"It’s my responsibility,” he told
me. “We’re family.” His name is Joel and he is 11. His
13-year-old brother, Scott, feels the same way,
explaining that it’s “just something you do, you take
care of each other.” This is not an uncommon theme in
children when they live with someone who has a physical
disability or a chronic illness. Whether it’s a parent,
step-parent, grandparent, sibling or non-relative,
children also take on the role of caregivers, though
this role is frequently less distinct than that played
by the adults in the home. However, children are no less
affected by the life changes that come with caring for
someone with chronic illness or disability, and
recognizing the effects that this situation has upon
them is the key to helping young people cope with the
stress and uncertainty that often accompanies it. This
may be particularly challenging since much of the time
the person needing care is a parent..
“Disability” and “illness” can take
many forms, from a sudden injury which forces changes in
mobility, such as a spinal cord injury or fracture of a
limb, to more insidious medical illnesses like MS,
rheumatoid arthritis, or cancer.
Alcoholism and drug abuse are also
forms of illness which have their own unique
reverberations in the household, and each has effects
upon the child in different ways. The way each child
reacts and copes with the medical situation is largely
based upon their personality and prior life experience.
According to one person interviewed who was a caregiver
for her mother and siblings following her father’s
death, “you get through it.” Now a Social Worker,
she feels that “those who are not ‘strong enough’ may go
on to marry early to get out of the situation, or find
themselves in unhealthy relationships” where they are
dominated by a stronger personality. She also
stated that “it’s just what you do,” and this is a
common comment made by those who found themselves in a
caregiving role when they were young.
Caregiving takes many forms, from
helping with younger siblings to performing household
tasks normally completed by an adult, such as cooking or
providing personal care to the disabled or ill person.
Often, the receiver of the care is an adult, which
places the young person in a precarious position of
being a child, essentially performing parental functions
for an adult. This can result in role conflicts within
the child, and changes the dynamic in the parent-child
relationship. In interviewing those who had entered into
the role of caregiver at an early age, it was notable
that none of them initially indicated feelings of
resentment at their situation. Like Joel and Scott, it
came as part and parcel of being a family, but there is
a cost.
Despite this
apparent acceptance of their
ill-defined role, children demonstrate recognizable
physical and emotional responses to their situation.
These can include, but are not limited to: changes
in social behaviors, decline in school performance,
decreased participation in previously enjoyable
activities, mood disturbances, increased fatigue,
personality changes and “escape” behaviors, such as
self-isolation. Changes in social behaviors can be
seen in the way they interact with both adults and other
children. Some use more adult language, engaging adults
in social situations rather than persons of their own
age, while others appear to regress or demonstrate
attention-seeking behaviors such as baby talking,
excessive crying or thrill seeking. School performance
changes can result from preoccupation or worry about the
ill or disabled person, though this is generally more
prevalent at the beginning of the changes at home than
when the situation is long-term. Behaviors which are
disruptive in social situations affect school, as well,
and the child may talk in class, become tearful, or pull
pranks which land them in the principal’s office, or
which require that the child be sent home, as a
conscious or unconscious attempt to regain their child
role.
Children generally tend to be
self-focused. With the addition of the illness or
disability, that focus necessarily and abruptly changes
to one of helping others. Rather than indulging in
their usual enjoyable activities, they may decline
invitations for age-appropriate activities because they
need to “go home and help mom” or whoever they are
assisting at home. This increased sense of
responsibility, though somewhat overdeveloped due to the
unique situation in which they have been placed,
overtakes the drive to seek personal enjoyment.
Mood swings can also be
evident in some youngsters. A sense of loss of control,
fear, or guilt that they may have been the cause of the
illness, or if they have suffered a significant loss can
manifest themselves in very strong feelings. Incidents
that would not have warranted even a mild response can
become gigantic and the focus of these strong emotions
may result in verbalized and sometimes displaced anger.
This anger is rarely directed at the object of the
feelings, however, which makes it difficult to diagnose
and, subsequently, challenging to address. And, as
children have generally less sophisticated ways in which
to communicate their feelings, they may express them as
behaviors.
Fatigue can be an emotional or
physical manifestation, with the pressures of school,
combined with greater duties in the home, and the stress
of taking on a parental role in the care of the ill
person. The child may not fall asleep easily, have
trouble staying asleep, or wake up early, “thinking.”
Personality changes can be related to sleep disturbance,
internalized guilt or resentment, response to stress
chemicals in the body, or a change related to how the
child “thinks” they should be acting. Assuming the role
of caregiver plays directly into the role-conflict—am I
a child or am I an adult?
Escape behaviors such as reading for
hours, spending inordinate amounts of time alone in
his/her room, taking long walks, or plugging in a
headset is a means to get away from the demands of being
a caregiver. Although not necessarily a negative
behavior as it provides the child with an outlet, it can
be detrimental if it adversely affects the child’s
ability to relate to others or interferes with concrete
interactions. Since feelings of isolation can
already be present in the situation, self-isolating
behaviors may reinforce the feelings of being alone and
can potentially lead to significant depression, which
compounds the already-present feelings of loss. Most
children get through what usually amounts to a brief
time of caregiving without lasting, negative effects.
Generally resilient, most children adjust adequately to
the temporary life change and go on without residual
problems. It is important, however, to recognize
that children grieve, too, and that grief is not limited
to death and divorce; life changes of every kind can
elicit a grief response, which is just as powerful in
children as in adults, and is generally less understood.
Like adults, children grieve in their own ways.
Many of the emotional and physical changes that are seen
as attributed to adjustment problems or reactions to
being a child caregiver are, in fact, indicators of
grief. Being unable to effectively express these
feelings, or lacking the ability to understand what they
are feeling, increases the frustration and isolation.
Former child caregivers have related
that once they reached adulthood, they found themselves
sometimes emulating caregiving in their personal and
professional relationships. Many that I interviewed
chose helping professions such as nursing, Teaching or
social work. This is consistent with the personality
traits required of a caregiver of any age. Knowing the
effects of caregiving on a child, we can better
understand how to help our children cope with the
intense feelings associated with living with someone
else’s illness or disability.
First and foremost, communicate with
the child. They need to know that they are not
responsible for the adult’s or sibling’s condition.
Guilt plays a significant role in a child’s desire to
step into the caregiving role. Providing simple
and understandable information about the condition, and
answering their questions, goes a long way to resolving
guilt feelings, as well as easing fear based on the
“unknown.” Scott said that though he sometimes was
afraid that his mother would die, he did not share his
feelings with Joel. He explained,”I don’t want him
to worry any more than he already does.” Scott was
dealing with the “unknown,” while protecting his brother
from it; however, he didn’t realize that Joel was doing
the same thing. It is OK to talk about the illness
or disability, but don’t make it dinner time
conversation every day. Children are very aware of
changes in their environment and usually know, without
being told, that something is “wrong.” Talking
about every ache and pain only reinforces that the
parent needs “help,” and further engages the child into
the caregiving mode. Instead, talk about everyday
things. This reassures the child that the life
they know is still going to go on, despite the change in
health of their family member.
Second, though it is often easy to
accept the help of others when we are ill, it is vital
for children in this type of household to have the adult
remain as independent as possible, and that they rely on
available adult help. This diminishes the
role-conflict that can arise when children take on adult
responsibilities. Utilize the children in
performing age-appropriate tasks, such as folding their
own clothes, feeding pets, taking out the trash or
loading the dishwasher, and save the more adult
responsibilities, such as medication administration,
dressing changes, and providing personal hygiene, for
the adult caregivers. Utilize outside resources to
supplement in-home care to keep child caregiving to a
minimum.
As difficult as it can be when
illness or disability enters into a home, there needs to
be equal focus on both the needs of the child and the
needs of the person who is ill. Achieving a balance
between each person’s needs allows the child to focus on
age-appropriate issues such as school, interactions with
peers and personal growth, without nurturing feelings of
guilt over not “doing more” with respect to the ill or
disabled person in the home. Verbalizing interest
in the child’s life provides positive reinforcement for
development of interests outside the home. This can also
help to decrease mood changes associated with fear or
loss of control, as they have the opportunity to succeed
outside the home environment with the support and
approval of those in the home.
Escape behaviors come into play when
the child has to devote a large amount of time
providing care for the ill or disabled person, or is
having difficulty coping with the change in role. A
means of coping, these avoidance behaviors serve to
de-stimulate the child and insulate them from their
feelings. By changing their role from “caregiver”
to one of “member of the household,” there is no need
for avoidance of what could be an intensely emotional
situation. Though normal self-isolation behaviors may
occur, they are less likely to be in response to
feelings of stress related to the illness or disability.
Children are affected by illness in
the household, just as it affects others in the home.
When young people are put into the role of caregiver,
there can develop a role-conflict and changing dynamic
in the parent-child relationship that can manifest
itself in both emotional and physical ways.
Understanding the effects of this situation, the grief
associated with the change in the home environment, and
the stress response in the child can aid in making
changes in the expectations of children in this setting,
and help them cope and respond in a more positive and
age-appropriate manner to this unique and challenging
situation. Joel and Scott agree with this. How do I
know? I am their mother; I have fibromyalgia and I
had a stroke at the age of 37.
LeAne Austin is a freelance writer and
has been a caregiver for her mother for the past seven
years.
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