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Coping as a Patient

With a little help, most people can learn to manage their feelings and the changes brought on by a brain tumor and its treatment. Brain surgery is a lot for your body to cope with. You can learn how to gain more control every step of the way. This is true for both patients and the people who care for them.

  • It’s normal to feel scared, insecure, confused and angry about a brain tumor diagnosis– and it is possible to deal with these feelings.
  • Try to be patient with yourself, your loved ones, and the very slow-moving treatment process.
  • You can take an empowerment approach to gain a sense of control over this disease.
  • No question is wrong to ask.
  • Take time to process the information you’re given. You probably have enough time to take a deep breath and think about your next steps.
  • Talk openly with your family and your doctors to help keep the treatment process on target.
  • Aim to enjoy the things that make your life special.

Patients will want to consider: support groups, coping strategies, side effect management, quality of life improvements, and practical matters.

Coping with Personality Changes

Depression, anger, confusion and mood swings are common symptoms for people with brain tumors. Personality swings are caused by the tumor, the treatment, or when you feel hopeless. Under all cases, these changes can be very hard to manage, whether they are small or drastic.

Speak with your doctor if you notice these types of changes. Many emotional shifts can be treated with medication, and you can find support to help you through these difficult times.

Coping with Cognitive & Behavioral Changes

A brain tumor and its treatment(s) can cause changes in your behavior and ability to think. You may have a hard time with communication, concentration, memory, and feeling moody. These difficulties can certainly affect your daily life, and they do not always go away. This can cause stress for everyone involved.

Medicine and counseling may be prescribed to help manage cognitive and behavioral changes. Cognitive rehabilitation tools can help too.

Cognitive Rehabilitation

Cognitive rehabilitation helps you regain as much of your mental, physical and emotional abilities as possible.

  • Compensation techniques develop alternate skills to make up for those that have been lost. For example, exercises to strengthen sight, speech, and movement. When full recovery is not possible, compensation includes learning to live with memory loss by keeping calendars, reminder systems, and organizers. Caregivers and/or family members also benefit from compensation tools. Neuropsychologists are cognitive experts that can help find solutions or offer medication (for example, Ritalin).
  • Anger management includes training, counseling or medication to help a patient who finds themselves impulsive, frustrated or moody.

Caregivers also benefit from compensation techniques or anger management tools to maintain the high level of patience that’s needed.

Coping with Anxiety & Depression

Feeling anxious from the tumor or treatment is very common, but it makes every situation feel more intense. Often, depression is felt with anxiety. Treatments include antianxiety and/or antidepressant medication and counseling. Talking about how you feel with someone skilled in relieving emotional problems can absolutely help.

  • Symptoms of anxiety include: rapid heartbeat, fear, restlessness, nervousness, and sweaty palms. If you feel anxious it is important to talk about it. It’s the first step to regaining control in your life.
  • Symptoms of depression include: feeling irritable, hopeless and unable to concentrate, withdrawn and moody. Some people wish to harm themselves. Depression is serious. It can and should be treated on its own.

Most people say that their mood improves as the symptoms and side effects of a brain tumor or its treatment are managed and go away.

Coping with Headaches

Headaches are most often caused by edema. Edema is swelling of the brain caused by the tumor or treatment. Steroids may be prescribed to reduce edema, but steroids can cause their own set of problems (difficulty sleeping, sweating, over-eating, agitation). If you take steroids, tell your medical team if you can’t sleep or have other new symptoms so they can adjust the dose. Avastin, a drug often used to treat glioblastomas is also very helpful in reducing edema.

Some headaches are connected with dizziness, nausea, or vomiting. This is often linked to the location of the tumor in the brain. The surgical removal of the tumor will often relieve those headaches. Post-operative headaches often go away after a short period of time.

If your headaches don’t go away or if they return, it could be a sign of recurrent edema or a new tumor. This should be addressed by your treatment team.

Coping with Seizures

A seizure is when an abnormal burst of electrical activity in the brain causes an attack. It can cause muscle contractions, staring, or a loss of consciousness. Some people only experience one seizure, others suffer from many. They are common with slow-growing gliomas, meningiomas, and metastatic brain tumors.

Simple Partial Seizures can cause abnormal taste or smells, involuntary jerking, tingling or numbness in one part of the body, buzzing in the ears, lip smacking, and dilated pupils.

Complex Partial Seizures cause altered consciousness. You may be aware of your surroundings but unable to speak, or may feel confused and hallucinate (imagining sights, odors, and sounds).

Generalized Seizures are also called grand mal seizures. They begin with a sudden loss of physical control with flailing arms and legs, unconsciousness, twitching, incontinence, and short breaths. After, you may be limp or confused.

A patient may be put on an antiepileptic (AED) or antiseizure drug to prevent future seizures. The type and amount of AED medicine is based on your symptoms and how well you react to it. Also, some AEDs should not be used with chemotherapy.

Patients who have many seizures can keep a journal to keep track. Write down when they happen, what happens, and for how long. The doctor can find a pattern and provide the best antiepileptic drug to help.

You may find it’s helpful to wear a medical alert bracelet with information about the AED drugs you use (or shouldn’t use).

Coping as a Caregiver

Being a Caregiver

A caregiver is anyone who provides unpaid help, or arranges for help to care for someone with an illness or disability. Help comes in many forms for caregivers. It can range from emotional and spiritual to financial and logistic. The best help comes from people who’ve “been there” and can teach you about options for treatment, expectations for recovery, and resources for support.

It’s easy to forget to take care of yourself when you’re caring for someone else. It becomes hard to focus on work, chores and other demands, yet the pressures continue. There are ways to build-in time for yourself. This is essential for your own wellbeing. Though it’s hard, aim to find a balance between caring for others, and caring for yourself. With this aim, you will be less likely to feel exhausted or resentful about caregiving. Remember that taking time to care for yourself is not selfish.

People who are forced to become a “caregiver” can find balance as they learn to manage the task before them.

Care for Yourself - Things to Remember:

  • You can help your loved one think through treatment options, goals and priorities during this difficult period.
  • The medical team can help you know what to expect and how to plan. Recovery after treatment can take time, and it helps to feel prepared. Ask all of your questions.
  • You can get tips from people who are also caring for someone with a brain tumor. These people are often very helpful.
  • You can ask for help, and say “YES!” when someone offers. It’s vital for your own well-being to ask for and accept help. Online organizers (like “lotsahelpinghands.com”) can be very useful.
  • Schedule self-care into your day. You can’t help others unless you take care of your own physical, economic, spiritual and emotional well-being.
  • End-of-life care plans can help your loved one feel more control. Try to get key family members talking about plans. Make sure the doctor is aware of your loved one’s preferences.
  • If you are grieving the life you used to know, it’s normal. Give yourself time to grieve.
  • Focus on the things that really matter. Find ways to enjoy the little moments together.

When a Loved One’s Personality Changes

Depression, anger, confusion and mood swings are common symptoms for people with brain tumors. Personality swings are caused by the tumor, the treatment, or the patient has run out of ways to cope. Under all cases, these changes can be very hard to manage, whether they are small or drastic.

Speak with your doctor if you notice these types of changes. Many emotional shifts can be treated.

Tips to Manage Difficult Moments

  • Don’t let your own feelings of anger, resentment or guilt grow. Admit your feelings so you can address the problem.
  • Be compassionate with yourself. There’s no one way a caregiver should feel. Give yourself permission to separate your feelings from your actions.
  • Ask your support network for some coping ideas. Call a family meeting and say, “Let’s figure out how we can help each other.”
  • Set limits. It’s ok to say “no” when you can’t do something.
  • Remember that you do not need to have all the answers or fix all the problems.
  • Often, just “being there” and quietly listening is all that’s needed. Listen, but try not to react to irrational behavior.

Making Important Decisions

Often, a brain tumor will make it harder to thinking clearly and process information. This may be from the tumor pressing on the brain, from treatment or from generally feeling overwhelmed. Whatever the cause, a loved one may have to become the patient’s advocate and care coordinator. If you must be the treatment decision-maker, remember that you can take time to ask questions, research options, and find support.

Brain tumors are not the same as other major life events. They can be ongoing and often unpredictable. Try to think through reasonable short- and long-term expectations.

Tips for Making Important Decisions

  • Learn about the brain tumor’s type, location, grade, treatment options, and expectations for recovery and side effects.
  • Talk to the best experts you can find in your loved one’s (or your) area for a first and second opinion.
  • Research credible websites, like the National Cancer Institute, and the National Brain Tumor Society.
  • Weigh the pros and cons of each treatment option with your loved one. This should include things like time, location and cost.
  • Create a “to do” list of short and long-term needs. Decide what your loved one can do with and without help.
  • Recognize and respect the capabilities and wishes of your loved one.
  • Set limits for yourself. Define what you can and can’t do for your loved one.
  • Organize a care-plan with others. Stress open communication. (Who is doing what, when?). This plan will help reduce family stress and bring needed relief.
  • Remember that each stage of care calls for different levels of support. Roles will change along the way.
  • Gather copies of medical and treatment records (including operation reports and x-rays). If it makes sense, ask to be the legal “Power of Attorney” for your loved one so you can help with follow-up care plans and future medical decisions.
  • Talk to an oncology social worker at the cancer center or with your oncologist. They can answer many logistical, personal and financial questions.
  • Try to value the good moments you spend with your loved one. Every moment is special.

Moving Forward

It’s frightening to envision a different future than you planned. It can also be difficult to talk about painful topics.

Finding ways to talk about what is happening makes most people feel relieved. The conversation often leads to hope about the life you have together now. Often, people want to make the most of their time together with family, as they make peace with the circumstance. These can be uplifting conversations that give you both a sense of peace.

Bereavement

Research shows that caring for someone with a brain tumor is just as stressful (but in a different way) as the diagnosis. As with other difficult emotional issues, you can contact a social worker or counselor who has experience with caregivers like you. Or talk with a spiritual leader that you trust.

Losing someone you love to cancer is one of the most difficult and profound experiences in life.

In the weeks and months after a death, people feel an enormous mixture of emotions. It is important to know that practically any emotion you feel is normal. Sadness can also be physical, so you can feel tired, achy, and slow.

Be assured that over time, you will feel better. Some people move quickly through grief; others move slowly. No matter how you grieve, it is important to know that your feelings are normal, and that in time, it’s okay to move on.

Resources for Caregivers

There are several organizations and websites that can help family caregivers and volunteers get organized:

National Brain Tumor Society

  • Offers information, connection, and advocacy for people affected by brain tumors. NBTS has excellent resources listed throughout their webpages.

American Brain Tumor Association’s Connections Online Support Community

  • ABTA connects patients, families, friends, and caregivers for support and inspiration.

Lotsa Helping Hands

  • Has the “Help Calendar” where you can post requests for support - things like meals for the family, rides to medical appointments, or just stopping by to visit. Members of your community can quickly find ways to help. Lotsa will send reminders and coordinate logistics automatically.

My Lifeline

  • Those with cancer can create their own personal webpage to communicate with family and friends. Pages include online calendar tools, scheduling timelines, and information about ways friends and family can offer support.

Musella Foundation for Brain Tumor Research & Information

  • Offers education, support (emotional and financial), advocacy and guidance to brain tumor patients. Online support groups and opportunities to participate in fundraisers for brain tumor research are also available.

Respite care and palliative care services

  • Respite care is short-term, temporary relief to caregivers who provide full-time support. It offers intensive care for the patient in their home so a caregiver can take a break. You can contact a respite care organization when you need time away.
  • Palliative care is a service used at any point in a patient’s experience to help a caregiver with the management of pain and other symptoms. Palliative care provides comfort, symptom management, and quality of life tools. Palliative care professionals may come to a person’s home to teach caregivers how to manage problems. Check with your insurance, and ask your hospital or doctor for a referral.