Jennie DearWhen I spent a month in the wilderness two years ago, family and friends stepped up their support for my father, who has dementia. My sister flew in to stay with him for ten days, my brother took over more duties, and friends helped out around the edges.
For one beautiful month, I was free. With another couple, my husband and I hiked through open mesas, slept on slickrock in hidden amphitheaters and woke up to raw-red canyon walls. We clambered up rocky cliffs searching for the remains of Ancient Puebloan homes and granaries. We backpacked in Grand Staircase-Escalante National Monument, bicycled along the Burr Trail and backpacked again through the canyons of Grand Gulch.
Halfway through the trip, my friends made an excursion back to civilization. Any messages for people? they asked.
“Tell them I’ve gone feral,” I said.
What I really meant was something like this: For weeks, we’d been talking about the world and our dreams and the wilderness. We hadn’t been talking about my dad’s dementia, about his caregiving schedule, about his future living situation. I hadn’t been worrying about gaps in his financial affairs, or what I might be missing entirely in his care.
And I didn’t want to come home.
Much of the time, I know how lucky I am—how lucky that, despite his dementia, my dad is an especially sweet and loving person, not to mention crazy-fun. How lucky that he’s financially secure and can afford professional caregivers. How lucky that I live nearby and can be there for him in ways that are perhaps as important to me as to him.
But, like most caregivers and family members of someone with dementia, I sometimes resent the burden. On those days, my dad’s endless needs and expectations make me angry. On those days, I mind his repetitive loops and lack of social inhibitions. And I mind that I’m sacrificing parts of my own life and ambitions to help take care of him.
“Caregiver resentment is normal,” one caregiving website reassures readers.
The Institute of Aging even provides a list of things you, as a caregiver, might resent:
- That your relationship with this person is not the same as it once was.
- That you feel bound to make changes in your life to step into the caregiver role.
- That a disease or aging has overcome your loved one and altered their life as well.
- That this person in your care didn’t show you the compassion and care you deserve in the past.
- That you can’t reconcile yourself to identify as a caregiver.
- That so much of your time is spent focusing on another.
- That it takes time away from yourself and the other parts of your life.
- That you feel these conflicting emotions at all.
Before he had dementia, my dad’s lack of social inhibition was one of his signature character traits, in ways both delightful and embarrassing. Once, standing in line at the post office, my father asked the woman in front of him about her “marvelous veins.” My husband, who was waiting with him, cringed.
But the woman was charmed. Opening up, she talked about her varicose veins, her legs, her life. She and my father were fast friends by the time they made it to the postal counter.
I believe that woman at the post office and the many other people my dad has encountered over the years were responding to the sincerity of his questions. He had a rare and genuine curiosity about other people that was part of his charisma. No matter whom he was meeting, my father would wonder what was it like to be that person—what was life like for a waiter, a plumber, a salesperson, a grocery store clerk, a banker? And he’d ask.
Despite that particular streak of empathy, my father could also be unusually self-absorbed. He’d completely disregard the feelings of his family or friends, barreling ahead with his own whims or immediate wishes at the expense of others.
With dementia, my dad’s social disinhibition and self-centeredness have expanded past the point of charm. I understand he has an illness, a disability. But rather than appearing out of nowhere, many of his dementia-related personality changes are exaggerations of existing character flaws. And that can be confusing, because how do you separate the person from the effects of disease?
One of the feelings researchers have examined in caregiver burden is “expressed emotion.” When I first read the term, I thought it must refer to a healthy venting of natural feelings. Actually, it means the opposite, researchers say: “critical, hostile, or emotionally overinvolved attitudes on the part of a family member toward a relative with a disorder or impairment.”
The phenomenon was first studied in families of people with schizophrenia. Relatives with low expressed emotion tended to be more tolerant and accommodating. Those with high expressed emotion were more likely to be rigid with their mentally ill relatives and treat them inappropriately. Most of the studies have pointed to a direct correlation between high expressed emotion and poor outcomes for the people with the illness or disability.
As researchers explored the causes of hostile feelings, they realized one key factor: If family members believed behaviors were outside a person’s control, they were usually more understanding. But family who believed a person’s rude or troublesome actions were still within their control were more likely to feel strong resentment. If you were asking a stranger an intrusive question because your brain was damaged, how could anyone stay mad at you?
If I let them, my father’s drive, his wishes, his ego could easily take over my life. I don’t let them, but the fear—and the resentment—sometimes persist.
Because my father’s finances are stable, because my family shares caregiving responsibilities and we have professional caregivers, I don’t have to be at my dad’s house every day. I have time for fun and for work, for salsa lessons and skiing on the spring snow crust.
And every now and then, I take the time to return to sweeping canyon overlooks, to starry desert skies evolving into moonlit nights and back again, to days intertwined with nature.
But I don’t want to leave you with that because the resentful feelings are real—and not everyone has the chances I do to let them spill out into an essay, or to know they won’t be condemned for harsh feelings about someone with a serious disease. Sometimes, I think it’s important to just say the words. To acknowledge they exist:
Irritation.
Resentment.
Anger.