- Caregiving Continuum: Caregiving is a term that is used in the field of aging to describe a wide range of support that is provided those elders who experience limitations in one or more tasks of daily living. At one end of the continuum,
this care may involve a family member providing transportation to and from the doctors' appointments or to do shopping. Care can extend to helping with housecleaning or the provision of occasional meals in situations where elders are still, for the most part, independent and caring for themselves. This caregiving continuum increases as the amount of care provided by family and friends increases. At the other end, care may consist of bathing, feeding, carrying; that is, coping with almost full dependency.
The family may not be able to provide the quality and/or quantity of care needed. Others simply cannot provide the time and space required to incorporate the elder into their home life. On the other hand, some families will choose not to provide direct care but use professional services, in or out of the home, or there may be a history of poor personal interaction that would prevent the giving or the receiving of care. Rewards: The time of caring for an older parent or relative can be one of joy and enrichment. It can be a period of increased sharing, a renewal of that special closeness that has perhaps slipped away over the years; a time of rediscovering the family history. It can be a time for the healing of those old wounds left festering from childhood or adolescence. It can be a time for renewing old friendships or gaining wisdom from an elder. The majority of caregivers actually report that providing care makes them feel useful. Many anecdotal reports attest to caregivers' satisfaction knowing that their older relative is receiving help while remaining in the community. For many caregivers the giving of assistance is not a one-way street. Rather, it is part of a mutual aid pact, as approximately one fourth of caregivers report that the older person for whom they care helps financially or with household chores. It is easy to assume that conflicting roles as worker, wife, mother, for example, always increase stress. However, a study by Stoller and Pugliesi (1989) suggests otherwise. After reviewing the data of a variety of studies they suggest that these various roles can sometimes serve as an emotional resource for the caregiver, sometimes linking them to other social networks. Results of their study found that occupying multiple roles is associated with better health, lower psychological stress, higher self-esteem and greater well-being. There is a threshold, however, beyond which multiple roles become detrimental. Not Always Easy: The bulk of present research, however, presents a less positive picture of caregiving. For example, a study conducted by the Benjamin Rose Institute, (Deimling, Bass, & Jensen, 1987) found that four out of five caregivers indicated that some aspect of helping was difficult, tiring, or emotionally upsetting. Six out of ten - said they had no clear idea about what was best to do in the caregiving situation, while more than half said the person they cared for made too many demands on them.
A pervasive theme is found in the research centers on the burden and the stress of caregiving. The caregiving process can be a time of increased anxiety and difficulty, particularly when the responsibilities of working, marriage, child rearing and parental caregiving collide. When the demands of work, spouses and children are juxtaposed against those of an aging parent with many needs, severe emotional drain can occur. Some research even reports that although most caregivers feel "close" to their care receivers, an inverse correlation exists between the closeness of kin relationship and the ability to get along without rancor (Cantor, 1983). If there are prior family problems lurking in the background, such as abuse, neglect or denial of emotional or financial support, there can be a potentially dangerous situation because the caregiver who was abused now is in the position of power. Both Stoller and Pugliesi (1989) and Brody (1985) point out that many of the stress reported issues relate to aspects of either feeling totally responsible for caregiving or feeling guilty that not enough is being done for the care receiver. These aspects are as much related to personality issues as they are to family dynamics. From the literature on helpers, both formal and informal, it appears that some caregivers run a very high risk of stress due to certain personality issues. For example, there may be aspects of control, and need to be identified (by self and others) as the caretaker that are part of the individual's personality. Persons with these traits do not easily allow themselves to be helped. Instead, they may put themselves in the role of super person, not letting others know of needs or allowing others to share in the responsibility. It is important that informal caregivers be or become able to recognize and accept their own limitations and seek assistance when needed. Dependency of the older person on an adult child is often difficult for both and may reactivate family relationship problems, including reverse dependency issues. Brody (1985) associates this dependency problem to unresolved issues on the adult child's part, regarding his or her own dependency needs, thus relating this situation of caregiving to that of a parent caring for a child. It is Brody's (1985) contention that either case will lead to increasing frustration and guilt for the caregiver. Is it not surprising that interpersonal problems are frequently reported by caregivers? Family issues surface in a number of ways in considering the caregiving context. For example, the burden experienced by caregivers appears to be highly related to the number of informal social supports available from other family members. The family can thus be either a potential source of support or a cause for additional stress. Although family members may not share equally in the care of elderly persons, they are part of the decision making network. Family members who are excused from caregiving responsibilities are still considered, by both elderly persons and adult children, to be part of the decision making process regarding care arrangements (Cooper & Sheehan, 1987). It has been found that family support systems generally operate under the principle of substitution, in which family members are available in "serial order," rather than acting as a "shared functioning unit." Thus the caregiving experience burns out the first one, then another of the family unit unless they are wise enough to parcel out the tasks and provide one another with relief from the various duties. This assumes, of course, that there are others with whom to share the caregiving function in the first place. Caregiving demands often conflict with family members' individual perceptions and expectations of life and their respective roles such as future plans, privacy, vacations, money and social life. Relationships among spouses, adult siblings, and across generations are strained as members compete for attention and time, and which occasionally leads to the reactivating of old intra-family rivalries. Even stable family relationships and positive perceptions can become distorted as the demands of caregiving increase. The financial stress of caregiving may compound the problems of already burdened caregivers. The personal resources of both recipient and provider in a family caregiving situation may be seriously drained or devastated by prolonged need for care. Financial compensation for family caregivers may come from insurance or benefits of organizations the elder has belonged to, such as the Aid and Attendance Allowance from the Veterans Administration. Federal Child and Dependent Care Credit provides limited tax credit and some state programs reimburse family members for care, again in a very limited fashion. Decreases in services toward private pay clients, making these services even less available to those with low income. Most Stressful Aspects of Caregiving: The most stressful aspects of caregiving reported are caring for an incontinent elder and/or one suffering from dementia. It is the personal care, such as bathing, that is most burdensome. The level of support given by other informal or formal caregivers is very important. Much of the stress reported relates to becoming time restricted and adjusting to severely limited social interaction. Symptoms of depression, anxiety, feelings of helplessness, lowered morale and emotional exhaustion are quite commonly cited. Caregivers assisting Alzheimer's victims, in particular, reported three times as many emotional stress symptoms as the general population. It is far more difficult and these caregivers are three times more likely than the person in the general population to take psychotropic drugs. People caring for a relative with Alzheimer's disease have particular difficulty with fatigue because one of the effects of the disease is that the older person stays awake at night and wanders. Structuring the environment and time of the older person, and using a support network to give the caregiver a break, can be essential. Twelve percent admitted that they used alcohol as a way of coping with the strain. Often the caregiver is faced with the clear decline of health and impending death of the person they care for, raising the issue of anticipatory grief. The closer the bond between caregiver and receiver, the more stressful the specter of death. It is far more difficult to deal with the decline and/or loss of one who is close than one whose state can be seen more objectively, as in an institutional setting. Regardless of how close the relationship, proximity to the death process may be more stressful to the informal caregiver than to one who, by training or experience, is better prepared for this eventuality. Risk Factors: The caregiving role may well be a 24 hour job with unpredictable ups and downs that keep the caregiver in a crisis framework. This in itself is stressful and draining. The emotional well-being of the caregiver is important due to the effect it has on physical health and on the quality of communication and interaction. Many caregivers have difficulty getting away because they feel guilty or selfish. However, research shows that by caring for themselves the caregiver will provide better care. Breaks and significant periods of respite for the caregiver are most important tools for maintaining the health and well-being of the individual caregiver. The physical demands of caregiving can be as difficult as the emotional problems. It is important to look at what caregivers can do to support themselves physically, because much stamina and energy are necessary to provide care over a long period. Even in the best of situations, family caregivers need emotional support and occasional relief. Several risk factors have been identified which may lead to or compound the stress of caring for an elderly adult. For example, gender plays a role because more woman are entering and staying in the work force longer, delaying childbearing, experiencing escalating divorce rates, and becoming single parents -- leaving them with responsibilities for several generations of caregiving. Relationships can be complicated. Conflict within families often initiates stress. Loss of loved ones, relocation, job/career changes (retirement, no advancement, increased workload), and financial burdens may be stressors. Current events or catastrophic illnesses or accidents will undoubtedly lead to difficulties. Lack of adequate rest, exercise, diet, recreation, and socialization may cause undue stress. When the responsibilities of caregiving are combined with the demands of employment, the potential for stress on the individual caregiver can become genuinely dangerous to health and other family relationships. In the worst case scenario the employed caregiver may have to choose between career and family or between care for the elder and responding to the demands of other family members. Signs Of Stress: Stress can take its toll in a number of ways. Signs of stress may be evident at one level -- or all levels -- of human experience. Physical: One may experience a decline or increase in appetite, gastrointestinal distress, frequency of urination, increased respiration, a pounding heart and dry mouth in reaction to stress. Typically the heart and respiratory rate increase and muscles tighten. Humans react to threatening situations by preparing for "flight or fight." The body responds by channeling energy and concentration to facilitate this. Emotional: In stressful situations, one may exhibit emotional instability (crying without cause or laughing inappropriately), anxiety, anger, agitation, irritability, indecision, apathy or fatigue. Behavioral: One may leave responsibilities unfulfilled either at home with children or on the job. Alcohol abuse or self medication may result. Neglect of personal hygiene may occur. In general, changes in reactions, habits, and performance may take place as stress increases. Reducing Stress: Fortunately, stress reduction can also take place at the level of thought, feeling, and action. Attention must be directed to one's physical condition through appropriate diet, exercise and rest. Pacing oneself with regard to time and demanding responsibilities may help. Delegating responsibilities to others during stressful times may be done by directly asking others to do specific chores. Ventilating feelings can be done through sharing with friends, colleagues or professionals by letter, phone or in person. Keeping a log or journal may be an effective tool for documentation. Inspiration and coping can be gained through educational efforts such as attending classes, workshops or conferences. Planning and organization, essential to effective coping, may then follow this gaining of information. Visits to museums, lunch with friends, shopping, vacations, the theater or even a simple picnic or walk can be innovative ways of treating oneself. Counsel may be sought through friends, colleagues, church or mental health professionals. During moments of stress one can use relaxation techniques, humor, and reading, as diversions. Individual caregivers must be attuned to their own needs and recognize what causes stress for them, its signs and what can be done to handle it. We all need to take care of ourselves.- REFERENCES:
- The above information has been modified from Mental Health and Aging, Bane, S. D., p. 103-107. To order this publication, write to the National Resource Center for Rural Elderly, UMKC, 5215 Rockhill Road, KCMO 64110-4299, or call (816) 235-1747.
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