In August of 2014, Mary’s mother Eartha was discharged from the hospital after a short stay — an event that would have lasting consequences. When Mary arrived at the hospital that day, Eartha was ready to go, dressed and sitting in a wheelchair with a list of medications on her lap. Never given instructions on her mother’s new prescriptions, Mary missed out on a key piece of information — one of the medications was only meant to be given for a very short time. This was discovered months later, but it was too late. Eartha’s kidneys had been damaged irreversibly by the medication and were only working at 10 percent. Mary was given the choice to start her mother on dialysis or begin hospice care.
In preparing Mom’s medication, my 90-year-old Pop would fill a syringe using the light of the kitchen window to see if the dosage was correct. He set up the nebulizer on a table with handwritten step-by-step instructions to remind him how to operate it. Today, millions of family caregivers like Pop perform complex medical tasks that at one time would have been administered only by medical professionals.
As many family caregivers know, getting our parents, spouses or other loved ones from one place to another can sometimes be a challenge, especially if they have impaired mobility. When I was caring for my parents, taking Mom — who was confined to a wheelchair — to see the doctor was an all-day ordeal, even though his office was only a short distance away. We had to wait for the special transport van to come, wait at the doctor’s, and then wait again to get home, all for what was often a five-minute appointment to tweak the dose of a medication.
This year I had the honor of meeting Kyllian, a young New Jerseyan who, as a teenager, was a caregiver for her father. Throughout his battle with cancer, she would come home after high school every day to care for him.
Imagine this: You live on a fixed income and work hard to budget your money. You are very conscious about how you use your utilities. Yet, no matter how much electricity you use, your bill keeps going up.
This weekend we all had the opportunity to celebrate our fathers. As I remembered my Pop — a funny, hardworking, unselfish man — I thought about his devotion to my mom, especially during their later lives when he was her primary caregiver. He shouldered huge responsibilities that I think weighed heavily on his mind.
Even with her training as a nurse, family caregiver Joanne Davis says she doesn’t feel equipped to handle certain tasks as she cares for her husband. “I think of people who are in a situation who don’t have that sort of experience and I don’t know how they manage,” she says. And yet, nearly half of the 42 million family caregivers in America perform medical and nursing tasks to care for their loved ones. This can be managing medications, cleaning wounds or feeding tubes, giving injections and more. Most do this all with little or no training.
As National Nurses Week concludes, I want to take a moment and thank all nurses — past, present, and future — for all that you do. I know firsthand the importance of nurses not only to patients, but to their families. During the 15 years I cared for my parents, nurses made a huge difference in our lives. There’s no doubt, caregiving takes a team, and so often nurses were a part of my family’s team.
While traveling to Erie, Pa., for a town meeting on family caregiving, I was reflecting on my family roots. A little more than 100 years ago, my Lithuanian grandparents immigrated to America and made Shenandoah, Pa., their first hometown. My grandfather worked in the coal mines and my grandmother, fluent in six languages, worked various jobs while raising five children - one of whom was my mom. My grandparents taught me about hard work and perseverance, and my parents taught me all I'd ever need to know about unconditional love and family caregiving.
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