Coping With Your Loved One's Brain Tumor
Knowing what to expect from a brain tumor can help you become a better caregiver.
By Heidi Tyline King
Medically Reviewed by Lindsey Marcellin, MD, MPH
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A brain tumor poses many challenges to a person battling the disease. But caregivers also suffer. When a loved one is diagnosed with a serious illness, like a brain tumor, caregivers must stay strong and supportive, even though they may feel like they are crumbling inside. Knowing what to expect from your loved one's brain tumor is one way to stay ahead of the curve. Offset your fears about what might happen to your loved one by equipping yourself with knowledge.
Brain Tumor: Emotional Reactions
Denial, anger, resentment, and depression are all normal emotions to experience when diagnosed with a life-threatening illness. Typically, patients may experience all of them before they fully accept their condition. Caregivers, too, experience these emotions. But, at some point, you must accept the situation so that you can be there for your loved one.
"It's hard to care for patients with chronic conditions, and it's natural to feel like it's a burden," explains Charles Goodstein, MD, clinical professor of psychiatry at New York University School of Medicine. Oftentimes, caregivers don't want to admit that life has become more difficult, but Goodstein says doing so is actually a part of the healing process.
Brain Tumor: The Physical Toll
Because the brain doesn’t control just one thing, the physical problems stemming from the tumor will depend on its location. The brain tumor could be destroying tissue, obstructing important fluid flow in the brain, pressing against normal tissue, and more.
As a result, your loved one’s walking could be impaired, or he or she may have problems with bowel or bladder control. Seizures, headaches, nausea, and fatigue are also common problems associated with a brain tumor and its treatments.
And since we’re dealing with the brain, cognitive issues will arise as well. Your loved one may forget, have problems speaking, and experience emotional changes.
That’s not all. They may do odd things. For example, one patient began shredding important documents. This was most likely because the tumor was affecting the part of the brain responsible for reason. This type of side effect can be treated through cognitive rehabilitation therapy, which will teach the patient how to think, reason, and remember more clearly.
Coping With a Brain Tumor: Knowledge Is Power
Anyone who has been through a crisis can affirm that it's the "not knowing" that can drive you crazy. Calm your fears about what might happen to your loved one by learning everything you can. Ask the doctors questions, research good sources on the Internet, and read up on treatment options, cognitive development issues, symptom management, and daily adjustments necessary to live with a brain tumor.
"I first turned to family and friends, but they didn't understand the unique challenges that we faced, so I started looking up pediatric-specific sites on the Internet that could help meet our needs," says Kristen Kojeszewski, of Bartonsville, Pa., whose daughter Madeline was diagnosed with a brain tumor at age 3.
As the disease changes, so will the needs of your loved one. It is therefore essential to keep up with your education and be ready for what may lie ahead. This will make it easier when your loved one has new or worsened symptoms, such as forgetfulness or memory loss or a change in personality or outlook on life.
Recognizing late effects, which are side effects that show up five or more years after diagnosis and treatment, is another way to prepare for the unexpected.
Brain Tumor: Taking Care of Yourself
Knowing what to expect from your loved one’s illness is important. But in order to be a good caregiver, you must take care of yourself, too. Eat a healthy diet, exercise, and rest as much as you can. You cannot help your loved one if you become sick.
If you are having trouble coping with your loved one's illness and the burdens it has placed on you as a caregiver, consider joining a caregiver support group. Talking with other people who are going through the same thing can be extremely helpful. Not only will it offer reassurance that you are not alone, but you can also get tips on how to handle certain situations from people who have been there. Ask your loved one's doctors to recommend a support group, or call one of the many cancer organizations to find a group in your area.
Also, make sure you take time for yourself. If you are having trouble relaxing, try yoga and meditation, and treat yourself to a stress-relieving massage every now and then.
Above all, don't be afraid to ask for help. Kojeszewski said at first she refused help from others, but then decided to accept the offers, including letting friends bring over dinner or watch her younger child.
In the end, the more you are able to anticipate and prepare, the better your chances at handling any situations that come your way.
Video: 6 ways to support loved ones and friends with cancer | Ilonka Meier | TEDxJIS
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