When Caregiving is Difficult. peter zelei
Updated July 06, 2015.
My weekly assignment as a hospice volunteer was to provide relief for Joan, who cared for her father 24/7. For the last month, I noticed an uneasiness between them. I wasn’t alarmed since I often saw less than pleasant interactions between overworked family caregivers and loved ones.
“I’ll be back in one hour,” Joan said.
“Not a problem,” I responded.
Her father sat in his wheelchair engulfed in a cloud of cigarette smoke, watching the TV.
“Don’t forget my cigarettes, like you did last week,” he said. Despite having lung cancer, he chain-smoked, and I would be inhaling carcinogens for the next sixty minutes—the limit of my lungs’ endurance.
When Joan didn’t return after one-and-a-half hours, I thought traffic delayed her, or maybe she wasn’t able to find some items. After three hours and no Joan, I called the hospice.
“You’re under no obligation to stay,” the volunteer manager said. “But if you wish to stay, you can.”
I remained, breathed shallowly and waited for her return. Joan arrived two hours later looking distraught and carrying a few bags.
“You sure took long enough,” her father grumbled, still fixating on the television screen. “You got my smokes?”
In the kitchen, away from her father’s hearing, she tearfully confessed to the most painful decision she ever made–she wouldn’t return when she left to buy groceries. After crossing the Golden Gate Bridge and leaving San Francisco behind, guilt turned her around. She would return and care for an emotionally abusive father.
The decisions we grapple with as caregivers involve choices between self-interest and the interest of our loved ones. Most of the choices aren’t difficult. Missing a movie or a party can’t compare with taking care of the needs of a husband with Alzheimer’s. But often the choices are more dramatic, as it was for Joan. She assumed the role of caregiver for a dying father despite years of emotional abuse, criticism, and ingratitude. She gave up her life to care for a unappreciative and cruel father.
In my eight years as a hospice volunteer and twelve years as a caregiver counselor, I watched people struggle choosing between continuing to provide care or stepping back. Most decisions were gut-wrenching, pitting the caregiver’s needs with those of a loved one.
Caregiving would be easier if a simple checklist existed of guidelines for knowing when to pull back or leave. The “one-size-fits-all” approach to caregiving doesn’t work, whether the template involves something as straight-forward as stress-reduction or as significant as when to withdraw from a caregiving role.
Questions You Can Ask Yourself
There are no simple answers, but below are four questions my clients asked themselves when they chose to remain as a family caregiver or withdraw. Think of these questions as guideposts you can use when deciding whether to minimize your involvement or return to a difficult situation.
Am I Staying Because of Guilt? Guilt is one of the most manipulative emotions we experience and one of the most destructive. A “wrong decision” can result in self-inflicted punishment that can last for years or forever. Rarely does the person who acted from guilt experience anything positive about the decision. The most difficult question involving guilt is whether the present or past love for the person can justify the sacrifices required for caregiving.
What Parts of My Identity am I Willing to Sacrifice? Intensive or long-term caregiving involves sacrificing a part of one’s identity. The sacrifice can be minimal as when a loving husband gives up unimportant outdoor activities to care for his invalid wife. Or significant as it was for Joan who quit a promising job and severed social relationships to care for her father.
What Can I Do to Decrease the Negative Aspects of Caregiving? Disappointment and anger can result when trying to lead one’s life as if nothing changed. How often did you say, “If only he weren’t ill I could……”. Accepting the role of a caregiver may involve finding new ways of meeting one’s needs. Bird watching replaced a husband’s joy that came from fishing with his wife. They observed birds together in her wheelchair strolling through the neighborhood and from her bed close to the end of her life.
Does Caregiving Help Me Grow? The impetus for growth often involves discomfort; something endemic to the fluctuations found with illness and the emotions it generates. Caregiving involves balancing your needs with those of a loved one. Few endeavors have such a great potential for discomfort on one side, and personal growth on the other.
Forget About What You Should Feel
The press, movies, and television often idealize caregivers, placing them on pedestals while ignoring their needs and frailties. Accepting what one should feel as a caregiver often is at odds with what one does feel. Honestly answering the above four questions may help you with a painful decision many caregivers face: When is it time to pull back?