By Kelly Baldwin Heid
Six months after I lost my mom to BRCA-related breast cancer, LBBC asked if I would be willing to share my care-giving story. The words (and emotions) poured out of me – I could have gone on forever about my experience. Now, nearly five years later, my mother’s death—and the months spent caring for her beforehand—remains the most formative time in my life (and I’ve since had two children!)
Time and therapy have helped me become more at ease with the presence of her absence, and my children have allowed me to remember “grandma-in-heaven” in beautiful and unexpected ways. But a job change—from art digitization/education at the Philadelphia Museum of Art to fundraising for breast cancer research and patient care at the Abramson Cancer Center and the Basser Center for BRCA—has proven to be the single most meaningful step in accepting life without my mother.
I carry her with me always, but my grief now feels like something I have to offer—not only to the incredible faculty I support and to my wonderful colleagues, the majority of whom also share a similar story, but also—and most importantly—to the inspiring and gracious patients and families I encounter every day. It is an honor to do my small part in advancing treatment options and patient care for these families, and something that I’m certain would make my mother proud.
My mom used to say that having cancer was like wearing a backpack. Sometimes the backpack was heavy and slowed you down, while other times it was empty and you hardly noticed it. But it was always there, always with you.
I was a caregiver for my mother, who fought breast cancer for 25 years and died on February 25, 2012. For the last two years, I called her almost every day on my lunch break and tried to be there for her. I live in Philadelphia, so I went home to Michigan a lot. When the cancer spread to her brain and she decided not to have further treatment, I supported her.
I have kept a journal since I was in middle school, and I often wrote about how difficult this time was. On October 31, 2011, I wrote, “Some days are better than others, but it’s always with me. I cry a lot. But I just can’t summon the strength or stamina to express my feelings of deep fear and almost manic desperation to her. If I go to call my mom at lunch, and I can’t reach her for some reason, my anxiety flies off the charts, and I become literally obsessed with talking to her and hearing her voice.”
In November 2011, we found out that the chemotherapy did not work. After that, I found myself writing down the most basic things I was grateful for—this, I got from my mother. She was the type of woman who would exclaim, “I just love yogurt,” as if it was a pot of gold. She would break into song about asparagus or getting the mail. I wrote about being grateful for 2 percent milk, my gym, art, warm pants and the shining sun.
That November I wrote my mom a letter and asked if she felt that she was dying. She called me to talk about it, and her answer was yes. I didn’t feel better after speaking with her about it, but at least I knew where she stood. Lesson: ask everything, ask anything, and ask often. Fear of the answer is not a good reason to keep quiet. I draw on the big conversations as much as the little exchanges now that she is gone. Asking questions might also help the sick person express herself in a way she wouldn’t be able to otherwise. I felt part of my role was to ask my mom things other people might be afraid to ask but that she might want to talk about, like how her body and mind felt as she was dying.
When I relocated to Michigan for the two months preceding her death, my role expanded significantly. I went from providing emotional support to providing physical support. I also had to adjust from being a part-time caregiver to doing it full-time.
I and her other caregivers did everything for her. We were her voice, and we knew where she stood. She had always said she wanted to die with dignity, and we advocated for her. While in Michigan, I felt less emotionally reliable because of the exhausting and all-consuming demands of hands-on caregiving. It meant the world to me when my family and friends would tell me I was doing a good job. We—my dad, sister, husband, brother-in-law, aunts, uncles, friends and I—relied on each other so that we could give 100 percent to my mom.
My mom was often sleeping, and I would spend hours staring at her and memorizing her features. There were mornings when I was sure she would not make it another hour, and I would hold her hand and cry into her shoulder. I am not ashamed to admit that I prayed for two things every morning: that I would have the strength to make it through the day, and that my mom would have the strength to die.
My caregiving experience had many contradictions: I wanted to hold tightly to her warm body, but hearing her labored breathing was agonizing. I wanted her to be at peace, but I didn’t want to live without her. And then she died. Five months later, I can’t believe she is still dead.
One of the last things my mom said to me was, “You have to be brave.” And she was right. Caregiving requires a lot of courage. Caring for someone with cancer or any ailment is hard, complicated work. And at the risk of sounding cliché, it is also indescribably rewarding and life-changing work. The ability to give someone you love what they need feels good, and I am proud I was able to do that for my sweet mother.
This blog is an update to the original, which appeared in “Insight”, an educational newsletter from Living Beyond Breast Cancer, in the Fall of 2012. The original was by Kelly Baldwin Heid, as told to Anna Shaffer.