Parent caregiving roles and responsibilities

Parent Caregiving: The Emotional and Monetary Issues

Eliot's afternoons and coffeespoons rings truer today than ever before. With the potential collapse of social security and the concurrent aging of America's population, care for the elderly has rocketed from a backburner issues to one that is a source of stress for most adults nationwide.

The American Association of Retired Persons lists a number of issues involved in parent caregiving, all of which are suffused with the emotionality of turning the tables and asking children to care for parents instead of vice versa.

First, the AARP cites balancing work and caregiving. (AARP, 2005, 1) When entrusted with the care of a parent, the task may become entirely all-consuming. Children may quickly lose sight of a very important balance between their own careers and caring for their parent, and this could result in a poor balance of emotionality. For instance, the child may feel -- subconsciously -- that his or her parent is interfering with career fulfillment, advancement and enjoyment. If these sentiments are allowed to fester without being aired, resentment and eventually sub-standard caregiving could and will most probably result.

Second, the AARP cites choosing an agency for home care of the parent. (AARP, 2005, 1) In choosing an agency for home care, the child assigns some of the responsibility for the parent care away to an unrelated third party, and this can be a very emotionally scarring parting.

Third, the AARP cites guardianship. (AARP, 2005, 1) This is perhaps one of the most emotionally scarring facets of parent caregiving that may crop up. When the parents are deemed too mentally inept to decide, or indeed legislate, for themselves, children or others must step in to either become legal guardians or appoint a legal guardian. This is a highly emotional stage because it truly marks the moment at which the child has become the parent, or at least the moment at which the parent resigns all parental duty, and even any responsibilities for their own lives.

Fourth, the AARP cites involving other family members in parent caregiving. (AARP, 2005, 1) This can be a very emotional step of doling out certain roles from children of elderly parents to other family members. It can also result in significant family feuds and disagreements that may tear a family apart and again risk gaps in caregiving for the elderly parent.

Fifth, and finally, the AARP cites managing the stress of caregiving as one of its most important emotional byproducts. (AARP, 2005, 1) "The stress of providing care for elderly parents can affect your health, well-being, and ability to provide care. AARP offers ideas for helping you cope." (AARP, 2005, 1) This note ties closely to the balance of work and caregiving. Caregivers must be given the tools and ability to balance their lives, stress and other factors with the critical importance of their duty to their elderly parents.

Beth McLeod, in her treatise on caring for aging parents, puts it best: "Caring for an aging or ill parent is something none of us expects to do - we associate life with our parents. But suddenly we are there, taking care of the ones who diapered us and shunted us to school and sports; here we are now, diapering and transporting them to doctors' appointments. It doesn't seem right and it doesn't seem fair; it seems impossible. Whether we got along or not, the shock of being responsible for the welfare of a parent is unsettling. Says Pat Sussman, implementation director of a social health maintenance organization, "We don't want to think about our parents getting old and dying because then there's nothing between us and death. We're next. And we don't want to look at the psycho-emotional implications." (McLeod, 2004, 12)

Emotions are not the only factors at stake in parent caregiving. Much more banal and corporeal monetary issues also abound and work with the emotional aspects to make caregiving more of a challenge.

Generally Medicare and Medicaid will cover a lot of the medical expenses of elderly and debilitated parents. This alleviates a lot of the straight medical costs for children. However, home care and supplies for children's parental caregiving must still be purchased out of pocket, and that is often a huge complication and of course a source of stress for middle class, middle aged Americans.

Here is a brief discussion of the high costs associated with parent caregiving: The cost of one year in a nursing home is approximately $50,000. Its estimated that one year in a nursing home costs approximately $50,000 or $4,500 per month (Citizens for Long-Term Care, 2001; AARP, 2001). The cost can be higher or lower depending on the level of care needed and the services offered by the facility. Costs vary significantly by region. For example, nursing home care cost per day in Connecticut is $223, Colorado is $133, and Arkansas is $79. The northwest and west regions tend to be higher than others in the U.S. (Financing Long-Term Care, 2005, 1)

In 1997, the average cost for a home care visit was $77. The term "home care" encompasses a wide range of health and social services. These services are delivered at home to recovering, disabled, chronically or terminally ill persons in need of medical, nursing, social, or therapeutic treatment and/or assistance with the essential activities of daily living (National Association for Home Care, 1996). In 1997, the average cost for a home care visit was $77. (Financing Long-Term Care, 2005, 1)

These are large costs indeed, but one cost that is rarely calculated in parent caregiving is the costs that first-generation immigrants to America face. Elderly parents do not have health care, but they are eligible for government help through Medicare and Medicaid. Immigrants to America who bring their elderly parents to America as well in their older years.

These immigrants often have no health care coverage at all for at least five years and this increases the monetary costs of taking care of elderly parents. Already, as we have seen above, the health costs of long-term care and home care are astronomical, and now, with the added costs of day-to-day medical checkups and, of course, more expensive inpatient and outpatient procedures,

For immigrants, these costs can be completely prohibitive. There is nowhere to go for financial assistance in many of the cases involving middle class children caring for immigrant elderly parents, and this will inevitably result in skipped doctor visits and exacerbated medical conditions.

With all of the problems with the emotionality of parent caregiving established above, it is absolutely imperative that obstacles are removed on the economic side of caregiving, or all of the medical technology that can ameliorate medical conditions and extend lives will simply not be available to many of America's most debilitated, needy and even loved seniors.

Parenet Caregiving: Exchange theory

One recent study explains clearly the importance of understanding the exchange theory in parent caregiving. In this study, the authors a multitude of used in-depth interviews with inductive analysis to develop a conceptual framework for exploring social exchanges and their implicit calculations for care-givers in Taiwan. They interviewed twelve caregivers, premised on theory-based sampling and maximum variation. They found some components of implicit exchanges of the caregivers, and drew a comprehensive framework to describe it. At the beginning of care, motivations were mostly from obligation accompanied by reciprocity or sometime repaying motives. In the process of caregiving, some unique, implicit cultural implicit exchanges were found, such as karma, a demonstrative behavior to investment, equitable share of responsibility, and the pressure or rewards from the force of public opinion. These implicit exchanges might be intermediary factors in helping caregivers cope with their burden or even in influencing their continuation of care. The findings are implicated to help family caregivers continue their care and not damage their quality of care. (Hsu, 2003, 1078)

Social exchange theory and role modeling are important alternative theories of how the willingness to provide intergenerational assistance is transmitted from one generation to the next generation. Distinguishing between these varied theories is difficult because they apparently lead to identical predictions.

By means of explanation, social exchange theory exerts a broad influence throughout many areas of family demographic research, especially research on intergenerational assistance. Empirical studies on intergenerational assistance often interpret their discoveries in the economics of exchange. Proof of the exchange paradigm's overall acceptance is revealed by the research studies' frequent use of the phrase "intergenerational exchange" as a synonym for "intergenerational assistance" and "intergenerational support." Many researchers argue for bestowing upon exchange theory an even more prominent role in family research (Astone et al. 1999).

Linked to intergenerational assistance, exchange theory hint that an adult child is willing to recompense an elderly parent with assistance because the parent provided earlier help to the child (restricted exchange) or to another member of the family such as a grandparent (generalized exchange). (Ribar, 2003) In this manner the theory provides an explanation for the intergenerational transmission of elder support attitudes, but it is not the only explication. Socialization and social learning theory are alternative models that stress how parents condition, teach, and set examples for their kids. In the matter of intergenerational assistance, these theories intimate that a generation that assists and supports its parents serves as a role model for the following generation. (Ribar, 2003)

Separating these paradigms is critically integral for the following three reasons. First, exchange theory has not been subjected to a level of testing commensurate with its prominence as a paradigm for intergenerational assistance; few studies discuss alternative explications or submit the paradigm to possible falsification. Second, because coresidence and financial assistance are important familial responses to poverty among the elderly (Rendall and Speare 1995), understanding which paradigm undergirds the willingness to help older parents is critical for those who are interested in encouraging these activities. Finally, the theories intimate that government policies that either increase caregivers' burdens (e.g., through greater regulations or costs) or substitute for their activities (e.g., through more generous social insurance benefits) might have unintended long-run effects if they interrupt the transmission of elder support attitudes to the following generation.

The concept of reciprocity is so key in understanding these exchange relationships in parent caregiving. A new study by Jill Hamilton and Margaret Sandelowski drives these points home: "Giving is receiving, and receiving is giving. This is the key finding from interviews conducted with 28 African-American women and men with cancer who were active participants in dynamic relationships characterized by both giving and receiving. These participants engaged in reciprocal relationships varying in the number of persons involved, types of resources exchanged, and timing of exchange. Findings suggest the need to reconceptualize social support as caregiving and caregiving as social support. This study also points to the need to redesign intervention studies to be more inclusive of components that allow the elderly in illness-related situations to maintain their status as givers in their social networks." (Hamilton, 2003, 656)

Interestingly, here the reciprocal relationships are not just with the parents. They are with all of those in the family unit who are elderly and in need of assistance. This seems to contract the model set up earlier with restricted exchange and generalized exchange. However, the theory of economic exchange remains the same: Children feel they owe a duty to parents in particular or to older relatives (grandparents, etc.) in general, and they can fall into the danger in both cases of turning the exchange and reciprocity relationship into a situation that depends too much on trade and economics, as this can be counterproductive.

In an earlier study, caregiving was examined in families with seriously mentally ill parents. This is a wholly different challenge, one certainly worthy of a more nuanced approach: "Caregiving for people with chronic illnesses, including serious mental illnesses, has generally been seen as support that a care provider gives to a dependent receiver. In contrast, this research views caregiving as a process of mutual exchange. It tests the hypothesis that how much support a mentally ill family member receives depends on how much support they provide to other family members. We also examine whether or not reciprocity depends on the role relationship between recipients and providers of care, the level of patient symptomatology, coresidence, and several sociodemographic characteristics. The sample includes 66 patients who have at least one sampled parent or sibling. The results indicate that the amount of support patients give parents and siblings is very strongly associated with how much support they receive from family members. In comparison to the other variables considered here, patient support provision is by far the best predictor of the amount of family support. These results indicate that it is worthwhile to examine caregiving in families with a member who is seriously mentally ill as a process of mutual exchange." (Horwitz, 149)