Column/Opinion

Time to go home

I expect my sister Jackie to be dead by the time you read this; I expect I will be making somber plans if I'm not already boarding a plane and flying off to do the sad work that comes with the death of relatives. I will stand in the back. I will hold my mother's arm.

They "transported" Jackie back to the hospital bed set up in my mother's living room on Tuesday. She had been in hospice, but expressed the desire to die at home. They couldn't, for liability reasons, let the family drive her there. They had to take an ambulance.

She hadn't eaten since Sunday. She'd hardly had any water, just ice chips against her lips. She could no longer stand without help. She didn't talk on Monday, but made some gestures. On Tuesday she moaned a few words.

This is what my mother tells me as I drive to the gym to get on the rowing machine.

The nurse told Mom to listen for a "gurgle." A death gurgle, she explained. Mom said she was aware. She's buried two husbands.

Medical science can at this point only make my sister "comfortable." A plan to extend a tube through her nose down her esophagus to her stomach to try to drain some of the fluid that bloated her abdomen was abandoned because they reckoned the discomfort wouldn't be worth whatever small relief it might buy her. The better solution was to simply flood her body with pain medication. An opiate blend drains continuously through a port that was long ago installed to facilitate the chemotherapy.

It is not enough, my mother says. Jackie is still in pain.

The pain has been a problem for months. Before they set her up with the pump in her port, she was being administered painkillers on the hour around the clock if she was awake. Morphine alternated with oral Dilaudid. Since my sister was not sleeping, my mother--or my sister's friend Mackie or my sister's husband Porter--sat with her.

It was the pain, and the ineffectiveness of this regimen, that necessitated removing my sister from the house where she wanted to die into the hospice proper a couple of weeks ago. The understanding was she would return home when they got the pain medication sorted out. They never did, but decided it was time for her to go home anyway.

My sister had been in palliative care at home for several months, since she decided to stop treatment earlier this year. She had fought the cancer for four years after being given a two-year prognosis; her chemo had been brutal. She decided to stop because she believed that a few good months where she could travel and watch her grandchildren play sports was better than another year or so of nausea and enervation.

Not everyone in my family supported Jackie's decision, but I did. There are studies that suggest chemotherapy in terminal patients is essentially ineffective. She was not getting better. No other modes of treatment were available to her.

While we might intuitively believe that any treatment is better than no treatment, the pitiless truth is no one gets out of this world alive. The trick is to live a good life, not necessarily a long one.

Tolstoy tells us that all happy families are alike and unhappy families are unhappy in their own way, but this is not really true. You probably understand families are complex and dynamic organisms that mutate over time. I have not lived near any of my

relatives for more than 30 years, and my first instinct when I have a few days off is not to travel to where they have collected. I talk to my mother nearly every day, and lately, when she has been conscious and available, to Jackie.

We have exchanged texts, which feels macabre under the circumstances.

Yet I am not aloof--at least I hope not. I just live a different kind of life, with my own family, a distant satellite of my mother's sprawling fiefdom of blood and cousins.

For us it is friends, not relations, we traditionally see during the holidays. Our extended families seem not to miss us much--they have their own confusions and habits of the mind. They have children and grandchildren and mutual concerns we have no share in. It is pleasant to see them, and they wouldn't dream of not gathering for holiday occasions, but there is no denying that our lives are very different from theirs.

Happy or not, every family is a web of blood and secrets, something invisible and sticky, detectable only in certain slants of light. Not having asked to be born, we awake among strangers and learn their code, their habits of thought, before we are sent into the large and dangerous world. Some parents are fair-minded and attentive, some are smug in their received wisdom, others are fearful and frail and unprepared to take on their natural work.

Mine were good ones; they did their best, and though no one escapes heartbreak, my life has been good. I am happy and settled; I love and feel loved. I have work that matters to me, perhaps to the point where other people might think me unhealthily consumed. Had I different parents, I would be a different person, and would not roll the dice on that.

Jackie had the same parents; but lived a very different sort of life than mine. She too found fulfillment. She had a husband for more than 40 years, a daughter, and grandchildren, and was in all their lives on a daily if not hourly basis. She baked and bagged cookies for their school classes. She was lavish with presents. And they all loved her so hard I fear her passing will stagger them.

She kept her sense of humor to the end. In one of my last conversations with her, I asked her what she was planning for Halloween.

"Oh, I just figure I'll sit on the porch and hand out fentanyl patches to the kids," she said.

It was the kind of black joke that maybe you can tell your brother but shouldn't repeat for a general audience. And the better you know my sister, the more you might understand the layers of the joke.

She had a deep faith. She did her best. And she fought so hard that there's a part of me that believes this column might be premature. That holds out hope for miracles.

Which are rare, but not unheard of.

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