When Jessica Kim and her sister entered their parents' usually pristine New Jersey home, the sisters were in shock at the scene: fast food bags were strewn about, her dad looked like he hadn’t showered or slept in days, and her mom – battling her third round of pancreatic cancer — had withered to nearly 90 pounds. Jessica begged her parents to come stay with her family in Boston for a few weeks during that October 2016 visit. They reluctantly agreed, and those few weeks soon stretched to months, as Jessica assumed the role of her mom’s main caregiver in the final months of her life.
Some 43.5 million Americans are caregivers for family members, performing crucial care that is an invisible part of our healthcare system. Often thrust into the role after an emergency or a sudden decline in health, family caregivers aren’t given training and lack much-needed support. As they juggle the demands of work and other family duties, their own physical and mental health can suffer too. Jessica, a mom of three young kids, says it was among the hardest and most isolating periods of her life. But also, so important. “I always say caregiving is one of the greatest acts of love that anyone can do,” says Jessica. “We as a society need to start embracing and honoring it like that.”
Nothing left to give
By the time Jessica took over, her mom, Hee Suk, had already survived a seven-year battle with pancreatic cancer, which were incredible odds. She had endured surgery, three rounds of chemo, losing her hair, and had lost nearly 40 pounds. A Korean immigrant with a tough spirit, Jessica’s mom relished more time with her seven grandchildren, but at a certain point her body had nothing left to give. Within a few months of moving to Boston, her mom’s medical team refused to give any more treatments and recommended her for hospice care.
For Jessica, the transition to caregiver had a steep learning curve and required shuffling life priorities. She couldn’t do it without the full support of her husband, Peter, she says. After weeks of sleepless nights tending to her mom and then getting her kids out the door to school in the morning, Jessica reluctantly quit her job as an entrepreneur-in-residence at a venture capital firm. “We didn’t know how long she would last, and I knew I needed to be there for her full-time,” says Jessica.
The day-to-day caregiving work was more challenging than expected. As a side effect of her cancer, her mom’s abdomen swelled like a balloon from a painful buildup of fluid. Her mom’s nurses trained Jessica to drain the fluid with a catheter several times a day, filling up liter bottles. She struggled to prepare homecooked meals for her mom, hoping that something would appeal to her taste buds, which were damaged by chemo. “It was just a disappointment when she wouldn’t eat the food I made,” says Jessica. “And then of course you feel guilty, where you’re like ‘it’s not about me.’ It was hard.”
One of her lowest points, she recalls, was putting a diaper on her mom for the first time. She wasn’t sure how to do it, but tried a similar move that she had once used on her babies to gently lay them on their backs. “It was so demeaning and hard, for her and me. We both cried the first time.”
Jessica wasn’t prepared for the isolation she experienced. She didn’t have time to attend a caregiver’s support group offered at her mom’s cancer center. She usually was quite active on social media, but in this case, out of respect for her mom’s privacy, she didn’t share anything about her experience. “It was very isolating to me because I felt like I was holding all of this in that was a part of my daily life, but I was not able to share it with anybody,” she says.
And even when talking to her close friends, she felt a disconnect, like there wasn’t a vocabulary to discuss the day-to-day reality and emotional toll of terminal illness. “I realized our society often doesn’t know how to listen to these really tough situations. We just say ‘Oh my gosh. I’m so sorry.’ And then we want to move on.”
Near the end of her mom’s life, time seemed to freeze. Jessica’s caregiver duties shifted to making sure her mom was comfortable and out of pain. Several times her family was told by hospice nurses that her mom had only 24 hours, but then she continued to hold on. “It was a very long period of just literally being by her side every day,” says Jessica. “I would sleep next to her, because I didn’t want her to be alone.”
She passed away on June 30, 2017.
Just show up
As she was grieving in the months following her mom’s death, Jessica, who comes from the startup world, began to think more about her personal story as part of a wider issue in society. “I was in grief and missing my mom. But I also was so frustrated at our culture. I was so frustrated that there are so many food apps and dog-walking apps and all these other things, but we’re not coming together to solve a really core, really important problem,” says Jessica. So she set out to build an app for caregivers.
And after a year and a half of development, last July, she launched the app, ianacare, which helps caregivers form a support community of friends and family. Using the app, they can ask for help with meals, respite care, errands, and household chores. It helps caregivers feel less alone. And it bridges the gap for loved ones who want to help, but don’t know where to begin.
When caring for her mom, Jessica recalls feeling most supported when friends had surprised her with a meal or dropped by on a Saturday afternoon to take her kids. “That’s how people really showed up for me during that time,” she says. She hopes to inspire other allies of caregivers to do the same. “Don’t ask ‘how can I help?’ Just go and help. And whether they use it or not, it opens up the relationship because asking for help is really hard for many of us. Just show up.”
- 1. ASPE. The Affordable Care Act and Caregivers Research Brief. Health Challenges of Informal Caregivers. Office of the Assistant Secretary of Planning and Evaluation (ASPE). 07/13/15. Accessed February 10, 2020.
- 2. Family Caregiver Alliance. Caregiver Isolation and Loneliness. Accessed February 10, 2020
- 3. Family Caregiver Alliance. Caregiver Statistics: Demographics. Accessed February 10, 2020
- 4. Hirshberg Foundation for Pancreatic Cancer Research. Prognosis. Accessed February 10, 2020.
- 5. National Institutes of Health. “Invisible work” toll among family and unpaid caregivers. February 23, 2016. Accessed February 10, 2020.
- 6. Reinhard, Susan C. Patient Safety and Quality: An Evidenced Based Handbook for Nurses. Chapter 14: Supporting Family Caregivers in Providing Care. Accessed February 10, 2020.