The gift of care

Posted: Wednesday, March 26, 2003

February marked the beginning of my fiftieth year of life. The first 48 years were spent living at home with my mother, who died two years ago this month at the age of 82. I was the single, childless daughter who never left home. Except for the time I was traveling or vacationing, my mother was a part of my everyday for all those years.

Although the caregiver role would fall naturally to someone with my profile, it is not something we are trained or prepared to handle until we face that time of life. The day of my mother's diagnosis marked the beginning, in my case. The doctor called me at work with the initial biopsy news: stomach cancer. Surgery for the removal of the entire stomach would follow in a few weeks. Then the second round of news came: sixty percent of the lymph nodes were affected and neither chemo nor radiation would help. My mom came home from the hospital wanting to live. Her faith and will gave her twenty-one more months of life and she simply amazed every doctor that came her way. She amazed her daughter, too.

Our roles would follow the predicted pattern of reversal in the months to come. Having been the consummate mother, always putting her family's needs before her own, it was difficult for my mom to be on the other side of the equation. She was going to be a hard act to follow. She surrendered her kitchen domain to me and I continued to be her chauffeur since she never had a driver's license. We settled into our new rituals, routines and challenges. Without a stomach, keeping food down was a huge hurdle. Enjoying a good meal was one of mom's last pleasures in life, and then that was taken from her. Over time, I watched her shrink from 188 pounds to 80 pounds. But her bravery and spirit remained strong until the cancer made another appearance, in her liver, nine months prior to her death.

My dear friend and soul mate told me I would look back on my role as a caregiver one day and realize that it was a unique gift. Her wise prediction, acquired from her own caregiving experience, has proven to be true. Indeed, it was an opportunity for me to give my mother something no one else could give her in exactly the same way I could. It was her choice to die in the home we shared, and I was able to make that possible even as we continued to live our lives as fully as we could each day. Who better to care for us than those who love us and whom we love? Mom and I shared a bit of that philosophy as we both had cared for my dad in the two years following his stroke at the age of 70. Losing my second parent would make me an orphan at age forty-eight. I had always envisioned my mom leaving this world as the generation before her had - simply old and disease-free. Instead, cancer was introduced to the family tree.

My faith, my family, my friends and an employer that allowed me flexibility helped me to survive and succeed as a caregiver. It truly does take a village. The ties that bind my family are stronger today because of mom's illness and loss, and all the ways we offered each other support. My friends shared my tears, my pain, and my hardest moments. I love them more deeply, if that is possible. While my mom and I didn't understand some of the Lord's decisions, we never lost our faith. Indeed, the last gift my mother gave me was the look of peace and light on her face as she parted from this world. It has been one of my deepest sources of comfort and acceptance.

I believe all caregivers are united in spirit because of what we do. On the most difficult days, we are not alone.

Joyce Guarnieri and Hospice & Home Care volunteer coordinator, Mary Cook, met at Harvard College in 1981.

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