Care Dimensions: My Life in the Balance

Voices of Care

My Life in the Balance

Posted on February 28, 2017 by Barrie Levine

During the two tough years of my husband’s illness, I lost my balance. Every consideration in my life was laser-focused on his well-being. I never doubted the vital importance of my full-time role as a caregiver; in fact, I considered it a gift to accompany my husband as I always had in our marriage, this time (sadly) on the journey to the end of his life. He would have done exactly the same for me. In his acceptance of me as his caregiver, I felt his ultimate trust in me as his life's partner.
Barrie Levine donates book to Care Dimensions' Ellen Frankel at Kaplan Family Hospice House Barrie Levine (right) presents Paths to Wholeness: Fifty-Two Flower Mandalas to Care Dimensions Bereavement Counselor Ellen Frankel at the Kaplan Family Hospice House Library. Barrie donated the book in loving memory of her husband, Paul Joseph Levine, who died at the Kaplan House in December 2013.
In the trio of action, necessity, and balance, the immediate casualty was balance. I let go of everything that was unconnected to the mission at hand. Nothing else mattered, no one else’s needs, certainly not mine. I was intent on doing everything humanly possible to keep my husband out of a nursing home where he would, I feared, be heavily drugged or restrained to manage his unpredictable behavior. My support system of compassionate friends and family made this possible. I drew upon every ounce of my strength to be patient, loving, and physically strong, and to keep him oriented, safe, and calm. As his condition worsened, my efforts became futile; dangerous times began in earnest.

When my beloved husband died at the Care Dimensions Kaplan Family Hospice House on December 2013, I lost my bearings. My life-long career was in shambles. My husband’s beauty salon was shut down. My elderly mom was in a nursing home. Many of the sympathetic mourners got on with their lives, assumed I was doing the same, and checked in less frequently. I couldn’t fall asleep before 2 a.m., but woke up at dawn nevertheless. My adult children needed me to recall memories of our family life together to help them heal; buckets of tears always accompanied the telling. I attended bereavement meetings where the participants bonded in shock and pain. My everyday life did not seem real to me. I felt as if I had died too and had entered a world that made no sense at all.

Yet, I wanted to find a reason to get up every day. I didn’t know exactly what that reason could be. And if I got up, I had to stand steadily on two feet. At first it was intentional every step of the way: swing my legs out of the bed and on to the floor; stand up straight; eat a decent breakfast; walk out the door, even if I had to shovel the walk. But, where in the world to go? I thought of the Senior Center in the next town where I had attended a weekly Caregivers Support Group. In those two years, I sometimes peeked into the gym to watch the exercise class in progress. This time I walked in.

I took a place in the back row and followed the instructor’s directions robotically: “Stand on one leg, focus on something in the room, anything that’s not moving, let go of the chair. Switch legs and repeat. Hold on to the chair for safety, if needed.” My body moved, but my heart and mind were numb. I told myself, “You don’t need to focus laser-like on the needs of another human being for 703 days and nights. Just focus on ONE SIMPLE THING. Stay with it at all costs. Finish the class. Then leave.” After a few weeks, I noticed voices of classmates directed at me: “Hi, how’s it going? Do you like the class? You’re new here, welcome.” I responded politely, shared the morning experience, then ventured to ask others how they were doing in return. My flexibility and balance started to improve, once I paid attention more mindfully to the moves and stances.

When balancing on one leg, I realized that my muscles were not just holding a position stiffly but were in constant internal, and what felt like, dynamic movement, making split-second ongoing changes to accommodate my position. If one foot was in tandem with the other, both legs worked actively in unison to achieve stability. If I closed my eyes as directed, considerable inner focus was required to maintain steadiness. Not counting the days or the weeks as the winter moved on, I realized to my surprise that I did not have to hold onto the back of the chair anymore for dear life. I figured out that balance did not just mean “standing still and not falling.” My balance was a force within me. If it kept changing, I would change, and my life would change, too.

Barrie Levine book donation to Care Dimensions Kaplan Family Hospice House in memory of husband Paul Joseph LevineIn the spring of 2014, I visited my son and his family in Israel for a month. The years of caregiving and months of intense grief had left me profoundly exhausted. I slept in a single bed in a single room with a single window overlooking the side of a steep and stony hill. If I ever envisioned what a physical place of healing looked like, this would be it.

When I returned home and to the exercise class, various people came up to me to ask, “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 dozen in the class. These were people who did not know my husband or me, the suffering of his last two years, or the journey that was in store for me, grieving a husband in one year and losing my mother the next year. The many sincere expressions of concern for me, a newcomer, from new people in my new life, felt like blessings washing over me, freely and generously. Like A Streetcar Named Desire's Blanche Dubois, I was open to admitting that, “I have always depended on the kindness of strangers.” Moved to tears, I fled to the ladies’ room and wept, this time not for my husband, but for me.

Care Dimensions offers numerous grief support programs. Check out the bereavement calendar for offerings in Greater Boston and the North Shore. In addition, "Writing from the Heart of Grief, Part I" will be offered from 5 to 7 p.m. on Tuesdays, April 4 - May 9. For more information or to register, contact Mary West, 978-223-9737.

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Since 1978, Care Dimensions has provided comprehensive and compassionate care for individuals and families dealing with life-threatening illnesses. As the non-profit leader in advanced illness care, we offer services in more than 95 communities in Eastern Massachusetts.