Brain Tumors

Caregiving

Caring for someone who has a brain tumor can be a rewarding yet an extraordinarily demanding responsibility. Your typical caregiver duties may include managing side effects, administering medications, scheduling appointments, organizing paperwork and communicating with friends and family members. In addition, you may take on daily tasks, such as cooking, cleaning and driving. Overall, you will face a unique set of challenges because of the physical and cognitive changes that can occur in your loved one as a result of a brain tumor and its treatment (see Side Effects).

Many caregivers experience physical and emotional fatigue from neglecting their own needs, such as good nutrition, adequate sleep, exercise and socializing with others. The toll this takes on their health and well-being cannot be underestimated. It’s crucial not to lose sight of your own physical and emotional health.

The emotional, cognitive and psychological changes your loved one may experience could result in frequent mood swings, memory problems or difficulty communicating, and these will affect your daily life. You may feel a range of emotions, including sadness because the person you once knew is not what they once were and may be difficult to help. It’s not easy to appear strong when your world has changed so drastically. Many difficult emotions, such as fear, anger, sadness and worry, need to be shared to actually lighten the load for both the caregiver and patient alike.

Doctors recommend that caregivers join a support group. Connecting with others in similar situations can make you feel less alone. Some support groups are held in local community centers or hospitals, and your loved one’s health care team should be able to provide you with a list of support groups in your area. Many online support groups are also available and offer the advantage of being available on your schedule.

Lastly, watch for signs of depression. If you have prolonged feelings of sadness or hopelessness, difficulty eating or sleeping, or thoughts of hurting yourself or your loved one, seek help immediately.

 

 

Caring for a Child with a Brain Tumor

As the caregiver for your child, you will face many challenges. Along with advocating for your child to get the best treatment available, you’ll be responsible for physical tasks, such as managing side effects, appointments, schedules, meals, housework, finances and more. But, you also may take on the emotional weight of the situation, including worrying about the success of the treatment and fearing how the tumor, treatment and potential late effects may affect your child — and your family as a whole — in the future.

Try not to get caught up in what might happen. Instead, focus on the present and keeping things as “normal” as possible for your child and the rest of the family. Here are a few ways to help make that happen.

  • Stick to a routine, complete with “jobs” for your child to do. It may not be your old routine and the jobs may be small in comparison to previous chores, but sticking to a regular schedule adds structure and reduces anxiety.
  • Keep your child connected with friends. Arrange playdates or visits, as appropriate. If in-person visits aren’t an option, try video chats or conversations through social media
  • Communicate with your child. Use age-appropriate language and be honest. Ask questions, and listen to what your child has to say.
  • Offer choices. Especially with older children, making certain decisions offers a sense of control in what seems like an out-of-control situation.
  • Give unconditional love. Behaviors may change, and it is important for your child to know you love him or her throughout this experience.

Tip for Siblings

Siblings of an ill child will feel a variety of emotions, from fear and guilt to anger, and it’s important to address their concerns. Set aside time for each child, and involve siblings in caregiving, as appropriate. It may be challenging, but it may prove to be beneficial in the long term. Some studies show that a cancer diagnosis may bring families together, with siblings showing increased empathy and compassion for their brother or sister.

 

5 Ways to Care for Yourself

  1. Make an appointment for your annual physical, and share your role as caregiver with your doctor so he or she is aware of your added responsibilities.
  2. Eat healthy. Prepare nutritious foods that you enjoy and that allow you to keep up your strength.
  3. Be active. Set aside time every day for some type of physical activity.
  4. Find activities that lower your stress levels, such as mind-body relaxation techniques, reading or journaling.
  5. Give yourself a break, and don’t feel guilty when you enjoy yourself. Caring for yourself is not selfish. It allows you to recharge your energy so you can share it with your loved one.

 

Additional Resources

 

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