Yet another consequence of the pandemic is that the subjects of death and dying are newly prominent in the national conversation. Even though the elderly are disproportionately affected, people of all ages — especially middle-aged caregivers — are confronting mortality perhaps as never before. Apart from surviving COVID-19, many are doubly-conscious of physical challenges looming otherwise.
Soon after we connected twenty years ago, my recently-deceased husband Ray said: “You know, Richard, we could become old men together. One of us will likely go first. I hope it’s me, to skip what must be unendurable grief.”
This faded as an issue, but another one did not. Often observing poor souls stooping over canes or hobbling on walkers or managing in wheelchairs, Ray would say: “I hope one thing is clear about me. If it should ever come to pass that the quality of my life, and therefore ours even more so, is reduced to such a point, I would not want to go on. I hope if you still love me that you will pull the plug.”
Well, there is no proverbial plug to pull nor pill to swallow, but more on that in a moment.
As the years went by, we were saddened by a friend with an incurable disease which gradually, steadily reduced the mobility of every one of her body parts — five years, four years, three, two as it ticked to her inevitable end. This happened before Vermont’s Death with Dignity legislation was in place. (Bernie Sanders notwithstanding, Vermont has long been a bastion of progressive ideas, the first state to sanction same sex civil union, for example.)
Our friend considered moving to Oregon, home of one of her adult children, where “assisted suicide,” a phrase that offended Ray, preceded Vermont’s law. But the circumstances of her deterioration and vigilance of her local physicians precluded such a move. And so she determined to cease eating and drinking on a set date a few months hence, understanding that this is a humane and sure method of concluding one’s life.
Perhaps because she was athletically fit, or her being just sixty years old, the period of her abstinence went beyond a matter of days. Close to a month, as it happened. This was extremely burdensome for her adult children with families living elsewhere who kept returning once again, to say goodbye. It was excruciating for her spouse. Our friend’s mind was intact in spite of the near-immobile rest of her, strapped into a special wheelchair and outfitted with a microphone so her whisper could be heard.
This experience and a few others hardened Ray’s resolve. “You will pull that plug, you will give me that pill,” he said, assured by the time of his potential leave-taking, such rights for a terminally-ill patient would catch up to the civilized Scandinavians.
This was not to happen for him. Close, but not sufficiently so.
Fit from years of weight-training and yoga, Ray was diagnosed out of the blue a few years ago with the most virulent strain of lymphoma/leukemia. Medical folks will know this as A-LL. Because of his level of fitness, he nearly sailed through the most aggressive version of chemotherapy: five days in hospital with continuous infusions, two weeks home before he began the next of eight such rounds of treatment over six months total. Although suffering some fatigue but little else, by the end of his two-week home relief, he put on one of our usual, weekly dinner parties with gusto: cooking was his favorite pastime, loving to entertain we shared.
Ray began what was to be nearly three years of a maintenance protocol: daily oral chemo pills plus occasional infusions. Fatigue worsened, some gut issues flared, but he soldiered on. With a reduced immune system, he suffered a month of pneumonia, then a month of severe bronchitis. Friends, family, and physicians would never see Ray without his infectious smile and dry wit.
One of the original chemotherapy drugs is notorious for rendering neuropathy, the deadening of nerve cells in the feet. Ray was plagued even worse by the resulting “drop foot” on his left side. It was more present and dreadful than the cancer. A leg brace helped, to a point. Increasingly it was ruining his life — -forget getting in and out of our boat or walking to the mailbox. This was despite the fact that after a year-and-a-half the lymphoma was in remission.
Then the “s” hit the fan. He was diagnosed with melanoma, his thirteenth, albeit the prior episodes were enough superficial to be successfully excised. Not this one, deep in his scalp, requiring major surgery. The doctor said “satellite cells” would likely spread, and so they did: metastatic melanoma to his brain, liver, lungs.
This is three months before he died. Immediately the lymphoma regimen was halted to begin immunotherapy, its recent availability most effective, initially, with melanoma. Jimmy Carter’s brain tumor was completely eradicated, and at his ripe old age. We embraced hope for all it was worth, the possible recurrence of lymphoma unmedicated set aside.
But Ray was compromised by his prior cancer treatments, not a blank slate for this new attack. After the first round addressing the melanoma, incidentally at City of Hope, the enormous cancer center near Pasadena, he was decimated. If it were possible for Ray’s energy level to sink any further, it did. He was not in pain. He just felt like hell, diffuse, all over, appetite and even a glimmer of energy things of the past. The second round three weeks later he could barely tolerate.
Ray was set to continue this course in Palm Springs where we live the other half of the year. But his liver function was now compromised, and the third round was postponed…and postponed…to the point where even if he were eventually able to continue the immunotherapy, he was determined not to.
There were so many times during these final months that began with the hopeful melanoma drugs when he looked up at me from “napping” eight hours after his morning shot of Ensure to the day’s end and a semblance of “Happy Hour.” He’d plead: “I’ve been so ready to go. I hate I’m taking you along on this.” I told him it was a privilege to be with him.
The final three months were indeed agonizing, mentally for Ray, heartbreaking for me. He lost thirty-five pounds. Soon into the second month, Ray contacted two doctors back in Burlington, Vermont, also friends, who engaged within a single day Death with Dignity, the required two physicians, with the medications nearby in Middlebury.
Ray’s decline was so rapid that returning to Vermont became out of the question. We connected with an excellent hospice for, at first, palliative care. But Ray insisted: there has got be a faster way.
The hospice referred me to a medical practice two hours away, in Laguna Beach. It turned out here in our Coachella Valley of a half-million people there is not a single physician who participates in California’s own Death with Dignity. Even our wonderful Palm Springs oncologist, adoring Ray and tending him with amazing care and concern, was prohibited by her corporate employer from being involved in this procedure. Luckily, we found the team of two doctors the two hours away, and began the legal 15-day period of FAXing, signing, FaceTime interview, near daily, required communication.
Ray was to be interviewed by phone on the 15th day and be lucid enough to confirm his wishes to proceed two days hence with the doctor coming to our home and overseeing what Ray was to do, unaided.
We were clearly informed of possible difficulties for the patient to hold a glass and drink a half-cup of liquid the thickness of Ensure within two minutes. The drink is extremely unpalatable and is mixed with apple juice. There can be gagging to cancel this critical step. Unconsciousness soon follows complete ingestion, but death can take from an hour to six or more. Sometimes unconsciousness does not follow the sedatives, and additional ones are employed.
Ray, although fully talkative three days before he died, became groggy and mostly slept. Still dressed in the morning with my help, my assisting him with his walker having ended weeks before, he was confined to my moving him in a wheelchair, no power of his own. But nearing the end, he was incapable of the 15th day phone call, let alone self-administering the final meds two days later. He would have availed himself of a simpler method, if there was one.
And this is in blue-state California with a law on its books. Goodness knows the proscriptions against the choice to end one’s life in this vast country of ours, given the very real and understandable religious and political reasons why Death with Dignity is not for everyone. But in case one thinks that this controversial but becoming well-publicized right-to-death is anywhere near the right-to-life in the U.S., they are mistaken.
Lingering deaths can be commonplace. A person with a terminal illness can be bedridden for weeks, months, sometimes years, heavily medicated, minimally-functional, marginally-communicative. We know this is often difficult work for loved ones, even with their relation in care facilities. But the will to live is deeply ingrained. It is aided by the medical profession and family who are pulling the patient against the odds ever-onward, with an alternate treatment, a new drug.
My husband Ray and I were in total agreement with his having my unequivocal support. This is something we talked about freely, years ago, but perhaps not such a frequent topic for many if not most. The Denial of Death, a classic written in 1974 by Ernest Becker, treats the subject as so immersed in our culture as to be near-invisible.
Fortunately, Ray, a mere week or so before he died, had me sit by his side at his computer, trying to make idiot-proof one thing after another to simplify matters for me once he was gone. On each occasion, I would thank him for this gift. It did give him a measure of satisfaction to better prepare me, but as my daughter pointed out, perhaps he was holding on longer than his base intent to be done with it all to ensure I would be less crushed by his loss.
Yes, I was truly grateful for his desire to ease my impending burden. And yes — even helping me compose his obituary to get the facts and sequence straight — these final offerings were hugely helpful.
But, no, it has not mollified the burden of my grief, the devastating loss of the love of my life. I sincerely wish he had been able to complete his long and wonderful journey with which he’d made peace when he had done so, three tortuous months before his actual release.