After a brain tumor diagnosis: Establishing a "new normal"

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By Sarah Hines and Rebecca Savoie, social work counselors

A cancer diagnosis is almost universally a life-changing event, with significant effects on patients, family and other loved ones.

Patients and caregivers affected by a brain tumor diagnosis often face a unique set of challenges because a brain tumor is often associated with the sudden onset of symptoms that have both physical and cognitive effects.

Brain tumor patients: Common challenges
Some common challenges faced by brain tumor patients include:
  • Physical symptoms like headaches, seizures, vision and hearing loss, weakness or inability to move arms and legs and difficulty moving around
  • Difficulty with language, both understanding and communicating  
  • Impaired reasoning, processing and decision-making capacity
  • Word-finding difficulty, memory concerns and attention deficits
  • Changes in personality and behavior (aggression, irritability, impulsivity or depressive symptoms)
  • Loneliness, loss, anticipating loss or anxiety about death
  • Role changes (from caregiver to the cared for, from breadwinner to disabled, from partner in relationship to dependent)
  • Knowing who and how much to tell about your disease and when 
  • Difficulty navigating the health care system and communicating with health care professionals

Brain tumor caregivers: Common challenges
Some common challenges faced by caregivers of brain tumor patients include:
  • Coping with and experiencing anxiety, anger, resentment, depression, guilt and/or grief
  • Coping with a loved one's changes in personality and behavior
  • Career sacrifices
  • Financial concerns
  • Decreased attention to one's own physical and emotional health
  • Managing caregiver fatigue
Establishing a "new normal"
Following a brain tumor diagnosis, it is common to want things to return to "normal." However, patients and family members often discover that the aforementioned challenges pose huge barriers. 

Fortunately, steps can be taken to manage these challenges and establish a "new normal."

Care in the home
It can be a challenge to determine how to best establish safe and efficient care in the home for a brain tumor patient. Under most circumstances, the caregiver role is played by family members and friends who dedicate their time and patience to meeting their loved one's needs. 

However, caregivers may want to consider the following supplemental services to provide brief respite and additional amenities:

  • Physical therapy or occupational therapy in the home can help make the adjustment easier on the patient and caregiver. Ask your doctor or medical team about this.
  • Services to assist with cleaning, cooking, bathing and other daily activities can help trim the caregiver's to-do list. Check with a social worker or case manager to see if you qualify for extra help.  
Not all patients will qualify, and there is often a cost associated with these home care services. But the benefits that they can provide make them worth looking into.

Neuropsychology assessments
Ask your medical team about a neuropsychology assessment. These assessments generally evaluate:

  • Intellectual functioning
  • Motor functioning
  • Executive functioning (motivation, planning and organizational skills)
  • Memory
  • Speech
  • Language
  • Visual perception
  • Attention
  • Mood and behavior 
  • Quality of life
This type of assessment can help brain tumor patients make adjustments in their home and work environments, seek appropriate counseling and rehabilitative services or support an application for disability.

Counseling services
Social work counselors or other local therapists can provide individual and group counseling to help with adjustment to diagnosis and treatment, managing role changes, children coping, loss of job, physical abilities and independence, communication issues, changes in mood and behavior, and intimacy concerns.

Gather support 
Connecting with others living with a similar diagnosis can be helpful for many cancer patients. By attending support groups, peer support programs and patient conferences, you can gain valuable knowledge from the experiences of health care professionals and fellow patients.

Here are a few helpful support resources for brain tumor patients and caregivers:

  • MD Anderson support groups: MD Anderson social work counselors lead a variety of  support groups for cancer patients, caregivers and families.
  • Support programs in your community: Patients and caregivers can often find support programs and services in their local communities The American Cancer Society is a great resource to help identify local resources.
  • Together in Hope Conference: MD Anderson social work counselors will facilitate support groups at this year's conference, held on August 9-11, 2013 at the Omni Houston Westside. This is a great opportunity for patients and loved ones to learn about cutting-edge brain tumor research, as well as new sources of support and healthy coping strategies. Register online or contact the Department of CME/Conference Management at 713-792-2223 to learn more.
If you have any questions or would like additional information about the topics mentioned, please contact the Department of Social Work at 713-792-6195, or ask your nurse or doctor to speak with a social work counselor.

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