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Doing it right

“I am not fearful of dying. I just want to do it right.”

Those were my husband’s words at our last meeting with his oncologist. Two weeks ago.

She liked him — smiled at his desire to “do it right.” We thought we had more time.

We opted for Providence Hospice enrollment the day after our meeting with the oncologist. We were buoyed by the idea of readily available nursing support.

We envisioned a quiet summer of sitting on the balcony overlooking the river watching the osprey dip and swirl. We imagined a good death.

It did not happen that way. Howard Martin Johnson, my husband of 38 years, died Friday, June 17, at 9:34 p.m., three days after his enrollment in the hospice program.

The cancer he’d lived with for four years rapidly metastasized to his brain in those final days. I am told it happens rarely — in less than 1% of men whose originating diagnosis is prostate cancer.

We had been living with dying for a long time, but still, I was not ready. Although is one ever ready for the death of a loved one?

If you have been a family caregiver for someone in the dying process, you know about this. If you have not been a family caregiver, you can expect to be. Stand ready.

The week started normally, when “normal” is a medication-taking and hydration-monitoring routine with many dimensions. We logged, checked and re-checked all actions taken. We had a caregiving plan of action, but it constantly changed, dependent on the primarily presenting symptom.

There were so many symptoms: pain, nausea, sleeplessness, anemia, fatigue. I am tempted to share how we addressed each one, but I think it is more helpful to try to tell his dying story — try to tell it “right.”

In the first day of the week of his death, Howard completed the New York Times crossword puzzle — in ink. He did that every morning. I noted it took him a little longer than usual.

By the end of that day, he was unable to independently stand and walk and was having trouble speaking clearly. The following morning, after a night of sleeplessness and agitation, despite medication that usually countered that, with a hospice nurse named Oliver nearby, Howard spoke what I think was his last completely comprehensible sentence: “Let’s get this show on the road.”

He did not have the kind of quiet, easy, pain-free death I would have wished for him. But I have reconstructed “doing it right” to embrace the fact that he died at home in a sunlit room with our snoring dog nearby.

Our children and older grandchildren were able to step away from work and school obligations to be present. A hospital bed arrived in hours, not the days it usually takes to acquire one. A chaplain arrived at just the right time and led the family in prayer. Our teenage granddaughters sang to him, placed cool cloths on his forehead, told him their stories.

In his final hours, our son told me Howard murmured, “I love you, Sharon.” I was present, but I did not witness that. I am choosing to think he is “right.”

Sharon Johnson can be reached at sharjohn99@gmail.com