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The Burden That Sustains Us

The top five things we all need to know about caregiving.

It’s Saturday morning, and I’m entering my local grocery store. At the doors, I observe an older woman in a motorized wheelchair having an animated conversation with a younger man who refers to her as Mom. She is insisting she have another grocery bag on hand for some items, and he is insisting she doesn’t need it. The patronizing tone in the son’s voice is difficult to hear – and impossible to miss.

It’s Saturday afternoon, and I’m checking my phone for the time. It’s 1:30 p.m., which means I have exactly 25 minutes to finish my errands and get home in time to take over from our home care nurse. The shift is over at 2 p.m., and I need at least five minutes to talk over any changes or medications given during the nursing shift. Though I had six “free” hours of respite, my phone has served as the conduit for numerous text messages between the nurse and me related to pain issues with Rachel. 

In The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver, authors Donna Thomson and Zachary White write, “Caregiving is a response to a call to accept loved ones as they are: cognitively, physiologically and relationally. Rather than ignoring these realities, caregivers must develop the capacity to simultaneously mourn what cannot be changed, recognize what can be changed, and accept their situation so that care and comfort can be provided.”

However caregiving becomes a part of your life, be it with a parent, a sibling, a child or a friend, there is a depth and a complexity to caregiving that escapes easy words. The transformation into being the caregiver is difficult to define, and it is influenced by our culture, faith and life experiences. How we see this role varies from individual to individual, but collectively, many of us are impacted and forever changed by caregiving. For those of us as caregivers, it is often a role we did not choose, and, though it may bring purpose and joy, it can also threaten to disconnect us from the familiar, creating loneliness, bitterness and other unexpected feelings. 

Ever-present needs
I am the mom of my four daughters, and I am also the primary caregiver to my youngest two daughters. Rachel and Janneke are medically fragile with complex care issues; they are completely dependent on me for their wellbeing. Though I work with a great husband, and a number of nurses and respite workers provided by our provincial government, Rachel and Janneke’s health and quality of life ultimately falls on my shoulders. In the first five years of caregiving – following Rachel’s birth in 2006 and Janneke’s in 2009 – Ralph and I ran on adrenaline, determined to find ways to normalize their constant need. Yet as we started into year six, we began to lose steam and sink into the waves of burnout and exhaustion. We asked ourselves, “How does this end?” Equally afraid of losing our children early to death and afraid of our children outliving us, we still feel overwhelmed by the ever-present need and demand as caregivers.

Recently, I had the opportunity to read The Unexpected Journey of Caring, as I have appreciated the wisdom of my friend Donna Thomson, and I subsequently interviewed both Donna Thomson and Zachary White. Coming from personal experiences of caregiving, Zachary with his mother and Donna with her son, they wanted to create meaning of this otherwise ambiguous, forever-shifting, all-encompassing identity of caregiving. Donna and Zachary were careful to not allow The Unexpected Journey of Caring become a prescribed how-to or self-help textbook: “The fact that there is so much ambiguity about the processes and trajectory of caregiving means caregivers themselves must create, from scratch, their own beginnings, middles and ends for others to recognize.” Zachary shared with me that their intention was to “make some sense of experiences in the shadows.” Of their intentions in doing so, there were five points (of many other good ones) that resonated with me.

More than a role
Caregiving isn’t something you do; it’s someone you become – it’s who you are. Donna and Zachary write, “Caregiving isn’t a role you step into as much as a role that steps into you. The caregiver role is relentless. It is with you at night, long into the darkness, arises with you early in the morning, and stays with you throughout the day. It respects no boundaries. It doesn’t account for schedules, nor does it have any concern for sleep or holidays.”

Unanticipated 
Caregiving is the burden that sustains us. The weight of responsibility must be acknowledged. Caregiving allows us purpose for living and meaning, but it does hem us into the role, however loose or tight the threads are. We anticipate different kinds of relationships throughout our life; we don’t typically anticipate a relationship with a loved one as a primary caregiver. 

Reality check
Caregiving allows us and challenges us to find beauty through diminished possibilities. In a culture that sells “Everything is Possible!” and “You Can Do It!” on t-shirts and barn board, caregiving offers a reality check. This is at the heart of the unexpected darker emotions that surface in caregiving. In addition, finding resilience or practicing self-care is better understood in relationship with others – not on our own strength.

Coming alongside
Caregiving is not sustained by clichés or quick fixes. Both Zachary and Donna shared the pain that clichés and pseudo faith-based texts cause, even when the intentions are good. As Zachary told me in our interview, “They are the shrapnel that scar you. The effect is isolating.” Caregiving necessitates a place for emotions – not the fixing of emotions. We need a sacred space to acknowledge the unexpected and vulnerable feelings that come with caregiving such as anger, profanity, jealousy, envy, sorrow. Coming alongside without trying to fix or name the experience creates communion and empathy.

Beloved
Donna and Zachary include in their book helpful offerings such as care-mapping (visual representations of the family or individual’s care experience) and ideas on how to ask for help. The chapters move from acknowledging the wrestling of acceptance to re-orientating and figuring out a new way to live and be a caregiver. Though I personally identified with their words, The Unexpected Journey of Caring could also help those in professional healthcare roles, as well as family or friends of caregivers. Caregiving is a reality that will affect more and more of us in the near future, particularly as we see our aging population grow to 1 in 4 people by 2030 (Stats Canada). 

The role of caregiver supersedes everything and forever impacts us. According to Donna and Zachary, “Caregiving doesn’t end even though the responsibilities that once characterized that role may cease. Caregiving isn’t just a set of actions you perform, it’s something you become. You don’t ‘recover’ from being a caregiver because the experience has become such a vital part of who you are that to let go of that part of yourself would also mean relinquishing everything you learned in that process of caring for someone you love.” And in loving, we know we are also loved by our Creator who is alongside us in the darkest valleys, reminding us we are not alone. 

  • The Pot family story is about faith and disability as experienced through a life of caregiving for daughters Rachel and Janneke.

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