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Ellen LaFleche: Taken too soon, at 65: My husband John Clobridge’s final days with ALS

  • COURTESY OF ELLEN LEFLECHE<br/>John Clobridge with his grandson, Jackson, shortly before the Northampton died of ALS.

    COURTESY OF ELLEN LEFLECHE
    John Clobridge with his grandson, Jackson, shortly before the Northampton died of ALS.

  • COURTESY OF ELLEN LEFLECHE<br/>John Clobridge with his grandson, Jackson, shortly before the Northampton died of ALS.

    COURTESY OF ELLEN LEFLECHE
    John Clobridge with his grandson, Jackson, shortly before the Northampton died of ALS.

  • COURTESY OF ELLEN LEFLECHE<br/>John Clobridge with his grandson, Jackson, shortly before the Northampton died of ALS.
  • COURTESY OF ELLEN LEFLECHE<br/>John Clobridge with his grandson, Jackson, shortly before the Northampton died of ALS.

EDITOR’S NOTE: In this essay, Ellen LaFleche of Northampton describes the final months in the life of her late husband, John Clobridge.

Clobridge, who for 23 years directed the Amherst Senior Center, died Jan. 16 — just two months after learning he suffered from ALS, known best as Lou Gehrig’s disease.

LaFleche says that after all his years helping elders, her husband had looked forward to growing “old old.”

As she writes today, “He’d always looked forward to growing old, believing that the challenges of aging could be met with grace and growth.”

LaFleche says she wrote this essay in part because she wants to help families facing chronic illness and aging. She expected to cry her way through the tale, but found the experience of writing helpful. “It just put me into a healing place,” she said this week.

As he prepared to walk our daughter Celine down the aisle, my husband couldn’t fasten his cuffs or button his shirt. Chalking up his clumsiness to nervousness, and knowing that all eyes would be on the bride, John made a slightly disheveled march to the altar with joy on his face.

After the wedding, John tried to hide the continuing deterioration of his fine motor skills. He didn’t want to worry me, knowing from 30 years of marriage that my default emotion is anxiety. He switched from button-down shirts to sweatshirts. He sat in the dark, claiming headaches rather than admitting he couldn’t turn on the lamp.

We rushed into the maternity ward of Worcester Memorial Hospital. Our new grandson Jackson, swaddled in a blue blanket, waited to be cradled in our arms. A few feet from the room, John lost his balance, falling hard on his back. A surreal moment — instead of cuddling his first grandchild, John found himself strapped to a gurney, riding the elevator to the emergency room.

Many medical appointments ensued. John suffered brutalizing fatigue and sometimes slurred his words. Bizarre muscle movements rippled through his thighs. Known as fasciculations, these twitches looked like worms tunneling under his skin. Aware that fasciculations can be a symptom of ALS, also known as Lou Gehrig’s disease, I braced myself for bad news.

After a battery of nerve conduction tests, Springfield neurologist Emilio Melchionna diagnosed ALS. John’s voluntary muscles – including those of his respiratory system – would continue to die. The end result would be complete paralysis.

Denial shielded John from the terror of this dread disease. He retreated into silence, calmly carrying on with life. I desperately wanted to talk about my fears, but knew I needed to give him the merciful comfort of his denial.

By early December, John was ready to face his new reality. He started with jokes. “I’m a loyal Red Sox fan,” he quipped. “I don’t want a disease named after a Yankee.” In spite of the crisis — or because of it — these were the richest weeks of our marriage. We started a ritual. Every evening we turned off the news and shared how we were feeling physically, emotionally, spiritually. Sometimes these talks devolved into trivial concerns, but many evenings we drilled deeply into our feelings. How would we care for our daughter’s emotional needs? What would happen if John lost his ability to speak? As a man who loved words, could he withstand not being able to communicate? Could we psychologically handle the end stage, which John described as “being pinned down and unable to breathe?”

We drew on the knowledge John garnered during his career in elder services, which included several decades as director of the Amherst Senior Center. His philosophy centered on lifelong learning and growth. He’d always looked forward to growing old, believing that the challenges of aging could be met with grace and growth. He was 65 and regretted losing the chance to grow “old old,” and expressed copious sorrow that he would not be able to give Jackson grandfatherly guidance and love.

We visited the ALS clinic at UMass Medical in Worcester for a second opinion. Dr. Colin Quinn confirmed the diagnosis and estimated that John would be his patient for a year, maybe more. John was now walking with a cane, and could barely grasp a pen or fork. He was experiencing shortness of breath with mild exertion and losing more than a pound a week.

During our nightly conversation, John said, “I don’t want to die too soon, and I don’t want to die too late.” Too late meant being “pinned down,” and “locked in,” phrases he used repeatedly. He made it clear he didn’t want a permanent tracheotomy or ventilator for late-stage respiratory failure.

John was visiting our daughter in Worcester when his heart stopped. It is unclear whether this cardiac event was related to his ALS, although experts are now beginning to see ALS as a metabolic disease with possible systemwide effects. John was rushed to the UMass Medical Center emergency room, where a temporary pacemaker was implanted.

The next day he had surgery for a permanent pacemaker. He was so weak he could barely lift his arms. With a tube in his throat, he communicated with a weak thumbs-up or thumbs-down gesture. Dr. Quinn visited him daily in the ICU, expressing hopes that John would recover most of his previous level of function and with luck would enjoy several months of quality life.

For unknown reasons, the stress of the cardiac event caused John’s ALS to progress with warp speed. Within days he lost the ability to speak and swallow. He developed pneumonia. Antibiotics cleared his lungs but the pneumonia came roaring back. His lung function steadily declined and he was transferred to the Pulmonary ICU. Doctors said he would need a permanent tracheotomy to survive.

John vehemently shook his head. No tracheotomy or permanent ventilator.

We brought noisemakers and glittered-covered tiaras to the hospital for an impromptu New Year’s Day party. In the midst of our revelry, a chaplain walked into the room, followed by a gathering of doctors. Hoping to lighten the mood, John’s cardiologist tried on a tiara. As he discussed the need for John to enter hospice care, glitter from the tiara sparkled eerily on the cardiologist’s forehead and cheeks. The chaplain asked if John knew what hospice care entailed. John nodded; he’d spent many years on the board of our local hospice, and had visited many dying elders in their homes.

The chaplain said it was now time for John to receive some of the services he had so tenderly rendered in the past.

He knew he’d come home to Northampton to die, but John gave a thumbs-up as he was carried into his favorite room. Our daughter Celine and her husband Jeremy set up camp in the sickroom. Five-month-old Jackson brought joy to the sorrowful task of caring for our dying loved one.

A kind of deep knowledge filled John’s eyes. He’d always promoted lifelong learning as part of aging. And now, he understood there comes a time when the learning must end.

I’d always thought of home hospice as taking place in a dim room with scented candles, flute music and the soothing, oceanic hiss of oxygen. While we provided many of those quiet moments, including a session with a local harpist, a lot of boisterous life took place.

Phones rang, the baby cried, we searched for the remote control, we bickered under the strain of sleeplessness. I hope that John, drifting in and out of consciousness, enjoyed the authenticity of those real-life moments.

Minutes after his hospice nurse arrived to check on him, John stopped breathing. His death wasn’t beautiful or mystical or particularly dignified. It just was. John looked calm. His 80-pound weight loss had revealed high, bladed cheekbones that contrasted with the slack softening of his mouth. As the undertaker wheeled him away, I bid goodbye with the ancient Navajo saying. In beauty it is finished.

Ellen LaFleche is a writer and editor who lives in Northampton.

Thanks, Ellen, for including all of us in these heartbreaking, elegantly told moments. What words can follow such a writing? My heart to yours.

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