Meditation on watching my husband walk with his mom through her long-term illness, 10.09.19

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Monday was our older daughter’s 9th birthday. My dad and his wife drove from North Dakota on Saturday to be with us.

Mike’s mom had a stroke-like incident on Sunday morning, one of many she’s had in the six years since receiving full-brain radiation for Stage IV metastatic lung cancer, when she was 65.

Mike manages all her care and has walked with her steadily through these endless winding blind corridors of her illness, her layered losses, her achingly slow but steady decline. He visits faithfully every week, takes her delicious meals (nursing home food is uninspiring, to say the least), listens to her, tells her over and over the truth of her unconditional belovedness, which she has always struggled to believe. He goes to all her appointments, her day-long oncology checkups at Mayo.

He serves as the liaison between her and her many, many, many encounters with the behemoth medical world. He did this even when he was working a full-time and demanding corporate job. When information doesn’t get conveyed, records get misdirected, wires get crossed, tests don’t get ordered that should have been, results don’t get relayed, procedures get swallowed up in endless bureaucracy — he’s there to gently check in and make sure things get set right. He gets invaluable and appreciated wisdom, guidance, and help from his two aunts, but most of the daily heavy lifting is his. It is lonely and hard work, to be honest. When his mom is hospitalized, he will easily spend 16–18 hours a day with her.

Every TIA, every hospitalization has seemed like “this is it” — she has been at death’s door so many times, and almost always on a major holiday, for some strange reason. In the last five years, we have spent at least one Easter, Thanksgiving, Christmas, Labor Day, Memorial Day, Mother’s Day, and various birthdays in the hospital. Why is that? How does a body know to break down the night before everyone is preparing to gather, just hours after transportation from the nursing home to our home has been confirmed for the next day?

Her quality of life is pretty minimal even when she’s not hospitalized — which is not to say that she does not receive good care, but that her body is bent and bedridden and prone to infection, her mind incrementally fading, her world shrunk to a tiny room. What cancer itself hasn’t destroyed, the medications and treatments have found and diminished. It’s frankly difficult to comprehend her capacity to even endure this long.

There is much tenderness, too. She has bright moments, moments of lucidity and humor. Always a very clever wordsmith, she revels in a good pun, and when she can get her brain to make those connections, on good days, I can see how much joy the world of words still holds for her. She has learned a strange contentment, even on those days when her body feels like a cage, and she often voices gratitude. On the Christmas Eve I spent with her a few years ago, I brought a hymnal, and we sang Christmas carols together. Her voice was shaky and quiet, but there was a mingled comfort in the old familiar songs that wove its way through the sadness and the memories of Christmases past, when her body was whole and she spent hours in her sunny kitchen baking while easy-listening KNXR crooned in the background. In all the loss, she has retained the quiet kindness that was a signature characteristic when I first joined this family 15 years ago.

She was back at the nursing home again by Tuesday, back to her more-or-less baseline. The seasons roll on, the arc of her days drifting downhill.

We have spent so many spring and summer and fall afternoons in Triangle Park in St. Paul. Oh my gosh, so many. My job in all this is relatively easy: I just spend the days and nights with the girls. It would be dishonest to say that I never struggle with selfishness or exhaustion or resentment myself — I do. I wanted Mike to be with us on our daughter’s birthday, not in the hospital. I drove reluctantly in the cold and early dark on that Christmas Eve, even though it wound up holding a certain sweetness. I had envisioned a peaceful night curled up with my family in front of a stoked fire, not a white-washed, fluorescent, cold room and awkward silences and what-do-I-say-now moments. I confess that sometimes I’m relieved to find her sleeping when we arrive, not because I don’t like her — I genuinely do — but because I just don’t know how to fill the silence. I don’t know how to speak anything into this void of drawn-out suffering and unknowing. What can I possibly say that even makes sense?

Mike spends stretched, exhausted, sterile hours at the hospital, often returning after midnight and then heading back in the morning. If it’s a weekend or the girls aren’t in school, we’ll all meet up during the day at the park, take a quick break while Mike waits for test results or while his mom sleeps.

This time, my dad and his wife rolled with everything, watching the girls, re-arranging plans, gamely making the most of a visit that wasn’t supposed to be all about the hospital. But this is the reality of long-term care: the illness is its own vast planet, and those around get pulled into its orbit, its impossible gravitational force. One minute it’s a kid’s 9th birthday, the next, you’re out floating again. And what can you do? It’s no one’s fault. It’s just a sadness that lives there, for everyone, in different ways, and it needs, like all things, to be tended with great care.

I love this park and this city. I love the river views, the stately homes, the huge arching trees. I love its old quiet and easy temperament. It is a peaceful place to lie down when nothing makes any sense and you ache for everyone to be free from this painful repetition and this accumulating loss.

My mom died six years ago, really in a flash. It was such a sudden, gaping loss, a crash through ice into a swift river. Certainly it had a few of its own unsolvable mysteries, questions I held in my hands, turning them over and over again like locked boxes, trying to find answers, or trying to be at peace without answers.

But this is so much different, this disappearance-by-degrees. It is hard to know even how to feel about it all, what to want, what to hope for or pray for. It feels utterly cruel to wish for her to stay and selfish to wish for her to let go. All Mike knows is that he and his mom are both so very tired. There are no good answers. So we lie under the maple tree in Triangle Park, looking up, taking deep breaths. He often drifts off, exhausted, waiting for whatever is next.

Storyteller. Storylistener.

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