May 21, 2019 at 08:13AM by CWC
Twenty-eight-year-old Elana Cohen felt her phone vibrate as she walked into a work meeting. It was her 93-year-old grandmother, calling for the third time that day.
“Hi Grandma, everything OK?” she asked. “I just had a nightmare,” her grandmother said. “I wanted to hear your voice.” Cohen peeked inside the conference room and saw her meeting was starting. Her colleagues knew not to wait for her.
This is a conversation Cohen has with her grandmother virtually every day, multiple times a day. Cohen and her older sister, who is 32, are their grandmother’s primary caregivers—and have been since they were 15 and 18, when their mother passed away. (Their father helps out when he can, but Cohen says their grandmother really only trusts her two granddaughters for help.) Though their grandmother lives on her own and is in good health, Cohen says caring for her is an all-consuming responsibility.
Besides the constant phone calls, Cohen and her sister make sure she has enough food to eat, clean her apartment, go to doctor’s appointments with her, and manage her money. All of that on top of their own full-time jobs and responsibilities. “She goes through her own money so fast that we have to use ours to buy her groceries,” Cohen says. “It’s hard because my sister and I are still trying to figure out our own finances. We don’t have a lot of money to give her.” Yet when Cohen tries to talk to her friends and boyfriend about her caregiving role, she says they don’t really understand what she’s going through. “They think my grandma’s voicemails are funny or sweet,” she says. “They just don’t get it.”
Approximately 43.5 million people in the U.S. are informal caregivers—unpaid individuals involved in assisting a loved one with activities of daily living and/or medical tasks. The average informal caregiver is 49 years old, but 24 percent of all unpaid caregivers in the U.S. are millennials (aged 18-34), according to the Caregiving in the U.S. 2015 report. That means 10 million millennials have stepped up up to this unpaid role for family members, according to AARP.
The average family caregiver spends more than 24 hours a week providing care for their loved one; if they live with the person, that number goes up to over 40 hours a week. They perform a range of duties, from helping with household tasks, staying on top of doctor’s appointments and orders, providing medical care, and lending financial support. The collective value of the work of unpaid caregivers is an estimated $470 billion, according to the AARP Public Policy Institute—yet they don’t see any of that money. The women interviewed for this article all say they are happy to be able to care for their loved ones and do it with gratitude. But that doesn’t mean it comes without hardship.
How caregiving affects a person’s career and finances
Three years ago, Shara Seigel was a 30-year-old publicist living in Manhattan. Her cal was full of kettlebell workouts, dates, dinners with friends, and weekend brunches. But everything changed when her mom called her from Long Island in the middle of the night with the news that her father had a stroke. “I didn’t know what that meant, so I told my mom I would go after work the next day, but then my brother called me and said I needed to go to the hospital right away,” she says.
The first stroke left her father unable to speak; he soon had another one that affected the entire right side of his body. Suddenly, it was up to Seigel, her mom, and brother to fully take care of her dad. They helped him eat, bathe, and took him to physical therapy. “He was in the hospital for about a month and kept having more strokes,” Seigel says. Because he couldn’t speak, Seigel says a family member had to constantly be present at the hospital to help him communicate. “I went from being this carefree 30-year-old to spending every single weekend and some days at the hospital,” she says. “We were all just in survival mode.”
Seigel says her career started to suffer because she wasn’t able to be available 24/7 like her boss was used to. This is a common challenge for caregivers—according to a survey by insurance company Genworth Finance, 70 percent of caregivers report having to miss work to take care of their loved ones, and nearly 10 percent report losing their jobs. “I ended up quitting because they weren’t understanding at all and going to a new PR agency,” Seigel says. “Your priorities completely change when something like this happens and you realize what’s really important in life.”
“Even though most people in caregiving roles take it on out of love, it can simultaneously feel like a huge burden.” —Amanda Allen, PhD.
Being an unpaid caregiver is inherently disruptive to a person’s life. Per the Caregiving in the U.S. 2015 report, 49 percent of caregivers say they felt like they had no choice but to take responsibility for a loved one—and thus are forced to step away from school, careers, and social lives. “Finishing school or career advancement might not be able to be the top priority anymore, if you’re choosing to be a caregiver for a period of time,” says clinical psychologist Amanda Allen, PhD. “Even though most people in caregiving roles take it on out of love, it can simultaneously feel like a huge burden.”
Finances absolutely play a role here. Nearly half of all Americans reaching retirement age have less than $25,000 saved; the average annual cost of an in-home healthcare worker is $21,000, according to NPR, while the average yearly cost of assisted living is twice that (and for a retirement home, it’s over $80,000 per year). Given those realities, many people can’t afford to pay for costly long-term care out of pocket—meaning family members have to step in. This is especially hard for the millennial generation, many of whom are in the beginning stages of their careers (and thus are lower on the salary end) and who carry an average of $36,000 in debt. One in three employed millennial family caregivers earns less than $30,000 per year, according to AARP.
Money is an issue Cohen says she frequently encounters when taking care of her grandmother. “[My sister and I] hired a caregiver for our grandmother,” she says. “We budgeted so my grandmother could pay for it, but she kept running out of money, so I ended up paying for it. She ended up loving this woman, but I had to let her go because I couldn’t pay my student loans because this money was taking a chunk of that fund,” Cohen says. “I felt terrible because my grandmother was so sad—and the caregiver was also a huge help for my sister and I—but at the same time, I had to think about being financially responsible for myself.”
The unspoken social and emotional toll
However, the Caregiving in the U.S. 2015 report found that the primary reason why people to step into an unpaid caregiver role is the simple fact that their loved one needs help. That was true for TV host Ashlee White, 36, whose mother was diagnosed with Alzheimer’s three years ago. The disease progressed so quickly that White, her father, and sister became her mother’s full-time caregivers seemingly overnight. “That entails basically stopping our entire lives to take care of my mom,” White says. Her mom can’t be alone, so the three of them take shifts.
White says while she loves taking care of her mom, caregiving can also feel really isolating. “It’s very had to keep plans with friends,” she says. Not only does White often have to cancel at the last minute because her mom needs her, but the context of her friendships have changed. “Now, the phone hardly ever rings,” she says. Taking breaks can feel impossible because she’s often too exhausted to go out.
“I can’t stress enough how important therapy is for caregivers.” —Ashlee White, caregiver
“Caregiver burnout is real,” Dr. Allen says. “It affects mental health, but also things like the ability to focus and memory. This is something chronic that often happens to people in a caregiving role.” That’s why she says it’s important for caretakers to ask for help (and actually accept it)—even for something as simple as picking up a prescription refill or dropping off dry cleaning—in order to be able to take some of the load off. “It’s also important to acknowledge when you’re not doing well and need a break,” she adds. Many caregivers express guilt over doing things for themselves like going to a workout class, having a fun night out with friends, or getting a massage—but Dr. Allen says self-care of any kind is crucial in order to keep going. “You have to take care of yourself before you take care of anyone else,” she says.
This is why White says she prioritizes her mental health above all. “I can’t stress enough how important therapy is for caregivers,” she says. “I talk about it on social media all the time. That’s the outlet for my anxiety.” She also uses her Instagram to connect with friends and fellow caregivers, which is helpful for dealing with her isolation. (Other places to connect with caregivers include The Caregiver Space, Reddit’s Caregiver Support community, and Caregiver Action Network.) As for her relationships, White says her limited ability to take breaks has made her pickier about who she spends her time with. “Instead of having a lot of friends, I value a few close friendships,” she says. She even approaches dating differently. “In past relationships, I would let a lot of things go. But seeing my parents’ love for each other, I won’t put up with that anymore.”
The hard-won rewards of caregiving
Despite the hardships, all of the women interviewed for this article all emphasized that they were ultimately grateful to be in a position where they could help out their family members. That is certainly true for Vernic Popat, 36, who is the primary caregiver for her in-laws. Her mother-in-law has diabetes and her father-in-law is in need of a new kidney; they’ve been living with Popat and her husband for 13 years. In addition to working from home and homeschooling her two kids, Popat goes to all her in-laws’ doctors appointments, makes sure they’re taking their medications, and supports them on anything else they need assistance with.
Popat decided to become a caregiver for her in-laws because she wanted to play a more active role in their healthcare. “My relationship is very good with them and it got to the point where I wanted to know more of what was going on in their lives,” she says, adding that they often left important details out when relaying info from doctor’s appointments. She feels better, she says, knowing exactly what the physicians are saying, and it also gives her a chance to ask her own questions about how to best care for them.
Talking with Popat, it’s clear she sees caregiving as a way to show love to her in-laws. (Though this is not to downplay how time-consuming and difficult it can be.) “We’re all still here. We laugh together. We cook together. We have fun together. I love being able to sit down at the table with my kids and having [my in-laws] here, too,” she says. Despite not having very much time for herself, “I feel very content at the end of every day,” Popat says.
The feeling of connection, even when dealing with a disease as cruel as Alzheimer’s, is what keeps White going, too. “When my mom tells me she loves me, it’s the best day in the world,” White says. “Caregiving is definitely full of ups and downs. It totally messes with you, but the highs make it so worth it.”