Articles & Guides
What can we help you find?

Juggling my mom’s end of life care while raising my sons was brutal, but what I’m left with is love

Juggling my mom’s end of life care while raising my sons was brutal, but what I’m left with is love

I steered the car through the neighborhood and along the 1.5-mile road that bridged my mother’s house from mine, and the tears flowed, like high waters whooshing over a levee. I released what I had been holding back to be strong for my mother but wanted to stop crying before I walked through the front door and returned to my sons. I wiped my red eyes with my palm and felt the heat on my flushed cheeks. My boys, who are barometers of my mood, would immediately detect these telltale signs. 

As a single parent of two perceptive teens, I did not hide my sadness of caring for my mother whose health was on a sharp decline. Yet I still wished to shield them from the depths of the daily distress so they could focus on their own young lives. 

Meanwhile, like the saltwater taffy we buy at the Jersey shore, I stretched to care for mom as she dealt with a continuing assault from ovarian cancer and grief from the recent death of my father. 

My father, who shouldered most of my mother’s care for several years, experienced a rapid onslaught of health issues and had passed months before. Mom, a friendly and gentle spirit, had provided us with unconditional love our entire lives, and my siblings and I stepped in to fill Dad’s place as best we could. But we were facing a terminal cancer diagnosis. 

In the absence of a solution, we took steps to ease her pain and listen to her wish to remain in her home. This had been a priority for both her and my father, who resided in their home —my childhood home — for 46 years. My sisters and I interviewed and hired caregivers to help as we created a patchwork of support for Mom. Like air traffic controllers, we then coordinated her care with a complex calendar of alternating shifts between family members and caregivers. Often on weekends, my sisters and I descended on the house where my brother-in-law lovingly cooked us meals with locally sourced fresh produce. Taking shifts we each visited with mom chatting while clipping and filing her fingernails or applying lotion to her dry skin. Meanwhile, the others ran errands, paid bills, folded the wash and refilled her pill organizer with the next week’s worth of medicine. 

While Mom preferred to be surrounded by family, family alone could not stay with her around the clock. As the cancer worsened she needed assistance to bathe and to empty or change the bag on her catheter.  Of all of us siblings, I lived the closest to Mom. But as a single parent, I extended myself to meet the needs of my sons, manage my household, commute two hours a day to a job that supported my family of three, and spend time with my mother in her home. I stretched and stretched some more. I wrote her bills and picked up groceries, and together, Mom and I made simple meals she did not feel like eating. Instead, she glided the fork around her plate, shifting the contents of the meal. Chemo had killed the joy of flavors.

Many nights, as I arrived home later in the evening, the boys looked up from doing homework or watching TV, scanned my face and asked about their grandmother. Concern flickered in their eyes as they took in the strain on my face or the way I sagged a bit instead of standing up straight. They would come over to hug me and one or the other cracked a silly joke that spurred ripples of laughter. They devised their own system for getting places, walking home from school after practice, arranging rides or hanging with a favorite teacher after school until I could get them. They did not complain that I missed a track meet or could not make them dinner some nights. 

Without saying a word, I knew they understood the intricate balance of my daily responsibilities coupled with their grandmother’s care. The effort to keep this in motion revealed to them who I am as a woman, a daughter and a mother. It made visible my commitment to the person who raised me and cared for me with kindness and unwavering support from my earliest childhood days up through to my recent divorce. 

“What can we do to help?” my oldest son asked. 

“You can visit on the weekend,” I said. “Just being with you both makes her happy.”

When I visited, I helped her straighten up the house. Clear in mind but weaker in her body, she was determined that all things remain in order: the floor vacuumed, the countertops wiped down and clear, the checkbook balanced, no dirty dishes in the sink, no crumbs on the kitchen floor. One day after things were tidied, she settled on the sofa, and I covered her with her American flag fleece blanket. Constantly cold, she also had become so quiet whereas she used to be gregarious and buoyant. I held her soft hand and kissed the top of her head. Her hair had grown back straight and fine instead of wavy after three rounds of chemotherapy. She looked off into the distance of the backyard through the sliding glass door for a few moments and then back to me. Her brown eyes appeared large behind her glasses. 

“It’s as if all the love I have ever given is coming back to me with all of you caring for me so kindly. Thank you,” she said with a shake of her head and a sigh.

I blinked rapidly, at once happy and sad that she felt the love we had spun to cocoon her. When we asked her what she needed or where she wanted to go, she explained there was no place, nothing she needed. “When you don’t have your health, all the other things don’t matter much.”

The dissolution of my mother’s health after many good years took time to process. A lifelong lover of music, she spurned dancing and singing to her favorite CDs or watching television. She refused guests outside of family and instead spent time sitting on the sofa and thinking far away thoughts. I learned that while I could not fix her health problems, I could sit with her. I could remain by her side to help her walk the shadowed unknown path and ease the way, if only just a little. My children saw that I sometimes stretched too far and melted down, but then I rested and began again. As a family, we tightly banded together to help Mom, taking turns when one of us was too exhausted, frustrated or angry with these cruel circumstances. 

Caring for aging parents has been a wise and sometimes stern teacher. It has demonstrated to my sons and me that our lives continue while others are on the downslope. This experience has also shown us the meaning of perspective, the gift of health and the importance of caring for our bodies. Enduring these struggles also has helped us focus on relationships and experiences rather than material things. Finally, these tenuous times have opened us to conversations on how we want to live and how we want to die. It has taught us to be present, enjoy each other each day and strive for our heart’s desire because we are only here for a limited time. 

Being open and honest with the boys about my emotions as I balanced caregiving and motherhood allowed them to more easily share their feelings while also lending support. The way they looked after me with kindness and compassion is a reminder of how Mom’s love lives on.  

Lisa B. Samalonis is a writer and editor from New Jersey. She frequently writes on parenting and health topics and has published articles and essays in many publications including ShapeGrown&Flown, and The Philadelphia Inquirer, among others. She is at work on a memoir about life as a single parent with her sons.