by Laura E. Kelly
I spent much of my years with my father perfecting my role as the helpful daughter, the self-reliant one who got good grades and didn’t get into trouble, a problem solver, not a problem causer.
So it killed me when I couldn’t step up and help my father with a big problem he faced near the end of his life. Or rather, it killed him.
While I was growing up in Michigan, my father and I were close, both by temperament (realists with a sense of humor) and interests (words and images, although I lacked his dominant political gene). I was the oldest of four close-in-age kids, and in our teens my sisters claimed there was “one true thing that would never change” in our family: I would always be our father’s favorite.
But that did change. I moved across the country to New York and married, and over the years I think he filed me away as “Doing fine.” There are worse files to be stashed in. Like the ones my siblings inhabited. I watched how my father’s energies flowed to my younger siblings, who didn’t share my philosophy of “be the solution, not the problem,” or at least they were more open about their problems and willing to accept others’ solutions.
My dad, who like me was a problem solver, seemed truly engaged when helping my siblings sort out their various work and life issues. He sometimes tapped me to help them out, too, with various forms of support.
Meanwhile, over the years, our connection had frayed a bit. My father and I lived in different states for more than 30 years, and letters, emails, and phone calls just weren’t the same as living in the same city, as he and his three other grown children and their kids had for the past decade. They claimed his attention in a daily way.
Another, bigger thing had also laid claim to my father’s attention. He’d been diagnosed with Stage 4 colon cancer. Fortunately, he and his doctors had stopped it in its tracks with various drug trials and treatments, and over the subsequent four years my dad celebrated his 80th birthday and plenty of other family holidays. His kids could almost believe he wasn’t mortally ill, and I think he believed it too.
But that was a mistake. Time was running out.
The Phone Call
I picked up the phone on a Tuesday morning in mid-October to hear a weak, unrecognizable voice say, “Hi, honey. Just wanted to give you an update. I’ve been losing weight and feeling pretty fatigued the past week. If I start feeling better I can get into a new drug trial, but meanwhile my doctor said I should call you kids.” My father offered scant more info, and then told me he was going to call the others.
I hung up alarmed and confused. His fatigue and weight loss were worrying but a phone call from our “don’t worry about me” father was even more concerning. I had just bought my plane ticket to see everyone at Thanksgiving. Could I wait until then to see him?
That night my three siblings and I compared notes long distance about The Phone Call, all of us unclear about what we’d been told. I said I would call my father’s internist the next morning and find out more.
The doctor was out for the week, but his nurse matter-of-factly informed me that my father was “very sick.”
“What exactly does that mean?” I asked.
“There’s no more to be done,” she replied. “He may very well have less than a week left to live.” She concluded by referring me to a local hospice service.
In frantic disbelief (Dad just had Sunday dinner at David’s house!), I emailed the hospice contact number to my brother, and booked a three-hour flight to Michigan, thinking the whole time, “Once I’m there, I can help.”
By the time I got to Ann Arbor the next afternoon, things were already in motion to move my father from his small, jumbled house to my brother’s larger family home, where my brother had decided we would “do” home hospice.
In my rental car, I followed David’s car transporting my father across town, hoping my brother wouldn’t sail through a traffic light too fast and leave me lost behind them. I had no idea how to get around that town on my own.
Later, helping him out of the car, I was stunned to see how weak my hearty 6 foot 4 inch father was. He leaned heavily on my brother and me as we slowly walked him to David’s ground-floor master bedroom. The king bed had been pushed against one wall, with a portable wheeled hospital bed placed next to it. As we lowered the portable bed’s railing and sat my father down on the edge, it was quickly apparent that the bed, which had raised head and footboards, would be too short for his tall frame, the first of many such indignities.
My father looked around the sun-filled room, and then dictated a short list of supplies he thought he might need. David’s wife was away occupying their young daughter somewhere and I didn’t know my way around the area, so my brother told us he would do the run to Target.
Too Late To Help
I was alone with my father. For, really, the first time in years.
We gave each other a long, level look. I put a hand on his leg, as he perched on that too-small bed, and asked, “How can I help, Dad?”
He said, “Get me to Vermont.”
I knew immediately what he meant. Michigan is not a right-to-die state. Vermont was the closest one. My father was determined to be in as much control of his death as he had been of his life.
I nodded as he explained that he had planned to research the residency rules for moving to Vermont to qualify for their death-with-dignity law, but he’d run out of time. He asked me to go online and find out.
“Print it out so I can read it,” he said in his hoarse voice.
A lot happened that long first day and night in home hospice, which is to be expected when a patient is suffering from terminal agitation and his only nurses are an ill-equipped daughter and stalwart son. But on the second day, I somehow found a moment to wrestle with my sister-in-law’s ancient Macintosh, and I brought my father a printout of the Vermont state residency law for medical aid in dying.
Lying back on his pillows, his dangling feet propped up by a smaller pillow wedged under his ankles above the hard footboard, he asked me to read the rules.
Must reside in the state for three months or more.
He looked at me, his blue eyes magnified behind his wire-rim eyeglasses.
“Too late,” he whispered.
The uncharacteristic look of anger and despair that crossed my father’s face when the Vermont residency rule sank in is something that I will remember the rest of my life. Anger because after four years of doing everything he could to extend his life, he would now have no say in how or when he would die. And despair because he feared the suffering and loss of control that was headed his way.
And he was right to fear it.
I wrote at the outset how it killed me when I couldn’t step up and help my father with a big problem he faced near the end of his life. The fact that the problem he wanted help solving was how to end his life with dignity, in effect help in killing him, is ironic, I guess.
The issue remains, however, that I couldn’t help him. Feeling helpless like that is distressing for the helpful daughter, the people pleaser, the one who seeks approval for being the solution not the problem.
I’ve also realized that part of me harbors some bitterness that my father put himself and me, us problem-solvers, in this position. I learned later that he’d been told months earlier that his tumor was growing again. Maybe he didn’t believe his doctor or perhaps he really did think he could get into another drug trial that would stave off his cancer’s grim progress. Certainly, I know Mr. Problem Solver didn’t want to upset the family by sharing problematic news.
So, precious time passed.
That said, it’s hard to imagine that if the timing had been different we would have bundled my father off to another state far from everyone he knew, even for the valid reason that he deserved choice and control over the manner and timing of his death. It is clear, however, that he wished to relieve himself and his loved ones of pointless suffering, especially once it was evident that “there was no more to be done.”
Even as I revisit the situation in my mind, regretting that I couldn’t deliver on his wish, I know he didn’t blame me for not being able to help him at the end.
Instead, over the next 11 too-long-but-too-short days, my father turned his attention toward encouraging me to continue to help various members of the family if they needed it, procuring from me one of those deathbed vows you see in the movies.
Now, a year and a half later, I’ve learned that problem solving as a long-distance sister is hardly an adequate substitute for the hands-on attentions of a nearby father—for me or my siblings. But I’m trying.
Meanwhile I’m also doing volunteer advocacy work for the passage of aid-in-dying legislation here in New York.
It may be too late for me to be the helpful one for my father that one last time, but maybe I can help myself. I bet he would approve of that.