How to care for your chronically ill child

Finding out that your child has a chronic condition can make you feel sad, guilty, angry and powerless. And keeping up with your work and family demands while juggling doctor’s appointments, medication adherence, special care needs, surgeries, medical bills and the fact that your child is sick can be stressful and time-consuming.

These disruptions can make you feel emotionally, mentally and physically drained. And, this can be worsened by your child being highly irritable and clingy because they are scared and in pain.

However, there are ways to live a holistic and balanced life while caring for a child with a chronic condition.

Understand the diganosis

The news about the chronic condition will unexpectedly change your life. And during this time, it’s important to have an in-depth conversation with your doctor to find out more about the lifelong condition. According to Dr Musa Buthelezi, some of the common chronic conditions in children are asthma, diabetes, epilepsy, cancer and attention deficit hyperactivity disorder (ADHD).

“My 10-year-old daughter has been diagnosed with epilepsy, and I’m so overwhelmed that I don’t know what to do,” shares Sihle Zulu. Dr Musa advises Sihle to have in-depth conversations with the doctor about the lifestyle changes that her daughter will go through, and educate herself about the condition.

“A child with a chronic condition needs to be informed about their illness as well as medication, tests and surgeries that they might have to undergo,” says psychologist Tracy Smith. Knowing the symptoms and possible triggers can help you handle the situation better. Dr Musa adds that your child needs to take medication every day to prevent seizures and also can’t participate in extreme sports. “Communicate the lifestyle changes and medical needs with your family, friends, school and childminder.”

Adapt to the changes

Being stressed about your child’s condition will make matters worse for both of you. So, rather focus on accepting it and making the necessary lifestyle changes.

“My son was diagnosed with asthma. We are now both depressed because he can no longer play sports that he loves so much,” says Zoleka Khumalo. The lifestyle changes can be heartbreaking, making you both feel defeated. “Zoleka needs to accept and embrace her son’s condition as this will encourage him to do the same,” says Tracy.

Some chronic conditions can be managed under close supervision. “Playing sports can strengthen his lungs, but he has to be closely monitored. You need to share an asthma action plan with information on what to do should he have an attack with his coach and teammates, so they know what to do in case of emergency,” advises Dr Musa. Some parents dread going anywhere with their child because they fear the worst.

“You can’t isolate your child; you have to be adaptable and find a way for both of you to still lead a well-rounded life,” says Tracy. Try to lead a normal and balanced life despite what you are going through. Also, advise your employer about what you are going through so they can put plans in place to help you.

Overall emotional well-being

Dealing with a chronic condition can take an emotional toll on everyone involved. As the lifestyle challenges emerge and your child’s health deteriorates, everyone around them may start feeling depressed. “My 17-year-old daughter is HIV positive, taking ARVs and in good health. But, she is depressed,“ says Siyabonga Nene. You can’t only focus on treating the physical aspect of the condition; you also have to treat your child’s emotional well-being.

“You have to give your child emotional support by encouraging them to express their feelings, and seeking help from a psychologist to help them unpack everything,” advises Tracy.

Additionally, the emotional well-being of siblings has to be considered as they are also affected. They too face emotional strain and could end up feeling neglected because a lot of attention often goes to the sick child. “Talk to the siblings about the implications the sickness will have, and urge them to be supportive. Also encourage them to continue with their normal family routine,” she says.

Additionally, spend quality time with each of them alone so they still don’t feel left out. Keep in mind that the stress that will come with your child’s condition may be overwhelming for you, and put strain on your relationships or marriage. “Ever since my child was diagnosed with bone cancer, my husband and I are always fighting because we are both stressed and overwhelmed,” says Diseko Zakwe. It is normal for parents to feel this way, and Diseko needs to find help so they can better take care of their child. “They can join family or religious support groups, and speak to a psychologist or ask friends and family for help,” advises Tracy.

Ask for help

You are not alone; other parents are also experiencing what you are going through. So, reach out and ask for help when you feeling overwhelmed. “Find a support system by asking for help from physicians, psychologists, social workers and other parents going through the same situation,” says Tracy.

Tips from the experts

• If your child is hospitalised, bring their favourite blanket or toy to comfort them during their stay.
• Keep them entertained with low-energy activities when they are sick.
• Compile a medical emergency telephone list and action plan, and share it with their childminder as well as family and friends.
• Have a strict treatment schedule and encourage adherence.
• Work closely with the school and provide the teachers with your child’s medical condition.