What it’s like to be a caregiver for a family member at 22

Image Credit: Felicia Robinson

DeAirah Robinson was a student in college when her mother, Felicia, with whom DeAirah lived in Georgia, asked her to feel a lump on her breast. “Our first reaction was, ‘Oh, that’s probably because the bra is a little too tight,'” Felicia tells POPSUGAR. But when the lump didn’t go away, Felicia decided to get it checked out and was diagnosed with breast cancer in December 2017. From there, “it all happened so quickly,” DeAirah recalls. On February 1st, Felicia was at the MD Anderson Cancer Center in Texas and had a unilateral mastectomy. The day after the surgery, DeAirah flew to Texas to help.

DeAirah supported her mother in her early recovery and then flew back to Georgia where her schoolwork awaited her. “I thought [the mastectomy] was the end of the journey,” she tells POPSUGAR. But on Valentine’s Day 2018, Felicia called with a devastating update: The mastectomy hadn’t removed all of the cancer and she would need chemotherapy too. DeAirah was driving home when she got the news from class. “I was in the car and I was crying,” she recalls. “Knowing that she was going to go through this challenge…it was hard to process.”

DeAirah had recently switched majors and had a full course load, but she immediately began planning how to add caring for her mom to her to-do list. “I didn’t really think or think about it. I jumped into action straight away,” she says.

DeAirah is among a growing number of Millennials who have taken on care responsibilities for loved ones. A 2018 AARP report found that 10 million millennials are caregivers, but that number could rise. According to the Global Carer Well-Being Index, one in four Gen Z and Millennial carers entered care roles for the first time during the pandemic.

This is no small task. Millennial caregivers spend about 21 hours a week on care-related tasks, the equivalent of a part-time job, according to the AARP report. As a result, Millennials and Gen Z caregivers often have to balance school, work, and sometimes parenthood with their caregiving responsibilities. And 77% of caregivers say providing emotional support is one of their most important responsibilities, according to a survey conducted by Embracing Carers. The time and emotional energy that caregiving requires often results in people sacrificing their personal lives in some way, and more than half of caregivers ages 18 to 34 say the role has negatively impacted their long-term career goals .

“All I knew was that it would be my duty to take care of my mother, meet her deadlines and make sure she was doing well emotionally and mentally during this journey.”

For DeAirah, making her mother her number one priority didn’t feel like a decision. “I just knew that it would be my duty to take care of my mother, to keep her appointments and to make sure that she was healthy emotionally and mentally during this journey,” she says. Her father worked nights, and she commuted from home to college, but she still managed to accompany Felicia to most, if not all, doctor’s appointments, which proved invaluable: DeAirah reminded Felicia to tell the doctor about symptoms or side effects she had experienced since her last visit and helped her to remember and understand all the medical information she had been given. “We came home and were like, ‘What did they say?’ or “Okay, now I need to get this shot – what does that mean? What are those side effects?” So we kept trying to read ahead and see what was in store for me to see how much commitment I would need,” says Felicia.

At one point, Felicia even moved into her daughter’s bedroom and slept on a lounge chair so she could be closer to DeAirah. “The first chemo hit me very, very hard,” says Felicia. “So [DeAirah] comforted me a lot and spoke positively and somehow nourished me. The roles have kind of reversed, from a mother to her daughter to your daughter mothering you.”

Though DeAirah was willing to help, handling the situation could feel isolating. “I didn’t really have anyone I could talk to about the situation,” says DeAirah. She got to let off steam at friends’ houses, but because she didn’t know anyone who was in a similar caretaker role, “I felt like they didn’t really get it,” says DeAirah. Loneliness is a major cause of burnout among caregivers in general, and the New York Times reports that it may be particularly prevalent among younger adults. Even if their friends have similar experiences, they are less likely to talk about it, and resources aimed at supporting caregivers are often aimed at older people. To keep her spirits up, DeAirah often relied on her faith and prayer, as well as writing. “I would write in a journal when I’m feeling overwhelmed or anxious.”

At one point, DeAirah considered taking a break from school. “I wanted to take a semester off in the spring semester to focus on caring for my mom, but she insisted I stay in school,” says DeAirah. While she’s ultimately grateful, it was also stressful, she says: “I had this pressure of wanting to finish on time, but also wanting to make sure she’s good.”

Finally, in June 2018, Felicia rang the bell at her treatment center to celebrate the end of her chemotherapy. “Seeing her ring that bell was just pure joy,” says DeAirah.

“I still knew she was kind of different physically and probably still felt different,” DeAirah says, but that didn’t stop her from celebrating the occasion with gift bags for the nurses, a number four balloon to mark the laps of the nurses Marking chemotherapy that Felicia had completed and a nice family dinner. “I just wanted to make her feel celebrated,” says DeAirah.

However, as the COVID-19 pandemic began, DeAirah and Felicia were faced with a new set of challenges. After completing the chemo, Felicia was given monthly, then quarterly, hormone blocker injections. Then COVID struck — and suddenly DeAirah was unable to accompany her mother on office visits and act as an advocate. Also, Felicia lost her job and with it her health insurance. The additional insurance she took out was still not enough to cover her continued care. For example, it just reduced the cost of their hormone blocker injections from $5,000 to $1,500 per shot.

The impact of the pandemic on caregivers is undeniable. According to Embracing Carers, nearly two in three people who care for loved ones say the pandemic has made their job more difficult, and 77% of caregivers aged 18-34 say the pandemic has left them feeling more burned out than before . Additionally, in a survey of 952 people with chronic illnesses, 15.7% said they faced a loss of income during the pandemic, reports the International Journal of Environmental Research and Public Health. Financial strain can be devastating for anyone, but especially for those with high medical expenses.

The challenges of the pandemic prompted Felicia and DeAirah to seek additional support. “I had to rely on a social worker for the first time,” Felicia tells POPSUGAR. Although it was a difficult decision, it was a turning point for both women. “[The social worker] helped us navigate some available resources that I never would have known about or people are too proud to reach out to these types of organizations,” says Felicia. Meeting the social worker also inspired DeAirah to attend graduate school in social work herself, after graduating from college in July 2019. “I told her I believe it’s God’s plan because she was so close to me when I was Him.” went through,” says Felicia.

Despite the emotional and logistical challenges she faced while caring for her mother, DeAirah says she wouldn’t change the experience for anything. While DeAirah didn’t think she would be able to get closer to her mother than she was before her diagnosis, the nurturing has “improved our relationship. And as I got older, it just got better,” she says.

Interestingly, millennials are more likely than other age groups to say caregiving is worthwhile. But that doesn’t mean they won’t be overwhelmed. Nurse burnout is real, especially now.

This is why building a supportive network is so important. Eventually, for DeAirah, she shared her struggles with a group of women at church. “They were very supportive and jumped in and asked if I needed anything. They also reached out to my mom … and they just covered me with prayers,” she says. You can find support groups by using the Family Caregiver Alliance or the National Alliance for Caregiving. Both organizations also provide information on financial resources and in-person events and retreats for caregivers and their loved ones.

Read more about Felicia and DeAirah’s story on their website and in their co-authored book, Surviving Pink.

About Ellen Lewandowski

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