| It is very easy to say that if you get sick, I will
take care of you. You tell that to your children and your
parents. But the reality of this is totally different. Long
hours/days sitting, waiting, no knowing what is going to happen.
You listen to your friends, your support groups, and hope. It
is difficult to sit helplessly by and watch a friend or loved one
suffer. Everyone tells you that you are a special person, that
they could not do it, that you are doing just fine.
But, in the middle of the night as you lay there in bed--the
demons come and tell you that this person that you care for should just
hurry up and die, continue on--then you wake up in total guilt.
Try as you may, you live in a world of guilt, not knowing, not being
able to assist, just watching and waiting.
It is very hard, all of it
98% of all marriages that have a partner who is chronically ill
end in divorce, because the stress of dealing with the total problem.
It is not easy.
Been there, done that. |
Although modern family and medical ideologies of the mid-1900s argued
the wisdom of greater reliance on physicians and medical institutions,
the emergence of chronic illness has led to a reassertion of the
importance of families in caring for the sick. Modern medical
interventions and technologies that have extended the lives of
chronically ill persons without affecting complete recovery have
increased the responsibility of families for caring for the sick. Many
chronic illnesses that once signaled early death (e.g., kidney failure)
or institutionalization (e.g., mental illness) can now be managed by
medical therapies administered in the home. Moreover, the escalating
costs of health care in most countries has led to restrictions on access
to physicians and medical facilities and fosters an interest in
self-care and family care. Providing
A young girl helps her friend with a blood sugar test. Both children
have diabetes. Informal support from friends and family reduces stress
and may ameliorate the physical symptoms of chronic illness. A/P WIDE
WORLD PHOTOS long-term care for chronically ill or disabled family
members can disrupt the normal functions of families, and it almost
always causes stress. Examining caregiving within the context of stress
theory, Carol S. Aneshensel, Leonard Pearlin, and Roberleigh Schuler
(1993) make a distinction between primary stressors, caused by
performing the work required to care for the sick family members, and
secondary stressors, problems that emerge in social roles and
relationships as a result of caregiving. This distinction highlights the
fact that caregiving work is not only stressful because it requires the
performance of difficult physical and emotional tasks—for example,
supervising, monitoring, encouraging, medicating, lifting, bathing, and
feeding—but also because of secondary stressors: marital discord, social
isolation, economic strains, and family dysfunction.
Family caregiving for children can start from birth and last
indefinitely, especially if the illness or disability prolongs their
dependency. Research indicates that about 20 percent of all U.S.
children have a chronic illness or disability, and 10 percent have
problems that create caregiving demands, including millions who are
disabled (Butler, Rosenbaum, and Palfrey 1987; Sexson and Madan-Swain
1993). The amount of caregiving work performed by family members ranges
from fairly minimal to extensive, depending on the nature of the
illness. Many children have "lived-with" diseases such as asthma,
epilepsy, or diabetes that cause episodic health crises, but can often
be managed on a daily basis through special diets, medications, and
changes in activities. Asthma, the most common childhood chronic illness
in the United States, affects five million children and is a growing
cause of sickness and death (Bleil et al. 2000). Asthma is episodic in
nature, causing periodic bouts of breathlessness, wheezing, and
coughing. A study of teenagers with asthma by Williams (2000) describes
the caregiving role of mothers as "alert assistants" who monitor and
supervise their children's compliance with medical treatments and manage
medical crises. On the other hand, illnesses like kidney disease, cystic
fibrosis, and spina bifida can be progressive and cause constant pain
and impairment.
A great deal of research has focused on children with cystic fibrosis,
the most common lethal genetic disease in the United States with an
incidence of 1:200 white births (Solomon and Breton 1999). Cystic
fibrosis, a progressive disease that leads to early death, requires
extensive caregiving work, including "oral medications and special
diets, aerosol therapy and bronchial drainage (prescribed two to four
times a day, requiring about an hour each time), exercise, and mist tent
therapy at night" (Patterson 1985). Providing such extensive care for
their children can place a strain on interactions between parents and
their sick children. C. Ruth Solomon and Jean-Jacques Breton (1999)
observed parents of young children (ages one to two) with cystic
fibrosis over a twelve-month period and found that, compared to parents
of healthy children, they were more controlling, more serious, and less
encouraging in their interactions with their children. Medical therapies
are complex, difficult to learn, and can occupy so much time that they
become the center of family life. They may also be risky and interfere
with normal parental behavior, which ordinarily centers on being
nurturing and supportive. One study of pediatric ambulatory dialysis
found that parents have difficulty reconciling parenting with the
administration of medical regimens:
Parents are asked to monitor the child's physical state intensely. They
are also told not to allow the child's medical problems to become the
main family focus. Parents are instructed that an error in the sterile
technique could result in their child's serious illness, yet staff is
also concerned that parents should not experience excessive anxiety.
Parents are asked to function as both medic and parent, and yet it is
also expected that the child will be able to progress through the normal
stages of separation and individuation (LePontis, Moel, and Cohn 1987,
p. 83).
In addition to the work and anxiety entailed in carrying out medical
tasks, parents must also address the psychological and emotional needs
of the child with chronic illness or disability. Although most children
with physical disabilities do not develop mental health problems, they
are much more likely to do so than healthy children because of greater
social isolation, alienation, and poor school performance (Patterson and
Geber 1991; Solomon and Breton 1999). Chronically ill children living in
dysfunctional families exhibit much higher rates of psychiatric disorder
than those living in well-functioning families (Bleil et al. 2000). Both
parents and medical experts endeavor to prevent these problems by
encouraging normal life experiences and bolstering coping skills,
self-esteem, and confidence of children who are chronically ill. Parents
must also try to maintain a sense of balance in meeting the needs of
their ill and healthy children.
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