Four Ways to Care

TAKING A BREAK IN FRESH AIR

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I look back with longing to the time when my mother Rose and my husband Paul were here with me. I recall with gratitude the blessings they brought to my life—the honor of caring for my beautiful mom as she had cared for me, and the privilege of accompanying my husband every step of the way in the struggles that brought him to the end of his life. Both are gone now, victims of dementia illnesses—Paul in December 2013, and Rose ten months later.

My life changed dramatically as one loss mercilessly followed the other. In place of caregiving day-to-day, I became the guardian of their memory.

I joyously shared the story of my parents’ courtship in the Catskills in the 1940s (Weather Report: Chance of Clearing). I remember more recent times when my mom, in her late nineties, looked at me with her warm brown eyes as she sang Yiddish songs that I played for her on my iPod.

As Paul’s wife of forty-one years, I alone hold the keys and guard the treasure of the days, years, and decades we shared.

After recovering the shattered parts of me—the broken heart—and finding new parts of me—resilience—I try not to be too hard on myself.

This was a journey like no other; there is no point in second-guessing the decisions I struggled with and had to make for my mother and my husband.

Now it is my turn to care for myself. I began to rebuild my life in the aftermath of loss, just as Paul and Rose would have wanted me to.

What helped me most to make it through the caregiving years?

🌱 First, by accepting caregiving for my mother as a gift.

I, her sole surviving child, protected her as she did unconditionally for me when I was in her care.

We became closer as I met my mom in her own changing world, rather than pressuring her to understand beyond it by explaining or correcting her. She was fully present and at her best when we met on her turf.

I am so proud of my mom for digging deep and nurturing me to the very last day of her life at the age of nearly 99. She retained her essential sweetness and loving nature, a joy for me and all those around her.

This was far more important than for her to know what day it was, remember names or places, or sit in a group with an organized craft activity.

My son, a rabbi in Israel, explained that his Grandma Rose’s soul was so elevated that God did not need her to understand such things anymore.

☘ Second, by looking at caregiving for my husband as a treasured time between us along the continuum of our married life.

This was our last opportunity for one-on-one focus, a fulfillment of our love for each other as lifelong partners.

Despite his impairments, I understood who he was and exactly what he was trying to tell me. I closed my law office to take on his care, along with our son, two familiar people in his life when strangers caused alarm and distress.

No amount of care I gave him could possibly repay what he did for me as he nurtured our family over the years and made me feel like the most treasured woman on the planet.

Thankfully, our son Ari lived with us and became a caregiver too, allowing me to keep my husband safely at home instead of in a facility, my greatest fear, where I was certain he would be drugged and restrained.

My mom was already in a nursing home. I could not grasp that my husband might be next.

🌿 Next, I toughened up.

I learned to cancel plans or change appointments without hesitation or excuse in the daily service of safety, crisis, or exhaustion. The good people in our lives understand this.

The word “plan” has a different definition in the vocabulary of the caregiver — it’s what we carry out when the stars are perfectly aligned, about as common an occurrence as a solar eclipse.

🌾 Finally, by honoring and supporting other caregivers — my new community.

When witnessing the needs of others in similar circumstances, I felt a temporary lightening of my own burdens. This happened in my caregivers’ support group, where patient listening and understanding created bonds of trust and compassion.

Caregivers cannot always “take care of themselves,” the advice they hear frequently and listen to with disbelief. Caring for the caregiver in thoughtful ways, and being sensitive to their plight, is what you can give.

I honor caregivers for being role models for their families and the community-at-large, contributing to a more humane society.

Dear Caregivers, whether friends or family, workers or volunteers, or those in committed careers, I entered our community without a roadmap, because none exists. After a while, I stopped the endless researching of internet sites and began to trust my heart. This gave me courage and clarity for each day, and for the long haul.

Then, I was able to give Rose and Paul what they really wanted from me—my time and attention, a loving touch, a focused presence, a comforting voice, a shared meal, a song, a story— the simple pleasures that we all appreciate whether giving or receiving them.

I have never met a caregiver who harbored any regrets for what they did.

“Talking to you, wife,
my words escape to thin air.
Yet, you pounce on them for me,
woman warrior.”

by Barrie Levine

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**Cover photo courtesy of Jan Melanson Merrithew