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Dr. Mary O'Brien prepared this article for the first edition of the Care for the Caregiver: A Manual for Implementing Workshops contracted by Veterans Affairs in 1992-3. The content includes a portion of the Introduction she wrote and excerpted from the original Care for the Caregiver Manual: How to Replicate the Program. (Chapter 1, p. 3 -7) Halifax: Mount Saint Vincent University, 1992. The issues remain relevant in 2002.
With the tremendous increase in the number of elderly persons in our society, particularly among those who are 80 years and over, caregiving to the elderly has become one of the most important personal and public issues facing society. This population trend places increasing demands upon families to care for their aged members and upon policy makers to respond with initiatives reflecting the needs of both groups.
Most of the elderly are cared for within their own families. Caregiving can and often does, take its toll on both caregiver and care recipient. As the literature documents, caregivers often experience severe stress in all areas of their lives as a result of caregiving. Research also shows that dependency on the family frequently creates severe tension for the elderly, which affect levels of self-esteem, and sometimes produces or increases disability.
Care for the Caregiver programs have been developed and implemented in response to the growing need for support among many family caregivers who must provide emotional, physical and sometimes financial assistance to their elderly members.
Early in the mid-l970s, research indicated that an educational/therapeutic approach in working with families caring for the elderly would provide them with the balance of support they needed, as well as information about the aging process and old age, particularly as it relates to dependency in later life, and the opportunity to discuss the caregiver's feelings about these processes.
Although this manual describes a multi-faceted project, the premise that underlies each component is the same: family caregivers can achieve a more balanced perspective of their role and tasks by receiving and integrating new knowledge which pertains to their unique situations. Essential to this integration is the encouragement and freedom to express and confront the seemingly paradoxical feelings family caregivers experience, such as love and hate, joy and anger, caring and frustration.
An underlying assumption is that an older person will enjoy a better quality of life if they understand the caregiver and help to alleviate her or his stress. In many instances, the elderly person can maintain an optimal degree of independence through more participation in care and in the decision-making process.
Early on, with the first series of workshops under way, it became clear that enabling caregivers to adapt to extremely stressful situations was helpful only to a certain point. A singular emphasis on education and personal support for the caregiver could obscure the complexity of the overall context of caregiving situations and could lead to overlooking the assumptions concerning women.
Indeed, in our society women are the primary caregivers to the elderly, for the gender division of labour ascribes the caregiving role to women. As a result of this cultural expectation, over their life cycle most women are responsible for the care of children, elderly parents and often, a sick husband. The distinct division of labour is reflected in the number of hours women give to caregiving and the variety of tasks they are expected to do for the elderly. Not only are women the major source of emotional support to elderly family members, but they assume the greatest responsibility for direct care, including that of care management.
Furthermore, these assumptions and expectations are reflected in policies on long-term care and employment, which discriminate against women caregivers by affecting their opportunities in the labour market. Community care for the elderly is based on the unpaid labour of women, but the corporate response in Canada to women who care for elderly family members is based on the assumption that caregiving is a problem for the family.
Discussions during this project with women who were caregivers and also in the paid labour force pointed to one of the hidden costs of caring - lost career opportunities - due to caregiving. These women - single, divorced or widowed - were working from economic necessity; their incomes were needed. Some of these women left jobs to care for elderly family members; others turned down job promotions, worked part time, or had to forego job-related education and training opportunities due to the demands of caregiving.
They voiced issues of mounting concern: that women are exploited by the sexual division of labour reflected in government policies, and by corporate response, resulting in economic loss and often poverty in later life. Indeed, women's caregiving responsibilities over a lifetime are increasingly recognized as a major contributor to the feminization of poverty.
Despite the consequences that caregiving may have on the lives of family members, particularly women, research shows that it is unlikely that the family will cease to be an essential support to elderly members. Generational bonds are powerful and present trends do not indicate they are weakening.
Moreover, there is evidence that the caregiver and the recipient of care can help each other when the circumstances are appropriate. Elderly family members often provide valuable assistance to their children, both financial and emotional. However, when the elderly become dependent for care and can no longer provide tangible services to the family, family members often act out of a sense of affection and caring sustained by an awareness of the elderly family member's past caring and giving.
The ability of families to provide for the needs of their elderly members during the final stages of life depends on several factors, including the kinds of appropriate recognition and support given the caregivers. Projects such as Care for the Caregiver are very much needed for the contribution they make to the education and support family caregivers require.
Accordingly, structural issues affecting the quality of life of both the caregiver and the elderly must be confronted and analyzed. There is increasing evidence that informal caregiving to the elderly is no longer a private issue, but one that must be addressed in the public domain. Therefore it is necessary to challenge policies on long-term care and employment practices, along with the underlying assumption that women are the rightful primary family caregivers to the elderly, and the present gender division of labour.
Those concerned about the inequalities that have perpetuated such policies and practices must take a leadership role in helping to effect change. Programs like the one described in this manual can help. Indeed, such programs can encourage caregivers to work for the societal and structural changes which will give them the kinds of support they need so that caregiving to the elderly does not have to become a burden and disability for both the caregiver and the receiver of care.
With recognition from government and corporate sectors of the value of caring for elderly persons within the family, family caregiving to the elderly will no longer be an "either/or" choice. This recognition would insure that women will not have to forego valuable opportunities and elderly persons can spend their remaining days within the family without feeling that they are a burden. The challenge of furthering this goal is one of the legacies of the Care for the Caregiver project.
Mary O'Brien, PhD
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