‘Investing in him the way he did in me’: Kristin’s Story as the Caregiver to Her Father with Cancer
This article is sponsored by Lilly
Kristin, a mom, digital media journalist, and artist who just proudly celebrated her 50th birthday, has always had a champion in her father. From the start, they were an intellectual match, reading the daily newspaper front-to-back, regularly debating current events and enjoying Shakespeare and the opera. He always kept Kristin on her toes, pushing her to think critically and write poetically in her work as a journalist.
Over the years, her father entrusted her to support his work as an internist and pulmonologist, where she would spend time at his local walk-in clinic getting to know patients.
In her days spent at the clinic, Kristin never thought twice about the deliveries of cardboard ‘welcome’ boxes to the office for cancer patients beginning their treatment journey. It wasn’t until one day she was visiting her parents and found a box addressed to her father sitting on their counter, that she felt the gravity of the situation.
That night, Kristin’s father broke the news to her and her mother that he had known about his blood cancer diagnosis with chronic lymphocytic leukemia (CLL) for five years but had moved out of a watch and wait period. CLL is a form of slow-growing non-Hodgkin lymphoma that develops from white blood cells known as lymphocytes. This disease is one of the most common types of leukemia in adults where cancer cells are present in the blood.1,2
"Be Present, Watch and Listen”
A cancer diagnosis can be a stressful and emotional experience not only for the patient, but also for family who often become caregivers. Findings from a recent study conducted in collaboration with The Leukemia & Lymphoma Society (LLS), shine a light on the unpredictable challenges that adult-child caregivers of an aging parent living with blood cancer must navigate.3 Since many hematological cancers like CLL affect older adults, often times the adult-children who are managing their own family roles also provide support and care for their diagnosed parent.3
Kristin’s father did not want to admit he was sick, but now that the cancer had progressed, it was time for him to begin treatment. With her mother feeling the weight of the news, Kristin stepped in as her father’s primary caregiver.
From driving her father to and from appointments and outpatient treatment, preparing meals and everything in between, Kristin was in a pragmatic and constant state of fix it mode.
For eight years, Kristin continued caring and advocating for her father and his daily life, all while raising two teenage girls with her husband, and pursuing a career in digital media and as an art teacher. Sacrificing her own health to support others, she was dealing with radiating levels of stress.
“Each night I laid down in bed and thought, ‘I am burning the candle at both ends.’”
Understanding the emotional challenges of a cancer diagnosis, Kristin knew that it was critical for her to show up each day to be present for her father and “listen, watch and help.”
Relishing the Golden Years
As a result of the significant progress in clinical research and cancer care for CLL over the last decade, patients can now live with the disease for many years.
When Kristin had first learned of her father’s diagnosis, she knew there was an urgent need for treatment. Kristin’s father responded well to initial treatment and regained some of his energy, spending days gardening with a renewed spark.
However, soon he began to relapse, but this time he was eligible for a new therapy. Excited by the prospect, he began treatment and glimmers of hope turned to golden years of time.
When we thought we had no time, we’ve had extra years.”
Caregiver to Community Advocate
While deeply involved in caring for her father with CLL, Kristin still didn't feel like she was doing enough and wanted to help make a difference in the blood cancer community. Early on, upon noticing an LLS pamphlet while sitting in a waiting room, she signed up to run her first marathon with the organization alongside members of the blood cancer community and found that, “Running completely clears the mind. It was so important for me to be in my body and not my head.”
From that moment on, Kristin knew she had found her passion for running. She began building a team in her home state of Maine, bringing together runners who were survivors, caretakers or loved ones of people with blood cancer. She traveled to participate in numerous races across the country with LLS, fundraising for blood cancer research and speaking at the annual events.
Soon, LLS approached Kristin and asked her if she wanted to serve as a policy advocate to help advance their mission aimed at accelerating the development of new cancer treatments and breaking down barriers to care that patients often face. Kristin felt honored by the opportunity to use her skillset to advocate for the blood cancer community and had a passion for politics thanks to her father. Without hesitation, she traveled to Washington, DC and engaged in powerful conversations with legislators.
“Having those ~4.5 minutes to make an impact, you know that you are carrying 1 in 3 cancer patients’ stories with you as part of that experience.”
Evolving in the Role of Caregiver
Over time, Kristin’s own personal health battles with an autoimmune condition compounded by the rise of COVID led her to seek help from others including her family members, in-home care and third parties.
She learned that caregiving could look different. A once never-ending cycle of hands-on care slowly evolved into coordinating phone calls and scheduling nursing care, organizing grocery deliveries, and prescription pickups. It wasn’t all on her.
“I now understood that there were boundaries that needed to be set. Making the transition to providing care for my parents through third parties was going to be enough as a daughter.”
These days, Kristin and her family cherish the hours spent visiting her father. She feels grateful every day to be able to spend more time with her father.
Stories like Kristin’s bring to light the importance of raising awareness and finding treatment options that give patients with CLL and families hope. Advances in the blood cancer space are critical to ensure patients with CLL have options, especially through later line therapies.
“The gift of time that these innovations have created as a result of different teams around the country working on these medications is incredible.”
Taking Time to Care for Yourself
No one will deny that caregiving can be draining. However, fostering openness in the family about cancer has been linked to caregivers’ perceptions of receiving social support.3 Kristin communicated openly with her husband and two teenage daughters about the emotional rewards and challenges of caregiving. In addition, Kristin found that cancer support groups were her saving grace.
While caring for her father, Kristin met weekly with a women’s caretaking group through LLS and more recently meets with a monthly grief support group. Hearing other people’s stories helped her understand that she wasn’t alone.
“When you have those moments in caregiving when you feel like an absolute failure, because you will, ask yourself the question: What is the most loving thing I can do for myself right now?”
Kristin hopes that people will understand they can fit into the caregiving space without having to sacrifice themselves to the point of exhaustion and resentment. There are so many touchpoints and ways to give care that are loving, supportive and most importantly, enough.
“I was able to invest in him, the way he did in me.”
- Mukkamalla SKR. Chronic Lymphocytic Leukemia. StatPearls. March 7, 2023. Accessed October 4, 2024. https://www.ncbi.nlm.nih.gov/books/NBK470433/.
- The Leukemia and Lymphoma Society. NHL Subtypes. LLS.org. Accessed October 4, 2024. https://www.lls.org/lymphoma/non-hodgkin-lymphoma/nhl-subtypes.
- Wright KB, Bylund CL, Vasquez TS, et al. Adult-Child Caregivers' Family Communication Experiences after an Older Parent's Blood Cancer Diagnosis: A Survey Exploring Their Openness, Avoidance, and Social Support. Cancers (Basel). 2023;15(12):3177. Published 2023 Jun 14. doi:10.3390/cancers15123177
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