Living with uncertainty and fears of the future
As the parent of a child with a serious medical illness, you’ve likely faced many moments of great fear and worry. You may have found ways to push aside your fears to care for your child or to cope personally. Or, your fears might be a part of your daily life. For some parents, living a life where the future is uncertain starts when their child is born or even before. For others, living with worry and fear that their child might die may be a new and overwhelming experience.
Grief is an emotional reaction to a death in your life. But grief is also a reaction to other kinds of losses that you have all through your life. You and your child will grieve when your child loses good health, independence, previous routines and the ability to do normal activities and have a good quality of life. You will grieve when you think about, or anticipate, the negative changes that are going to happen. If the changes actually happen and you have another loss, you will grieve again. When you expect or anticipate a loss, it’s very normal to have a lot of fear and other strong feelings about this unwanted and uncertain future. (Centre for Loss, Allan Wolfelt, 2020)
You might be afraid or worried about:
- Your child’s wellbeing
- Your child’s experience of suffering or worry
- If the healthcare team can meet your child’s and family’s needs
- Impact of the illness on siblings
- If your family life will ever feel okay again
- How your child’s death will affect other relationships
You may worry about what will happen after your child dies: What will my life feel like? Will I be able to cope? Will I want to die too? Will I survive the loss of my child and if I do, will my life ever feel okay again?
The death of a child may change relationships with friends and family. Other people will struggle to know how to support you. Some may choose to pull away because they don’t want to offend you or hurt you by mistake. You may have gotten to know other families who face similar hardships. You might worry about how your child’s death will affect families who continue to hope for good outcomes for their own children. You might worry about not being part of that community in the same way. There are no clear answers to many of these questions. It may help to share your fears and worries with others.
The many feelings of living with the unknown— sadness, worry, anger, anxiety— can quickly feel overwhelming. You may find yourself thinking a lot about “worst case” outcomes. This pattern of thinking is called, “catastrophic thinking”. Catastrophic thinking is the mind’s attempt to imagine the worst things that can happen in order to try to avoid or prevent them, or at least prepare for them. Catastrophic thinking may also make feelings of worry, fear, and panic much stronger and more overwhelming.
It may help to share your fears with a member of the healthcare team. They can tell you how likely it is that the worst things you imagine will happen. If any of these worst things are likely to happen, they will tell you what they will do to help. With support from the team, you can focus on what is happening now, and on what is most likely to happen, instead of worrying about all the possible negative outcomes. If you need more help to calm your fears, talk to a member of your healthcare team or talk to a counsellor.
It’s hard to care for your child if you feel paralyzed by sadness, anger, and fears about the future. Some parents try to push fears away and focus on trying to feel hopeful and positive. But your hopes, fears, and strong feelings can all be useful if you pay attention to them. Strong feelings, like sadness, despair, or anger, are normal responses when you begin to see that your child is getting sicker and you are not going to get the results you hoped to get. Your fears, anxiety, and worries about the future can tell you what you don’t want to happen. Your hopes are your wishes about what you do want to happen.
You can use your hopes, fears, and feelings to guide the planning for your child’s care. Talk to a trusted member of your child’s team. They can tell you which fears need attention and which are not likely to happen. They can also help find new supports if you need them. Talking together may help calm your fears by making them more manageable.
Talk to the team about your hopes and wishes for your child. When you have to make choices between treatment options, it’s helpful to know which choices will help you come closer to or further away from what you want for your child.
Talk with your team. Together, you can make a plan for your child’s care—a plan that feels safe and strong for your child and your whole family as you move forward in this time of uncertainty.
When your child has a serious illness, it’s normal to feel afraid and worried. Here are some things to try, if you feel overwhelmed.
Control your breathing
This may sound like a very simple suggestion but it works. When you have strong feelings, it takes commitment and concentration to control your breath. Deep breathing will slow down your body’s reaction to overwhelming emotion. That slow-down will allow you to think, not just react.
- Method: Move your body into a comfortable, seated position. Guide your breath to a pattern of 4 seconds in, 4 seconds out. Focus only on your breathing, nothing else. If a thought enters, blow it away with your next breath. Do this 4-seconds in/4-seconds out breathing for 2 minutes. Let your mind and body slow down to a pace where you will have more control over your thinking. There are lots of resources you can use to guide this process if that’s helpful—search online or at your public library for “deep breathing exercises”.
Focus on this moment
"It’s the moments that you make…I always tell families to try to stay in the moment and create those special moments because someday that’s what you’ll look back on. Don’t spend the energy looking into the future. Stay in the moment.” – Darren, father of Tyler
One way to cope with catastrophic thinking or negative thoughts is to name and accept your situation as it is right now:
- How would you describe the key facts of your life, your child’s condition and your family’s needs to a new person?
- What thoughts, feelings or worries do you have that belong to today?
- What thoughts and fears are worries about the future (ie. not immediate concerns)? Make a note of what you are feeling that belongs to the future. You can think about these later or talk to someone about them, when you are feeling calmer.
- Focus on right now. Is there something you need? Is there something your child needs? Is there someone who can help right now or someone you can contact?
What is the next right thing to do?
There may be times when you think that “everything is wrong” or that you “have to do it all right now”. If you can’t calm your thoughts and you feel you have to do something, do one thing. Focus your mind and energy on doing one thing that feels like it may be helpful to you, for your child, or for your family.
Talk to someone you trust, who understands you. Tell one person what you are sad and fearful about even if it means a long conversation with many tears. Share important feelings like, disbelief, anxiety, sadness, loneliness, anger, guilt, and regret. Talk to someone who will listen to your feelings without judging you.
Caring for a child with a life-threatening illness or a child at the end of life has a huge impact on your mental and physical health. The toll of not eating well and sleeping badly, and living with strong emotions and worry are hard on the mind and the body. Tell your own physician what is happening with your child. If you feel overwhelmed, make an appointment for yourself. See your physician if you have:
- Significant and ongoing anxiety, racing thoughts, depression, sleep changes, or mood changes
- Difficult relationship changes, such as separation or divorce
- Any thoughts of harming yourself or others, including thoughts about helping your child die sooner
Your emotional experience of your child’s, your own, and your family’s life at this time will be powerful and complex. It will not always feel like this. These strategies are only a few suggestions among many that you might try. If you need more help, please do reach out and keep reaching out until you find the support you need.