11.20.18

Cancer Caregivers: A Child Perspective Part 2

As children, it is the adults in our lives who have taken care of us:

  • Bandaged cuts, kissed bruises, and soothed aching hearts.
  • Provided for our basic needs: clothing, food, and shelter.
  • Worried endlessly about our health, our happiness, and what we would make of ourselves someday.

What happens then, when the tables are turned and you – as a child – are now a caregiver for your parent who has cancer? In Part 1 of this blog, we explored what the experience is like for young children (through high school age). Today, join us as we explore what happens when you are a young adult or an adult with a parent undergoing cancer treatment.

Young Adults
When their mom was diagnosed with cancer, sisters Carolyn*, Elena*, and Sarah* were 19, 23, and 26 respectively. Each at different places in their young adult lives: Carolyn had just returned home after her first year of college; Elena and Sarah were working full time; and Sarah was pregnant with the second grandchild—Maren*, whom their mom was looking forward to caring for during Maren’s first year, allowing Sarah to go back to work knowing her baby was getting the best possible care from “Grandma.”

Their mom’s diagnosed had a profound impact on each of their lives. Carolyn was in the kitchen making breakfast when she overheard her mom in the next room receive the call about her diagnosis. “I assumed the worst, because my Grandma died of breast cancer,” Carolyn admits. “It was scary and stressful.” Carolyn wanted to stay home from college that fall to help take care of her mom. Elena was taken aback when Carolyn offered to do this. “I was so surprised and inspired by her sacrifice, even though my mom wouldn’t have let her do that,” she remarks.

Elena reduced her work hours to share – with her Dad – the responsibility of taking care of Maren and taking her mom to appointments, chemotherapy, and surgeries while older sister Sarah continued to work full-time. “I struggled with having mom watch Maren during her surgeries and treatments, but I didn’t want to take this away from her, too, when she wanted so much to do it,” shares Sarah.

This was an especially difficult time for Sarah, who wasn’t able to help as much as she wanted, “I was a sleep-deprived mom of a newborn and 2 year old. I didn’t want my (older child) to hurt my mom by jumping in her lap and cuddling with her after her surgeries or risk getting her sick during chemotherapy.”

Each of the sisters agree that the experience brought their family even closer together. “My mom is Wonderwoman,” Carolyn proudly admits.

Adults
“I was working full time and trying to drive 30 miles every afternoon and on weekends to take care of my dad whose prostate cancer had metastasized,” begins Debbie whose mom was starting chemo for Stage IV Lymphoma at the same time. “My mom couldn’t take care of them both and I was doing things for my Dad that, really, no daughter should be doing. We had to move him to hospice care,” she admits.

As an adult caregiver, Debbie found that “it was extremely challenging to keep my head on right while working full time, maintaining my home life, and trying to stay healthy while getting very little sleep, eating very poorly, and putting most of my relationships on hold.”

Debbie’s sister, Susan, agrees, adding that she felt incredibly guilty during this time: guilty at work when she took time off to go to medical appointment with her parents and spend time with them, and guilty when she was at work that she wasn’t able to be with her parents. As a nurse in the same hospital they were often at for treatment and care, she would “visit them before work, during break, at lunch, then after work.” In retrospect, Susan wonders, “How the hell did I do all that?”

While caregiving wasn’t easy, at times her parents unknowingly made it more difficult. “Mom was fiercely independent and didn’t want to be a burden to us. She didn’t want us to think she was sick and needing help,” discloses Susan. Surprisingly, when her mom was in hospice, “She had so many visitors that it was difficult to find time alone with her,” shares Debbie. “That was extremely hard, especially so close to the end of her life.”

With the passing of time and the wisdom that often comes with hindsight, Susan, sums up her experience as caregiver to her dad and mom, “I wish I hadn’t worried about work and what would happen if I couldn’t find someone to cover for one of my shifts.” With sadness in her voice, she finishes, “I wish I had been there for them more.”

A tremendous thank you to sisters Carolyn, Elena, and Sarah for sharing their experience as caregivers when their mom was diagnosed with cancer. And a huge thank you to sisters Debbie and Susan, whose experience caring for both their dad and mom shines a light on how caregivers are often stretched thin as they juggle work, family, and caregiving responsibilities.

*Names have been changed to protect confidentiality.

Written by Amy Tix, Communications Manager at Firefly Sisterhood. Amy is a 12 year breast cancer survivor who is reminded – with every blog in this series she writes – that caregiving is a tremendous gift. Susan and Debbie – my aunts – I dedicate this blog to you, as caregivers to my beloved grandpa and grandma. Oh, how I miss them and I thank you for your sacrifices in taking such good care of them.

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