When Death Comes: An Oncology Nurse Finds Solace in Mary Oliver
My partner passed away this week from fighting cancer for a year. Their final decline was rapid — chemo ended in December, ineffective. A clinical trial ended in January, ineffective. While waiting for another treatment, hypercalcemia from the cancer leeching calcium into their bloodstream. Their tumor-laden liver began to fail. Their platelet count and hemoglobin plummeted. All of these combined to collapse their mental and physical capabilities, and over the course of about 10 days they went from walking on their own and talking to being unable to do anything more than move their arms.<p>We arranged for hospice care while they were still lucid, both of us hoping that my partner would have enough time to at least hear from most, if not all, of their friends and family. Before this decline, they had expected to live for at least another 3-5 months, enough time to try one last-ditch off-label treatment, coordinate safe in-person visits, settle their affairs. When we arrived at the hospital, their oncologist said they might have weeks left is they responded to treatment to reduce their calcium levels. When that didn&#x27;t work, they told us days, plural. They barely made it 36 hours. It was like watching them age 5 years every day over those 10 days, as their speech and cognition slowed, and their expectations went from being able to move with a walker, to with a wheelchair, to being too weak to do anything.<p>Because of COVID, there was no such thing as round-the-clock shift care for critical patients in at-home hospice care. If a patient didn&#x27;t require in-person intervention or assistance, it was done over the phone. I was given enough pain and comfort medicine to last a month and instructions on how to administer it. Neither of us had any local family; my parents were dealing with their own health crisis, and my partner&#x27;s was racing to make plans that didn&#x27;t have time to even get off the ground.<p>The one thing hospice care did do was prepare me for what the author of this article faced. Everything about the process described in it was as it was for us, except for having nurses and family there in person. It all happened alone, the two of us, no monitors or equipment or staff. I called for help when my partner&#x27;s breathing started to slow, knowing from orientation that it might mean anything from minutes to days were left. The nurse on call took about 40 minutes to get to me, which was 30 minutes too late. In the meantime I gave my partner pain and comfort medicines as directed with no way of knowing if they were working, if it was enough, if it was helping or hurting, if they wanted them or not.<p>I also don&#x27;t know how to share this process. It was a different nurse each call and visit. The oncologist has been AWOL and not returning calls since my partner was sent home. Reading the article I&#x27;m struck by how easy it is to take having more than one visitor in a dying patient&#x27;s hospital room for granted; I&#x27;m shocked that it&#x27;s dated during the time we were in the hospital. I&#x27;m being looked after, by friends and neighbors who are close enough, and by a social worker attached to the hospice service. But I&#x27;m struggling to cope with things that I might not have had to even think about had I not been the only person there for my partner through this decline, and also primarily responsible for the minutae of their care, and also their sole legal representative once they became incapactiated.<p>The hospice service gave me a crash course in adminstering pain medicines, and observing their breathing and heart rate manually. I performed most of the task as close to the letter as I could, but did I do it right? People tell me I &quot;did a great job&quot; caring for my partner at the end — nobody who says this was there, or could have been there, and my partner couldn&#x27;t communicate in the last 6 hours. How could I possibly know and qualify &quot;great&quot;, or even call it a &quot;job&quot;? I can&#x27;t know if they weren&#x27;t suffering, or if what I did or didn&#x27;t do caused it.<p>I also had to transition, without a chance to process what happened, from caring for my partner to helping clean them to being their legal representative and enacting their wishes, coordinating their cremation and picking up the remains, distributing their favorite things to friends and family, canceling services, recovering and backing up their online accounts, writing their obituary, preparing probate filings, getting death certificates, planning a virtual memorial, planning another one when travel is easier... all while doing what I had already been doing before, taking care of the pets, managing the house, fighting with insurance, listening to friends and family cry and offer condolences on call after call. Taking care of myself is at the end of the list, not out of self-punishment but because everything else has to be a higher priority.<p>The only reason I&#x27;m even writing this is because the only effective mechanism I have is a journal — I&#x27;m writing this anyway, and in 9 months of looking for ongoing help coping with this disease I&#x27;ve never even gotten off a waitlist for any therapist covered by my insurance. And like at several points in my partner&#x27;s suffering, places like this feel relevant, that anything I&#x27;ve experienced might resonate with or help anyone else. Otherwise I&#x27;m screaming into the void of my partner&#x27;s absence without so much as an echo, avoiding bottling up these feelings only by pouring them out in a mess onto the floor.<p>How is this the way of things? Every day I wake up exhausted, with too many things to do to stop and grieve. In every task I do, all I can think of is how fundamentally broken reality itself seems to be, how it all feels like a glitched-out world where nothing works as designed and every person I _have_ to talk to and every thing I _have_ to do, are just rat-kings of mitigations and hacks covering systems broken by design, all cascading into one another until the fantastic horrors of my sleeping nightmares blend into banal waking nightmares that drag on for what feels like weeks every day.<p>Some of the first words out of everyone&#x27;s mouths are &quot;how can I help?&quot; and if I was less kind I would tell them that if they don&#x27;t already know how, then that&#x27;s a meaningless question to ask. If you could help me, you would be here; I would have invited you here a week ago, and you would&#x27;ve been able to accept that invitation. We&#x27;d already be working through this together. Instead, I have flowers through the roof — nobody recognizing that having beautiful living beings that I don&#x27;t know how to care for slowly dying in the same room as my partner _isn&#x27;t helping me_ — and I have enough delivery service gift card credit to live off lukewarm garbage food leftovers for months in the knowledge that these universally horrible companies my partner both relied on and hated are banking interest in their name.<p>The only help I actually want is to be held, even for a moment. There are maybe two people on this planet who are both close and comfortable enough doing that right now, and I never feel deserving enough to essentially take over any part of their lives and ask for it.<p>So I steal moments of sadness between exhausting Zoom meetings, socially distanced errands, phone calls stacked on top of one another until I&#x27;m so numb I stop answering the phone when it rings.<p>And I know when I run out of all these things to do, all these micro-tortures of doing anything but coping for everyone but myself, all of this backed-up grief will crush me. And I&#x27;ll have to let it crush me, and survive it, so I can honor my partner&#x27;s life by not doing what they feared most about leaving — that I would give up.