Ex-Spectator: Overthinking Caregiver Identity

Part 1: Waiting Room

If you’ve spent any amount of time in health research, you know how impactful caregivers are to the patient experience. From our perch, we’ve come to see caregivers as advocates, note takers, question askers, treatment managers, chauffeurs, parking ninjas and overall MVPs of ‘all things needing doing’. We understand they are typically family members called to duty and expected to do their job without a playbook. When I found myself on the ground floor for a change, called to duty with little warning and equipped only with a desire to support my mom, I got to thinking about what it means to be a caregiver, and the complexities of becoming one.

Mom never would have been able to navigate the traffic around Mass General on her own. As we took the last two seats together in the waiting room, I chuckled at the poster recruiting for a clinical trial. Realizing I’d entered the doctor-patient-caregiver trifecta of market research respondents. Having been in the biz a minute, I know a lot about caregivers, but much less about being one. She’d asked me to take her to this appointment because as her son and a life science researcher, she thought I was double qualified. I follow her logic, but like applying for a job, one must understand what the job entails then decide whether one can do the job, which begs the question(s):

What is the job of a caregiver? What if I’m not up for it? What if what my mom needs something I can’t give? Do I really have a choice? Can I be a bad caregiver? For me, becoming a caregiver was easy, I was the victim of circumstance (I’m the best able), proximity (I live the closest), knowledge (I work in medicine and know a few things) and guilt (I’m her son, I’m supposed to). It is the being a caregiver I started to obsess about.

Part 2: Blueprint

The Caregiver role is complicated. One needs to be both empathetic (I’ve experienced that) and sympathetic (I’m sorry you’re experiencing that) as well as subjective (what’s good for you given your values and belief system) and objective (what’s good for you based on measurable data and clinical guidelines). If that wasn’t challenge enough, being thrust into the role of caregiver means taking on a new identity entirely. We navigate our world with other people, making sense of our surroundings through a mutual understanding for what things mean, and how to behave in different situations (Goffman fans stand up!) We ascribe meaning to actions (flipping the bird is naughty), cues (red light means stop) and status markers (a credentialed physician is qualified to talk to my mom about her health). This same mutual understanding of social cues also applies to how we label ourselves and each other. We take on many different roles throughout the day, resulting in our having lots of identities, such as husband, father, brother, son, researcher, caregiver, you get the idea. We use these identities to help each other get through life (I parent my child as his father, I work with my peers as a researcher). We internally organize these identities based on how often we enact them (salience) and those we enact more frequently tend to be the ones we associate ourselves with. Because caregiver is extremely low in my ‘identity hierarchy’, I don’t identify myself as one – but in this moment, that’s what I am before anything else! Theory says (actually, Burke and Reitzes, 1981; Stryker, 1980 say) when an identity is salient in a situation, people attempt to behave in ways consistent with what is expected of the identity. Okay, so how am I supposed to know what is expected of me in this ‘caregiver’ identity? How am I supposed to act? What am I supposed to do?

Part 3: Give me the Cure

While being ushered to an exam room, I reminded myself caregivers tend to be better equipped at processing and remembering information than patients are when confronted with difficult news. This indeed was a big deal, with the potential for devastating news, so I needed to listen and take notes. Be supportive. Don’t take over. Empower. Be positive. Self-doubt crept in:?

·??????? What is my role here? Loving son, life-science researcher?

·??????? What am I expected to do? How will I know if I’m doing a good job?

·??????? How do I balance what she needs versus what I need?

The doctor came through the door, smiled, and took a seat next to us. She sat eye level with mom, asking questions and carefully listening to her answers. She didn’t redirect the conversation when it veered off topic. She shared her perspective with a beautiful combination of frankness and grace. She gently placed her hand on my mom’s knee (well before I thought to) allowing her a gentle moment to move through her tears. I sat in silence, listening, taking notes, resisting the urge to draw attention away from my mom as she was processing difficult information. The doctor engaged with my mom directly for what seemed like an eternity before turning to me to ask if I’d noticed any changes in my mom’s health over the past few years.

Part 4: Full Disclosure

Identity control theory proposes people are motivated to act in ways that sustain their identities (Burke 1991, 1997; Burke and Reitzes 1991) and to this point, I hadn’t done anything to assert myself as anything but a spectator. When the doctor asked for my perspective, I focused on being objective, thinking doing so would ultimately help us get to a better place. Besides, the stakes were too high to worry about hurt feelings. You see, mom likes to tell me how healthy she is, even when it’s painfully clear to me she’s fooling herself. I’ve bit my tongue in the past, but this time I didn’t hold back with my observations about her becoming slower and slower over time, her poor balance, and her insistence she was okay when I felt she wasn’t. To my surprise, mom shook her head in agreement. From that moment, I felt like the three of us were a team, game-planning her next set of plays. I settled into my role of caregiver with a sense of optimism and purpose, helping move the conversation to a place where I don’t think it would have gone without my contribution.?

Reflecting on that afternoon, I now have a much greater appreciation for the complexity of everything the caregiver role entails. I’m glad I was able to be there for her, but I would be lying if I said it was something I wanted to do. Because it’s complicated. I had to process the annoyance of having my life complicated. What meetings were worth missing? How much did my presence matter? What would I be communicating by saying one day is better than another because I have work? What if what’s best for her wasn’t what’s best for me? I felt selfish, but that feeling was fleeting. I realized it was okay to feel annoyed by the whole thing while also feeling good about being able to be there for her. And I did feel good. It felt good to be asked. Besides, ‘you want to be involved’ she said; to which I said, ‘I don’t actually want to be in this situation, and neither do you’. Which is true, but the difference is I have a choice, and she doesn’t.