As a hospice registered nurse case manager, I'm here to provide you with information, support, and guidance through this grim time. In this article, we'll explore what to expect over the course of the disease, the changes you might observe in your loved one, and how to provide the best care from the onset of the illness until the end of life.
Understanding Brain Cancer
The brain is the control center of your body. It helps you think, feel, move, and do many other things. Sometimes, the cells in the brain grow abnormally and form a lump called a tumor. A tumor can be either benign or malignant. A benign tumor is not cancerous and does not spread to other parts of the body. A malignant tumor is cancerous and can invade and damage the brain tissue and other organs.
Brain cancer is a condition where a malignant tumor grows in the brain or near it. Brain cancer can affect anyone, but some people may have a higher risk than others. Some of the risk factors for brain cancer are:
Age: Brain cancer is more common in older adults, especially after age 65.
Family history: Having a close relative with brain cancer may increase your chance of getting it.
Radiation exposure: Being exposed to high doses of radiation, such as from medical tests or treatments, may increase your risk of brain cancer.
Other medical conditions: Having certain genetic disorders or a weak immune system may make you more prone to brain cancer.
Observing Changes in Your Loved One
Physical Changes
Brain cancer can affect your loved one's body in different ways. Some of the common physical changes that you may notice are:
Fatigue: Your loved one may feel more tired and less energetic than usual. They may need to rest more often and have less interest in doing things. This is normal and not a sign of weakness. You can help them by respecting their need for rest, planning activities when they have more energy, and encouraging them to eat well and drink enough fluids.
Weakness: Your loved one may have trouble using some of their muscles or moving some parts of their body. This can make it hard for them to do things like walk, hold things, or get dressed. This can happen because the tumor is pressing on the nerves or the brain areas that control movement. You can help them by providing support, assistance, or devices that can make it easier for them to move around and do daily tasks.
Headaches: Your loved one may have headaches that are more frequent or severe than usual. This can happen because the tumor is causing pressure inside the skull or affecting the blood flow to the brain. You can help them by giving them pain medication as prescribed by their doctor, applying cold or warm compresses to their head, and keeping the room quiet and dark.
Changes in Mobility: Your loved one may have difficulties with balance, walking, or movement. They may stumble, fall, or have trouble turning or changing direction. This can happen because the tumor is affecting the brain areas that coordinate movement or the inner ear that helps with balance. You can help them by holding their hand, using a cane, walker, or wheelchair, or installing grab bars or rails in the bathroom or stairs.
These physical changes can be hard to cope with, both for your loved one and for you. Remember that you are not alone and that there are resources and support available for you. You can talk to your loved one's health care team, join a support group, or seek counseling if you need help.
Emotional Changes
Brain cancer can affect your loved one's emotions and feelings in different ways. Some of the common emotional changes that you may notice are:
Mood Swings: Your loved one might have sudden or frequent changes in their mood, such as feeling sad, angry, or anxious. This can happen because the tumor is affecting the brain areas that control emotions or hormones. You can help them by being patient, understanding, and supportive. You can also help them cope with their emotions by listening to them, encouraging them to express their feelings, or doing relaxing activities with them.
Depression: Your loved one might feel depressed, which means feeling sad, hopeless, or worthless for a long time. This can happen because of the stress and challenges of living with brain cancer, or because of the side effects of the treatments. You can help them by showing them that you care, reminding them of their strengths and achievements, and seeking professional help if needed.
Emotional Withdrawal: Your loved one might withdraw from social interactions and activities that they once enjoyed. This can happen because they feel overwhelmed, isolated, or afraid of being a burden to others. You can help them by respecting their need for privacy, but also staying in touch and inviting them to join you in things that they like. You can also help them connect with other people who are going through similar experiences, such as support groups or online communities.
These emotional changes can be hard to cope with, both for your loved one and for you. Remember that you are not alone and that there are resources and support available for you. You can talk to your loved one's health care team, join a support group, or seek counseling if you need help.
Cognitive Changes
Brain cancer can affect your loved one's thinking and mental abilities in different ways. Some of the common cognitive changes that you may notice are:
Memory Issues: Your loved one might have trouble remembering things, such as names, dates, or events. They might also get confused or mixed up about where they are or what they are doing. This can happen because the tumor is affecting the brain areas that store or retrieve memories. You can help them by reminding them of essential information, using notes or calendars, and keeping a consistent routine.
Speech and Language Problems: Your loved one might have difficulty finding the right words or understanding what others are saying. They might also have trouble reading, writing, or following instructions. This can happen because the tumor is affecting the brain areas that process language. You can help them by speaking slowly and clearly, using simple words and sentences, and repeating or rephrasing what you say if needed.
Changes in Judgment: Your loved one might have problems making decisions or solving problems. They might also act impulsively or inappropriately or have trouble following social norms or rules. This can happen because the tumor is affecting the brain areas that control reasoning, planning, or behavior. You can help them by giving them guidance, supervision, or feedback, and setting clear and realistic expectations and boundaries.
These cognitive changes can be hard to cope with, both for your loved one and for you. Remember that you are not alone and that there are resources and support available for you.
Diagnosis and Treatment
The doctor will ask you about your medical history, do a physical exam, and order some tests to check your brain. Some of the tests that may be done are:
MRI scan: This test uses a strong magnet and radio waves to create detailed images of your brain. It can show the size, shape, and location of the tumor and other abnormalities in the brain.
CT scan: This test uses X-rays to create cross-sectional images of your brain. It can show the tumor and its effect on the surrounding structures.
PET scan: This test uses a radioactive substance that is injected into your vein. The substance travels to your brain and gives off signals that are detected by a special camera. It can show how active the tumor is and if it has spread to other parts of the body.
Biopsy: This test involves taking a small sample of the tumor tissue and examining it under a microscope. It can confirm the diagnosis of brain cancer and determine the type and grade of the tumor. The type of the tumor tells what kind of cells it is made of, and the grade of the tumor tells how fast it is growing and how likely it is to spread.
The treatment for brain cancer depends on many factors, such as the type, grade, and location of the tumor, your age, your overall health, and your preferences. The main goals of treatment are to remove or shrink the tumor, prevent, or reduce the symptoms, and improve your quality of life. Some of the treatment options for brain cancer are:
Surgery: This is a procedure where the doctor tries to remove as much of the tumor as possible without harming the normal brain tissue. Surgery can be done through a small hole in the skull or by opening a larger part of the skull. Surgery can help relieve the pressure in the brain, reduce the symptoms, and improve the chances of survival.
Radiation therapy: This is a treatment where high-energy rays are used to kill the cancer cells or stop them from growing. Radiation therapy can be given from a machine outside the body (external beam radiation) or from a device inside the body (brachytherapy). Radiation therapy can be used after surgery to destroy any remaining cancer cells, or as the main treatment if surgery is not possible or too risky.
Chemotherapy: This is a treatment where drugs are used to kill the cancer cells or stop them from growing. Chemotherapy can be given by mouth, by injection, or by infusion into the vein. Chemotherapy can be used alone or in combination with radiation therapy or other treatments. Chemotherapy can help shrink the tumor, delay its growth, or prevent it from coming back.
Targeted therapy: This is a treatment where drugs are used to block the specific genes, proteins, or pathways that are involved in the growth and survival of the cancer cells. Targeted therapy can be given by mouth, by injection, or by infusion into the vein. Targeted therapy can be used alone or in combination with other treatments. Targeted therapy can help stop or slow down the tumor growth or make it more sensitive to radiation therapy or chemotherapy.
Immunotherapy: This is a treatment where substances that stimulate the immune system are used to fight the cancer cells. Immunotherapy can be given by injection, by infusion into the vein, or by implantation into the brain. Immunotherapy can be used alone or in combination with other treatments. Immunotherapy can help boost the body's natural defenses, kill the cancer cells, or prevent them from spreading.
Providing Care and Support
Caring for someone with brain cancer can be challenging, but also rewarding. You can make a difference in your loved one's quality of life by providing care and support in the following areas:
Open Communication: Communication is key to building trust and understanding between you and your loved one. You can maintain honest and open conversations about your loved one's wishes, fears, and concerns. You can also listen actively and show empathy to create a safe space for sharing. You can use words, gestures, or other ways to communicate, depending on your loved one's abilities and preferences.
Comfort and Pain Management: Comfort is essential to your loved one's well-being. You can ensure comfort by managing pain and discomfort that your loved one may experience. You can follow the prescribed medication schedule and communicate any changes or side effects to the medical team. You can also use other methods to relieve pain, such as massage, music, or aromatherapy.
Emotional Support: Emotional support is vital to your loved one's mental health. You can offer emotional support by being present, patient, and understanding. You can also engage in joyous and comforting activities with your loved one, such as watching a movie, playing a game, or reading a book. You can also help your loved one cope with their emotions by listening to them, encouraging them to express their feelings, or doing relaxing activities with them.
Nutrition and Hydration: Nutrition and hydration are important to your loved one's physical health. You can provide nourishing meals and encourage hydration for your loved one. You can consult with the medical team about your loved one's dietary needs and preferences. You can also use supplements, snacks, or fluids to boost your loved one's intake.
Personal Care: Personal care is necessary to your loved one's hygiene and dignity. You can assist with daily activities such as grooming and dressing for your loved one. You can respect your loved one's preferences and maintain their dignity by asking for their consent, giving them choices, and protecting their privacy.
Providing care and support for your loved one can be rewarding, but also stressful and exhausting. Remember to take care of yourself as well. You can seek help from others, such as family, friends, or professionals. You can also take breaks, relax, and do things that you enjoy.
Providing End-of-Life Care
There may come a time when the cancer treatment is no longer working, and your loved one is nearing the end of life. This can be an exceedingly difficult and emotional time for both of you. You may feel sad, angry, scared, or numb. You may also have many questions and concerns about what will happen and how to help your loved one. This section will give tips on providing end-of-life care and ensuring comfort and peace for your loved one.
Hospice Care: Hospice care focuses on making your loved one as comfortable as possible in the last months, weeks, or days of life. Hospice care does not try to cure cancer or prolong life but rather to relieve pain and other symptoms, such as nausea, shortness of breath, or anxiety. Hospice care also provides emotional and spiritual support for your loved one and family. Hospice care can be given at home, in a hospital, or at a hospice facility, depending on your loved one's needs and preferences. You can help your loved one by:
Talking to the doctor about hospice care. You can ask the doctor if your loved one is eligible for hospice care and when it might be appropriate to start. You can also ask the doctor for a referral to a hospice program in your area. You can find more information about hospice care from the National Hospice and Palliative Care Organization or the American Cancer Society.
Choosing a hospice program that meets your loved one's needs. You can compare hospice programs based on their services, staff, costs, and location. You can also visit the hospice facility or talk to the staff to understand their philosophy and approach. You can ask questions such as:
What services do you offer, and how often?
Who will be part of the hospice team, and how will they communicate with us?
How do you manage pain and other symptoms?
How do you provide emotional and spiritual support?
How do you handle emergencies or after-hours calls?
How do you coordinate with other healthcare providers?
How do you bill for your services, and what insurance do you accept?
Working with the hospice team to create a care plan. The hospice team will include a doctor, a nurse, a social worker, a chaplain, a counselor, a home health aide, and a volunteer. They will work with you and your loved one to create a care plan that reflects your loved one's wishes and goals. The care plan will include details such as:
What medications and treatments will your loved one receive, and how will they be administered?
What equipment and supplies will your loved one need, and how will they be delivered?
What comfort measures and complementary therapies will your loved one use, such as massage, music, or aromatherapy?
What emotional and spiritual support will your loved one and your family receive, such as counseling, prayer, or rituals?
What legal and financial matters must your loved one and your family address, such as advance directives, wills, or funeral arrangements?
Providing care and support for your loved one. You will be the primary caregiver for your loved one, but you will not be alone. The hospice team will visit your loved one regularly and be available by phone 24/7. They will teach you how to care for your loved one, such as giving medications, changing dressings, or using equipment. They will also monitor your loved one's condition and adjust the care plan. You can also ask for help from other family members, friends, or volunteers. You can help your loved one by:
Giving them their medications and treatments as prescribed and on time. Do not skip or change the doses without consulting the hospice team.
Keeping track of their pain and symptom level and how well the medications and treatments are working. Report any changes or concerns to the hospice team.
Providing comfort measures, such as massage, heat, ice, or distraction. You can also help them find a comfortable position, use pillows or cushions, or adjust the lighting or temperature in the room.
Being there for them emotionally and spiritually. Listen to their feelings and concerns without judging or interrupting. Try to be positive and hopeful but also realistic and honest. Share your feelings and fears with your loved one or someone you trust. You can also seek professional help from a counselor or therapist if you or your loved one are feeling overwhelmed, depressed, or anxious.
Emotional Well-being: The end of life can be a time of mixed emotions for your loved one and family. Your loved one may feel grateful, peaceful, or relieved but also sad, angry, or scared. They may also have regrets, unfinished business, or unfulfilled dreams. You can help your loved one by:
Help them find meaning and purpose in their lives. You can help them reflect on their life story, achievements, values, and legacy. You can also help them express their gratitude, forgiveness, or love to those who matter to them. You can use different methods like writing, drawing, recording, or making a scrapbook.
Helping them cope with their fears and worries. You can help them identify and address their sources of fear and worry, such as pain, suffering, loss of control, or the unknown. You can also help them find ways to reduce their anxiety and worry, such as talking, praying, meditating, or breathing. You can also help them find comfort and hope in their faith, beliefs, or philosophy.
Helping them create cherished memories. You can help them make the most of their time with their loved ones. You can help them plan and enjoy special occasions like birthdays, anniversaries, or holidays. You can also help them create meaningful gifts, such as letters, videos, or jewelry, for their loved ones to remember them.
Conclusion
Caring for a loved one with brain cancer requires empathy, patience, and understanding. By observing changes, providing compassionate care, and preparing for the end of life, you can help your loved one navigate this journey with comfort and dignity. Remember that you are not alone—support from medical professionals and hospice services is available to guide you every step of the way.
