I recently had the opportunity to speak to Dr. Zachary White and Donna Thomson about their new workshop for caregivers. Their new workshop is focused on helping caregivers make sense out of their new roles and navigate those changes.

 

N: What do you find are the biggest barriers for caregivers when they are trying to navigate between home and work?

 Dr. Zachary White: In the inevitable blurring of work and home life, caregivers must constantly negotiate the possible rewards of receiving peer support at work while also attempting to make good judgments about who and how to share their experiences.

On the one hand, they want to openly express what is going on in their lives as it pertains to their caregiver role.  On the other hand, caregivers also understand the possible risks of disclosing their caregiver experiences in the workplace.  For example: who should they share their experiences with? Who do they not want to know? What is the best way to communicate their chronic care experiences that seemingly defy other types of news sharing in the workplace?  How might colleagues view them after their disclosures? Will colleagues feel like their care responsibilities will take away from their productivity and workload?  How often should they share their care challenges and in what manner (e.g. in person, telephone, email, text)?

Work and home challenges require an ability to effectively navigate these overlapping and sometimes contradictory aspects of life.  Our workshop is designed to help caregivers explain their care-based experiences to others because we know being able to communicate care adds value to their role and enhances social support opportunities.

Donna Thomson: The culture of care and the culture of work are, sadly, at odds. At home, we gauge success by the wellbeing and comfort of our loved one. At work, we call success productivity or the number of ‘outputs’ achieved. In our society, work has moral superiority over home life. “I can’t go with you because I have to work” is a phrase that will provoke solemn, sympathetic nods.

‘Work’ is more important than relationships in our world, so the language to negotiate a balance between these two worlds is vital. But we don’t have the words to express one to the other, even in our own internal monologues. Navigating between home and work for caregivers begins with the language to mediate these two worlds. That mediation begins by helping caregivers to articulate their home experience, value it, and express it in ways that also reflect the work experience.

 

N: What impact does the care experience have on value systems?

 Dr. Zachary White: Deep care for another person can’t help but change how a person makes sense of the world.  Informal, chronic caregiving makes us question what we take for granted because:

(1) care occurs in their own homes (not a hospital) without the guarantee that the person they care for will physically improve or return to life as usual;

(2) care may occur without a determined end in sight; and

(3) care occurs without the fanfare and appreciation that often accompanies acute, health experiences.

As a result, caregivers, must come up with new answers to the ‘why’ question not only about the person they love, but also about themselves, the value of their care role, and how their care for another changes not only what they value, but how they value.

Donna Thomson: Caregiving has a profound effect on our value systems because it is bound up with experiences of injustice and loss. As children, we may believe that if we try our best, work hard and are kind to others, nothing ‘bad’ will happen to us or to those we love. The ephemeral nature of life and mortality shock caregivers into re-examining everything they once held true. The unfairness of illness, aging, suffering and death provoke profound shifts in values and those shifts are at odds with the values in our popular culture of youth, health and immortality.

  

N: Does storytelling play an important role? And if so how does it do that?

 Dr. Zachary White: Storytelling plays a vital part in the caregiver role.  Caregivers often find themselves voiceless because the script that used to work for them no longer makes any sense.  Most others’ narratives assume today will be like yesterday, allowing them to project and predict their lives well into the future. For caregivers, time is chaotic, unpredictable, and sometimes, seen as a threat given their loved one’s unreliable physical status.

For most others, stories are all about the first person—my life, my plans, my goals, and my dreams.  For caregivers, stories are co-authored with a protagonist whose body requires a constant adjustment that strips caregivers of the illusion of control.  Even more, caregiver narratives must constantly respond to others’ well intentioned, but challenging questions, such as:

“When will he/she get better?”

“So, you’re caring for your loved one—but what about your life?”

Throughout, caregivers must try to create their new narrative alone and apart from the world, without the tools and practice to be able to begin the collaborative process of trying on a new narrative to meet their newfound realities.

 

Donna Thomson: Storytelling is important for caregivers because it helps us locate meaning in our experience. “I feel like I am disappearing” or “I feel lost” are phrases that caregivers use to describe the common experience of being what philosopher Eva Feder Kittay calls “the caring, transparent self”.  Storytelling puts the caregiver back into the story with the loved one, transforming the personal narrative as it is shared with others. Through storytelling, caregivers can locate themselves in their experience as they validate emotions and the value of their care work.

 

N: How do you hope to impact caregiver resilience through this workshop?

 Dr. Zachary White: This workshop enhances caregiver resilience because we help participants begin the process of caregiver-specific sensemaking.  Using specially designed narrative strategies, we meet caregivers where they are, in the midst of their experiences, to help them begin the process of constructing a narrative that aligns with their experiences.  Throughout, participants will learn how to (re)claim meaning from their everyday care experiences, situate their experiences in a larger structure of value, and learn how to communicate their experiences to outsiders while also honoring their care experiences.

Simply put, this workshop is our orientation session for caregivers, brought to them in ways that allow them to reorient themselves to the overlooked but essential caregiver role.

 Donna Thomson: The process of caregiver-specific sensemaking as described by Dr. White is a wonderful way to express what we hope to achieve in this workshop. We hope that caregivers in this workshop will locate meaning and value in their own care experiences, but also that they will develop a vocabulary and narrative that will enable sharing outside of family and home.

 

N: Why do you think it is important to develop this language around the transformational effect of caregiving on the caregiver?

 Dr. Zachary White and Donna Thomson: Caregiving has for too long been conceived as an individual and private experience. Though the acts of care often occur in the privacy of our homes, caregiving is always a social act. Caregivers must begin to develop a language that maps their authentic experiences in an affirmative manner. Instead of having to respond to others’ beliefs about their experiences (e.g., “It must always be depressing,” “It’s taking you away from what you really want to do”), this workshop will help caregivers more effectively express their experiences in an authentic and understandable manner.

Developing a language that meaningfully resonates with their experiences is an essential step toward creating and leveraging social support, connecting to others, and explaining care experiences in ways that builds bridge between them and others.  Without a language to explain their experiences to others, caregiving will remain mysterious and stigmatized, negatively affecting caregiver empowerment and resilience.  This workshop is designed to enhance caregivers’ abilities to explain the ‘why’ of their care in ways that will not only educate others, but also remind them of the enduring value of their role.

 

N: Caregiving is a transformational experience in all our lives and it is worthwhile to take the time to make sense of it. Thank you for sharing your experiences with me today.

Nicole Scheidl

As one of the founders and creative minds behind Fit Minds Inc., Nicole has been creating cognitive stimulation therapy programming since 2010. An experienced curriculum developer, teacher and coach, she brings a wealth of experience to creating and teaching the Fit Minds Program.

Nicole has trained hundreds of professional and family caregivers who have touched the lives of thousands of individuals living with a cognitive impairment. Nicole also holds a law degree from Osgoode Hall Law School, a Master’s in Law from Queen’s University specializing in Negotiations and is a Certified Professional Consultant on Aging.

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