Visions Journal

Family Caregivers of BC is ready to help

Janet McLean, MBA

Reprinted from the "Supporting Adult Children" issue of Visions Journal, 2019, 15 (1), pp. 34-36

A client at Family Caregivers of BC (FCBC)—let's call her Julia*—once shared with me a reflection on her role as "caregiver" for her son. I have put the term in quotation marks because—as you will see from her statement below—the word is charged with multiple subtle and often problematic meanings.

"You are not my caregiver," my son said to me one evening.

"I am not your caregiver," I said in return, hoping to relay my understanding. However, packed within his simple statement and my response were, for me, many uncertainties. I am still seeking to understand. We have been in this dance for many years, as I have watched and supported him through some serious challenges with his mental health. Am I caregiver? What does it mean to care? To give care?

I care for him. Through my relationship with him, I catch myself wanting to help and extending myself to help when perhaps it would be better to hold back. When he was younger, I needed to help a lot more. I catch myself worrying about him—fearing for his health. And yet my concern for him is causing me distress. If I am not a caregiver, what am I?

Over a period of caregiving (okay, let's just use this term for now), pieces of myself seem to have slipped away as energies and focus extend outward. Not losing myself as I am caring for others, including my son, who is living with a diagnosis of schizophrenia, is an interesting challenge. More and more I recognize the need to nourish and care for my own needs. I am still seeking, and I need help to explore just how I might do this.

Julia's reflection is not unusual. Over the 30 years that FCBC has been supporting family and friend caregivers of aging, ailing or disabled adults, we have seen over and over again how vital a role caregivers play in our society. As they care for others, caregivers need care and support themselves. Providing this support starts with what we call "caregiver self-identification."

Caregiver self-identification

Caregivers are people who have social, personal and intimate relationships (as friends, family members or partners) with individuals who have disabling physical health conditions, are frail due to aging or disability or have mental health challenges (or all of these). People who provide care may use different labels—"caregiver," "care partner," "care provider"—or they may prefer to not label their care work at all.

No matter what they call themselves, caregivers take on a role that is separate and distinct from their primary relationship with the person for whom they are providing care. It is an important distinction because the role of caregiver is emotionally, psychologically and physically taxing. If someone doesn't recognize they are caregiving, they are likely to miss out on available supports, which can in turn lead to burnout and their inability to continue caregiving. A recent Ontario report found that only 42% of caregivers self-identified as caregivers, 35% didn't understand they were caregivers until the role was explained to them and 24% (even after the role was defined) still didn't see themselves as caregivers.¹

The impact of the caregiving role on the caregiver

While many caregivers feel deeply satisfied with the care and support they provide to others,² they struggle to maintain their own well-being in the process.³ And the evidence is very clear: caregivers who identify themselves as caregivers and reach out for support early in their caregiving journey are much more likely to sustain their caregiving role over an extended period of time.⁴

We also know that family and friend caregivers supporting an individual with a mental health challenge are among the most stressed in the province. In 2018-19, roughly 6% of calls to our toll-free Caregiver Support Line were from caregivers caring for an adult with a mental illness. Very often, these caregivers have been caring for extended periods of time, have experienced periods of significant turbulence in their relationships and approach to caring and have become quite isolated in their roles. The mental and physical health of the caregiver is also on the line.

For example, Julia, the caregiver who shared her reflections at the beginning of this article, has been caring for her adult son since he was in his early 20s. He is now in his late 30s. Over the years, he has been in and out of direct care in the community, overseen by health care practitioners. He has been in facility-based care twice, the last period six years ago. Although he is somewhat stable, he still goes through periods where he can’t manage or maintain a part-time job, which leads to financial distress. Julia is approaching 60 and has her own health issues. She worries about who is going to look after her son when she is no longer able to, and she is also concerned about her own financial situation in retirement. When Julia called our Caregiver Support Line, she was juggling another crisis in her son's life. She had no current contacts in the health authority and didn't know who to talk to about her situation.

In conversation with caregivers like Julia on our Caregiver Support Line, we often ask, "How are you doing?" On many occasions, this question is met by the caregiver's silence. Alternatively, caregivers may say they are "fine"—or, frequently, "I am fine, I am fine, I am fine," until they fall into silence or break down over the phone.

The caregiver tends to focus on the issues of the care recipient, often singling out a recent episode that reflects a long history of relationship dynamics. When we shift the focus of the conversation to the caregiver's needs, it becomes clear that the caregiver is not fine. In caring for the recipient, caregivers often neglect to care for themselves, risking their own well-being.

Ultimately, many caregivers exceed the limit of their capacity to care, joining a growing number of caregivers who are experiencing distress and burnout. In so many of the telephone calls we receive, people have called in a moment of desperation. They have been coping up until that point, but then there is a particular episode or incident, the pressure builds, and suddenly they feel overwhelmed and exhausted and don't know where to turn.