By Laura Will
Reprinted with permission from www.Knowrare.com
In the weeks after our infant son was diagnosed with a rare brain malformation, I had an identity crisis. All of a sudden, the title of Mom had an unbidden qualifier – a ‘rare’ mom, a ‘special needs’ mom, a ‘courageous’ mom. It was a lifelong placement to a uniquely demanding job, for which I had not meant to apply. I felt lonely, unprepared, and terrified. I will be managing the care of our medically-complex son for as long as he is alive. No longer just-a-mom, I enlisted as a family caregiver.
Family caregivers are extraordinary. With no formal training, we take on leadership roles, orchestrating teams of specialists, medication schedules, care decisions, appointments, and advocacy. The internal shift that occurs as we assume each of these responsibilities is non-linear, and can be emotional and exhausting; and, perhaps, exhilarating at times, when we surprise ourselves with our own strength, patience, or unforeseen skills.
Many of us are familiar with the states of grief: denial, anger, bargaining, depression, and acceptance. Naming these, and understanding that each is a natural and shared experience among those who are grieving was helpful for me in processing the loss of the life I had expected for our family. Like the states of grief, researchers have studied and qualified the states of a family caregiver’s identity: denial, hyper-activity, drowning, and balance (Barello, 2019). In learning about these four states of caregiving identity, it is clear that each plays into my experience as I work to recalibrate our family life and my identity. The description of these states offers an interesting lens to see, understand and honor our own behaviors and sense of self.
The Four States of the Caregiver’s Identity
This state usually occurs at the beginning of a caregiver’s journey, or after a major change. My husband would tell you that I hung out in the land of caregiver denial for a while. I was not in denial about our son’s diagnosis – I was processing that; however, I was not yet able to take on the additional caregiving responsibilities his diagnosis demanded. Honestly, I would have hired someone to love my son for me, as I was too scared to engage with it all. I wanted to run away. Denial can be detrimental, particularly because one of the primary reasons why people do not seek support from which they could benefit is that they do not identify as qualifying that support (Berzonsky, 2011). That being said, denial can also play a functional role as we can only process so much at any given moment.
This state is recognizable as a flurry of energy and activity, an anxious hyper-alert state, and a busy mind keeping you up at night. In this state, a caregiver is taking responsibility for care needs, but is carrying them out in an overactive mode. Staying busy made me feel like I was in control; and this illusion sustained me temporarily. I read every available medical journal article on my son’s condition. I hounded the local pediatric rehabilitation center for appointments that would not interfere with my son’s naps. At 2a.m., I found myself trying to problem solve how we would adapt our house for a disabled teenager. And by 3 a.m., I was tearfully imagining what I might say at his funeral. This state can be adaptive, when needing to quickly adjust to new circumstances; or it can be harmful for our mind and body, if we linger in it too long.
or as I have renamed it, ‘Treading Water’.
This state arises when a caregiver starts to slow down and hits their stride. Thanks to the passage of time, some cognitive reframing, and hopefully outside support, the caregiver is able to prioritize care tasks and accomplish them effectively and efficiently. I can picture my ‘treading water’ state in my phone calendar, chock-full of appointments and reminders. I had one goal: maximize our son’s health and potential. Sounds pretty great, right? I was holding my son up, giving him every opportunity. Nevertheless, I was sinking (okay, perhaps drowning a bit) in the caregiver’s role and responsibilities. My self-care, my personal relationships, my needs were nowhere to be found on my calendar. Treading water is sometimes all we can do; and on those days, that is enough.
or as I have renamed it, ‘Juggling’.
Researchers labeled this final state as ‘balance,’ but that term feels dishonest and downright unattainable. It is impossible to go through an entire day in a perfect balance. So I took the liberty of also renaming this state’ The idea of ‘juggling it all’ feels like an accurate description of when you are able to hold time and space in all the different aspects of your life – as a caregiver, and as a friend, and as a partner, and as an individual.
In review, let us bring the juggling metaphor into each of the caregiving identity states. In this final state, you are juggling balls that represent caregiving responsibilities, parental duties, important relationships, household chores, self-care, and sleep along with anything else you might think of as important such as a spiritual practice, a loved hobby, or a profession — that is a lot! In the state of treading water, you have dropped, or intentionally put down, self-care and other ‘personal balls.’ You are juggling caregiving needs, while keeping a roof over your head and food on the table. The hyperactivity state might look like juggling at a hectic and unsustainable pace. And denial would be, either intentionally or not, letting almost all the balls drop to the ground for a time.
At the end of most days now, I can honestly say I juggled enough. And there are moments when fear still paralyzes me. And, after a recent hospital trip due to an uptick in our son’s seizure activity, I found myself buzzing again at 2 a.m. I continue to be in flux, putting down and picking up each of the things I want to juggle, or need to juggle. I intermittently see myself succeeding as a family caregiver, and rare mom, and just-a-mom, and wife, and sister, and friend, and nurse, and now, apparently, writer. With time and practice, my sense of self has stabilized, and started to expand in beautiful and unexpected ways.
Reflect on what, if anything, resonates with you in the description of the caregiving states and the juggling act. Perhaps there is a metaphorical ball representing a responsibility that you would like to put down for a time or toss to someone else. Perhaps there is an old hobby or habit that you would like to pick back up. This juggle act is nonstop and not easy. There is nothing wrong or shameful about any of these caregiving states. Each has its own wisdom, and each is temporary. We are doing our best, and that is enough.
ABOUT RARE RESILIENCY:
Rare Resiliency is a monthly column written and/or curated by Laura Will. This column has been reprinted with permission from Know Rare explores the concepts and skills that play a protective role against chronic and acute stress. Each article challenges and encourages the reader to continue to develop that inner steadying strength as they face illness and uncertainty, sorrow and joy. KnowRare connects people living with a rare disease to clinical trials. KnowRare was founded by Nina Wachsman and Jake Wachsman.
Barello, S., Castiglioni, C., Bonanomi, A. et al. The Caregiving Health Engagement Scale (CHE-s): development and initial validation of a new questionnaire for measuring family caregiver engagement in healthcare. BMC Public Health 19, 1562 (2019). https://doi.org/10.1186/s12889-019-7743-8
Berzonsky MD, Cieciuch J, Duriez B, Soenens B. The how and what of identity formation: associations between identity styles and value orientations. Pers Individ Diff. 2011;50:295-299.