My grandma can teach caregivers about showing up for their patients
Recalling an exemplary life of service to a grandson, family, and community
Nana’s husband, my grandfather Bob, passed away a little less than three months before she found herself standing in the maternity ward of a New York hospital. There she stared at her new grandson, hoping and praying that he’d live as normal and healthy a life as God would grant him.
She grew up during the Great Depression, lived through World War II, and had a full life, which included raising three children in a house that she took great pride in, a house she hoped her grandson would be able to visit. He just had to make it to the next day.
Nana, who passed away in 2011, would’ve turned 100 this year. As Thanksgiving approaches in the United States, I wanted to express my gratitude for a woman who was always there for me and did so much to help me in my journey with cystic fibrosis (CF). I also want to reflect on what caregivers can learn from her.
A well-remembered life
Nana, my maternal grandmother, opened her home to my parents after I was initially released from the hospital at 3 months old. After a comprehensive sweat test not long before I was released, I’d been diagnosed with CF — despite having more complications with my digestive system than my respiratory system.
While the news of a terminal illness affecting an infant’s ability to live would shake many people to their core, Nana proved to be a strong backbone for both of my parents and someone they could count on.
All of my family helped out in any way they could. One of Nana’s ways was by offering her home as a haven for my parents, an escape from the onslaught of hospital stays, subways, work, and doctor appointments that had consumed their lives at that point.
The hospital stays would eventually subside because of my physical therapy and new ability to absorb food. I got to experience life as a kid without CF’s heaviness constantly weighing over my head. Her home came to be my home away from home. In a life that was interrupted by uncomfortable treatments and medications, it became my haven from everyday life, even for just a few hours. It helped that she lived about 10 minutes away from me.
After she broke her hip in 2006, she moved down the Jersey Shore to live with my aunt and uncle. She couldn’t live by herself anymore and needed help getting around. Her house was eventually sold, but I still cherished every weekend I’d visit her.
When Nana passed away, I was upset, but thankful that she’d been in my life. I was a lucky kid with a doting grandparent who did everything she could for her grandson, never wavering in her support and love for him.
Lessons in caregiving from Nana
If Nana were still here and could offer any advice to caregivers, especially grandparents, she’d say to be there for your family and give everything you can to help. Your loved ones will never forget your sacrifices, such as providing housing or meals to alleviate financial and stress burdens. They’ll remember even the little things, including simply being there to help distract your grandchild from the horrors of illness.
How’d she do that with me? She’d let me help her make a chocolate pudding that’s still among my favorite desserts; take me to Toys R Us; or let me shoot a basketball in her backyard. (Sorry I didn’t become Michael Jordan, Nana.)
She’d also emphasize to caregivers that, because disease makes a person feel alone and unequipped for their trials, they should think creatively and use their resources and connections to rally a community around the hurt.
Nana had a network of friends she’d reach out to for CF fundraising. Along with my parents, aunt, and uncle, she helped schedule and arrange a yearly bus trip to gamble in Atlantic City, New Jersey, with proceeds going to fight the disease. It wasn’t just a way for her and her friends to spend some time together and explore the boardwalk; it was helping find a cure for her grandson.
She always put her strong Catholic faith into action, showing compassion and empathy to anyone who needed it, whether to help her grandson or to volunteer with Meals on Wheels for people with HIV/AIDS in the 1980s and ’90s. When I was 8, she was even given an award for her efforts, along with my godmother, Anita, who was her cousin. And doesn’t she deserve that honor and more?
I’ll never forget that house, and I’ll never forget her. Thank you, Nana, for being an example of what’s good in this world.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.