Caring for the Neuroblastoma Caregiver

How to care for yourself

Caring for a child with cancer can affect you physically as well as emotionally. You cannot stop the impact of illness on your child, but there are many things you can do to take care of your personal well-being and make sure that your own needs are met. Taking time to practice self-care will help you maintain your physical and emotional strength and will allow you to continue providing good care for your child and family.

Below are examples of some effective tools for self-care.

Asking for and accepting help

A little help can go a long way, and your support network and community may ask how they can be there for you and your family. Be specific about what you need. Sometimes help with chores can be just as valuable as a listening ear. Keep a list of tasks that need to be done (eg, making meals, taking other children to and from school, home care, laundry, etc.) and take them up on their offer to help. Reducing the tasks that require your attention can allow you the time and energy you need to remain focused on caring for your child.

Setting goals

It can be helpful to set personal goals or decide what you would like to achieve during different phases of therapy. Some examples are:

Take a break

Find someone to help with caregiving tasks

Do things that make you feel healthier and emotionally stronger

You are more likely to reach a goal if you break it down into smaller steps. Make an action plan by deciding which step to take first, and when. It is okay to adjust as you go!

Reducing personal stress

Your level of stress is influenced by many factors. How you perceive an event affects how you respond and cope. Below are a few helpful steps to keep in mind when managing stressful situations including, but not limited to, caring for a child with neuroblastoma.

Recognize warning signs as early as possible and make changes before you feel overwhelmed. These warning signs might include irritability, sleep disturbance, or forgetfulness
Figure out sources of stress
Work out what you can change and what you can’t
Participate in a stress-reducing activity. This can help you gain back a feeling of control

Stress reducers can be simple activities like walking and other forms of exercise, gardening, meditation, or having coffee with a friend. Participate in pleasant, nurturing activities that bring you joy.

Taking care of your physical health

Sleep, nutrition, and exercise are key components to good physical health. Getting a good night’s rest can benefit your physical health and mood. It can also improve your decision-making skills. Eating well promotes good health by building strength and stamina, and by aiding the immune system’s ability to fight illness. Exercise is shown to improve sleep and lessen tension and depression, and it may increase energy and alertness.

As a caregiver, it may be difficult to ensure these needs are met when you do not have a lot of control over your physical environment. The key here is finding small ways of adapting to the situation to better support your physical health. Remember, small changes can have big impacts. For example:

Getting a full night’s rest when you are staying in the hospital with your child can be challenging. Bringing a blanket, pillow, and foam topper from home to make the hospital couch a little more comfortable may help
Getting to the gym daily for a workout might not be possible when your child is undergoing cancer treatment. Planning breaks for a quick walk is a great place to start

Taking care of your emotional health

Our emotions are messages that we can learn from. Listen to them, then take action. Caregiving often involves a range of emotions. Some feelings are more comfortable than others. When you find that your emotions are intense, that might mean:

You need to make a change in your caregiving situation
Your levels of stress are increasing
You have to ask for what you need

Many caregivers benefit from working with a licensed mental health professional (like a therapist or a counselor) or support group to process their emotions. A busy caregiver can find help from these professionals and groups in person, via webchats, or by phone.

Taking care of your family

It is common for siblings to have a difficult time understanding why their brother or sister is sick. Siblings can often feel forgotten and may need additional attention and support because your child with cancer requires so much focus. For more information on helping siblings cope, you can visit the SuperSibs page of the Alex’s Lemonade Stand website.

Seeking the support of other caregivers

It is always helpful to talk to someone who understands what you are going through. A community of people dealing with similar life challenges can provide a safe space to share and learn from one another. Virtual support groups are accessible and allow for international networking.

See Advocacy and Support Groups that may be able to provide the help you need.

Caring for the Caregiver

Hear from a social worker and nurse practitioner on the importance of self-care during your child’s treatment journey.