This is the transcript of a presentation I gave at the UCSF Memory and Aging Center Grand Rounds, December 10, 2021. Larger font denotes quoted material from published articles; an essay in JAMA (associated podcast) and another in Health Affairs (associated podcast).

“During the 5 months between my son’s 2nd birthday and my 37th, my father and stepfather died.

The day after my son’s birthday, my father died alone in the hospital, 10 hours after we gave permission to withdraw life support. Five days earlier, he and 3 friends had been hit by a driver while they were cycling. At 68, he had ridden more than 17 000 miles during the prior year, thinner than as a 3-season collegiate athlete. When my brother called, saying “Dad’s alive but…,” we could Google the accident on the other side of the country and guess which shattered bike was his. I imagine he somersaulted off the roof of the car like a pitchpoling sailboat. Instead of dunking and righting and laughing as he taught us on Lewis Bay, his neck and arteries dislocate resulting in catastrophic head injury.

We sat by his hospital bed, played his eclectic music favorites, held his swollen hands, averted our eyes from the leg wounds, hoped he could hear us, hoped he couldn’t. The family members that could, gathered. We were braced for a swift departure, but as warned, the duration was hard to predict. Later, alone, I curled up on his chest, one last time, and listened to his heart, off-kilter. After a few hours, the trauma team reclaimed the bed and sent him to the oncology unit. We were sent home to tend to our grief and wait; he died while we slept.

Five months later, the day before my birthday, my stepfather Larry died at home with my mother and stepbrother at his side. Eight months earlier—before my father’s accident—all 3 children flew home during a hospitalization followed by a hospice admission related to Larry’s 9-year journey with a rare neurodegenerative disorder. We returned to our own homes; weeks of waking to an emoji thumbs-up: Larry was still breathing. Despite 30 lb of weight loss in 6 months, Larry flunked hospice, kicked out just before 180 days of hospice care. The next 6 weeks stolen, spent instead reestablishing care and trading out home equipment. Then the plateau ended, the equilibrium punctured, Larry experienced a sudden downturn from a presumed infection. I flew back across the country to help. Using a handmade communication board, Larry agreed to forgo tests and antibiotics. Fearing that dying at home without hospice would mean police and similar intrusions, we reluctantly reenrolled with hospice. A few weeks later, I was the one saying goodbye on the phone, my final messages read during his conscious moments. When the broken heart emoji came, it came with reassurances of peace.

Losing parents is so terribly ordinary. Yet much like becoming a parent, these acute losses come with learning a new way of being, a new language: The world split into before and after.”

Memoir & Grief

This is the opening section of an essay I started the night my stepfather died, which was ultimately published in JAMA this past August, nearly 3 years later. People have asked me if it was hard to write, or cathartic. It was neither. It felt like a search to find the precise words to describe the experience of having a boulder catapulted through the fabric of my being. Stories have beginning and middles and ends, yet I often I feel like I’m looking at a pile of middles and shredded mismatched edges. My father was a high school English teacher and he taught me that essays are attempts. So this is essay was one of the attempts I keep making to make sense of the experiences, to tack down loose edges or weave in the fraying pieces.

Another analogy I’ve been drawing is to parenthood. The sudden death of my father and parenthood were both events that transformed me, unwillingly, into someone slightly different, This despite the fact I had been to many funerals of family members growing up. These memoir/essays are helping me make sense of why this event was so transformative, and to being to rediscover who I am on the other side of it. What I’ve been learning from my own writing, and from learning more about grief, is that grief can be compounded by other losses and delayed by caregiving responsibilities and work stress. And though it took me a long time to figure out what I wanted to say in this essay, I ultimately decided I wanted to normalize the experience of grieving in academia, with all its complexity, and call for better systems and supports. As I wrote in my essay:

“These losses were substantial and yet the losses kept coming. My uncle died 5 months after my stepfather, then my high school friend, my next-door neighbor, my cousin, my aunt. My closest collaborator left for another institution; our team of 9 dissolved to new opportunities. My son’s daycare moved; my office moved. After losing my father, each subsequent death, each change, each grief was different and multiplicative.

Academia rewards those who can make hardship invisible, who can be productive amid and despite crisis. Colleagues told me to take the time I needed, yet what I needed seemed unknowable. It was my second year on faculty in a “soft money” environment; I needed grants to have a job the following year. I remember sitting on my mother’s couch in Florida, toggling between writing my dad’s obituary, helping with my stepfather’s breathing treatments, and editing a grant due in 2 weeks—my son asleep on my lap. Meeting deadlines felt easier than requesting extensions, than explaining. Academic parenting, sandwich generationing, left no space for processing.”

Caregiving

As I go on to say in the essay, “After each death I went back to work within a few days.” Pragmatically, I was reeling, I had a 2 year old whose daycare was quite literally below my office and someone had to drive him there and back, and I had a grant due; I didn’t know what else to do with myself. In retrospect, it probably took 3 months for the shock to wear off such that I really needed time off to process emotions, and that’s about the time when things started going sideways for my stepfather again. You might ask why I submitted the grant on time: it was because I refused to write the cover letter explaining my father died. It also me took time to find words for what I was going through, and people who could give me stories that had edges of familiarities, like managing sudden loss, or grieving while caring for a toddler, or while also providing long-distance caregiving support.

Because my son is young, it’s meant I’m grieving while witnessed; I’ve been thinking a lot about the example I’m setting for my son around emotional processing. Our kid library now contains things like The Goodbye Book and the Invisible String and The Rabbit Listened. It’s also made for some very strange but ultimately funny experiences. For example, Theo has asked me, seemingly out of the blue, on the way to daycare, “So Grampie Jack is dead? That means he can’t eat breakfast? And if we met him he’d be all bones”. It also means I’m practicing validating sadness and frustration without trying to fix. This week it meant holding Theo while he cried after school because his friends wouldn’t help him finish building a knight’s helmet out of construction paper before pickup, and then asking if he needed more time to be sad or if he wanted to talk about solutions.

Research

There’s also a portion of my essay where I point to the experience of doing research while grieving in a field that is proximal to the source of grief. As I wrote:

“Yet the hazard of my research focus meant that every meeting, every conference, every manuscript, threatened to trigger my grief. Brain scans discussed in a research meeting (not my father’s, unchanged in 24, 48, 72 hours); a study of hospice recipients disenrolled for extended prognosis (clenched jaw when someone asks, “Is that a bad thing?”).”

I did not expect that being an Atlantic Fellow at GBHI would teach me to read the brain scans that told me my father was gone. I did not expect to dislike all the grants and research I was doing at that time, because it was grief-stained. And I did not expect that I would not be able to collect data for the qualitative studies I designed because they included interviews with former care partners of people who had died from a dementia syndrome. Fortunately, I had colleagues in palliative care, earlier members of the dead parent club, who strongly recommend that I hire help. Better still, I happened to be able to hire a qualitative expert who herself had lost a father; she brought that sensitivity and support both to the interviews and to our collaborations and became a very good friend.

In qualitative research we have a practice of “reflexivity”, where, throughout the conduct of data collection and analysis, you reflect on how your values, judgements, beliefs, and experience as an individual are influencing the study. As you might imagine, I’ve needed to do a lot of this over the last 3 years. I might have to walk away from my computer while reading a transcript of an interview, like this one from a former care partner, wife of a husband with PSP, who said:

“At the end, we could only do yes/no. Or up/down.  He had his only visual signs.  He could smile, and that would be his sign of communication, and he could do the yes/no.  But we were pretty much down to that for two years.  We tried all sorts of things like, you know, boards where we’d write the letters and do the vowels on the side and all kinds of complicated things like that. And it was actually-- my husband was a very outgoing person and it was cruel, I think, to lose communication.” (former care partner #20, wife, 72; PWLD husband, PSP)

This cuts close, because it was also our experience with my stepfather during his last year of life.

My stepfather’s experience with Multiple Systems Atrophy has been an ongoing influence on my program of research, but his end-of-life experience drove me to write another essay titled “The Hidden Curriculum Of Hospice: Die Fast, Not Slow”. One colleague generously called this an essay in the style of Oliver Sacks, blending personal experience and professional expertise. It starts:

“I lost my faith in hospice care when my stepfather died. As a former hospice administrator and researcher in geriatrics and palliative care, I knew the ambition of hospice—the promise of what it could be. But our experience illustrated how hospice has become care for people dying fast, not for those trying to live well while dying slow.”

In reflecting on my motivations for writing these memoir-essays, in preparation for this talk, I’ve realized that they reflect my training in public health and health policy ethics. These fields attend to what is considered valuable, who gets access, who is left out, what are the benefits and burdens of systems, and who gets a say their design? In my research, I think about these questions in the context of older adults with neurodegenerative diseases and caregivers. In the JAMA essay, I considered bereavement leave and supports. In the Health Affairs essay, I thought about this in the context of systems for end-of-life care. As I said in this latter essay:

“All humans die, yet we stubbornly fail to develop systems that make dying and bereavement less terrible. Hospice developed as an alternative to a death-denying hospital culture, an interdisciplinary care model to serve the person and family at end-of-life. But it has evolved into a business that relies on the extensive unpaid labor of family caregivers (and the associated costs to their physical, mental, and financial well-being). The actions of Larry’s nonprofit hospice diverged from the ideals of the hospice philosophy yet accorded with the incentives of the Medicare hospice benefit and oversight.

The hospice philosophy aims to provide whole-person care, tailored to the preferences of patient and family, to relieve suffering throughout the dying experience. The benefit was designed around the relatively predictable course and symptoms of people dying of cancer: short prognosis with intense pain. Yet the vast majority of Medicare beneficiaries die of noncancer serious illnesses.  

[There’s an interlude of policy detail, and then I go on to say]

Payment reforms are being attempted, but regulatory oversight intended to minimize inappropriate enrollment of low-need patients with prognoses longer than six months (to boost profits) has sometimes instead led to the early expulsion and abandonment of people with long trajectories of functional decline and hard-to-predict life expectancies.

The chasms of care are wide for the reluctantly dying. We need an alternative.

No revolt can come from the dying, their caregivers, or the recently bereaved—their energies are otherwise occupied. It falls to those of us left behind to advocate for policy change and models of care that mitigate rather than exacerbate the challenges of dying.”

An Ending

I will end by saying that I wish I didn’t have the expertise to be speaking today. I don’t always want or have bandwidth to do this advocacy. I worry about unintended consequences of vulnerability, particularly as a woman in academia. I get frustrated at how slowly my research papers are developing. And yet I want better from the world. This summer I started an Academic Dead Parents Club support group for colleagues who are navigating grief. I continue to advocate for change when I can, both at UCSF and beyond.