The Role of the Caregiver
As the caregiver of someone with a brain tumor, you will have multiple roles. You may find yourself becoming a medical researcher, a financial manager, a patient advocate, and a communicator. Caregiving can become a fulltime job, even if you already have a fulltime job. As the patient’s needs change over the course of the disease and treatment, so will the tasks you undertake.
The American Brain Tumor Association has drawn on the experiences of thousands of people who have cared for patients with brain tumors to create a map to help you navigate the many roles you may take on as a caregiver to a brain tumor patient.
First task: prioritize and solve problems
I focused on getting through each day, breaking steps into manageable pieces.
Your role as a caregiver can be complex and filled with uncertainties. As situations change daily, or even hourly, as a caregiver you can help identify and solve problems. Handling a seizure is obviously more critical than setting up a doctor’s appointment.
In the book Orientation to Caregiving, written by experts at the University of California, San Francisco, the authors suggest that caregivers categorize problems and tasks based on both their urgency and their importance.
A severe fall in the home is both urgent and important, so of course you would need to handle it immediately. Researching treatment options is important, but not urgent, so can be scheduled later. Other tasks can be delegated to others, and, as you prioritize all you need to do, you will discover that some items are simply not priorities now and can be ignored.
Other caregivers have prioritized tasks by offering the following advice:
- Take it one day at a time.
- Break tasks into manageable pieces.
- If it’s hard to ask for help, start by picking just three things someone else can do.
- Don’t be too hard on yourself or try to be perfect. It’s difficult to adjust to the “new normal.”
- There’s no one right way of doing things.
Learning to be a patient advocate
The medical care for a brain tumor is complex, and you will likely come into contact with a large, multidisciplinary medical team.
While there are many aspects of coordinating the care for a brain tumor patient, most caregivers understand that they need to be the patient’s advocate throughout the process. You can be an advocate by:
- Understanding the medical team and their roles, including hospital staff, clinic staff, specialists, and other health care professionals. Detailed information on each can be found in Orientation to Caregiving, Chapter 4: “Tasks of Caregiving in the Hospital and Clinic.”
- Involving the patient as much as possible. This can become an increasingly important responsibility, particularly if the patient has difficulty communicating. You can be the patient’s voice, making sure the patient has a thorough understanding of the choices he or she must make and ensuring his or her questions are answered.
This can also be a challenging task, particularly if you are unsure of the patient’s cognitive state. One caregiver was extremely distraught when his wife refused to go to treatment at a hospital that he had chosen, not knowing whether her refusal was a result of a cognitive impairment. He made the difficult decision to go to the hospital she chose as to not disempower her.
- Learning about treatment options.
Considering a clinical trial? TrialConnect™ can help match patients with available brain tumor clinical trials.In this capacity, you are the researcher. In addition to the treatments recommended by medical professionals, the ABTA has partnered with EmergingMed to offer a free, confidential, personalized matching service called TrialConnect™ that can help match the patient you are caring for with the available clinical trials based on their brain tumor type and treatment history.
Becoming the patient’s chief communicator
We are very private and it’s hard for me to ask for help…
Although it can be difficult for some, in your role as a caregiver you can help communicate about hard-to-discuss topics with others, whether that means with the medical care team or friends and family. More information is available on each of these topics:
- Advocating for the patient in medical settings
- Informing family and friends of the patient’ medical condition
- Asking for help
Performing day-to-day management
As caregiver, you will have a role in ensuring daily activities can help facilitate a good quality of life for the patient. This may include routine tasks around the house such as food preparation or arranging travel to a clinic. Other jobs could include creating a safe home environment for the brain tumor patient, or changing surgical dressings. You could also become responsible for helping the patient with personal hygiene tasks, such as bathing, oral hygiene, and skin and hair care.
Attempting to live as normal a life as possible for yourself and for the patient can be demanding. One way to do this is to simply provide companionship to one another, as well as to avoid isolation by planning and joining in on recreational activities with family and friends whenever possible. You may also begin to consider home care or palliative care options.
Time management tools
The ABTA has a variety of checklists and calendars to help you organize both every-day and caregiving activities.
With all you need to handle, being able to manage your time efficiently becomes critical. Scheduling both routine tasks (laundry, grocery shopping) as well as tasks related to brain tumor treatment (appointment scheduling, performing physical therapy exercises at home) can take up much of your time. Added to your calendar may be times when you receive help from family or healthcare workers, as well as rest and recreational activities for both you and the patient.
Keeping up-to-date records
Because the patient may not be able to keep track of his or her own symptoms and treatments, it most often falls to the caregiver to become the record keeper of all that the disease involves. In his book Brain Tumors: Leaving the Garden of Eden1 , author Dr. Paul Zeltzer recommends keeping a binder with the following sections:
- Pathology reports, MRI and CT scans, which contain critical information about the tumor and diagnosis you can bring to other medical professionals.
- Lab reports and blood tests
- Medication log
- Treatment log, which includes the procedures and services the patient has received, plus dates, side effects, problems, and physician information.
- Resources and information
- Health history
View and download PDFs of the ABTA’s forms to track medications, treatments and health history to see if they work for you.
People with a brain tumor often need multiple medications, not just for management of disease, but for management of many of the side effects of treatments. Medications may be prescriptions and also include herbal supplements and vitamins.
It can be problematic to sort through when, where and how to take all the medications, but mistakes made either by taking the wrong medication or the wrong dosage can lead to serious health consequences. Tips to help manage medications include:
- Inform the doctor of any and all other medications the patient is taking, including supplements.
- When the physician writes the prescription, make sure to ask what the name of the medicine is, what it is for, and what side effects there might be.
- When receiving the prescription at the pharmacy or by mail, double check that you have received the correct medication and dosage.
- Maintain a medication log that tracks all prescription and non-prescription items, including over-the-counter medications and herbal supplements, vitamins, or other holistic treatments. Include what the medication is for, the dosage, the time to take it, side effects, and the name of the doctor who prescribed it.
Your changing role
Your role as a caregiver will change throughout the course of the patient’s illness. For example, after diagnosis, you may be focused on educating yourself about brain tumors and types of brain tumor treatments. At another point, you may be helping the patient manage side effects from treatment. In addition, you may be caring for the patient as he or she goes through cognitive changes.
This may seem overwhelming. But, according to Ashley Varner, an oncology social worker who has worked with hundreds of caregivers of brain tumor patients, most people eventually fall into a rhythm of care, which can be a time to focus on the patient’s quality of life.
“Once families settle on a medical facility and plan of treatment, it’s often a time for caregivers to catch their breath,” she says. “After feeling fairly helpless where the patient is concerned, they are finally in a place to be proactive, whether it’s researching alternative therapies, focusing on diet and nutrition, finding a support group, or investigating home care options.”
Although dad couldn’t speak, he had been a workaholic, so it was the first time he was at home for an extended time period. He was alive for five more years, and although it was difficult, our whole family treasured that time with him.
1Zeltzer P. Brain Tumors - Leaving the Garden of Eden: A Survival Guide to Diagnosis, Learning the Basics, Getting Organized and Finding Your Medical Team. Encino, CA: Shilysca Press; 2004.