By Yailen Rodriguez (Progreso Semanal)
HAVANA TIMES — G. is a 74-year-old woman who has been looking after her aunt-in-law for the past 12 years, who suffers from dementia. Even though G. has two children, she lives by herself with her aunt and can only spend her time looking after her.
As a result of the symptoms of this disease, her aunt can stay awake for up to 36 hours and has high blood pressure, colitis and osteoarthritis, after G. began taking on her care. G. can’t find a way to change the pace and course of her life; the plans she had made for her own old age haven’t been able to come to fruition and she feels like her life has stopped. When talking about her situation, she says: “sometimes, I get depressed, I can’t breathe, I don’t have any way of freeing myself…”
How many Cubans find themselves in similar situations today? How many of us will have to take on this new role that our social reality had made come to light? Cuba’s aging population is similar to that of many developed countries and it is among the highest within the group of developing countries. According to the National Office of Statistics and Information (ONEI), 19% of the Cuban population were aged 60 or over in 2015. In 2025, this figure will rise to 25% and it will double in 2050.
The consequences of an aging population can be seen in the slow inversion of the population pyramid; having a more aged population means having a population group that is at risk of getting sick and a higher rate of disabling illnesses, which create dependence.
In the face of this reality, care is a social problem that pops up which we need to urgently take care of, as well as the care giver as a new role for citizens.
In Cuba, care for dependent people essentially takes place in the home, as a result of our own idiosyncrasy (where family values take deep root) and/or because of a lack of nursing homes available where they can go to receive this care. Both are determining causes.
Informal care is provided by family members, neighbors or friends. Generally-speaking, one person takes on the responsibility of meeting the needs of the dependent person, even when they receive help from their social support network.
According to studies and the experiences of people close to me, it isn’t hard to note that society demands high levels of dedication and sacrifice from the care giver. On the one hand, institutions target their health interventions at the sick and dependent person. But, on the other hand, who is looking after the care giver? This is where the Achilles’ heel lies in Cuba’s health system.
The demands of this job have significant repercussions on the care givers themselves. Cuban researchers who are studying this subject, such as Margarita Espin, have described the constant worrying and pressure that this creates, the amount of time and physical effort that needs to be invested, all of which affect the care giver’s own health, making them give up many things and limiting their social and personal lives.
When they aren’t able to deal with the situation in an appropriate way, they feel frustrated and incompetent, with these feelings of incompetence taking a heavy toll on their self-esteem.
G.’s story is one of a woman with dreams, with goals that had been set for the time of her own retirement, which she has now had to give up. She feels an immense overload of work and the time and space she has to dedicate to relaxing and intimate matters have been greatly reduced. She feels her own life is sedentary, too still, which is a result of the situation she finds herself in.
Testimonies like G.’s make us think about the quality of life those who look after others have, these people who move about like “hidden patients” as experts on the subject call them. Satisfying the sick person’s needs takes priority over personal needs, and so the person who is caring for another doesn’t look after their own selves a lot of the time, in all aspects.
When a person gets sick and needs long-term care, families go into crisis; everything is restructured and the results aren’t always what’s best for family harmony. Some families manage to organize themselves so everyone contributes to looking after the sick person, but most of the time, this responsibility continues to fall on one person’s head, usually a woman.
Research carried out at the Universities of Oriente and Havana reveal that, while taking on someone’s care is linked to a close emotional tie and obligation with the sick or dependent person, associated conflict and unease still exist, as the act of looking after someone means giving up things in lots of ways and this reality becomes a dichotomy.
Care is given as if it were a sacrifice; the moral obligation and reciprocity in the care received is the main factor that sometimes keeps people in this situation. Taking on the role of “care giver” because “it’s our turn”, “it’s our duty”, “there’s noone else to do it”, “children do what they saw them do for others”, to name a few. But, this is also because of the few options that exist here in Cuba to go to a specialist care home that complements love with professional care.
Although looking after someone doesn’t necessarily have to only bring unease and sacrifice with it. It can become a source of personal fulfillment when there is a rewarding emotional relationship based on feelings of love and absolute gratitude, when they get the help they need for life to feel a little more bearable.
There are still many questions left unsaid about this issue: Why are women the ones who normally take on this care? What happens when an older adult has to look after another one? How can healthy lifestyles be developed for care givers? How can we prepare ourselves to take on this care?
Looking after the care giver needs to be one of the premises that follow us in the long path ahead of us in tackling one of the consequences of having an aging population. While the issue of care givers is being dealt with by Cuba’s Social Sciences and Health sectors, targeting this social group and carrying out interventions that allow them to improve their quality of life is a challenge for our society and especially for Cuba’s health system.
According to Alberto Fernandez, Head of MINSAP’s Elderly Program, there are 180 nursing homes and 100% of basic health services have training schools for care givers.
But, in Cuba, there are also 2,140,738 people aged 60 and over, according to ONEI statistics. Let’s say that only half of them begin to need full-time care because of degenerative diseases. In order for their families to be able to carry on working outside the home, there would be a little over a million old people for just 180 homes; nearly 6000 in each of them. And this is taking into account the fact that nursing homes aren’t currently the only alternative that a functional system for Cuba’s aging population would need.
This is an issue that involves all of us; taking care of our parents, aunts and uncles, etc. is a job that is in the hands of the younger generations, but it’s also the State’s institutions’ responsibility to ensure the wellbeing of those most at risk. All of us need to make sure that the people who have so much social responsibility in their hands aren’t, like G. says, “… the famous but unhappy care givers…”.