And who looks after them?

HAVANA — Gabriela*, 74, has for the past 12 years looked after her aunt-in-law, who suffers from dementia. Although Gabriela has two children, she lives with her aunt and devotes herself only to her care. Because of the nature of dementia, Gabriela sometimes is unable to sleep for 36 hours and has experienced hypertension, colitis and arthrosis since she took up her task.

Gabriela has found no option to change the pace and course of her life; the plans she laid out for her old age have not been fulfilled and she feels that her life has come to a stop. When referring to her situation, she says that “sometimes I’m depressed. I have no relief; I have no way to free myself.”

How many Cubans — men and women — find themselves today in situations similar to this one? How many of us will have to assume this new role that our social reality has brought to the fore? The aging of the population in Cuba is similar to that in many developed countries, even among those with the highest indices among the developing countries.

According to the National Office of Statistics and Information (ONEI), in 2015, 19 percent of the Cuban population was 60 years old and older. By 2025, this figure will rise to 25 percent and will double in 2050.

The consequences of population aging express themselves in a gradual inversion of the population pyramid. To have an older population implies having a population group in danger of developing illnesses and a higher rate of disabling diseases that generate dependence.

Faced with this reality, health care emerges as a social problem we must attend to, and the role of the caretaker as a new role to perform.

In our context, the care of dependent persons is carried out basically at home, because of our own idiosyncrasy — family values are deeply rooted — and/or because of the limited availability of institutions where that care is available. Both are determining causes.

Informal care is given by relatives, neighbors or friends. Generally, someone assumes the greater responsibility in satisfying the needs of the dependent person even when he/she gets help from a social-support network.

According to studies and experience, it is not difficult to realize that society demands from the caregiver high levels of time and sacrifice. On one hand, the institutions intervene in the care of an ill and dependent person. But, on the other hand, who takes care of the caregiver? That’s the Achilles heel of the Cuban health system.

The demands and exigencies of the task have a major repercussion on the caregivers. Cuban investigators such as Margarita Espín, who holds a doctorate in Health Sciences, say that the constant concern and the tension it originates, the amount of time invested and the physical effort impinge on their health, produce privations and restrict their social and personal lives.

When caregivers do not manage to handle a situation adequately, they feel frustrated and incapable, with feelings of inefficiency that pierce their self-esteem deeply.

Occult patients

Gabriela’s story is one of a woman with dreams, with plans made for retirement — plans she long ago renounced. She feels an intense surcharge of work and has seen a reduction in the space and time she can devote to entertainment and privacy. She sees her life as sedentary, overly slow, a condition forced by circumstances.

Testimonies such as Gabriela’s make us think about the quality of life of caregivers, people who often go through life as “occult patients,” in the jargon of specialists. Satisfying the needs of the sick person is more important that personal needs, so the caregiver often fails to take care of himself in every sense.

When a person falls ill and needs long-term care, the family enters a crisis; everything is restructured and the results are not always conducive to family harmony. Some families organize themselves to contribute to the task, but generally the main responsibility falls on a single person.

Research done at Oriente and Havana universities show that, while the task is often assumed because of a commitment and close affective link with the sick or dependent person, conflicts and associated unease occur, because the act of caregiving means a renunciation in many ways and this reality is lived in a contradictory manner.

The task is done like a sacrifice: the moral obligation and reciprocity in the care received is the main element that moves us to perform it. We assume the care not only because “it is up to us,” “it is our duty,” “nobody else will do it,” or “the children do for us what they saw others do for their parents,” but also because of the few options available in Cuba to turn to a specialized institution that complements love with professional health care.

Although caregiving does not require discomfort and renunciation, it can become a source of personal realization when there exists a gratifying affective relation based on love and full gratitude, when one receives the necessary help to make one’s life easier to bear.

Many questions remain unspoken on this issue: Why is it that women perform this task in most cases? What happens when an elderly adult must look after another? How can we encourage healthy lifestyles among caregivers? How can we prepare for caring for others?

To look after the caregiver should be a premise on the long road ahead, as our people age. While the subject of caregiving is being broached by the Social and Health Science Services, to look at this social group and intervene to improve their own quality of life is a challenge for our society and, in particular, for the Cuban health system.

According to televised statements made by Alberto Fernández, head of the Health Ministry’s Program for Elderly Adults, Cuba has 180 homes for the elderly. All primary health-care areas operate schools for caregivers.

But, according to ONEI, Cuba also has 2.14 million people over the age of 60. Let’s say that only half of them begin to need attention and permanent care because of degenerative illnesses. For their families to continue to hold jobs outside the home, more than 1 million seniors would need to go into 180 homes — almost 6,000 persons in each home.

And that, taking into account that homes for the elderly are not the only alternative required by a functional structure for the population outlook in Cuba.

This is a topic that affects us all. The care of our parents, uncles, etc., is a task that will fall into the hands of the younger generations, but it is also a responsibility of the state institutions to guarantee the well-being of our most vulnerable citizens.

All of us must make sure that the people who hold such an important social responsibility in their hands will not be — as Gabriela puts it — “the famous but unhappy caregivers.”

*Gabriela is not the interviewed person’s real name. She asked that we keep her anonymous.