Though the individuals in this story are fictional, the stories presented reflect my real-life experiences with patients and their caregivers.
Upon entering my patient’s room, I introduced myself and apologized for running late. I sat across from Carry, my patient’s granddaughter. The clinic was running as usual that day. In one word: overbooked.
I had forgotten my pen in the other room, and I was preparing myself to take “mental notes” from this point on — we had electronic medical records, but I hated typing in front of patients. Carry, on the other hand, sat prepared, holding a pencil and a notebook, opened to the first page, with today’s date in the upper right-hand corner. She was not smiling. She rarely did when it came to her grandmother’s health, as Carry took these meetings seriously.
Her grandmother broke the silence with a cough, which then began a discussion of her current symptoms, worsening feet-swelling episodes and the state of the local sports teams. After a 30-minute scheduled visit, Carry finished three full pages of notes that she later annotated with medical instructions, questions and concerns.
Of all my patients during that time, this grandmother was my main concern. Her disease seemed too difficult for her to manage, even with her granddaughter’s notebook. But Carry persevered, and at the second clinic visit three months later, she came with seven questions in her notebook: How much salt is too much salt? When should Grandmom weigh herself? If she feels dizzy, should I still give her a water pill? She’s always cold — is that because of the aspirin? Will her heart heal? Will she always have fluid in her lungs?
We went through each question, but each answer gave way to more questions. After the last question — already running late on time — I made the move to give my cellphone number to Carry. “Call me whenever you have questions or concerns.” And that’s when I first saw Carry smile. “Thanks, Doc.”
Before my patient passed away from heart failure, Carry had sent me 827 text messages, on top of our usually planned clinic visits every three months. Those texts lead to 14 unplanned clinic visits and seven home visits when I couldn’t squeeze her into my clinic schedule. But she was never hospitalized. My patient passed away on her terms, at home, watching her favorite sports team — per Carry.
I became a caregiver myself when my father developed cancer a year later. And with all my great medical knowledge, I still found the caregiving role remarkably challenging and demanding. My father, once an independent man, hated being a patient. But because I had watched Carry and many caregivers like her, I knew I could help him by lending my support and ensuring he felt comfortable even when he couldn’t be completely autonomous.
When it comes to health care, there are more roles to fill than simply patient and doctor. Caregivers help patients feel supported even when their doctors aren’t present. They can also serve as patient advocates, helping them voice their worries and concerns in an organized manner.
Caregivers help the patient feel prepared. But how can we prepare them for their new roles? First, grab a notebook and a pen.
Disclaimer: The patient mentioned in this story is fictional.