Having a sibling with a chronic or terminal illness can have a lasting negative impact. Here are some suggestions for helping your other children cope with the illness of a sibling.
Growing up as the sibling of a sick brother or sister is difficult. In addition to much of your parent’s attention being directed toward the child who is ill, there is also a lot of worry and uncertainty in your life.
One of our daughters, Miss Optimism, has a chronic health condition that at times, has kept our family hostage. To believe that her condition has not impacted our other children would be naive. We have had to cancel family vacations when her condition was unstable. Even our daily plans and routine are never guaranteed because of the uncertainty her health involves. There have been periods of our lives, including an eight month block, when my attention needed to be focused on keeping her alive. When that is my focus, it only stands to reason that the other kids miss out on my time and attention. If I am not careful, their resentments will start to build towards me, and towards their sick sister. There are some steps that you can take to preserve your family and protect your other children, even while dealing with the demands of caring for a sick child. So often, we take care of the most immediate issue, which is the health of that one child, without considering the impact the situation is having on the mental health of the rest of the family members.
Have them help. You do not want your other children to have to slip into the role of caregiver for their sibling, but having them help with small things pertaining to their sibling’s care will help them to feel involved. Helping will also give them some time with you and give them the opportunity to ask questions and learn more about their sibling’s health condition. It also will give them more empathy towards their sibling if they see what type of treatments they go through. I sometimes ask one of my sons or other daughters to carry my daughter’s medication bag to me. I use this opportunity to praise them for their help and also to tell them what the medications are for. Each time that my daughter goes in to the doctor for injections, she chooses one sibling to go with her. She likes to show them how brave she is when she gets her needles and they like to go because they get a lollipop from the nurse afterwards and get to spend some time with me.
Talk openly. This is by far the most important thing. If you take nothing else away from this article, please remember this. Children have very active imaginations and they will imagine things that are far worse than the reality. Thinking that you are shielding them from the truth by not telling them or by only telling them certain things is misguided. Of course, you will need to determine what to share based on the age, maturity and personality of the child. You can ask a doctor or therapist for their advice on this or take cues from your child.
Having a brother or sister who is sick is scary and they are probably already imagining the worst case scenario and living in fear. Be honest with them. By sharing as a family what is really going on, you will also open up the doors so that your child will be able to ask you questions and share their fears with you. Children commonly assume that they will also become ill with whatever condition their sibling has, but do not express this unless you open the door for that conversation to happen. If their sibling is terminally ill, talk about the possibility that their brother or sister could die. Ask them how they feel about that and give them the opportunity to do or say what they need to.
Spend the time. Having a sick child feels like it takes up all of your waking (and non-waking) hours. It also feels like it takes up every ounce of your energy. Sometimes the thought of trying to make extra time for your other kids just feels like too much. But it is imperative that you do. You need to find a way. That could mean that you utilize a babysitter, respite service, or a relative to care for your other children or that you just allow one child to stay up later than the rest on a rotating schedule so that they will have one-on-one time with you. You can also spend time with them while you are caring for your ill child by involving their help or bringing them to appointments with you.
At one point, our daughter was going to see her specialist at least three times a week for months. When I would take her to those appointments, I would be gone for at least four hours. That kind of time away from the rest of the kids takes its toll. By bringing one of them with me to the appointment, I also took some of the mystery away. They no longer had to wonder what I was doing when I was gone to these appointments because they had each been there. Of course, time with the other kids is not always possible such as when our daughter is in the hospital, but them seeing that I am making the effort when I can goes a long way with the kids.
Get professional help. Having a child with a long term illness takes a toll on the whole family. Being aware of the impact that it is having on your other kids is a good first step, but that may only add to your guilt that they are not getting a “normal” childhood. There comes a point when you cannot cope alone. Get your other children in to see a therapist, enrol them in group therapy where they can talk to other kids who also have a sibling who has an illness, or check with your local hospital to see if they have any sibling programs. They often do. Some of the sibling support groups will be very specific, such as ones where all the kids have a sibling who has cancer. The more specific programs are generally better, though any therapy or program specific to siblings is probably better than none.
Books. There are many children’s books available that confront the things that may be scary to your children. There are books on hospital stays, doctor’s appointments, sickness, and even death for children of all ages. Choose books that are age appropriate and remember to also read them to the siblings of the sick child, not just the sick child. We often remember to read a book on going to the hospital to the child who will be going, but forget that their siblings may have fears as well and would benefit from learning more about it.
Children’s books about going to the hospital:
Going to the Hospital Sticker Book
Franklin Goes to the Hospital
Going to the Hospital (this one has pictures of real people which I like)
Children’s books about going to the doctor:
The Berenstain Bears Go to the Doctor
Going to the Doctor Sticker Book
Say “Ahhh”: Dora Goes to the Doctor
Children’s books for siblings:
When Molly was in the Hospital: A Book for Brothers and Sisters of Hospitalized Children
What About Me?: When Brothers and Sisters Get Sick
When Someone You Love Has Cancer: A Guide to Help Kids Cope
Ask for help. Ask for help from those around you so that you will have more time to devote to all of your children. Many churches have programs where they will deliver meals to families who are dealing with illness or loss. They also may be able to get volunteers to come in and clean your house or sit and read to your ill child while you play with your other children. You cannot do this alone. Ask for help from your community, your neighbours, your friends, your church, and your family.
Our favourite read-alouds for kids:
This theme made the evening so much fun! We laughed a lot. It also worked really well for all the different age groups from our youngest child right up to us adults. One of the things that makes these games so versatile is that they can be used with groups of all ages.
