None of us knew in October 1987 when my father went into the hospital just before dawn that he would never come home.
He’d been on a Fall foliage ride into the New England countryside with my mother earlier that day. Me? I certainly wasn’t prepared for the five long, gray months that would follow. I’m glad he got to see Vermont’s dazzling palette before his world went dark.
When Dad got sick I was 37, married, had a two year old-daughter and my wife was carrying our second child due the following April. This experience was my first of life in the sandwich generation: poised between raising children and caring for aging parents.
One day, when Dad was stable, the trache tube in his neck connected to the ventilator that both prevented him from talking as it was keeping him alive, I was standing by his bed, a pad and pen in hand. Dad had been thrilled we were expecting another baby. When he pointed to my wife’s rounded belly, I handed him the pen, holding the pad for him as he wrote in a shaky hand, “Boy?” We all blinked back tears.
We didn’t know but Dad did—his grandson was on the way here as he was on the way there. Generations passing through the long tunnel of life. And death.
I mark that time as the beginning of my thinking about caregiving and caretaking. It was a time my mother and I drew closer, her talking more deeply with me and more personally in those five months than she’d done in the decades before.
A lot of changes happened on the surface as more subtle ones were beginning to stir below.
Mom got long term care insurance after Dad died so there would be funds to help her weather at the apartment she moved to, in an assisted living facility or a nursing home. She wanted to make sure my brother and I knew she had a plan when she got older. I’ve always thanked her for that. Of course, in my late thirties with two small children, back then—a quarter century ago now—I wasn’t thinking about the toll of caring for an elderly parent would take on me emotionally. Going through my father’s dying, I had her; she was in first position. I didn’t think about what would happen when the second parent is dying. And, unlike my father, her decline was more gradual, most pronounced only when she had a leg amputated because of complications from diabetes. Her circle of friends were there as a solid cohort, some going back to junior high. Still, her world began to shrink when she couldn’t keep up on their outings, using a walker to help her balance her prosthetic leg. She was often exhausted when she got home and eventually stopped going out with friends.
My brother was living in the same town and when Mom moved into an assisted living center, he was an unofficial family caregiver, showing up frequently each week and slowly, joining the aides in helping her with life’s daily chores. Her brother, my uncle, was also on the scene a lot, moving back east from Arizona to see my children grow up and be there for the older sister to whom he was so devoted. Me, I was regularly driving the 45 minutes from my house in the western Massachusetts countryside down to her apartment, usually with her beloved grandchildren in tow. I tried not to feel the pressure on me as the “peanut butter” in the sandwich generation I was living. Indeed, I reframed my experience as being the hub of a bicycle wheel that held many spokes. Still, from managing her finances to making lunches for the kids, that time often felt like a blur.
As Mom declined and was on the verge of being asked to leave the assisted living facility because she was requiring more and more care, my brother moved in and that forestalled the move to a nursing home. Soon, though, it became clear her “good” leg was going to need to be amputated. Some administrator with the compassion of a rock explained how at the nursing home they had a contraption to hoist “people like you who’ve lost their legs” in and out of bed. Mom wanted none of that.
Did I have time to weep? Did I have time to feel? Did I have time to listen to my heart—or hers? Barely.
How clearly I heard, and felt, and wept, depended on how much sleep I’d gotten, whether or not I managed to squeeze in a racquetball game before work, and whether I ate something besides a blueberry muffin for breakfast.
We live in a culture that undermines our highest intentions to feel, connect, be. The turned-on-its-head joke in the meditation magazines, “Don’t just do something, sit there” brought a wry smile to my face when I first read it back then. I loved how true it rang, even in the face of all I was carrying.
Somehow we muddled through. Mom, I’m convinced, orchestrated the end as soon as the irrevocable pronouncement that she’d have to move to the nursing home was made. Her inner workings were so fragile at this point, she was like a fine Swiss watch where if everything wasn’t in perfect balance, it would stop working and time would literally stand still.
A couple days later she was admitted to the hospital.
I saw her nearly every day, driving down before work or just after. One morning she was going for tests and her hospital bed had been lowered as she was prepared for transport. I stood next to her talking and she squeezed my hand and told me she loved me. I squeezed back and said, me, too. We locked eyes and smiled, blinking back tears. The orderly came and I walked out with them, our hands still entwined. Then, they were gone.
The next morning her cardiologist called me at home, early. “You better come now,” was all he said.
It’s been nine years and I don’t know how to succinctly express my state of body-mind-heart around how Mom’s final years were. I’m grateful to my brother and my uncle—whose story of end-of-life I’ll save for another day. We could have done a better job of talking though our experiences as the sons and brother, sharing the burden of caregiving. Maybe if we had been women we might have. As men, we lacked the training, the modeling of getting inside our feelings and sharing the strain, the struggle, the heartache, the feelings of loss. Still, who, in this 24/7 culture of consumption, has time for feelings?