Who cares for the caregivers? The vicious cycle of illness. (Occupational Hazards).

As professionals dedicated to issues of women and gender, we often appear aloof from the daily concerns of "the average woman." In our professional lives and in our political and ideological commitments as feminists, we tend to project an image of ourselves as strong women. But it is time to publicly acknowledge the cost of our dedication to women's issues and of the political actions that spring from our professional commitments as feminists. This process has a serious impact on our physical and mental health, and addressing this reality is also a means of empowerment.

In this article I share my experiences as my grandmother's caregiver on three levels: the personal--my own individual experiences; the professional--my interpretation of my experiences in the context of gender theory; and finally, the practical--my proposals for healthier practices for caregivers.

As a Caregiver

Recently in the course of my work, I ran into Isabel Moya, director of the Cuban Women's Federation magazine, Mujeres (Women). When she asked me how I was, a flood of experiences raced through my mind, all of them related to caring for my grandmother. I was not at all surprised when she told me of a friend who had similar problems. If we had had more time, we could have talked to another woman, and another, and another, all facing similar situations.

Many of us must provide care for family members who are sick or elderly. In a country like Cuba, long life expectancies (especially for women) means that over 12% of the total population is over 60 years of age. This creates new problems of family dynamics that oftentimes develop into crises. One of the most complicated of these concerns is the care and treatment of the elderly, especially those with physical or mental disabilities.

The economic crisis in our country in the 1990s played a part in the deterioration of elder-care facilities, but even before, there were never enough care services to meet today's demand.

Even the community alternatives developed to provide care for the elderly are limited. Not only are resources scarce, but these options are often designed for older persons who are mentally and physically independent, such as the Casas de los Abuelos (Grandparent Homes). The so-called Centros Diurno (Day-care Centers), on the other hand, are isolated experiments: they do not exist in all the municipalities of Cuba, and based on my observations, the demand far exceeds the supply. (1)

This year my grandmother turns 80. She suffers from senile dementia which totally limits her life and that of her three granddaughters. We were all orphaned at an early age, but Grandmother helped raise and educate us. All of us have professional careers.

After all her efforts, after having worked for nearly 40 years, she now has no one who can provide the care she needs and deserves. Her senility prevents her form caring for herself. Because this disorder is chronic and irreversible, she needs constant, not sporadic, care which we are unable to provide.

As a health care professional and as a Cuban citizen, I am currently applying for her admittance to one of the elder-care facility that can meet her needs, which are so great that few centers are suitable. This bureaucratic process takes time and material and human resources. None of three granddaughters is convinced that this is the best option. We also feel somewhat guilty--this is an issue that affects out identity as caregivers--guilty enough to delay the preparation of this article. The clock keeps ticking ...

Daytime care alone is of no use to us: because of the level of her dementia, our grandmother needs round-the-clock care.

Among the three of use, the best we can do is warm up her meals and administer her medication, but not always on the right schedule. As a result, she sometimes has problems due to her diabetes. We also pay someone (a great deal, given our salaries) to go to the house and check on her three times a day. Because she has already walked away and gotten lost twice, we have had to put locks on all the doors to keep her at home. Grandmother is locked in the house all day long and almost always alone.

Our problem is not unique; it is a daily reality shared by women throughout Cuba and an issue that has already emerged in public debates. However, these debates must now be translated into national policies by various sectors. It boils down to this: either we come up with viable alternatives to deal with this reality, or many women--who were born in the revolutionary process, educated and trained to be professionals thanks to the equal opportunities we enjoy--will have to return to our homes to take care of our aging family members.

This is the alternative our reality is forcing on us. What does this say about how we see ourselves as women, socialized and valued as caregivers? Our own identities are also in crisis, and the lack of alternatives and resources to care for our elderly takes a toll on women's physical and psychological health.

Caring for our older family members makes us vulnerable and places us at a disadvantage which affects our entire lives. Nonetheless, health-care professionals generally fail to recognize or acknowledge the impact of this burden. When women caregivers seek support and care, the lack of gender perspective often results in our double victimization--just as we have seen in incidents of gender-based violence. We are told: "That's your lot," or "You just have to grin and bear it," when we complain about the burden of caregiving.

As a Professional

An analysis of the health sector reform process in our country allows us to examine this issue from another angle: improvements in health management include decentralization and the shifting of health care to primary health care facilities. However, some of these measures, such as home care and early hospital discharge, also have an impact on caregivers' health.

The fact that most primary health-care workers are women is also a factor. In the sub-system of primary health care, 63% of all physicians and 98% of the nursing staff are women. In addition, providing care for patients in the home also has an impact on the lives of women health workers.

The consequences of this process of decentralization on women's health has not been studied with the care it deserves. The impact of early discharge and home care of elderly family members on the health of women caregivers and "providers of family health" is still unknown.

The debate on home care or admittance to a nursing home versus hospitalization has yet to be addressed in our country, but this issue is being discussed in the health sciences at the international level. Both options have their champions and their opponents.

The Cuban health care professionals who have debated the issue widely prefer home care. In their opinion, the hospitals' hygiene is not always what it should be, and the medications needed to treat the patients are sometimes unavailable. (2) Patients' diets must also be supplemented by food brought in from home, and preparing and transporting this food implies an additional effort.

However, the caregivers themselves are generally ambivalent about home care. On one hand, they enjoy the "satisfaction" of having the patient at home and being able to provide care for her or him (a reinforcement of women's identity as those who take care of others). They also avoid some of the unpleasant circumstances that surround hospital care.

But at the same time, the all-too-common scarcity of food and other material resources adds to the burden and physical and/or psychological suffering of women who care for the sick and the elderly, whether as providers of family health care (a naturalized reproductive role) or as primary health-care professionals.

At the same time, no attention has been paid to the psychological impact on the caregivers who shoulder the burden of caring for the sick and the elderly in the face of this deficit of material resources that they cannot resolve or, more specifically, the impact that this identity of "caregiver" has on their own self-image. At the same time, when women take responsibility for proving care, they are also made responsible for other, related domestic tasks--cleaning, tidy-in doing whatever needs to be done in the house--and this added work and worry also have an impact on the caregivers' health.

In addition, although a high percentage of Cuban women form part of the country's labor force, at any given moment they may have to request a special leave of absence to care for an ailing relative. These absences are noted in their evaluations, which neither acknowledge this reality nor recognize the importance of the caregiver's role in society. Since she is not at her post, she is not paid, and she may be criticized for her absence.

Inequitable criteria are used to evaluate the roles of women and men. There are no elements of evaluation in the institutions of public administration that evaluate women's and men's different social contributions. Reproductive roles are also productive (what we call reproductive/productive). (3) Caregivers' contributions to the economy and to health should be recognized and valued.

After many discussions and a great deal of analysis, we have identified a phenomenon that deserves further study: the cycle of illness of the caregiver. (4)

This is a problem that gender perspective has allowed us to identify, but it demands a special response by the State. While families have been able to take on these responsibilities until now, our population will continue to grow older. The costs of caring for the needs of the elderly are constantly increasing in both social and monetary terms. We must look for macro-level measures and policies that will provide alternatives to meeting these health care needs.

Health care workers face a slightly different but no less significant situation. Daytime visitation of home-care patients is often done after the clinic closes, and for nurses, this makes the situation even worse. Since the nurses must confirm that the patients are receiving the appropriate treatment, they may work long hours of overtime. Public policies must also be developed to allow these caregivers to voice their opinions about the realities of health care.

New Problems, New Perspectives

We now face the challenge of generating a reform of the reform that incorporates a gender perspective into the primary health care services. Fortunately, this change is entirely possible in Cuba, thanks to our socialized public health-care system and the political will of our government. This marks a clear difference with the governments of the rest of Latin America, whose neoliberal positions are used to justify their laisser faire attitudes to health.

One possible alternative to improve caregivers' conditions would be to professionalize them and provide them with technical training. (5) These jobs could be taken by women interested in entering the labor market who are skilled in providing care and treatment for the sick and the elderly. These professionals could be hired by the family and/or the State to provide home care for the sick and the elderly.

This suggestion may seem to contradict our ideas about equity, our insistence on the recognition of the value of the reproductive function, and the liberation of women from their traditional roles. Nevertheless, even though this proposal may reproduce some traditional roles, feminist groups and other organizations interested in women's issues are backing it. This option represents a choice within the domestic sphere and a job opportunity for women who have found no other way to enter the work force. At the same time, it meets our urgent health-care needs and recognizes the considerable value of an activity that has always been considered a "natural" responsibility of women.

Another alternative would be the creation of day-care centers in all the municipalities with specially-trained staff who could meet the needs of our elderly family members during a "variable" schedule from early in the morning until seven or eight at night. This would allow the women of the family to work and pursue other activities. Day care would provide another viable and reliable alternative while allowing those who would otherwise be responsible for the caregiving to feel that they were caring appropriately for those who were so important in their lives. Age-old guilt could be erased. Whatever the solution we choose, these alternatives clearly will have an impact on our self-image.

This article is the result of long hours of caring for my grandmother, of my professional work, and a line of thought and action that guides our health-care efforts. I firmly believe that my proposals reaffirm the thoughts of our Commander-in Chief, in his famous speech, "History Will Absolve Me": Revolution means changing everything that must be changed. Our experiences, our theories and our daily professional duties have shown us that there are new ways to prove that the phenomenon of women in the Revolution is a Revolution within a Revolution. (6)

Notes

(1.) In 2000 in the Municipality of Mariano where I am employed as a health-care professional, the population over age 60 numbered 21,702, accounting for 15.7% of the total population. Among this group of older persons, 1,184 (5%) suffer some physical or mental disability.

(2.) "Since 1989, Cuba's economic panorama has been characterized by a serious crisis that affects all areas of life in our country. To have an idea of the seriousness of this crisis, we need only look at the Cuba's Gross Domestic Product which fell 35%, while exportations plummeted by 75%, between 1989 and 1993. This crisis was caused both by the disappearance of the Soviet Union and the socialist bloc of Eastern Europe, with whom Cuba maintained 85% of its trade relations until 1989, as well as the United States' 40-year-old blockade strengthened by the approval of the 1994 Torricelli and 1996 Helms-Burton Laws."

Of course, this economic situation had an impact on pharmaceutical production. In addition, the leading international pharmaceutical consortia are controlled by U.S. businesses and laboratories. As a result, Cuba's Ministry of Public Health must often go through third countries to acquire the drugs which cost two or three times their original value.

See C. Sarduy Sanchez and A. Alfonso Rodriguez, "La reforma en el sector de la salud en el contexto cubano desde la perspectiva de genero," presented at the ALAMES meeting held in Havana, February 2001.

(3.) We have added reproductive/ productive to the PAHO/WHO classification of productive, reproductive and community management roles. By reproductive/ productive, we mean all the activities that are considered reproductive but which guarantee the reproduction of the labor force. Because they add value, these activities are therefore productive. This new classification adds a new dimension to the meaning of reproductive roles and implies a re-evaluation of work which is generally done by women.

See Leticia Artiles Visbal, Ada C. Alfonso Rodriguez, Celia Sarduy Sanchez and Clarivel Presno Labrador, Integracion de la perspectiva de genero en el desarrollo municipal (Havana, 2000).

(4.) These ideas were based on an analysis of heath sector reform in Cuba presented by Ateneo Juan Cesar Garcia of the Sociedad de Salud Publica (Public Health Association). An article based on his presentation is forthcoming in the book Genero y Salud: Realidades y Retos.

(5.) While there are "geriatric aides"--women identified by the Cuban Women's Federation and paid by the Municipal Departments of the State Work and Social Security Committee--there are only four women working in this "profession" in one municipality (Mariano), where they earn only $60 pesos. Clearly, these are insufficient human resources, and the salary for such a serious, essential and responsible activity is far too low. Perhaps this explains why few people are aware of this alternative.

(6.) Fidel Castro, public speech, 1967.

Celia Sarduy Sanchez

The author holds three Master's degrees in sexual education, human sexuality and psychology, with a specialization in the psychology of health, from the Universidad de La Habana, Cuba.