My phone sits in the kitchen next to my wife’s, as I play on the floor with Ella, my two-year-old. My wife is upstairs supervising bath time for Layla, our 9-year-old. I don’t notice the phone vibrating on the quartz countertop, but in the space of 25 minutes, it has rung 13 times.
Each call was from my 80-year-old aunt. Unable to reach my wife or me, she alternated calling each of us until I finally went into the kitchen to fetch milk for the kid and noticed the phone.
“Hi, honey. Thank you for picking up. Where were you?”
“Playing with Ella.”
“Oh. So, where’s Layla?”
“Taking a bath.”
“OK. I just wanted to touch base and see what was going on. I’m sorry to bother you.”
There’s no emergency; there never is. In fact, these calls, which happen multiple times each day, rarely exceed 20 seconds. The first one usually happens around 3:30 p.m., when my wife pulls in the driveway after a day spent teaching high school. The second happens sometime after I’ve finished washing dishes, but before Ella goes to bed. The third comes some time shortly after.
Those of us juggling the care needs of children and older adults are part of what’s called the “sandwich generation,” an emerging demographic of people caught in a caregiving tug of war. There are more than 11 million Americans caught in the sandwich, according to 2019 report by the National Alliance for Caregiving and Caring Across Generations. Another report, this one from the Alzheimer’s Association, reveals one-quarter of America’s 16.2 million dementia caregivers are sandwich caregivers. Both numbers are projected to grow as more baby boomers cross the threshold of retirement and start requiring additional care.
And many caregivers fall into the role by default. One sentence on page 21 of the NAC report stuck out:
Slightly more than half of sandwich caregivers feel they had a choice in taking on their role of caregiver (54 per cent). For the 45 per cent of sandwich caregivers who felt they had no choice, the perception of emotional and physical strain can often be worse.
This is where I live; this is my normal.
Grappling with the new normal
My aunt’s decline took place over the course of about six weeks. We went from her visiting on Sundays after church to pleading with me to stay at her house because she was afraid to be alone. I cannot pinpoint the catalyst for the downward spiral, but the day I admitted her for an emergency psychiatric evaluation for being non-responsive and nearly catatonic was one of the most sobering of my life. She bolted to my car in her hospital gown after being discharged, buckled her seatbelt and told me she could not live alone anymore.
Managing her care fell to me, as my sister and cousins left our hometown years ago and my aunt’s sisters (one of whom was my mother) have passed away. I reached out to my contacts in the long-term care sector and we got her into an independent living facility within a week.
Talking about this with others is not easy, but living it while also raising children presents its own challenges.
“Why does Aunt Mar call all of the time,” Layla asks. It’s a legitimate question from my nine-year-old daughter about the aunt who used to regularly care for her. Marietta was a kindergarten teacher for four decades, so she would have curriculums planned for their visits—sight words, grouping and counting, and nursery rhymes. That was the aunt I dreamed of having for both of my daughters—the one who was firm but loving, and used every moment to nurture young brains to learn.
Now, Layla and I talk about how Aunt Mar is anxious and doesn’t know how to control it. Experts from the National Alliance on Mental Illness to the American Academy of Pediatrics agree that being upfront and honest with children about what is happening offers benefits beyond myth-busting and lessening stigma. Keeping open lines of communication between parent and child can reduce anxiety about what may (or may not) be occurring.
It’s also important to speak with a child at their level of understanding. A preschooler or child in elementary school will have questions about why their aunt is nervous all the time, just as a teenager might. Or why Grandpa sleeps so much now or needs to be pushed in a wheelchair to get around. In our case, explaining that their aunt’s brain works differently than ours, causing her to worry more and need more reassuring is sufficient to assuage the curiosity of a younger child.
Older kids may have more probing questions, but also a greater capacity to understand how diseases work and progress, what medications do, and how they can help.
Including your child in the caregiving may also help them understand what is going on. Again, make it age-appropriate. Ella, my toddler, might just want to sit in my aunt’s lap after a holiday dinner and have a story read to her. With Layla, my aunt might want to ask questions about what she is doing in school. It provides both the child and the older relative a sense of purpose and involvement; the child feels a sense of accomplishment for playing an active role, while the older relative doesn’t feel as if they are there out of obligation.
Family circumstances, the child’s age and the adult’s condition all factor into what sort of role your child can play. But remember that modelling healthy caregiving today could have an impact down the road when you grow older and become more reliant on your kids.
Caring for yourself
Patience has become a commodity as the strain of caregiving and parenting pulls me in different directions. I find myself getting short; sometimes with her, other times with the kids. The immediate reaction of guilt looms over me when this happens. I reached out to my colleague Ruth Drew at the Alzheimer’s Association for some guidance. Drew is the director of information and support services for the association but she also shares some common ground on this topic. She has a teenage son and is part of a long-distance care team for her father, who has Alzheimer’s.
She says losing patience is a sign of overspending emotional energy.
“It’s like the ‘check engine’ light on your car,” Drew says. “Just like you can’t keep driving your car without filling the tank, checking the oil, rotating the tires and so forth, so also we cannot pour ourselves into our work, our parenting, our relationships, and our caregiving without taking time to get renewed.”
She says it’s also important to remain cognisant of how your reactions may impact your kids.
“Maybe I will pause before I walk in the door at night and say to myself, ‘These days as a parent are precious. I won’t get them back. What do I want my child to remember about his childhood?’ It’s not magic, but just taking a moment to be present and intentional can help,” Drew said.
Drew suggested other tips for managing this stress:
Taking five minutes to do a deep breathing or progressive muscle relaxation exercise first thing and last thing of the day.
Making a weekly appointment for lunch with an encouraging friend.
Getting up 30 minutes earlier for quiet meditation before the day starts.
Talking to a counselor and/or joining an online caregiver group.
Support is available, if you know where to look. Local Area Agencies on Ageing can provide referrals to support programs in their communities for age-related conditions. And national nonprofits like the American Cancer Society, National Alliance on Mental Health and National Multiple Sclerosis Society offer caregiver support groups and hotlines.
Work took me out of town for two days recently. I spoke to my wife and kids only once during the time away and left specific instructions with my aunt not to call me. The request was crushing to her. After all. I could pick up the phone, have my 20-second call and move on—except that one call enables the second call, which leads to a third, which invalidates the boundaries, such as they are.
Boundaries are important, especially the invisible ones. In my case, I don’t talk to my aunt about how work is going or if anyone is sick, lest she gain another point to fixate upon. When I’m at a work function, reporting on a freelance assignment or just out for social reasons, we set a time when she can no longer call me. If I’m travelling out of town, we talk about how my wife is on solo parenting duty and cannot stop to answer the phone. The compromise is that she cannot call us but we will call her.
Compromise and flexibility are as important as the boundary itself. We created a schedule last summer where I would call her every other day during our weeklong vacation to North Carolina’s Outer Banks. Again, it’s not the content of the call that mattered, but the contact.
This isn’t to say there are not times when it becomes too much. There have been times, usually high stress periods at work, where I cannot handle the excessive phone calling and the boundaries being trampled. The “Block this Caller” feature on the iPhone has been deployed on ours in those instances.
And then, when I have reached a place where I can be calm and rational, I return her call.
Editor’s Note: The author is employed by a chapter of the Alzheimer’s Association.