A grandmother’s love knows no bounds. And that couldn’t be truer for Dianne, a self-proclaimed “tenacious” caregiver to her now 24-year-old granddaughter.
A grandmother’s love knows no bounds. And that couldn’t be truer for Dianne, a self-proclaimed “tenacious” caregiver to her now 24-year-old granddaughter.
When her Warrior was diagnosed with sickle cell disease, her tenacity became her guiding force. This helped her become the caregiver she wanted to be. Dianne’s Warrior experienced her first pain crisis when she was just 4 years old. “I think that Warriors live in pain before it’s really identified because they are not able to communicate with you. So, I think that I noticed what I thought was her first pain crisis at that age.” Dianne had been looking out for the signs ever since her granddaughter’s diagnosis. “It looked all concerning. It takes over,” she described. “You just have to stop whatever you are doing and get her the necessary help that she needs.”
When her Warrior was diagnosed with sickle cell disease, her tenacity became her guiding force. This helped her become the caregiver she wanted to be. Dianne’s Warrior experienced her first pain crisis when she was just 4 years old. “I think that Warriors live in pain before it’s really identified because they are not able to communicate with you. So, I think that I noticed what I thought was her first pain crisis at that age.” Dianne had been looking out for the signs ever since her granddaughter’s diagnosis. “It looked all concerning. It takes over,” she described. “You just have to stop whatever you are doing and get her the necessary help that she needs.”
“I had to keep myself healthy in order to take care of her, especially being a grandma.”
“I had to keep myself healthy in order to take care of her, especially being a grandma.”
Over the years, Dianne and her Warrior would come to know the hospital well. “I didn’t go to work. We were in the hospital for maybe two, three days, sometimes a week or more,” she shared. Realizing what it took to be a caregiver, Dianne understood that she would need to make some life changes. She explains, “The challenging part was I changed my career. I was missing so much work that it was a struggle to hold a job. So I became an educator. That was very helpful because we were on the same calendar when she was at school. And she came to the school where I taught, so that also helped.” This decision aligned their schedules. It also gave her the flexibility to better balance caregiving and her career.
The word “tenacious” captures her determination and resilience. But Dianne acknowledges that her tenacity, while admirable, can sometimes take a toll. Taking care of herself is not just a luxury, but a necessity. She compares it to putting on your own oxygen mask first on an airplane. “You need to get oxygen to be able to help someone else. I had to keep myself healthy in order to take care of her, especially being a grandma.”
The word “tenacious” captures her determination and resilience. But Dianne acknowledges that her tenacity, while admirable, can sometimes take a toll. Taking care of herself is not just a luxury, but a necessity. She compares it to putting on your own oxygen mask first on an airplane. “You need to get oxygen to be able to help someone else. I had to keep myself healthy in order to take care of her, especially being a grandma.”
Dianne’s own experiences inspired her to advocate for fellow caregivers. “There is really not enough support, and I think that it's everything. Patient-centered care is really good because we are there for that purpose. But there should also be some type of caregivers’ center as well.” She envisions a dedicated space where caregivers find peace of mind, connect with peers, and access tailored resources.
Until then, Dianne explains that love is the reason she’s able to do all that she does. “Love. Everything revolves around love.”
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