CAREGIVERS: REWARDS AND
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
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
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
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.
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.
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
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
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,
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
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.
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
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.
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
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.
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.
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.
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.
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.
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.
The above information has been
modified from Mental Health and Aging, Bane, S. D., p. 103-107.
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