Laura spent two years caring for her husband, who was diagnosed with stage IV neuroendocrine pancreatic cancer. They proceeded with chemotherapy, radiation, and surgery to close off blood vessels in his liver that were feeding the cancer. Her husband then underwent an extensive surgery involving an organ transplants for five of his organs. Unfortunately, he had multiple complications requiring him to spend nearly seven months in the hospital. Ultimately, Laura’s husband lost his fight with cancer as the cancer returned to his bones.
As his caregiver, Laura attended all her husband’s doctor visits and hospital stays, taking extensive notes from their many appointments with various teams of doctors and medical staff. She kept track of his medication, which as a transplant patient, was a major task with over a dozen medications given daily at different times, managed several pumping systems (both IV and gastric tube feeds) as well as ostomy care, insulin for steroid-induced diabetes, and extensive daily data collection. His condition left him very weak, so Laura needed to lift her husband to move him from his bed to his wheelchair and back multiple times every day, as well as be able to deadlift him off the floor.
Even though Laura’s caregiving journey was extremely stressful, and emotionally and physically exhausting, she recognizes that she was fortunate. Laura’s place of employment offered excellent insurance and a lot of flexibility to allow her to remain working full-time while caring for her husband. The Affordable Care Act allowed Todd to come onto her insurance with a pre-existing condition, and barred any lifetime coverage caps, which would have been triggered with the surgery alone. Laura’s experience taught her that luck, education, and social status should not play into being able to provide good care to your family member. Most caregivers caring for someone with a condition like her husband’s might have spent tens of thousands of dollars in transportation, childcare, and home aides to help lift him multiple times a day; they would probably need to apply for family leave under the Family and Medical Leave Act (FMLA) to get three months of unpaid leave. Laura would like to see policy changes that ensure everyone gets to have a caregiving experience where they can devote their time, energy, and love wholly to the person they’re caring for.