Embracing Life’s Lessons: From Caregiver to Patient

If life is all about learning, I’ve just earned my post-doctoral degree following hospitalization. Ouch. I know. Self-serving puns aside, it was a novel experience to be IN bed instead of bed-SIDE.

For the past three decades I’ve been doing preparatory studies by caring for loved ones during their final passage of life. Among them were my husband, mother-in-law, mother, and sisters of my heart. I’ve witnessed the grim effects of stroke, cancer, heart disease, ALS, and simple, intractable aging.

With each passing I came to the same conclusion: I’m not particularly afraid of death, but I’m terrified of the health care industry. It is to be avoided at all costs.

When I made a full frontal landing on a concrete sidewalk nearly three weeks ago, my first thought was a prayer: please, no injuries requiring medical attention. 

“Nothing broken,” I announced cheerfully to the strangers who helped me up. What did I know?! I painfully crawled into an Uber for the short ride to my apartment complex, where a nurse checked my vital signs. I was alive.

“Ambulance,” he suggested.

“Nope,” I countered. “I’ll just ice my (screaming) knee and elbow. I’ll be fine.” An hour later I was on the phone saying, “ambulance.”

Once again I assumed the role of bedside observer, but this time observing myself as patient. I consciously sought a sense of detachment, witnessing my own experience as if I were someone else, watching, not judging.

I was not at all approaching death’s door, yet right there at my side were the beloved ones with whom I’d journeyed in years past. While I thought I was caring for them, they’d actually been teaching me: how to let go, how to accept, how and where to set boundaries, when to laugh, when to cry and grieve, how to bless and move on.

My husband, who died in 2007, has been especially present. A brainstem stroke left him with the unthinkable diagnosis of Locked-In Syndrome: a fully functioning mind “locked” inside a totally paralyzed body, unable to speak or eat. Yet he lived a meaningful life for another fourteen years. His presence is palpable, reminding me how he faced adversity with courage, determination and, most important, patience.

My mother sternly warns, “DON’T!” as I start to pick up a sock that fell on the floor. Mother broke her neck by falling when she stooped to pluck an errant thread from the carpet. She survived, but it was a long, arduous recovery. She ultimately died with cancer.

“Thanks, Mom,” I respond when I hear her voice. “You paid a heavy price to teach me this lesson.” I take the time to retrieve a mechanical grabber and safely pick up the sock.

When my dear friend Sharlene was diagnosed with ALS (Lou Gehrig’s Disease), her wry and playful humor rose to the top. Told the disease is incredibly rare, she declared, “I’m one of the CHOSEN.” She taught me that we are a mixed bag of emotions, all valid. She howled volubly with grief and rage every time the advancing disease robbed her of yet another function: walking, eating, talking.

When she could no longer speak, she typed jokes into her talking laptop and played them for strangers as we rode elevators at the medical center. One delighted passenger suggested she be hired permanently. She rather liked the idea.

With death approaching Sharlene spelled out her final request to me by painstakingly moving her one functional finger across the sheet on her bed: “Mary, write my obit.” I did, but I wish I’d done it better, made it more fun, like her.

I sat for hours with my soul sister, Mary Lou, who in her final weeks often resisted pain-killing but sleep-inducing medication. “I don’t have much life left,” she protested. “I don’t want to sleep through it.” 

Walking the route to humility

Our friendship had begun decades earlier when, as office colleagues, we discovered we both played piano. We began meeting weekly to play duets. Mary Lou insisted on playing “secondo” while I played “primo.” As in dancing, someone has to lead.

Thousands of miles and a multitude of shared adventures later, as Mary Lou lay dying she asked what of her possessions I wanted to inherit. I didn’t have to think about it.

“Your humility,” I quickly answered, humility not being one of my stronger suits. She had it in abundance, along with joy, grace, and a delicious sense of irony. Mary Lou shows up all the time now, her musical chuckle echoing in my ear at every pride-punching, ego-deflating event in my life.

“This is what you asked for,” she reminds me.

Appropriately humbled, I’m returning home today after two weeks in a hospital and four days of rehab. Therapy will continue at home. I’ll be aided by a walker, a leg brace, and many well-wishers from whom a river of prayer has flowed.

Healing is not a solo venture. If we think it is, we deceive ourselves. If it were up to just me, I could not, would not fully heal. Lesson learned.

2 thoughts on “Embracing Life’s Lessons: From Caregiver to Patient

  1. Kathleen McCarthy's avatar Kathleen McCarthy

    Hi Mary,
    Congratulations on your return home, and thanks for your life- and spirit-affirming accounts of those who have traveled with you since the fall.
    And remember: the sock can be perfectly happy on the floor!
    Best wishes,
    Kathy

    Get Outlook for iOShttps://aka.ms/o0ukef


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  2. Karen DEBauche's avatar Karen DEBauche

    Yay for going home! Take help! You’ll know when it’s time to be more independent! Listen to the voices of wisdom! Prayers for quick recovery!

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