Between 9:00 a.m. and 11:00 a.m., Lillian prepares her mom's snack and takes care of her dad, who is bedridden and an Alzheimer's patient.
Photo by Brandon Cruz González | Centro de Periodismo Investigativo
Uncounted caregiver crisis
The GDP is a macroeconomic measure that considers the total value of the goods and services that a country produces at a given time. Although it is used to observe a country’s economic evolution, it casts aside a fundamental aspect: unpaid domestic and caregiver work.
“There’s a lot of oppression against women that aren’t exposed or understood because the only thing that’s seen as important is work that’s paid and not work that isn’t paid for,” said Quiñones Domínguez. “If you make it visible, it causes a problem for capitalism that feeds on that invisible work because, if they were to pay women for that work, then it would be more expensive and the profits would be less for the capitalist system,” she added.
The economist believes there’s a “caregiver crisis” in Puerto Rico — which has also been reported in the United States — because of the high costs of care centers for children and adults. The crisis is due to the burnout that some caregivers can suffer from not having a break from these duties, due to the lack of social and governmental support, and due to the invisibility of these tasks, which affect women more because they are feminized tasks.
What Caregivers go Through
“Dealing with the government is the worst ,” Wanda said about the greatest difficulties she faces as a caregiver. “They don’t have anything for them [people with functional diversity], they don’t give you anything. You leave work to dedicate yourself full time to them, but they don’t help mom either. It’s like being blacklisted. They put them in a corner and forget about them.”
She said although she tried to be her son’s teaching assistant, the Department of Education (DE) told her that this was a conflict of interest.
Jorge Salcedo, press officer for the DE, said “there are exceptional cases” in which a mother can be a teaching assistant when the minor’s diagnosis requires priority care provided by their mother.
Wanda is also frustrated with the Vocational Rehabilitation Administration, (ARV, in Spanish) the agency responsible for integrating people with functional diversity into the workforce. She says she was promised a new wheelchair, but it ended up in nothing. They also couldn’t get help finding a job for Christian.
“That’s the problem here. After they turn 21, these young people are left in limbo. There’s nothing. No work. They don’t seek them out. We can’t get equipment,” the mother added. The director of the ARV Services Office, María Benítez, did not comment on this case, but she promised the CPI that she would look into it.
Wanda doesn’t go out alone. She rarely participates in activities for herself. She does her shopping online. And the few times she goes to the beauty salon, she only goes to get a haircut so as not to incur more expenses. She has no friends, and her support network consists of her husband, her family, and the church she attends.
Lillian doesn’t take part in many activities on her own either, and since moving in with her parents two years ago, she hasn’t gone on vacation. She only goes out to medical appointments for her mental health treatment and for the free Zumba classes offered at the Jesús M. “Tito” Colón Coliseum in Orocovis, about a 20-minute drive from where she lives. This physical activity is her therapy, when she unfolds from a calm and quiet woman, to one who makes jokes and laughs out loud. When her car breaks down, she has no public transportation alternatives or taxis available, something common in mountain towns.
For Lillian, the most difficult thing about caring for her parents is seeing how they deteriorate, how it’s harder for them to do things that they could do before. She also has a hard time dealing with the family friction that diseases like Alzheimer’s can cause.
In addition to constant blackouts or water cuts, another difficulty in the Orocovis sector where they live is the ongoing disruption of internet and telephone service. Internet connections and cell phone signals can go out anytime there. Weeks before interviewing her, her father had fallen and she had to run to her uncle’s house, who is one of her neighbors, to call two of her five sisters for help.
“The two of them dealt with the ambulance. They went with him to the hospital, and I stayed with mami,” she recalled. Neither of her parents can be left unattended.