! Her dementia hadn’t progressed too far for her to know us, but had progressed far enough that she was unafraid, without worry or understanding of the disease processes wracking her body. Sometimes when her eyelids fluttered closed, shaded blue, and her heart fluttered visibly under her ribs, and then she opened her eyes with a far away look, as if she was already half somewhere else, I wondered if she sensed something was different from other hospital stays. But there was no fear. No dread. She knew she was safe and cared for.

Heather and I kept leaning in. The hardest part for me was signing the DNR paperwork with its intricate questions—Resuscitation? Dialysis? Feeding tube? IV fluids?—first at the nursing home and then again at the hospital. I remained dry-eyed the first time I filled out the forms. But when we found out my mom had bladder cancer the next day, and the hospital had me fill them out there in more detail, I felt grief wrap around me like my mom’s love, like the soft blue afghan I’d spread over her legs to cover up the hospital linens. By the time I headed back to my mom’s room though, I managed a smile for her.

The EMTs let me and Heather ride back to the nursing home with them later that day when my mom was transferred by ambulance. We made an adventure of getting outside on a stunningly beautiful fall day. We had a pizza party in her room that evening. She laughed with us, and was feeling feisty, attempting at one point to climb out of bed despite her inability to stand. Rather than scolding her, the nurse jokingly reminded her there’d be a mess to clean up if she fell and yanked out those kidney tubes. I’m glad she’s surrounded by good humor.

I don’t know how long my mom has left on this earth. I know part of my heart is still with her in Massachusetts. I know my wife and our four girls are with me for this part of my journey, and that with their love I’ll weather the grief when it comes. I’ll never forget so many beautiful moments with my mom during my visit. In difficult times, if we’re present, if we open our eyes and point out the sparrows in a tree outside a nursing home window to a sweet old woman, in the face of loss we can carve out sacred memories.