“In the neuro-oncology world, our patients may have difficulty talking, difficulty walking, difficulty doing the basics, taking a shower, using the bathroom. There are also patients who may or may not be a little bit more impulsive just based on the location of their tumor and the type of tumor they have,” Dr. Michael Youssef, a neuro-oncologist at Houston Methodist, tells SurvivorNet.

These neurological changes can place significant emotional and physical demands on caregivers, especially when they balance caregiving responsibilities with jobs, parenting, and other family obligations.

Understanding Glioma and Its Impact on Daily Life

Gliomas are tumors that develop from glial cells, the supportive cells of the brain and spinal cord. Depending on the tumor’s location and size, patients may experience symptoms that affect movement, speech, memory, decision-making, and independence.

As a result, caregivers often take on responsibilities that extend far beyond transportation to medical appointments. They can become medication managers, advocates, emotional supports, and sometimes full-time assistants for daily activities.

According to Dr. Youssef, caregivers are essential members of the care team.

“Caregivers are the ones who are helping these patients on a day-to-day basis. They’re the ones helping with medication. They’re the ones helping patients come to appointments and MRIs and labs, and they’re helping them just survive at home. They’re doing the heavy lifting that the patient can’t do.”

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The Caregiver’s Role: Love in Action

Caregiving often involves both practical and emotional support. Whether the caregiver is a spouse, sibling, parent, friend, or adult child, their role frequently includes:

• Attending medical appointments and helping ask important questions
• Providing transportation to treatments, imaging scans, and follow-up visits
• Tracking symptoms, side effects, and treatment schedules
• Communicating with physicians and care teams
• Coordinating with social workers, patient navigators, and support services
• Helping manage household responsibilities and daily routines
• Offering emotional reassurance during difficult moments

For many families, caregivers become the bridge between the patient and the healthcare system.

Why Caregivers Need Care Too

While many caregivers focus entirely on their loved one’s needs, Youssef says neglecting personal well-being can ultimately hurt both the caregiver and the patient.

“You need to take time for yourself. You need to give yourself some grace, and it’s normal to be frustrated, or it’s normal to be upset when you see your loved one like that,” Dr. Youssef explained.

Feelings of sadness, frustration, exhaustion, guilt, and anxiety are common among caregivers. Experts stress that acknowledging these emotions is not a sign of weakness but a normal response to a challenging situation.

Avoiding Caregiver Burnout

One of the most important lessons Youssef shares is that caregiving should never be a one-person job.

“I always tell people: have a second caregiver, get out of the house, make time for yourself.”

Additional support can give caregivers time to rest, attend to their own health needs, spend time with friends, or simply take a mental break.

Without that support, burnout can become a serious concern.

“The last thing you want is a burned-out caregiver and a burned-out patient who can’t do much for themselves. You want to preserve that relationship. Too often, I see caregivers trying to take it all on themselves, and a few months later they’re disheveled,” Dr. Youssef explained.

Maintaining healthy boundaries and accepting help when it is offered can help preserve both the caregiver’s health and the relationship with the patient.

Potential sources of assistance may include:

• Family and friends who can provide transportation or meal support
• Home health aides
• Oncology social workers
• Patient navigators
• Religious or community organizations
• Caregiver support groups
• Respite care services

These resources can ease the burden and help caregivers sustain their efforts over the long term.

Mental health counseling, support groups, financial guidance, and conversations with oncology social workers can also help caregivers navigate challenges before they become overwhelming.

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