Caring for Siblings of Seriously Ill Children

Caring for a seriously ill child takes a tremendous toll on the whole family, and healthy siblings are no exception.

As parents, our exhaustion, stress, and uncertainty about how to respond to the needs of other kids can leave us feeling guilty and drain our reserves — and might tempt us to downplay or ignore the impact a child's illness may have on his or her brothers and sisters.

Knowing what healthy siblings are going through and taking steps to make things a little easier can let you deal with many issues before they unfold.

How Kids Might Feel

Family routines and dynamics naturally change when a child is ill, which can confuse and distress healthy siblings. Besides fear and anxiety over the illness, they often have the feeling of loss of a "normal" family life, and loss of their identity within the family.

It's normal for healthy siblings to:

• worry that the sister/brother will die
• fear that they or other loved ones will catch the sibling's disease
• feel guilty because they're healthy and can enjoy activities that the sibling cannot
• worry that something they did caused the disease
• be angry because parents are devoting most of their time and energy to the sick sibling
• feel neglected and worried that that no one in the family cares
• resent the sibling who never has to do chores
• resent that the family has less money to spend now because the sibling is sick
• be nostalgic for the past (wishing things could be like they were before the illness)
• feel residual guilt for being "mean" to the sibling in the past
• experience generalized worry or anxiety about an uncertain future

The way siblings express their needs can vary greatly — some may act out, some may try be the perfect child, and many will do both.

What to Look For

Pay attention to any changes in kids' behavior, and talk to them often about how they're doing and what they're feeling. The more room kids have to express their emotions, the less emotional upset and fewer behavioral problems they're likely to have.

Signs of stress in kids can include any changes in sleep patterns, appetite, mood, behavior, and school functioning. Younger children may pick up on parental stress and show regressed behaviors (doing things they did when they were younger and had already outgrown).

Even if you don't see any signs in your kids, you can be pretty sure that changes to their routine and seeing their parents and other family members upset is likely to be causing them stress.

Ways to Help

While you may not be able to take away the source of your kids' emotional pain, you can help ease their stress and make them feel secure, cared for, and supported.

These suggestions might help, but it's also a good idea to find support (through counseling, a hospital support group, etc.) to help you take better care of all your children.

First, look forward. If you find yourself feeling guilty for not being a perfect parent to your healthy children, don't beat yourself up — dwelling on the past is not productive. Instead, try to make a point of recognizing your kids' feelings and needs now, and move on from there.

Keep the lines of communication open. Pay attention to siblings' needs and emotions. Encourage them to talk about their feelings — the good, the bad, and the guilt-inducing — and try to read between the lines of their actions. This can be difficult when you're exhausted, stressed, and away at the hospital or clinic for long periods of time, but a little attention and conversation can let your healthy kids know that they're important and their needs matter.

Keep it "normal" as much as possible. Try to maintain continuity and treat your kids equally. Stick to existing rules and enforce them; besides minimizing jealousy and guilt, this also sends a strong optimistic message about your sick child's recovery. And try not to fall into the trap of relying on healthy kids as caregivers before they're ready. Accept help so that your healthy kids can stick to their typical routines as much as possible.

Say yes to help. Accepting help with transportation, meals, childcare, and other daily activities can take some pressure off of you so that you have the emotional reserves to be there for your family. You'll also be teaching your kids a valuable lesson about accepting generosity from others.

It's OK to have fun. Enjoying yourself and having fun (for a change) can go a long way toward relieving stress and recharging your battery. In addition to trying to keep a normal schedule of activities, whenever possible set aside some time for your kids to spend with friends and family without focusing on the illness. You also can set aside one-on-one time with your healthy kids where the focus is on them and everything that's going on in their lives other than their sibling's sickness.

Be patient with regressive behavior, especially on the part of younger kids, who may have trouble making sense of emotions. At a time when parents' nerves are frazzled, it can be hard to stay patient and attentive, but it's essential for siblings. However, it's not a good idea to let kids — healthy or sick — behave inappropriately or get away with behaviors that you would not have allowed before the illness. Rather than make a child feel relaxed, this can increase anxiety, jealousy, or feelings of abandonment.

Include siblings in the treatment and care. Including healthy kids in some of the doctor visits and hospital sessions can help demystify the illness. They also can benefit from connections to other patients' siblings. And giving healthy kids specific, non-threatening "jobs" can help them feel like an important part of the treatment process. Encourage their involvement and let them lead the way — maybe they want to help with physical therapy, for example, or make cards, books, or videos to keep a hospitalized child connected to life at home and school. Many hospitals offer sibling counseling groups, workshops, and other programs that can help your healthy kids feel less alone.