Brain Tumors

The Role Of A Caregiver

As you manage your own emotions and fears caused by this diagnosis, you are faced with the responsibility of caring for and assisting your loved one who has a brain tumor. The job of a caregiver requires commitment, hard work and flexibility.

You will face a unique set of challenges because of the types of changes that can occur in your loved one as a result of a brain tumor and its treatment. Your loved one may encounter emotional, cognitive and psychological changes that could include frequent mood swings, memory problems or difficulty communicating. As you provide care, you can expect to draw from your many strengths. You may be pleasantly surprised to discover some strengths you didn’t even know you had. Learn as much as you can about your loved one’s type of brain tumor so you can provide both physical and emotional support.

Your typical caregiver duties may include managing side effects, administering medications, scheduling appointments and organizing paperwork, cooking and cleaning, among other things.

Attending medical appointments is an important function. In addition to driving your loved one to appointments, listen carefully and ask questions. Take notes to help remember key information, and report progress and problems to the medical team during the visits. Share updates by group e-mail or social media to relieve you and your loved one of having to repeat the same story multiple times.

Consider your loved one’s special diet needs and preferences when preparing meals. By shopping for and preparing the right foods, you can help your loved one get the right nutrition during treatment. Choose foods that nourish the body and help manage the symptoms and side effects of medications.

You may also be caring for your loved one’s children. Help your loved one enjoy some downtime by taking the kids out. Entertaining kids doesn’t have to be costly — an afternoon at the park or in the library is fine. If your loved one prefers not to be left alone, plan an at-home activity, such as making posters or get well cards for the parent who is undergoing treatment.

Teens may not need as much hands-on care, but they do need age-appropriate attention. Commonly when a parent is ill, the teen is thrust into assuming a lot of adult responsibilities – cooking, cleaning or babysitting – and may not be able to spend time with friends because of these added chores. Step in and make sure that teens still get to have a social life and that when they help out, they are recognized for pitching in.

You may become a pet sitter. Take the dog for a walk or to the dog park. Pet treats and toys are always a nice surprise. Consider boarding them if your loved one will be away from home for an extended time.

Lastly, don’t forget to take care of yourself. Many caregivers experience physical and emotional fatigue from neglecting their own needs for good nutrition, adequate sleep, exercising and socializing.

 

 

Caring for a Child with a Brain Tumor

Along with advocating for your child to get the best treatment available and taking on the typical duties of a caregiver, you are confronted with the extraordinary task of continuing to parent as you did before your child was diagnosed. You may feel overwhelmed at times. Keep in mind that patience and flexibility will be important. Here are a few suggestions that may help make your day-to-day life easier:

  • Follow a schedule. Although you may feel overwhelmed at times, it helps to have a normal routine as much as possible. It may not be your old routine, but sticking to a regular schedule adds structure and reduces anxiety.
  • Be creative with food. Loss of appetite is a common challenge. Traditional meals and mealtimes may go by the wayside for the time being, and that’s okay. Let your child eat whenever he or she feels hungry, and offer high-calorie, high-protein snacks throughout the day.
  • Help your child stay connected. Phone calls, texts, video chats and social media platforms make it easier for your child to stay in touch with friends, especially when an in-person visit may not be possible.
  • Pay attention to siblings. Your child’s siblings may feel a variety of emotions, from fear and guilt to anger. It’s important to address their concerns. Set aside time for each child, and involve siblings in caregiving, as appropriate.
  • Boost your child’s spirits. Explore new hobbies that can be done during hospital stays or at home when visitors aren’t recommended. If you notice your child is frequently sad or appears to be depressed, call the doctor.
  • Be positive. Show your child that you’re optimistic about the road ahead. Most important, trust your instincts. After all, you know your child best. And, remember, you’re not alone. Your child’s medical team is available to assist or recommend others who can.

 

Additional Resources

 

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