Mapping New Directions in Caregiving by Janet M. Cromer, RN, MA, LMHC

Janet M. Cromer-Author

Janet Cromer has been a caregiver.

Welcome to Caregivers Compass! Are you a caregiver for a family member who has a brain injury? Although you may feel alone, you are in good company on your journey. More than 65 million Americans care for a family member at home. Many of them care for a person who has one of the many types of acquired brain injury. The crisis may have begun with a traumatic brain injury, blast injury, hypoxic brain injury, stroke, tumor, or infection. The causes are different, but some consequences are universal. In an instant, a family member is plunged into the wilderness of intensive care units, rehabilitation hospitals, neurology appointments, and then the community.

All of a sudden you are officially declared a caregiver without a compass, job description, or training manual. This uncharted territory comes with a mountain of responsibilities, a foreign language, and unfathomable scores. Not to mention insurance limits. You are assigned to be the guide and coordinator. No wonder you call out, “Help! I’m lost in here! Where’s my road map?”

Who is a brain injury caregiver?

Caregivers are a diverse and dynamic group of human beings. We each bring a unique life story and personality to the role. We are spouses, partners, parents, siblings, children, and close friends. We might not even think of ourselves as caregivers because helping someone we love comes naturally as a parent or husband. Others prefer the term “care partner” when they collaborate with, assist, and support the survivor.

Children are often the overlooked or hidden caregivers. A survey by the National Alliance for Caregiving estimates that at least 1.3 million children in the U.S. between the ages of 8-18 care for a sick or disabled sibling, parent, or grandparent. Many care for a brother while parents work, or help a parent learn to read again. Brain injury is well represented among the diagnoses studied.

For adult caregivers, our titles and roles change as the journey progresses. In the beginning, most of us start as a crisis manager juggling tough medical decisions, family life, and even a job. Then, during months or years of rehabilitation, you become a coach, maybe even a drill sergeant. A child becomes Dad’s teacher as he explains how to spell or play a computer game.

Persons who have a severe brain injury might require complex medical care at home. That caregiver feels more like a nurse and physical therapist than a wife as she gives tube feedings, suctions a tracheotomy, and moves her husband’s weak legs through range of motion exercises.

Brain injury can contribute to problems that affect memory, mood, cognition and behavior. This means that caregivers often become counselors, behavior coaches, and emergency responders. Fortunately, there is now effective treatment available for conditions such as depression or post-traumatic stress disorder (PTSD). However, both military and civilian families can feel at a loss to understand and help a son whose personality and behavior have changed dramatically. Recovery requires a combination of good treatment, time, and effort.

By the time you have been a caregiver for a few years, you probably summarize your role as “the CEO of Our World.” You might take pride in your valuable contributions, even as you worry about finding vocational training for your wife or a supportive place for your daughter to live as you get older.

There is one important title that every family caregiver learns and earns: Fighter and Advocate! We should be awarded trophies for the advanced skills and commitment that empower us to partner with the survivor to live a full and meaningful life every day. We grow, and promote growth in others. We start support groups to share our experiences. We get involved and tell our stories to change the healthcare system. We rally for legislative changes, educational reforms, resources, and disability rights.

On one hand, we are strong, powerful and resilient. On the other hand, we can become exhausted and overwhelmed. Did you know that caregivers have higher rates of chronic disease and depression than non-caregivers? We are also vulnerable to traumatic stress from caring for a person who suffers, is in pain, or very disabled.  There is even a form of severe mental and physical exhaustion, known as compassion fatigue. This condition leads to a depletion of resources and interferes with every dimension of life. 

What helps prevent some of the health hazards associated with caregiving? How can we replenish our strength, motivation, and empathy at each stage? 

Realistic resilience skills

No matter where you are along the continuum of caregiving, there is an essential ability that fortifies and sustains body, mind, and spirit. I call it “realistic resilience.” Resiliency has been defined as the ability to cope well with high levels of ongoing, disruptive change. Resiliency allows us to bounce back, adapt to changes, and move forward. The realistic part comes in because resilience requires us to recognize and acknowledge changes and losses, and embrace what is real now. We don’t pretend, or deny our feelings. We push past the edges of our comfort zone to enter new territory, even if we feel anxious or insecure. That bravery allows us to use active coping strategies and creativity to solve problems, learn new skills, and care for ourselves and others.  

Two key categories of resilience in particular have been shown to reduce the risk of health problems and compassion fatigue – stress resilience and emotional resilience. You have probably heard the standard advice to priotitize time for yourself, set boundaries, and put your own oxygen mask on first. Tried and true advice.

Compass

Monitor your level of stress and fatigue

However, Caregivers Compass will supplement what you already know with innovative approaches to make your own. For instance, here is a practice, called a body scan, to try right now. Sit comfortably in your chair, close your eyes, and bring your attention to your breath. Just breath naturally, in and out a few times. Starting at the top of your head, slowly draw your attention down the length of your body, front and back. Keep your mind open and non-judgmental. Just notice any spots that feel sore or tense. Notice any areas where worry or anger might be hiding out? Let your breath flow easily. You might try inhaling into a sore spot to soothe the area, and then exhaling a bit of pain. Note any feelings you might want to explore later in your journal or a conversation with a friend. Sit for as long as you like. Breathe, stretch, then smile and continue your day. 

We’ll delve into serious issues such as caregiver trauma, compassion fatigue, and mental health concerns. Prevention is the best medicine. So, we will offer explanations along with proven techniques to minimize the worst kinds of stress. We will show you new ways to reverse the stress response, manage troubling emotions, and approach responsibilities more confidently. 

The topics that caregivers sometimes consider “taboo,” yet dive into with each other, will also find a voice in Caregivers Compass. Topics such as the caregiver’s sexuality, anger, and need for an identity beyond caregiving deserve exploration.

There are many routes to becoming a resilient and masterful caregiver. Join us to forge a strong and inventive community sharing our journey.

Janet Cromer, RN, MA, LMHC, is a psychiatric RN and the author of Professor Cromer Learns to Read: A Couple’s New Life after Brain Injury. Janet speaks nationally on family and professional caregiver issues including stress resilience, traumatic stress, compassion renewal, seasons of caregiving, and creativity and healing. See more at http://www.janetcromer.com.

Source

Special Collection on Brain Injury Journey

Special Collection on Brain Injury Journey

This article is posted with permission from Brain Injury Journey – Hope, Help, Healing, Vol 1, 2014.

http://www.lapublishing.com/Brain-Injury-Journey-Magazine-Special-Collection-Vol-1

 

 

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