For parents of a child with a lung condition, the role of caregiving can take on a whole new dimension. When we become parents, we immediately take on a caring role and most parents at some time have cared for an unwell child. However, for parents of a child with a lung condition, the impact of long-term parent-carer role can be profound.
Expert navigator and advocate
As a parent-carer, it will primarily be up to you to know and understand any special needs that your child might have, monitor their condition and decide when and where you take them if they have an exacerbation or deteriorate. You will provide education to family, friends and others involved in your child’s life, such as teachers and school staff, regarding what your child needs and any limitations they might have. You will become an expert at navigating the healthcare and education systems, and you will become your child’s chief advocate.
Whether you are able to maintain employment outside the home as the parent-carer of a chronically ill child will depend on many things, including the type of lung condition your child has, the severity, spousal or family support and financial circumstances. The challenges often mean a career will have to be put on hold.
Maintaining a career, as long as the demands and hours are manageable, can be a great way of keeping your sense of self outside of the parent-carer role. Flexible work arrangements are important to allow you to have time to attend appointments or if your child needs treatment, but these can be difficult to find. If you find yourself being pulled in too many directions because of the demands of your work, reassessing may be necessary. There is no right or wrong answer when it comes to working or not working; it will depend on your circumstances. If you do work, try to ensure you still have time and energy left for yourself and your family.
Remember me? I’m your spouse!
Having a child with a lung condition can add considerable responsibilities to the parent-carer role. The time and stress associated can significantly strain parents’ relationships. Finding ways to spend quality time together as a couple is an important step in making sure the relationship remains stable and fulfilling.
Finding a minimum of 20 minutes each day, free from distractions and solely focused on each other, is a great way to help keep relationships strong. Talk about things other than the kids and household chores; try to talk about things that help each of you feel heard, understood and valued. Keep an interest in your own and your partner’s dreams and hopes. Along with talking, doing things together that you both enjoy is fundamental to staying engaged with each other.
If you notice that things are getting a bit tense with your partner, it might be time to get some tips and strategies from a relationship therapist before any irreparable damage is done.
In addition to finding time to spend with your spouse, making time for your other children is also important. Family dynamics can be tricky to manage with the added requirements of caring for chronically ill child along with the usual family routines and schedules. It is normal for healthy siblings to carry an emotional burden in relation to their unwell sibling.
They might worry about the illness or treatment their sibling needs to have. Their imagination about the illness and the treatment will generally be far worse than the truth. This also opens up space for them to ask questions and to be reassured, using simple and age-appropriate language. Engaging them as far as is appropriate in medical or hospital visits and treatment helps them to feel part of the team.
Any change to their normal behaviour could indicate that they are not managing the situation well. Children can act out, become withdrawn, pick fights or show resentment. It isn’t unusual for the healthy sibling to wish they too were sick, in order to get some time with their parents. Letting teachers and their school know about their sibling’s illness can also assist in watching out for undue emotional stress and catching it before it becomes too much of a problem.
Regularly setting time aside for each of the children will help maintain good family dynamics and alleviate feelings of resentment. Let your other children know it is OK to ask for help, they are not being a bother, you understand they have needs too and as their parent, you want to know all about the things that matter to them as well.