In my mid-30s, I knew what it was like to be a cancer patient, an advocate, and a caregiver. Or, so I thought. For the better part of my adult life, I had been the sole caregiver to my grandmother. I cared for her after her second mastectomy, drove her to her doctor’s appointments, and took her grocery shopping. I thought I knew everything about her, but the one thing we never discussed was end-of-life care.
My grandmother was the youngest of six children born to Italian immigrant parents in New York City. She worked hard, got married, had two children, and started a beauty supply business with her husband. But her life was not without tragedies. By the time she was in her 30s, she had lost her youngest child at the age of four to leukemia. By 49, she was a widow. Conversations about these tragedies shaped not only our relationship but also helped me persevere when I was diagnosed with thyroid cancer at the age of 26.
Despite all of the time we spent together and our many phone conversations, we never had that conversation—the one where you talk about how you want to age and what your wishes are. My grandmother had always assumed she would pass peacefully in her sleep, a wish that many people share. Neither of us ever considered that long-term care could be required as a result of a fall or cognitive decline. Her brother, who was a few years older than she was, ended up in a nursing home, and my grandmother did not want this for herself. But there came a time when it became clear she needed help at home, such as a full-time aide or moving to an assisted living facility.
On October 4, 2021, I learned firsthand just how important it is to have these caregiving conversations ahead of time, as my 93-year-old grandmother went from living independently in her home one minute and into the labyrinth of our health care system the next.
As we found our way to the local Emergency Room to diagnose her excruciating back pain, neither of us could have imagined how the next two years of our lives would unfold. That fateful visit to the ER initiated a weeks-long journey. My grandmother was admitted to the hospital, then moved to a sub-acute rehabilitation facility, where she fell on her first night, had hip surgery, a second hospital stay, and then moved to a different sub-acute rehabilitation center. By the end of the month, I was on a first-name basis with doctors, nurses, and social workers, and it became clear that my grandmother would need to live in long-term care (aka a nursing home), something I always promised her would never happen.
By the time my grandmother settled into long-term care, our daily phone conversations had ceased. She was in constant pain from frail bones, could no longer walk, and her cognitive decline had progressed significantly. As her caregiver, my anticipatory grief and guilt were on constant high alert. It was not an ideal situation, but I did my best to be involved with the staff, who were incredibly caring and compassionate. I also bonded with fellow residents, many of whom I saw on my nightly visits to feed her dinner. Afterward, we sang Frank Sinatra and Johnny Mathis songs. Though she hadn’t heard those songs in decades, she remembered all the words. “New York, New York” became our shared theme song. The nursing home was just as much of a home to me as it was to her.
So, why are these end-of-life conversations so crucial? Caring for someone in a long-term care setting is like Caregiving 2.0. As her health care proxy and power of attorney, I was responsible for everything from managing her finances and paying for her care to making medical decisions on her behalf. While I am a Board-Certified Patient Advocate, I often felt unqualified to make so many life-altering decisions, including around how she would want to transition from life and be remembered.
Conversations around care can be uncomfortable, but I know now that it’s far harder to make decisions without them. As an advocate, I share my story to encourage others to shift the narrative from end-of-life to how you can help your loved one live this chapter of their life with dignity. Fortunately, there are resources and tools to help you have a productive dialogue around this stage of aging. The Conversation Project has created many free guides (in multiple languages) to help you prepare for these conversations. Whether you need to choose a health care proxy, figure out how to talk about these issues, or are looking for tips for caregivers of someone with Alzheimer’s or other forms of dementia, The Conversation Project is a great place to start (and one I wish I had known about when I was caring for my grandmother).
Vanessa Steil is a Board-Certified Patient Advocate, thyroid cancer survivor, and a former family caregiver. She never imagined that her own cancer diagnosis at the age of 26 would introduce her to the world of patient advocacy. Her blog, Living in Steil (pronounced ‘style’), has become a resource and a community for other patients and survivors. She and her cancer survivor story have been featured on numerous media outlets, including Medium, OffScrip Health, and in the 2019 book, Tough: Women Who Survived Cancer. When she’s not advocating for patients, she supports solopreneurs as the Founder and CEO of In Steil Creative, a boutique digital marketing and communications agency specializing in public relations, social media, and content creation.