On a recent trip home to New Hampshire I felt the yin and yang of family caregiving or, more specifically, the interconnected and sometimes opposing forces of the local family caregiver and the long-distance ones.
While my mother is the primary caregiver for my father, my sister Carla, who lives less than 5 miles from my parents, assists them with all their needs. She picks up groceries, accompanies my parents to appointments, sits with my father so my mother can run an errand, attends doctor appointments and joins my mother on her respite outings.
She’s also the one who is enlisted to help transfer my father when he falls, fix the internet or TV when my mother’s skills are outmatched or interpret complex insurance and financial forms.
About four years ago, as my parents realized their needs exceeded their abilities, all three daughters suggested Mom and Dad move closer. Their choices included New Hampshire, Connecticut and California.
My parents ultimately chose New Hampshire, where we grew up, which allowed them to feel a sense of community and family. Housing and long-term-care costs were more reasonable than in Connecticut or California, and there was uncertainty as to how long my sister in Connecticut would remain there (she now lives in California).
Each of the sisters agreed if our parents moved close to one of us, that sister would accept the responsibility that would come as our parents got older and had more needs. On my visit, I saw the toll the caregiving was taking.
Family relationships have become strained. My brother-in-law joked about the burden of care his wife endured. He also made it clear that his son did a lot of the heavy lifting when it came to yard duty or repair chores for my parents.
Personal care changes the dynamic. Understanding the responsibility Carla had as a result of my parents’ move, I suggested early on that my parents compensate my sister for the chores she performed. Now that my father’s personal care needs have progressed, that small sum probably doesn’t feel adequate for the tasks she must perform.
Parents don’t want to be a burden to their children. While my sister offered to help put my dad to bed in the evenings (hard work for my mom given my father’s motor control issues as at the end of his day), it was not happening because my mother did not want to bother my sister, who was using the evenings to plan her daughter’s wedding.
On the opposite side, my other sister and I have feelings of frustration and helplessness because my mother is not getting the assistance she needs at night. We offered to pay for care, but my mother would not hear of it.
As a long-distance caregiver, it was easier to see the decline in my father and the increased burden my mother and sister were enduring.
Empathy doesn’t change the reality. I feel great empathy for my sister. I often say being the local family caregiver is like walking into the ocean. One minute you’re getting your toes wet and before you know it a wave hits and you’re over your head. I do my best to continue to believe she and my mom are in control.
Thinking about the future is scary. My sister believes she knows what she signed up for, but as I have seen with so many families, we haven’t even reached the challenging part.
Family caregivers will inevitably find they must adjust their approach and expectations as care needs and personal circumstances change.
Open, compassionate communication is an essential ingredient in managing the yin and yang of family caregiving.