“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.
By: LeAne Austin, RN