The Long Goodbye

The biggest investment I made over of the last couple of years was in being present for the end of my father's life and helping my parents plan for his death.

Dad survived a diagnosis of lymphoma in his late 20s, fortunate that the era heralded some of the first truly effective treatments for that disease. One major treatment component was radiation therapy.

[As a resident rotating through a large academic center in LA in my 20s, I had the surreal good fortune of tracking down and introducing myself to the radiation oncologist who had treated dad in the early 1970s, a gentle soul who told me through damp eyes that I was the image of my father from those many years ago. Dad connected with him by phone soon after and was deeply moved by the experience.]

Fifty years later, the radiation that had saved his life wreaked irreversible injury on dad's heart valves, and despite accompanying him to a host of appointments with highly skilled cardiac surgeons and interventional cardiologists, there was no magic bullet to be found.

Although willing to cut or cath, all the experts were consistent in their messaging: any intervention would be high risk and experimental. If he survived, and if he experienced no complications (stroke, etc.) he would face a long rehabilitation away from my mom and the family - this was during the pandemic, and visits were highly restricted.

Dad decided to forego the hail Mary treatments, and I brought up the prospect of palliative care. My parents, who thought it was the same thing as hospice, dismissed the idea quickly.

Several months later, his PCP suggested he see a palliative care doctor. Dad remained skeptical but went anyway.

At their first meeting, my father grilled the palliative doc with a question he'd bring up at every appointment thereafter:

Dad: When do you expect me to die?

MD: Based on what you've told me about your medical history, I'd have expected you to die 50 years ago. You clearly possess some quality that defies expectations.

Dad liked the palliative doc immediately. As my mom described it, he did not sugar-coat reality, but after every one of their visits, my parents left feeling cared for in a real and meaningful way.

Dad began to require oxygen, first on an as-needed basis, then all the time, in ever higher concentrations. He went from walking independently to using a walker to requiring a walker and a companion. We got him a wheelchair for transporting to and from his doctor's visits, until leaving the house became too difficult to consider.

Walking from one end of the house to the other became an elaborately choreographed moment of utter chaos, dad asserting what independence he retained by speeding down the hall like a formula one racer behind his walker, trailing oxygen tubing while my mother followed behind lugging a heavy wheeled oxygen concentrator like an absurd caricature of an aging couple trying to make an impossible flight transfer at the airport.

Dad was visibly struggling to maintain the fierce independence that he so valued. His mental acumen thankfully stayed sharp over this long goodbye. In many ways, this was a source of comfort - we could continue to communicate at a very high level about what we needed to arrange to ensure mom was looked after. Unfortunately, it was also a source of anguish - he would look up at me, working hard to breathe after a simple visit to restroom, and shrug his shoulders as if to ask what the point was of existing in his current state. I had no answer for him.

Well before I knew he might need it, I brought up hospice, and explained the support services that accompanied it as well as the curative treatments and ER visits that it implied he would forego, so that dad at least knew it was available to him. He paid close attention to my description and asked insightful questions. My mom listened silently by his side, with an openly pained expression bordering on tears. He thanked me politely and informed me he was not ready for that step now.

He became increasingly dependent on my mom, and her life became completed dedicated to his needs. It was the ultimate honoring of their wedding vows, but it was hard on both of them.

They developed short fuses bred from 24/7 proximity, a lack of social outlets, a total dependence and constantly bearing witness to suffering. It was remarkable how long they both endured what anyone else might consider an impossible equilibrium.

When it became apparent to both of them that mom was struggling to meet his escalating care needs, dad surprised us all during one of my visits home by asking me to remind him what hospice offered. I did, and he made an intake appointment to be enrolled in hospice the next day while I was there. In retrospect, I only wish he'd enrolled sooner.

The thrice weekly bathing visits by a strong younger man who shared Dad's sense of humor energized my parents. Dad began to smile more, and exchanged jokes and with his caregiver. He insisted my mom help him get ready early in the morning before this caregiver came by, like a teenager primping before a date.

Their relationship was endearing, and the caregiver visits were often the highlight of otherwise uneventful weeks. When dad was too ill to travel to and from a milestone event for my son, this caregiver stayed with him for the day so my mom could join us.

Another valuable service was the young college student who offered to sit with my dad for a couple of hours every few weeks so my mom could have a respite to go shopping and perhaps get a cup of coffee with a friend or attend an art class.

The nurses who checked in weekly, ensured there were ample supplies, and acted as his physician's eyes and ears (his palliative care doctor stayed with him and became his hospice doctor) were masterful logisticians, ensuring they never wanted for a medication or any supplies.

Mom even befriended the oxygen canister delivery man, who ensured she and dad got a few extra canisters after a frightening weekend with a power outage.

In this way, dad maintained his dignity and what independence remained up until the end. It certainly could have gone differently at any number of moments in time.

After a frightening late night where my dad barely avoided a fall, he ended up in the ER and by morning was transferred to a local hospice facility that fortunately had an available bed. Dad entered under a respite benefit he'd not used - every couple of months he could enter a residential hospice in order to give my mom a few days of respite.

I drove up to see dad the night he was moved to the hospice, and the next morning he was lucid and in reasonable spirits with my mom and I at his side. His hospice doctor visited him in the facility, and they had a good conversation about his possibly staying there going forward to alleviate the burden on my mom - something he and my mom agreed on.

My uncle, aunt and cousins stopped by throughout the day to visit, and all of my siblings called. It was a parade of love at the bedside.

That afternoon, dad was napping when I recognized him to be decorticate posturing. Dad was surrounded by family when he took his last breath, my mom holding one hand, me holding his other, his brother in the room.

It was a good death.