Caregiving Index of Terms and Topics
In addition to index of caregiving topics and phrases below, the ABTA also maintains a comprehensive list of brain tumor terms covering medical terms and common acronyms as well as diagnosis and treatment topics.
ABTA Connections. A private, online support group for patients, family, friends and caregivers of those with brain tumors. Appointment preparation. Being prepared for appointments can help patients and caregivers get the most out of limited time with key medical professionals. Read more at Navigating the Health System or download these PDFs about appointment preparation for brain tumor patients and caregivers.
Care Coordinator. A family member or friend who has volunteered to help the primary caregiver(s) by being the principal contact for others who want to contribute time or services for patient care. The care coordinator may also be the chief communicator about the patient’s condition. Read more in Getting the Help You Need, and Tips for Extended Family and Friends. Specific tasks are listed in this checklist of tasks for the care coordinator and volunteers.
Caregiver burnout. Although most caregivers experience strong emotions and fatigue, caregiver burnout is a pervasive state that occurs when caregivers are unable to get the help they need and care for themselves. Warning signs are similar to depression. Read more in Caring for the Caregiver.
Caregiving tasks. Caregivers of brain tumor patients perform many roles, but can also assign tasks to friends and family. Caregivers can determine the help they need with this list of caregiver tasks for the brain tumor patient.
Children and teens: Communicating. It can be particularly difficult to know the right way to help children and teens cope when a parent or family member has a brain tumor. Read more about helping teens and children cope.
Clinical trial. New or experimental treatments offered to qualified brain tumor patients. Learn more about clinical trials for brain tumors, or visit TrialConnect®, the ABTA’s clinical trial matching service.
Community resources. Outside services and resources such as adult daycare or in-home care. These can either be specific to brain tumors, or more general, geared towards caregivers or cancer patients. See the ABTA’s listing of day-to-day care options for brain tumor patients, or read more in Getting the Help You Need.
Coping strategies. Most caregivers find themselves experiencing a wide range of emotions. Caring for the Caregiver includes a list of physical, spiritual and practical ways you can cope with the many changes taking place.
Falls. When a brain tumor patient experiences a fall, it may be difficult for the caregiver to determine the seriousness of the event. Because of the unknowns, it is best to call for help if the caregiver believes the patient is hurt. Read more about how to prevent falls in Safety at Home.
Family Expectations. The diagnosis of a brain tumor can affect the entire family of the patient. Read more about how to manage being a caregiver while being part of a family which includes information on many different family relationships, including spouses, grandparents/grandchildren, and adult children taking care of their parents.
Health insurance. Most patients and caregivers find it helpful to have a thorough understanding of their health care plan to better make decisions about brain tumor treatment. If you are insured and have questions about your coverage, contact the insurer so you clearly understand your benefits. A social worker at your local hospital or the caring professionals at the ABTA CareLine, 800-886-ABTA (2282), can help answer questions about health insurance. For more information, read Navigating the Health System.
Holidays. Some caregivers find themselves at a loss about how to celebrate holidays. Learn more about how other families celebrate holidays in the section on the Impact on the Family Unit.
Home care. A variety of services that care for a brain tumor patient in his or her own home, including non-medical companion care, hygiene and household care, as well as skilled medical care. Read more in Getting the Help You Need.
Home safety. Many caregivers need to make changes at home to create a safe environment for the brain tumor patient, as well as learn how to keep themselves safe and uninjured when moving the patient. Read more in Safety at Home.
Hospice care. A specialized approach to medical care, pain management and caregiver support for people facing a life-ending illness. The aim of hospice to allow the patient’s condition to unfold as comfortable as possible and provide dignity for the patient. Read more about hospice care for brain tumor patients . The ABTA’s guide to Hospice Care offers additional resources.
Organization. Organizing and prioritizing caregiving tasks can often seem like a fulltime job. These resources and checklists can help prioritize and solve problems, ask for help and keep track of medications, treatments and schedules.
Palliative care. Medical care that is centered on improving the patient’s and his or her family’s quality of life during treatment in addition to the main medical treatment that focuses on removing and reducing the brain tumor. Palliative care begins at diagnosis. Read more about palliative care for brain tumor patients.
Patient advocate. There may be times when the brain tumor patient will need the caregiver to be the primary coordinator for his or her care. The caregiver can be an advocate by understanding the patient’s medical team and roles, as well as how the healthcare system works. Patients who do not have a family member able to serve as an advocate may be able to arrange representation through their hospital. Read more about being a patient advocate in the Role of the Caregiver and Navigating the Health System.
Primary care team. Medical professionals who have major input about the patient’s treatment plan. They can include the neurosurgeon, the neuro-oncologist, the patient’s primary care physician, as well as nurses and social workers. Read more in Navigating the Health System.
Second opinion. After the initial diagnosis and/or treatment plan has been determined, brain tumor patients and caregivers may want feedback from another expert. A second opinion can confirm a diagnosis or decision or provide another point of view. Some insurance companies require a second opinion. Read more about how to ask for a second opinion in brain tumor diagnosis and treatment.
Self-care. When the caregiver makes sure to take care of his or her emotional and physical wellbeing, it can truly lead to an improved quality of life for the brain tumor patient. Caregivers can learn more in Caring for the Caregiver.
Side Effects: Managing. Brain tumors and their treatments can produce a variety of side effects and symptoms. Learn more about managing the physical side effects of brain tumors as well as cognitive and psychological side effects.
Specialists. The patient may come into contact with a wide variety of medical specialists such as a neuropathologist, neuroradiologist and rehabilitative specialists who all have various roles in brain tumor treatment. Read more in Navigating the Health System.
Support Groups. For brain tumor patients or those caring for brain tumor patients, attending a support group can be very helpful. These groups allow you to talk in person with others who have gone through or who are going through a similar experience. The ABTA has a nationwide listing of local brain tumor support groups.
Symptoms Log. It can be helpful for patients and caregivers to keep track of side effects and symptoms in a daily brain tumor symptoms log that includes information about what the patient is experiencing, whether it is accompanied by other symptoms, duration, severity, etc.
Transferring the patient. The brain tumor patient may require help and support from the caregiver to move from one place to another. This can require varying amounts of effort and/or equipment depending on support needed by the patient, the size and strength of both the patient and caregiver, and the task at hand. Read more in Safety at Home.