Under Pressure

Balancing caregiving, career and the long-term health risks facing caregivers

It was October 27, 2008, and we were halfway through four months living temporarily near Stanford University Hospital. Our children were ages 13, 10, and 6 and living at home with family. Nasir had survived the initial rigors of a stem cell transplant also known as conditioning. This meant many rounds of rough chemotherapy to reign in the explosive growth of his white blood cells and then full body radiation to clear out his cancerous cells and suppress his existing immune system. His physicians wanted to create a clean slate in his bone marrow, hopefully reducing the chance of his body rejecting the donor cells.

Nasir’s recovery remained uncertain from day to day, making it a difficult decision for me to leave him and fly to Chicago to present data from a national trends survey at the annual Food & Nutrition Conference and Expo. I was fulfilling a commitment I made ten months earlier, back when we believed his health would be in a better place. I had no business leaving town, nor giving the presentation. But like many young caregivers I feared losing my place in the world beyond caregiving. I was struggling to maintain any semblance of my career after years of balancing cancer care while raising our children.

In between doctor appointments, infusion appointments, daily lab draws, cooking and cleaning our small rental apartment, I also managed to analyze survey data of 783 adults to gather insights into Americans' food preferences, dietary habits, and nutritional awareness. The data was collected as part of The American Dietetic Association’s (ADA) (now the American Academy of Nutrition and Dietetics) U.S. National Food and Nutrition Trends Survey which highlighted shifts in Americans’ eating habits, health behaviors, and attitudes toward food and nutrition. These findings enabled dietitians, health educators, and policymakers to better understand trends, address nutrition-related public health concerns, and design targeted health campaigns. The survey showed that more Americans were prioritizing nutrition and physical activity, with the "Don't Bother Me" group shrinking significantly compared to six years earlier. Americans were also eating more whole grains, vegetables, and fruits, while reducing their intake of trans fats, beef, pork, and dairy, reflecting a more positive outlook on diet and exercise.

I fastened my seatbelt for the cab ride from my hotel to McCormick Place. My mind felt scattered worried about Nasir, the kids, and the data I was about to share with hundreds of registered dietitians, public health researchers, policy makers, and food industry representatives. Sliding into the seat next to me in the cab was a colleague I had worked with at the American Society of Nutrition. She was a well-known and respected researcher on nutrition and aging at Florida International University, and former president of ADA.

“Jeannie, I saw you were on the agenda. I’m looking forward to your talk, but I must ask, how is your husband doing?” 

“We are at transplant right now, Nancy. Nasir is hanging in there, but we have a long ways to go. They infused the donor cells seven weeks ago and we are holding our breath and watching his daily blood counts. We are praying his white count doesn’t start skyrocketing again.” 

“You need to listen to me,” she commanded. 

The tone and seriousness of her voice made my head swivel to the right and look directly at her, even with my risk of getting car sick. I could see the intensity in her eyes surrounded by her voluminous hairstyle.

“We finished analyzing data from a large cohort study and found that 18 months to two years after chronic caregiver situations resolve, the caregivers are getting sick with debilitating diseases such as cancer, heart problems, and diabetes.” 

As she was speaking the voice in my head was whispering, “That’s not me. I’m still young. I’m fine.”  

Or was I?  

Walking the hallway to the presentation room I noticed the hustle among the attendees. I felt out of place. The chatter of casual conversations. No talk of infusions, infections, fever, or middle of the night emergency department visits. If there was speak among those missing their children, it was because they were at the conference, and they’d see them soon. What was I doing here? Truth: I needed to keep in the game. I needed to continue to show that through this prolonged family emergency I could also continue to work. I felt my life as I once dreamed was slowly slipping away, while the reality had been settling in that one day I might be the sole provider for our children. 

The meeting room was one of those vast, beige conference spaces where walls are retracted to create a single expansive area. The lighting felt unusually bright. From the podium I had a clear sightline to the multiple rows of chairs. The moderator for the session was the outgoing ADA president. She and I once traveled in the same professional circles, knew many of the same people, but we rarely interacted anymore now that I was fully in caregiver mode. She was a former spokesperson for the Academy, but our terms did not overlap.  

I was nervous. I hadn’t taken the time to consider the room’s size or the potential disagreements among audience members regarding the study’s findings. I knew the survey data, but I wasn’t as prepared as usual for a presentation of this scale. Readying for this day had been a good distraction while caring for Nasir at transplant, but it was a distraction. Not my sole focus and so my talk did not garner the amount of attention I would normally give to preparing for such an event. Just getting to Chicago felt monumental to me.

“Jeannie, the attendance is high. We’re estimating close to 1,500 with many media here,” Tom said.

The room was packed with people standing against the back wall. I knew I was either going to sink or swim. My family’s struggles through cancer had already been on display for many to see. Why should the end of my career be any different. And then I realized. No matter the level of contentious questioning waiting for me at the end of my presentation, I could handle each, one by one. None could compare to the weight of the questions and answers we’d already faced regarding Nasir’s cancer treatments, his risks, and his survival.

I was asked to present the follow up trends survey data three years later.

Since my husband’s passing, the cab ride conversation with my colleague haunts me. A recent CDC study, published in August, highlighted the ongoing and growing health problems among those who care for loved ones with chronic health issues or disabilities (CDC, 2024). The study revealed that U.S. caregivers' health remains poorer than that of adults without caregiving responsibilities across 13 crucial areas, including chronic diseases, mental health, and health behaviors. Specifically, 25% of caregivers reported experiencing depression, 20% faced frequent mental distress, and 67% had at least one chronic physical health condition. Particularly distressing are the studies showing that long-term caregivers may experience a decline in heart health and increased blood pressure years after their caregiving duties end, due to the prolonged impacts of stress on the body (Capistrant B., 2012).

One thing is for sure: We need more community and social support programs specifically targeting post-caregiving individuals to help lessen some of these risks by addressing caregiver’s unique needs for mental health care and physical well-being after caregiving responsibilities have ended. The recent data from the CDC continue to show that too many caregivers are suffering long-term health effects from caregiving and are not getting the attention or support they need.