Managing Guilt

Guilt is a common feeling for parents and family caregivers of children with serious illnesses. You naturally want to protect your child. When your child suffers, you may blame yourself or feel powerless to help your child. 

Sources of guilt

Guilt in caregivers of children with serious illnesses has different sources. Some common triggers include:

• Being unable to take the illness away
  
• Feeling like signs and symptoms of the illness were missed 
  
• Being unable to stop the side effects of treatment
  
• Concern that the disease was passed down to your children through your genes
  
• Fear that you could have prevented the disease or that you made the condition worse 
  
• Worry about how medical decisions might affect your child now or in the future
  
• Spending less time with your other children and worry that they are being neglected
  
• Spending time away from your sick child to take care of work, home, and family responsibilities or to take time for yourself
  

Occasional guilt is normal. But constant feelings of guilt can have negative effects. These feelings can:

• Lead to anxiety and depression
  
• Make it harder to deal with stress
  
• Interfere with making treatment and care decisions
  
• Lead to parents being overprotective, which can affect a child’s physical, social, and emotional health
  
• Affect marriage and family relationships
  

Ways to manage guilt

You can address feelings of guilt in a number of ways.

Recognize guilt

The first step in managing guilt is to realize your feelings. Identify what triggers your guilt. Understanding your feelings helps you develop a plan to cope.

Find a trusted person to listen

Sharing your feelings with someone else can be a relief. A close friend, family member, therapist, religious leader, or another parent in the same situation may provide a safe place to discuss what you are going through.

Address uncertainty

Guilt is often related to feeling helpless or uncertain. It may not be possible to take those feelings away. But your child’s care team can help. Talk with them about questions and concerns related to treatment, side effects, genetics, or other medical topics. Write down questions and answers. Keep a notebook of the plan and next steps. This can give reassurance that you and the care team are doing their best in a difficult situation.

Lower expectations of yourself

For many caregivers, guilt is related to too many demands and an inability to do everything. Parents feel pulled in all directions when life is normal. During a serious illness, this can become unmanageable.

It is not possible to balance everything all the time. Focus on your top priorities for right now. Identify what you need to take care of later. Then, set smaller, realistic goals. 

Learn to let go

For someone dealing with guilt, letting go is important so that you can move past guilt. Letting go can mean:

• Giving yourself time to think about guilt but setting limits on thoughts for the day
  
• Being a part of making decisions but trusting your care team’s recommendations
  
• Allowing a spouse to take part in parenting or treatment choices
  
• Forgiving yourself or others for mistakes

Some parents also find that journaling thoughts and feelings can help uncover and express emotions. 

Learning to let go allows you to share responsibilities and focus on what is most important.

Focus on the positive

Focus on what you are doing right. Some ways to focus on the positive include:

• Keep a gratitude journal of good things throughout the day.
  
• Find small ways to praise and appreciate your spouse or children. 
  
• Have snuggle time with your child.
  
• Watch a show together as a family.
  
• Send a text to a friend or loved one.
  
• Collect inspirational quotes, pictures, and songs. 
  
• Take time for yourself – pray, write in a journal, meditate, exercise, or have alone time.
  
• Find a support group.

Focusing on the positive can be hard, but doing so has many benefits. It can:

• Improve mental and physical health
  
• Create an atmosphere of hope
  
• Increase confidence
  
• Promote quality of life for your family
  

Take time for yourself

A source of guilt for many parents is taking time for themselves. However, this is a source of strength. Your child needs the best version of you, and to give them that, it is important to take care of yourself. Find ways to focus on your own health and well-being. For example, take time to rest, pray, meditate, exercise, be alone, or spend time with friends. Self-care is an important part of caring for your child. 

When to seek help

If guilt continues to be a struggle, seek help from a mental health provider. These professionals can help you work through difficult emotions and process feelings of guilt. 

Support groups can be another important resource for parents dealing with guilt.

Questions to ask your care team

• Are feelings of guilt normal?
  
• How do I manage feelings of guilt?
  
• Can you recommend any resources that address guilt and emotional coping for parents in similar situations?
  
• Are there any mental health services or support groups for parents that you recommend?
  

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