Poor health doesn’t occur in a vacuum – a diagnosis can turn loved ones into caregivers and affects families, friends, colleagues and beyond.
As part of the Astellas Patient and Caregiver Event held last November, four company employees shared their personal stories of a close family member developing a serious illness.
Meredith Dart (Regional Sales Manager, PCP/Urology), Tarsis Lopez (Director, Regional and Product Communications), Adam Flahive (Finance Director, Budget and Control) and Linda Hawkins (Senior Executive Representative II, Hospital) all spoke about how their caregiver experiences had impacted on their lives and their work.
Introducing the session, Catherine Levitt (Vice President Legal) explained: “This event is about helping us to build empathy and strengthen our patient focus. November is National Family Caregivers Month and it’s really important to us because we know the critical role that caregivers play in a patient’s experience.”
Look for the silver linings
Meredith, whose mother has been fighting a rare type of aggressive stomach cancer, said her family had learned to look for the “silver linings” – such as looking at being a caregiver as an opportunity to spend time with a loved one.
“When you think about the challenges you face, we all need to focus on the silver linings, because this helps you through the bad days and strive for the better days,” she said, adding that her mom was doing well after treatment and finding support from a patient advocacy group called the Life Raft Group.
Meredith went on to explain how the experience had impacted her work.
“I am constantly going back to how we can help the patient, because at the end of every prescription is a patient. What we need to be focused on is empathy toward that patient and the people who rally around them,” she said.
Tarsis explained that his life had changed when his son was diagnosed with a brain tumor at little more than six months old.
“There was a lot of fear during that time. I had to ruthlessly re-prioritize, and what I thought was important to me before was no longer important,” he said.
He explained the importance of supporting caregivers, highlighting how much he had relied on his family and his faith to get through the difficult times.
His son’s tumor has been stable for the last four years, but it is an experience that will stay with the family, who continue to raise awareness of the large unmet need in the therapy area.
Tarsis has raised nearly $20,000 for the Pediatric Brain Tumor Foundation by DJing at monthly club nights in Chicago and talks about his son’s journey whenever he can.
Adam’s daughter has had open-heart surgery three times since being born with hypoplastic left heart syndrome five years ago.
“As she was discharged and readmitted, I noticed a lot of the same faces in hospital and realized they had been there the whole time. It helped me to realize that every journey is unique, and that you may feel like you are going through difficult times, but other people are struggling as well,” he said.
“The whole family, her siblings, our parents, our siblings, the extended family and our friends, are all part of that journey.”
Adam’s daughter is now in kindergarten and doing well, though the family has learned to live in the moment, he said.
Information is power
When Linda’s husband developed stage four colon cancer, she realized how big an impact his life had had on those around him.
“My husband was not just a husband and dad. He was a coach, a son, a brother. All of these people are affected, and you need to let them in,” she said, adding that the experience had changed her perspective on what a caregiver was.
“I thought it was about taking someone to doctors’ appointments and taking care of their physical needs. Now I understand the emotional part is as important as the physical part.”
He is now doing well, said Linda, adding the experience had impacted on her work.
“I am in the field. I realize that if I can get the right message to the doctor, and they can get the right product to the patient, that can save a life,” she said.