Before I began managing my elderly dad’s care, we had conversations about a variety of topics—how my kids/his grandkids were faring in the world, planning for our next family gathering, Seinfeld episodes, why in the world Rod Stewart was singing the classics, crossword puzzles … that kind of thing.
When I stepped in as he needed more help, the tenor of these chats changed. Instead of friendly dialogue, we became locked in a battle of wills about all manner of things—whether he was drinking the Ensure I’d stocked his cabinet with, whether his podiatrist was a charlatan or not … that kind of thing.
Welcome to the world of being the “custodial child”—being the one who looks after the affairs of an elderly parent, if not being their actual caregiver. It’s a position that many of us find ourselves in at this moment in life, and to be frank: It is fraught.
Becoming Your Parent’s Parent
Sometimes there is a moment that defines this new stage of family dynamics—a parent has a diagnosis, be it cancer, congestive heart failure, or dementia, or a hospitalization that renders them unable to meet the demands of daily life, and a child needs to step in to keep things afloat. In families where there are siblings, there is one who does the bulk of the caregiving. “Usually the person who lives closest does the most, but typically it’s a daughter if there is one, and who is unmarried, divorced, or seems to have fewer responsibilities,” observes Francine Russo, author of They’re Your Parents, Too: How Siblings Can Survive Their Parents’ Aging Without Driving Each Other Crazy. She adds that “it also has to do with the person’s relationship with the parent—I have heard of adult children who feel very close to a parent and have rearranged their lives to take this on.”
Classic caregiver: A nearby daughter with fewer responsibilities.
Ellen, 64, of Dallas, Texas, is one such person who finds joy in the role. “I have four siblings, but I am the only one in the same hometown as my mother—I live two miles from her house! And I’m ultimate caretaker. I always want everyone to be happy. I never feel like I’m stuck with looking out for my mom, never thought, Where are my siblings and why won’t they help?”
Others find the opposite to be the case: Deborah, a 60-something in Florida, found that she was the chosen one precisely because she and her mother didn’t get along. “Yes, I lived the closest to her, but it was also that I have never been my mother’s favorite,” she explains, “and as her health declined, she became very demanding with me. She’d been hard on me my whole life, but this was really difficult; she made it clear that she felt I owed her. She’d expect me to leave my job to run errands for her in the middle of the day, and she wanted me to bathe her. I eventually had to tell her, ‘I want to be your daughter, not your caregiver,’ and figure out a solution.”
Turning the Tables
Whether your relationship with your parent is fabulous or frightful, “taking over” is not easy. Think about it: Your parent is used to being the teacher, the guide, the guru. Having one of their “babies” butt into their world and boss them around is not so fun.
“Parents can be quite annoyed at being told they need help when they don’t think they do,” says Russo. She recalls a situation in which an adult child was ordering her mother to wear oxygen when she went out to lunch with friends. “She said, ‘You must!’ but that didn’t take into account how humiliated her mother felt when forced to do so. She would have preferred to be a little short of breath for an hour or two and look ‘like herself’ in the world, among friends.” Sometimes, a parent of sound mind may choose to do something not great for their health but good for their spirit—and accepting it can be tough for the child who feels responsible for their parent’s well-being.
Sometimes the only thing you can control in this situation is how you show up at these interactions.
I certainly know my dad didn’t enjoy my frequent, well-intentioned warnings about his diet—not too much grapefruit juice! Avoid broccoli! He felt he’d rather eat his favorite foods and live a little less long. My nagging at times only served to rob our relationship of warmth and joy. Having an adult child stepping into an elder’s life only reinforces his or her diminishing abilities. It’s no fun however you slice that. Ellen, for instance, found that when she tried to ease communication with the family lawyer, her mother snapped at her: “Why is he emailing you and not me? What are you two up to?”
So as much as you may want to go into take-over mode, take a breath, and recalibrate. For instance, says Russo, if a parent starts to miss the due date for bills, say, “Mom, you are getting late notices. May I help so you don’t have any trouble with this, like the electricity getting turned off,” versus, “Clearly you are incapable of managing and I have to do this for you.”
Empathy is vital, says Leslie Kernisan, MD, MPH, who specializes in geriatric care and whose site is a trove of great info. “Recognize that sometimes the only thing you can control in this situation is how you show up at these interactions, so work on that. Try to understand how they see a situation, make them feel heard and validated. Come up with options once you know their intent. If they want to get behind the wheel and drive for hours to see a friend, suggest meeting at a midpoint instead.” Kernisan recommends the book Difficult Conversations, saying it’s very helpful for these kinds of talks.
When a Parent Demands Too Much
In some cases, a parent will overburden their child, as in Deborah’s case. “My mother expected me to go to all her doctor’s appointments with her, take her shopping or run errands for her. I work full-time and it was pretty constant and extremely challenging,” she says ruefully.
Your parents would probably not want you sacrificing your life for theirs.
There’s major boundary-drawing and creative problem-solving to be done in this case, but the main thing to remember is—like the old airplane oxygen-mask example—that you are of no use to others if you are downward-spiraling. Deborah, for instance, stood her ground and also asked her mom to get her a duplicate credit card; that allowed Deborah to do the shopping requested after work—and without going into debt.
“Your parents would probably not want you sacrificing your life for theirs,” observes Kernisan. “They don’t want your family, marriage, income, or retirement savings to suffer.” Let that guide you as you navigate these difficult conversations and decisions. You may need to take a step back and find other solutions. Even if you’ve moved in with a parent, you can retreat, says Kernisan. “You may need to say, ‘Unfortunately, this situation isn’t working for me. Let’s work to find another arrangement.’”
The Sibling Situation
Being the main conduit of care not only changes your relationship with your parents, it can do a number on how you relate to your brothers and sisters as well. (I could let my sister tell you what it was like receiving my hysterical, “Heeeelllllpppp me! I’m losing my miiiinnnddd!” phone calls, but let’s pass on that.)
What often happens is the caregiving sibling gives and gives and gives … until they can’t give no more. But they neglect to loop in the others in real time, as they feel swept away by the surge of responsibilities. “If you don’t spell it out for the others, they’ll never know,” says Kernisan.
Be hyper-specific when making requests of siblings.
Rather than shoulder the responsibilities till you reach a breaking point, find ways to communicate what’s going on to the others. Some people like group emails; Ellen says she and her clan do group texts so she can quickly keep everyone informed of how their mom is doing. “Text messaging has been phenomenal for keeping us close. We’re on it a couple of times a week and it really helps us stay connected and know what’s going on. For instance, our mom may give different versions of events to each of us—I think she keeps up a really strong front for me, because I’m the one who’d be likely to, say, take her car keys away if I had any indication she was struggling. So by texting and then calling, my family can figure out what is really going on.”
It’s also important to ask for help before you get a guilt-trippy, ugly space. Kernisan says that all kinds of tensions related to family roles and responsibilities can spill over into this situation—“Mom always liked you best, so of course you are the one who’s so close to her now” statements and the like. If these bubble up, she recommends calling in a facilitator—a geriatric-care manager or what is sometimes now called an aging life-care professional (see box for resources). These individuals can help prep you for the conversation or can attend and keep things on-topic and productive.
Also, be hyper-specific when making requests of siblings. “I need someone to go with Dad for his angiogram in two weeks” is a much better approach than a general, “Please help!” plea. Deborah found it invaluable to have family members provide her with a respite, too. “Siblings who aren’t there don’t get it—that was the case with my siblings. They didn’t live nearby, so their lives kept on, as always, as our mom declined. I would tell them, `You need to spend one of your vacation weeks with mom.’ Which they did do. I used that time to rest and recharge. It helped me feel less resentful, too.”
My sister and I experimented with some ways to have her shoulder more of the responsibilities, but we only wound up confusing my father about which one of us was helping with what—and double-teaming his squad of doctors, too. We came to accept that it made sense for me to keep on doing the bulk of the day-to-day communication and have my sister manage other aspects. Was it an equal division of labor? No. But the share of heart involved for each of us was huge, and we soldiered on, together, through some very difficult times.
The bonds can get stronger when family members communicate, align, and recognize they each have a part to play.
We were blessed to live near one another. When siblings can’t be physically present to help out, says Russo, they should recognize that caring for a parent can indeed be a burden and look for ways to provide emotional support. “Call and check in, send cards of appreciation and encouragement, a small gift—bath products, or the like. Those are things caregivers have told me they have truly enjoyed.”
Ellen agrees, saying her siblings shore her up by sending books that they think will distract her or enrich her understanding of her caregiving role. “We are a close family, and we need to stay close. I am conscious of the fact that this can be stressful, and I don’t want it to interfere with our relationship. I do lean on them—I’m especially close to one brother, and I’ll tell him, ‘I need you to back me on this.’” The bonds can get stronger when family members communicate, align, and recognize they each have a part to play.
Caregiving is often quite unfair—that’s the nature of it—but it’s a deeply emotional moment that can pull families closer. There is no one way or right way to help a parent deal with the vulnerabilities of later life. There is no “right” way for a family to divide up responsibilities, defuse resentment, and make hard decisions. But approached with an open mind, a warm heart, good communication, and an extra helping of patience, it can be a beautiful rite of passage as our parents age.
Janet Siroto has held the Editor-in-Chief position at Time Inc.’s Family Life magazine, as well as senior editorial positions at Cosmopolitan, Redbook and Good Housekeeping. Her writing work has appeared in New York, The New York Times, Vogue and many others.