Pre-flight instructions on airplanes tell parents to put on your own oxygen mask first in an emergency, before helping your child. The principle is the same when coping with your child’s illness: if you don’t look after yourself, you won’t be able to take care of your child either.
As a parent, caring for your child with a chronic health condition may involve several things:
- adjusting to a new reality that has been thrust upon you
- understanding and adjusting to any new limitations
- talking to people who are supportive, including family, friends, the health care team, and support groups
- educating yourself about your child’s condition and the care your child requires, using resources like the AboutKidsHealth Health A-Z and Resource Centres
getting organized so that you can easily keep track of your child’s needs
- building a solid relationship with members of your child’s health care team that enables you to feel comfortable asking any questions and to trust that the team has your child’s best interests in mind
- informing others (family, friends, caregivers, school) about your child’s situation so that they are also able to assist you in caring properly for your child
getting help while your child is in hospital so that other children are cared for and practical needs are taken care of
- putting systems into place at home, at school, and other places to make it easier to care for your child and manage this new situation
- finding ways to relieve the stress that naturally occurs when adjusting to any new situation
Stress relief approaches for parents
Here are some approaches that might help you to manage stress while caring for your
child with a chronic condition.
Talk to others
Talking to someone you trust and rely on is one of the best ways to deal with your feelings. This can be a family member, friend, support group, social worker, or other helping professional.
Share the responsibilities
Whenever possible, it is helpful if both parents are involved with health care routines. Feelings of resentment, fatigue, and stress can build up if one parent has to do all the planning and work. Working together to care for a sick child can help to prevent "burnout" by sharing the load. Giving each other time away from care duties can provide much needed breaks. It can also help to plan time together, apart from your child or children, just as you did before.
In single-parent families it can be helpful to try and arrange for another family member or a close friend to help with your child’s care from time to time. Maybe they can provide relief by babysitting. Ensure that babysitters and other caregivers know how to care for your child with a
chronic or complex health condition.
Use respite workers
Respite care is a
community health service that can provide temporary relief from the physical and emotional demands involved in caring for a child with a chronic health condition. Respite services provide parents and caregivers time for themselves while providing their children with opportunities to meet with other children or become involved in the community.
Attend community health support meetings
For some parents,
community health support groups are a good place to express feelings, frustrations, and worries, and a good opportunity to learn how other parents of children manage some of their more difficult situations. Talk to your child’s doctor, nurse or social worker for information about support groups for parents, children, or their siblings. If you are more comfortable speaking to someone one-on-one, you may be able to find another parent through the treatment team.
Maintain good physical health
Healthy eating, sufficient sleep, regular exercise, and opportunities to engage in activities that help you relax are important factors in maintaining your good health.
Relax and take time for yourself
As difficult as it may seem, try to make some time for yourself and your spouse or partner each week to reduce your stress. Sometimes caring for a child with a complex health condition may seem to take up every minute of every day. You might feel as if you have no time for the things you have always loved to do: read a book, take a walk, or go to a movie. Taking this time can really help to refresh yourself so that you can continue caring for your child to the best of your ability. You might have some favourite stress relief practices already. You may also wish to try one of the following:
- massage therapy
- walking, yoga, or other exercise
- prayer or meditation
- warm baths
- watching movies or television
- pursuing a favourite hobby
See a counsellor (family or individual)
Sometimes the stress of a child's seizures feels so overwhelming that the coping strategies that have worked for you in the past, during difficult times, are no longer working. If this is the case it may be helpful to speak to a counsellor such as a social worker, psychologist, or psychiatrist. You may wish to do this on an individual or family basis. Speaking to a counsellor may offer you and your family an opportunity to talk about your situation with a neutral third party and work toward identifying strategies and finding solutions to some of your difficulties. Children's hospitals and clinics usually have a social worker on staff to assist families in dealing with the impact of a child with a chronic health condition in their lives.