How can a parent handle having to make difficult medical decisions for a child who has chronic kidney disease?
Parents do not have to make decisions about medical care alone. A team of health care professionals is there to help make these decisions, based on the most up-to-date information. The choices are not always easy, and no one can predict the future. Parents always wonder whether they are doing the right thing. It is important to remember that there are no right or wrong answers. Parents must take comfort in making the best decision possible along with the health care team members. Talking this issue over with other parents of children with chronic kidney disease is helpful.
How can the parents of a child who has kidney disease handle discipline?
All parents worry about how best to raise their children. When a child has a chronic illness, this issue becomes even more difficult. Giving in to the child’s every whim, or not expecting the child to have any responsibilities in the home, can often create short-term as well as long-term problems. Children need limit-setting, even though they may argue and become angry. Parents who give in all the time may be creating a demanding, spoiled and undisciplined child. Disciplining a child who has kidney failure is not an easy task for parents. Although parents feel worried and protective, they must consider the child’s development, and think in terms of trying to maintain as normal a home environment as possible. Other children in the family will notice and be affected by how the child with kidney failure is treated.
Talking with other parents who are in a similar situation is helpful. Becoming involved in a parent support group might help lessen anxieties and concerns. One of the most important things to keep in mind is that there are no right or wrong answers. Parents should remember that they are doing the best they can.
How should parents talk to their child about the death of a close friend in the dialysis unit?
Most people are naturally uncomfortable in this situation, which fortunately, is not common. Talk with the social worker and nurse at the unit to see how they handled telling the other children. Parents should not deny the event for fear of making their child more afraid or unhappy. Although the child may not mention the death, it has not been forgotten; the child may be waiting for you to start the discussion. Generally, children can express their feelings if given the chance. It is important to allow enough time, as one discussion is generally not enough. Parents should be aware of their own feelings about this loss.
Anyone involved with the child who died will feel upset and will need to talk. Communication should be kept open with your child and with the staff. You and your child may need to talk with the social worker if your child’s sadness or fears become too hard for you to handle alone. If you are concerned about how your own child is doing medically, you should seek assurance from your doctor.
How should parents explain kidney disease?
A parent’s kidney disease can affect his or her children’s lives. Discussing the illness and treatment openly with the children, at a level they can understand, can help prevent them from developing fears and misconceptions. Children may dwell on “terrible” things they have done or said and blame themselves for their parent’s illness, which can cause problems in the future.
Often, children may begin to behave differently after the parent is diagnosed with kidney failure. Sometimes, they begin to act like “little adults” or “perfect angels.” Other times, they begin to misbehave and have problems in school. These are ways children cope with a parent’s illness and their fears about that illness. A parent who feels unable to talk to the child should speak with a social worker at the dialysis unit or transplant clinic. The social worker may be able to help both parent and child learn how to talk openly about the treatment and fears related to it. The social worker may refer the family to a family therapist or the child to a child therapist.
Can the responsibility of helping a parent who has chronic kidney disease be harmful for a young child or teenager?
Although children or teenagers may be glad to help a parent who is learning to adjust to life with a chronic illness (and sometimes with an associated disability), this can cause problems in the long run. The youngster may begin to feel responsible for the parent, leading to a reversal of the usual parent-child roles. When the parent has problems, the child feels at fault.
In growing up, a child must learn to separate from the parent. This becomes a difficult task in situations where the parent has a chronic illness because the child may feel he or she is shirking the duty to help. In some cases, the child may rebel against the illness entirely, causing severe family problems. Rather than overburden a child, the parent should seek help from a friend of community agency. Public health and social welfare agencies as well as local health agencies may be able to provide help with personal care and housework. This allows the child to grow up normally with the parent still in charge and in the parent role.
What is the best way to help an elderly parent who has chronic kidney disease?
The experience of having an older parent with chronic illness can be difficult. A person who has been independent may find it difficult to accept declining health. However, some people may be quite capable of being independent while on dialysis, and their adult children may be offering help before it is needed. In many families, a slow role-reversal occurs as aging parents become more feeble and dependent. Treating them with dignity and respect while, at the same time, taking more responsibility for their care, requires a delicate balance of patience, sensitivity and frankness.
Often one of the adult children becomes the primary caregiver of the parents, either by proximity or a choice to have the parent move in. This can be a burden if the other siblings are not a source of support and help with at least some aspects of the care provided.
Having everyone in the family talk about what is happening can be helpful. A social worker may help facilitate a family meeting if family members have a hard time talking together. The ideal situation is having the family pool all its resources, rather than for one person to carry the load. Joint planning for everyday needs such as cooking, cleaning, transportation and paying bills helps to ensure wise use of family resources.
Adult children can help by going to meetings at the dialysis clinic, learning about kidney disease and its treatment and allowing the parent to talk freely about concerns. They can also help the parent in dealing with the confusing number of agencies, interviews and medical regimens. They should also encourage the parent to continue with as many normal activities as possible, such as church attendance, senior citizen programs, hobbies, travel and visiting with family and friends.
What should the family do if the patient is not following medication and diet guidelines?
Families often confuse love with taking care of the patient. Even with the best of intentions, they can keep the patient in the “sick-dependent” role by taking too much responsibility for the patient’s behavior. Generally, patients have a greater feeling of self-worth when they take control of their own behavior. The following suggestions can help to avoid this problem:
- Family and staff need to realize that the patient has the illness as well as control over intake of food, fluids and medication. No one else can assume this control.
- In many cases, the patient will begin to comply if the family clearly states concerns and limits of responsibility and then backs off.
- Being a good caregiver is viewed as loving. However, struggles with the patient over diet, fluids and medicines are often mixed with needs for power and control; feeling responsible and “better than” the patient. This, in turn, makes the patient angry and even less cooperative.
- Family members need to make sure that they are not making it more difficult for the patient to stick to the treatment by offering food or liquid not included on the diet.
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