Caring for the Caregiver

September is National Senior Center Month. I write this with appreciation for the support I received at the Beverly Council on Aging over the past five years:

When we sold the family homestead and downsized to a ranch house in Wenham (2003), I was not quite sixty years old. I didn’t identify myself as a senior citizen, although I was married to one, my husband Paul being nearly nine years older. I drove by the Beverly Senior Center countless times on my commute to my law office in downtown Salem but only stopped in for my annual flu shot.

I’ve been a senior before — Linden High School class of ’62, Douglass College class of ’66. It took fifty years, but now I’m a senior again!

A SENIOR IN THE 1960s

In 2011, my mom Rose suffered an injury requiring surgery and entered a rehab facility. Tough choices presented themselves, all involving leaving her apartment in a Revere senior citizens complex where she had lived with her companion Eli. Trying to understand the many moving parts of the medical, financial, legal, and institutional elder care system was a job in itself. I figured it would be helpful to join the caregiver support group at the senior center and stop in occasionally for meetings on my way to the office.

The value of sharing information and experiences, and most importantly, the company and compassion of other caregivers, was a revelation to me. And, supporting others took my mind off my own situation. As the only surviving child, I was responsible for decisions for my mom from the everyday to the life-altering.

Yet, becoming the primary caregiver for my beautiful mother was a privilege in my life which I will always remember with gratitude. There were moments that surprised me — and lifted my heart — even as mom’s memory dimmed, like the evening I walked into the dining room and mom announced loud and clear to all, “I want you to meet my daughter Barrie!”

By early 2012, I felt good about my mom’s adjustment to her changed conditions, although I was never completely comfortable with the institutional setting. However, her safety was at stake, taking the choice factor out of the equation. My friends in the group well understood the dilemmas of the caregiver on the front lines as no one else could. When mom settled into a pleasant routine, I was at peace with my decision. We became closer, now that the uncertainty was over.

ROSE ON HER 95TH BIRTHDAY (December 2010, before her accident)

I concluded that my caregiving involvement was manageable and left the group. I was terribly wrong……

In early 2012, my husband struggled to find words for common objects (such as foods) that come up in everyday conversation. This frustrated him to no end but I brushed it off as a normal sign of aging. Upon examination, his primary care physician expressed a level of concern that frightened me. Neurological tests confirmed a diagnosis of a severe, progressive form of dementia (not Alzheimer’s) for which there was no alleviation or cure.

I carefully monitored Paul from then on, supporting him in his daily interactions with others, in his hairdressing salon, then in his daily functions as his struggles increased.

I asked the leader of the caregivers group if I could return.

On the way to meetings, I passed by the large function room and peered in at the morning exercise class. The participants had a life, a routine, doing something good for themselves. This was not for me; I had to return home promptly, before the call from our son that his Dad needed me right then and there.

I drew upon every ounce of my strength to be patient, loving, and physically strong, and to keep my husband oriented, safe, and calm. In his acceptance of me as his caregiver, I felt his ultimate trust in me as his life’s partner. As his condition worsened, my efforts became futile; dangerous times began in earnest. In November 2013, when he tried to exit our moving vehicle on Route 128, the inevitable crisis I had hoped to delay finally made itself known.

My dear husband of forty-one years died in hospice the next month, on December 4th. A funeral, a burial, sitting shiva (seven days of mourning in Jewish tradition), bleak winter days, sleepless nights, our grieving children, the financial and legal paperwork that burden the bereaved, the vivid memories of my husband’s life coming to a close — it was all too much to bear.

Yet, I wanted to find a reason to get up everyday, eat a decent breakfast, and walk out the door, even if I had to shovel the snow. But, where in the world to go? What came to mind, in the midst of shock and loss, was the senior center where I had looked in at the exercise class.

This time I walked in. I took a place in the back row. My body moved, but my heart and mind were numb. I told myself, “Just stay in the moment. Take it one step at a time. Finish the class today, don’t think about the next day.” I knew this was important to do for myself, but I wasn’t sure why.

After awhile, I heard voices of greeting directed at me: “Hi, how’s it going, do you like the class, you’re new here, welcome.” I responded politely, but after some weeks passed, I started to ask others how they were in return.

In spring of 2014, I visited my son and his family in Israel for a month. Three years of caregiving for both my mom and my husband, followed by months of intense grief, left me depleted. I slept on a single bed in a small room with a single window overlooking the side of a steep desert hill. If ever I envisioned what a physical place of healing looked like, this would be it.

VIEW FROM MY ROOM IN MY SON’S RELIGIOUS COMMUNITY NEAR JERUSALEM

When I returned home and to the exercise class, many came up to me to ask, “Barrie, are you okay, where have you been, were you sick, we missed you, good to see you again.” I didn’t know their names yet; there were several dozens in the class. The many sincere expressions of concern for me, a newcomer, from new people in my changing life, felt like blessings washing over me freely and generously. I felt better, finally.

Visiting my mom daily at the nursing home was a comfort to me. She formed a friendship with another sweet lady, Claire, and they looked forward to my homemade banana bread. The last ten months of my mother’s life were serene, a prelude to paradise.

After she died, I felt her strong and loving message to me, “Dearest daughter, do not double down on grief. Take my positive outlook and love for people, your most valuable inheritance, and move forward with joy, not sadness.”

Through all of this, I began to write — starting with my husband’s eulogy — then in the hospice bereavement group (“Writing from the Heart of Grief”). I wrote extensively in my legal career but never thought of myself as particularly creative. I joined a local writer’s workshop, continuing to write about grief and healing but expanding to nostalgia and memoir pieces. Ray Whittier, the “poet laureate” at the senior center, conducted an open mic session on occasion, so I tried my pen at poetry too.

Of the many cultural, recreational, and personal improvement programs on the agenda, I noticed that my senior center did not presently offer a writing course. They accepted my proposal for an eight session writing group. I recognize with gratitude that this opportunity — more than three years after losing Paul and Rose — was yet another source of healing.

I walked through the front door on the first day of class, holding my materials in a loose-leaf binder and dressed in slacks and a jacket (instead of exercise tights and sneakers). I felt like a whole person again. Not sad or overwhelmed, but hopeful, productive, engaged in life.

When I enter the conference room along with eight senior writers, we bring our diverse life experience and love of written expression to the table. Over time, I sense the new confidence and take pride in the developing skills of the participants, and most impressively, their willingness to explore new creative endeavors at this time in their lives — short stories, personal narratives, memoir, travelogues, poetry (including haiku), and film scripts.

I’ve convinced a number of particiants to compose poetry and read for Ray’s open mic — and I couldn’t be prouder of their openness to new forms of expression and, in this case, performance art!

I think of how I faced a devastating challenge to life as I knew it, how the kindness of strangers brought me back from despair, how I rebuilt my life step-by-step, and how I became open to joy once more.

And it happened in this place.