Love, loss and legacy: From neurosurgeon to patient, from wife to caregiver
I thought you might be interested in this story that was recently posted concerning Gina Gentili, whose husband, Dr. Fred Gentili (a renowned neurosurgeon practicing in Toronto) passed from glioblastoma: https://www.braintumour.ca/stories/love-loss-and-legacy-from-neurosurgeon-to-patient-from-wife-to-caregiver/. Gina speaks a lot about caregiving and shared resources for other caregivers.
Love, loss and legacy: From neurosurgeon to patient, from wife to caregiver
Dr. Fred Gentili’s story as shared by Gina Gentili.
It was Gina Gentili’s birthday when her husband, Dr. Fred Gentili, called her from the hospital.
Dr. Gentili, a renowned neurosurgeon, was scheduled to perform a 15-hour surgery on a patient with an acoustic neuroma tumour. It was strange for him to call her during the day, let alone before a surgery, as each let the other focus on their work.
“I said, ‘Why is he calling me?’” Gina, a lawyer, recalls. “He asked if I was sitting down.”
Dr. Gentili broke the news that he had two lesions on his brain and they appeared to be glioblastoma. After 20 years together, and having watched the many presentations Dr. Gentili gave throughout his career, Gina had a sense of what they were in for.
The caregiver journey
Gina praises her husband’s positivity through it all, though she admits she struggled with her own fears every single day of the journey.
“I was scared that he would look at me one day and not know me,” she says.
Gina attended her husband’s appointments, gave him injections at home, and managed his medications, all while working each night.
“For three years, I was sleeping just one hour a night, believe it or not,” Gina says.
“Fred told me years ago that when a person has a diagnosis, they just want the normal things,” Gina says. “It framed how I approached the journey. I decided I was going to try to keep things as normal as I could. I did not let the diagnosis take ownership of our lives. And I refer to it as ‘the diagnosis,’ because it was there, but it wasn’t going to overpower us.”
“My approach was, ‘I don’t know how much time I have with him, but I know I have today,’” Gina says.
“I wanted to make every single day we had together special and not think about two or three months ahead. That, to me, made a difference, because we could laugh and we could still enjoy our time together.”
“I would say, ‘Why you?’” Gina recalls. “And he would say, ‘Why not me, Gina? Why not me?’”
Dr. Gentili passed peacefully on January 15, 2022, with his family by his side.
“The night before he passed, he was calling my name,” Gina says. “I was so scared he wouldn’t remember me, and yet, he was calling my name.”
Finding purpose in advocacy
Gina turned her energy towards helping others in health, earning a Certificate of Specialization in Health Care Leadership from Harvard Business School online. Additionally, in Fall 2024, she received her certification from the American Patient Advocacy Certification Board. As a board-certified patient advocate with a legal background, Gina works with patients and families navigating their own journeys.
“It could be as simple as a phone call,” Gina says. “It could be working with the health-care team to make sure the patient’s voice and their desires are heard. It’s something I’m passionate about and it’s part of Fred’s legacy.”
Gina has advocated for patient rights around the world, speaking in places as far-reaching as Rome, India and Italy—Dr. Gentili’s home country.
“I talk about the importance of supporting not only the patient, but the caregiver as well,” Gina says.
“The stress and the tears every time I had to drop off my husband, who has a brain tumour and who is wobbly on his feet, and I just have to drop him off and hope and pray he doesn’t fall because there’s no place for me to park,” Gina says, of her experience throughout her family’s journey. “It really raised my awareness of what patients and families go through, that I wish they didn’t have to.”
Sharing her experience with others
Gina took what she learned as a caretaker and applied it to a booklet, Journey of Love: A Caregiver Guide, that she distributes to others on a similar path. In it, she discusses the phases a loved one might go through, from pre-surgery to post-surgery and beyond. She also shares samples of templates to track medication and advice on caring for the caretaker.
“Caregivers are so often exhausted, grieving, scared,” Gina says, “but you want to show up with joy for your loved one and let them know they’re still a part of this world. It’s tips and tricks for the caregiver and for the patient to keep things as normal as possible through the journey.”
“[Fred] instilled in me that you don’t know what tomorrow will bring,” Gina says. “There’s no such thing as Sunday clothes—not wearing this, not eating that. He encouraged me to enjoy life and take every day as it comes. He’s utterly irreplaceable on every level. Irreplaceable.”
If you feel like keeping track of my wife Anne’s cancer journey and my life as her primary caregiver, I’m chronicling it here:
https://robertmcbrydeauthor.com/news/
Your friend,
Robert
Story credit:
Trina Boyko
Content Writer/ Brain Tumour Foundation of Canada
