What I Wish I Knew About Palliative Care for Breast Cancer When Caring for My Mom

Being a caregiver can be rewarding yet stressful. There are resources to help with that stress.

A headshot of Andrea Walens with the words Breast Cancer What I Wish I Knew next to it

Photo Courtesy of Andrea Walens

My introduction to cancer caregiving started at an early age.

December 23, 2006—the first day of holiday break during my freshman year of high school—was the worst day of my life. I was looking forward to watching movies, making cookies, and spending time with my family and friends, but instead, it was a day full of calls with the oncologist, an ambulance, and hours spent in the emergency room saying a tearful goodbye. At 9:45 p.m. that night, my mom passed away from complications due to treatment of her stage 4 triple-negative breast cancer (TNBC). 

In the summer of 2005, before I started eighth grade, my mom was diagnosed with early-stage TNBC. She was 46 when she was diagnosed with the disease she had been working so hard to prevent since her own mother’s breast cancer diagnosis—also at age 46. When my mom was diagnosed with early-stage breast cancer, I started to learn what it meant to be a caregiver. My caregiving came in the form of hugs and love, as well as by taking up more responsibility around the house. 

After a few months of remission, my mom was re-diagnosed with stage 4 TNBC. My caregiving role evolved into making sure my mom’s oxygen line wasn’t getting tied up as she moved around the house, providing meals at her bedside when she didn’t have the strength to come downstairs, and, as always, providing love and hugs, especially during her final days.

When it comes to cancer, those who provide care at home play a large role in the overall care of the loved one who needs it. And while caregiving can be very rewarding, it can also be very stressful. 

The stress that a caregiver experiences can lead to changes in their health, including the development of depression and anxiety. This stress from the emotional and physical impact of caring for someone who is sick, injured, or disabled is known as caregiver stress. The impact that caregiving can have on a person’s life, such as financial stress, multiple responsibility conflict, and social isolation, is known as caregiver burden. Paired together, the stress and burden can have many negative consequences, including caregiver burnout.

Even though I was not my mom’s primary caregiver, the stress of caregiving and having an ill parent weighed heavily on me. I started to experience anxiety, depression, and even developed obsessive tendencies when it came to germs and cleaning. I reached a tipping point in my anxiety that led my parents to urgently seek mental health care for me.

If we had known the strain caregiving and cancer could have on us as a family, we could have advocated for help and resources more quickly—before my mental health over my mom’s sickness became a more serious situation.

I wish my family knew that we could have advocated for more resources to support us through this challenging time. Specifically, I wish we knew that we could have advocated for supportive oncology or palliative care.

Palliative care can help improve the quality of life for people living with a serious illness like cancer by taking a holistic approach to care. The person who is ill and their caregiver can work with the healthcare team to figure out the best way to prevent and treat symptoms, pain, and stress as early as possible.

People with cancer may receive palliative care at any time from the point of diagnosis, through treatment, and beyond. To better support those who are sick and their families through treatment at all stages of cancer, palliative care is usually given in a team setting. Palliative care teams can include the oncologist, pain specialists, dietitians, psychologists, psychiatrists, patient or nurse navigators, financial navigators, and other supportive oncology experts. Palliative care has been shown to improve quality of life and cancer-related outcomes. 

Palliative care is not just for the person who needs treatment—it can also be a resource for caregivers. A recent review of past studies concluded that having a palliative care support framework for caregivers similar to that for patients could potentially lower caregiver burden.

It’s hard to know if the outcome would have been different if we had access to palliative care early on in my mom’s diagnosis, but I do know that having that extra support would have helped my family through those extremely hard times.

It’s not always easy to advocate for yourself as a patient, and it can feel especially hard to advocate for support as a caregiver. If you are in a situation in which you feel that you and your family are experiencing caregiver burden, please ask the oncology provider if they can connect you with a supportive oncology or palliative care team to discuss your family’s situation. Know that you are not alone and that the landscape of cancer care is improving every day, especially as it relates to supportive oncology and palliative care for patients and their caregivers.

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Sources
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