We unplugged my father from everything, as he wished, but I wasn’t ready to let go – Washington Post

Posted: June 5, 2017 at 6:49 am

By Caroline Wellbery By Caroline Wellbery June 4 at 7:30 AM

After my father died, I retreated to a place in California Ive long cherished for its peacefulness. On a hike, I took a wrong turn and got caught in an endless thicket of branches and brambles. But I couldnt go back. I could readily see the trailhead below through the thorns. Theres only one way to go, I told myself, and that was forward.

It could hardly be a coincidence that just three weeks earlier, when my father was dying, I had spoken those same words: The only way is the way forward. Like that wrong turn while hiking, my fathers last illness thrust my family and me down a painful path, and we had no choice but to keep going.

My father, so alive, so witty and loving, had been in the middle of a conversation when he had a stroke. Two days later, in the hospital, unable to control his airway because his swallowing muscles were paralyzed from the stroke, he inhaled his secretions and began struggling to breathe.

My dad had always been clear about the circumstances under which he would choose not to live. His wife, my siblings and I knew what he would want us to do. It was a difficult decision, made at a meeting with doctors, hospice nurses and social workers, but a decision without moral ambivalence for any of us: The time had come to stop the antibiotics and IV fluids. In addition, we refused a feeding tube that the doctors had suggested but we knew he would not want. The time had come to let him die.

While morphine eased my fathers breathing, our emotional pain sharpened. His death was now inevitable. Before our decision, he had had a serious bleed in his brain, paralyzing his body and slurring his speech. After our decision, he was bound to die. The difference in trajectory cannot be underestimated. Its the difference between hope and utter resignation.

[They said my dad was having a stroke. I wish Id been able to handle it better.]

My mind played tricks on me as we waited: Isnt there some other way? I kept thinking of Beethoven, who, in his last string quartet, incorporated this question: Does it have to be? He answers straightaway in a determined allegro: Yes, it has to be. The words became a mantra for me: Yes, it has to be. As a doctor, Ive seen so many families struggle to accept similar losses, but now it was my turn to experience the nearly unbearable command of these words.

Grieving begins, really, with the knowledge of our mortality. I had begun preparing for my fathers death. Intellectually vibrant though he was his extraordinary memory a Google for our family he was 94. He would not live forever. This was my experience of the first stage, still full of hope.

The next stage came when I arrived at the hospital on the day of his stroke. As a physician, I knew how bad it was. I saw the CT scan, with what doctors called the moderate-size bleed on the left side of his brain. As he developed complications, my grief intensified. I took in, as though drinking in gulps, his gestures, his nods, his efforts to speak. I took in the smell of his hair, the feel of the bristles of his little mustache. I took in his racing heart, the living warmth of his skin, the squeeze of his hand when he couldnt talk. I took in the single tear that rolled down the side of his face. I took in his breaths. I was fully present during his last moments, as his breathing stuttered and his jaw slackened, as though I were memorizing everything.

Naturally, the grieving continued. Grieving is both universal and unique. The intense cramp around the heart, cries and tears, the waves of sorrow, these are all our common responses to loss. They have a biological feel and cannot be so different from what some animals undergo when they mourn. There is also a strong sense of disbelief that someone who has always been there and has been a reliable part of your life has suddenly vanished forever.

Handbooks on grieving tell you some specific things about losing a parent. For example, a parents death shatters the myth we children nurture of their immortality. So true, in spite of everything I knew about death. I cried: Why did my father have to die at 94? Why couldnt he have lived to 96? Its irrational, but such thoughts make sense in light of our commonly held belief that death, while inevitable, lies somewhere vaguely in the future.

More truisms about parental loss: The death of a father or a mother can leave a person feeling adrift as that last remnant of seemingly supernatural protection breaks loose.

Then theres the accompanying loss of identity. Parents are keepers not only of childhood memories but also of the entire context in which we children grow up, which makes us feel even more bereft when they are gone.

And finally, parents may have been friends and confidants, as my father was to me, especially after my mother died 10 years ago. He and I spoke every night. He infused his attention with an unconditional love impossible to find anywhere else.

My mother had had a stroke years earlier, in exactly the same part of the brain as my father did. At the time, she was in her late 70s, and she survived for seven more years. These were difficult years, spent in a wheelchair, requiring my fathers full-time care. Slowly, imperceptibly, she faded, slipping into ever greater passivity, until in the end an aide dropped her and she didnt survive the fall. Sad as we were, wed all had a long time to prepare.

With my father, it was so different. He was full of plans. He was going to travel with his wife to Europe. He was slated to receive an achievement award in his native Vienna for his scholarly contributions. We were going to meet in California for my beloved retreat at a Zen monastery. We were supposed to enjoy the smell of the Pacific Ocean and walk in the Marin headlands where I ended up hiking alone. He was supposed to stay in the room next to mine. His death was a shock.

My siblings and I grieved his death according to our personalities.

My sister, practical and forward-moving, makes every effort to put aside the painful memories of the hospital as best she can. I, an introvert and a doctor, have immersed myself in them. My brother, who deals with most difficulties by going on long, arduous runs, went running. Uncomfortable expressing emotions, he has avoided the topic of my fathers death. But he also sent me this poem, exploring the conflicts in his relationship with my dad that remained unresolved:

We had no foundation.

I built ruins upon ruins,

that crumbled into dust and blew away

Where shall I lay my weary head?

My house is made of the stuff of dreams,

flitting like ghosts in the sunlight,

dust devils meandering without destination.

The drums of war deep into the night.

Where is our peace?

Three weeks after my fathers death, I went on my hike and got lost. Eventually I emerged from the brush and found the trailhead. I got into the car, returning it on time to the rental place. My arms were scratched up. My legs were black and blue from some falls Id taken.

A few days later, my body erupted in blisters and sores. First the rash appeared on my arms. Then it traveled to my neck and face. It covered my trunk, groin and finally encircled my ankles. I had developed an allergic skin reaction, maybe to some poison oak that I hadnt noticed. The rash was so bad it could only have been invented in hell.

Weeks later, the pain, redness and itch slowly faded away. The memory of it, a reminder that there is no way but forward as painful as that may be, will remain with me always.

Wellbery is a family physician and medical educator at the Georgetown University School of Medicine.

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[Dinner-part diagnosis: The occupational hazard of being a doctor]

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We unplugged my father from everything, as he wished, but I wasn't ready to let go - Washington Post

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