Son, Grandson, Caregiver: The Importance of the Caregiver Identity for Young Caregivers
This year marks my one-year anniversary since graduating from college. My ultimate goal is to pursue a career in research, and like many other 22-year-olds, I am currently exploring my professional "next steps." Over the past year, I have focused on graduate school applications and sought opportunities to enhance my research experience. While my CV showcases my qualities of being "hard-working" and "reliable," I have been contemplating how to incorporate my caregiving experience of the last 12 years. Should it have its own section? Should it be considered a relevant experience? Should I include honors and achievements related to caregiving? Additionally, how should I approach the start and end date, which spans from 2011 to the present? Moreover, it's unlikely that people would believe someone could start providing care at the age of eleven. However, caregiving has been as demanding, if not more so, than any formal job I've had. Yet, I have never viewed it as a job. Growing up, I was raised with the understanding that what many refer to as "caregiving" is simply an extension of my responsibilities to the ones I love. It's about my grandfather, who holds a special place in my heart, and it's about my mother, whom I am currently sitting beside. It's about their lives. I don't consider myself a caregiver; I'm just doing what needs to be done.
As the size of the older adult population increases, the importance of caregiving is critical to the livelihood of this aging generation. As much as our healthcare system relies on family caregivers to avoid completely overwhelming the few trained providers available in the country, there are fewer and fewer family members available to manage this caregiving role. With increasing financial burden and social hardships, birth rates have been rapidly declining for the last 15 years. By 2030, the CDC estimates there will be only four potential family caregivers per older adult, giving families less flexibility and options for their loved one's long term care plan. For example, if an older adult receives care from their child, what happens when that caregiver needs to be taken care of? Who is next to step up to the plate?
All of this is not to scare anyone from taking on a caregiving role. I took great pride in caring for my grandfather with Parkinson’s related dementia and now my mother with Multiple Sclerosis. However, the “family caregiver” title was never one I thought applied to me at my age. Only this past year, the White House recognized that family caregivers consist of people of all ages. When my grandfather was alive, my grandmother was his primary caregiver in the mornings getting him ready for the day, in the evenings after coming home from her full-time job, and at night prepping for his bedtime routine. But those afternoons after school, when everyone in the house was working or unavailable, I alone supported his activities of daily living (ADLs) and instrumental activities of daily living (IADLs) from elementary school to my senior year of high school. When my grandfather fell from my grandmother’s grip and could not be lifted off the ground, either me or my father were the ones that came in the middle of the night to help him back up. From medication management to bathroom trips, preparing meals to outside transportation, I was integral to his care. Yet, no medical provider of his, no home aid, not even friends or family members ever could believe that from eleven years old, I could be so heavily involved in my grandfather’s care.
Montgomery and Kosloski (2012) propose the caregiver identity theory, where the caregiving role is 1) systematically acquired, 2) constantly changing over time, and 3) prompts changes and developments in one’s own identity. One of these identity changes involves reconciling the discrepancy in the previously established relational dynamics between oneself and the person you are caring for. A son whose relationship with his mother was primed by her providing care for him most of his life will experience a dramatic shift in his role and identity as caregiving responsibilities intensify. One can only imagine what that shift might look like for a young caregiver so early on in life. When interviewing teen family caregivers of loved ones with dementia, one study found that teens experienced particular difficulty with regard to striking a balance between being a child while simultaneously meeting the assumed expectations of a family caregiver (Nichohs et al., 2013). A multitude of research and caregiver testimonials have explored the psychosocial outcomes commonly discussed with relation to caregiving, including social isolation, burnout, depression, and anxiety (Cohen et al., 2012; Greene et al., 2017; Koumoutzis et al. 2021). Thus, it is critical for healthcare providers and policymakers to both recognize and prioritize the family caregivers who learn long division by day and feed and bathe a parent by night.
With the work that leaders in caregiver research, including ENRICH, are exploring, experts are honing in on specific ways to try to ameliorate the known burden and social isolation that comes with caregiving. Based on our work at the ENRICH Lab, caregivers find caregiver-specific communities and support networks most beneficial for acquiring resources and building connections with other caregivers. This elevates the importance of self-identifying as a family caregiver when tasked with the many physical and emotional demands of providing care to a loved one.
In my experience and that of many young caregivers, that caregiver identity is not something a child instantly gravitates towards. It’s not like being a caregiver is a typical adolescent experience. Who is among a child’s support network that really understands their at-home reality? Would they even know? And for healthcare providers, it is often the case where the child, who might be at the forefront of a loved one’s care, is neglected from care conversations, contributing to an overall disconnection and misguidance of the caregiving experience (Nichohs et al., 2013). How could anyone expect a younger caregiver to know where to look for resources, where to find community, and where to even start supporting them in their efforts in providing more encompassing care for their loved one when forces at play don’t acknowledge them as caregivers to begin with?
To the younger family caregiver who’s falling behind in school because of late nights taking care of a loved one, who’s missing after-school clubs because they need to prepare meals for the family, who's getting their driver's permit for the sole purpose of making transportation easier for your family, you are just as much of a family caregiver as any adult providing care for a loved one. And on behalf of the ENRICH Lab, we promise to continue learning from caregivers like you in order to build the resources and support that represent your caregiving experience.
Below are some helpful tips and advice that helped me navigate my family caregiving role in my child/teen years as well as resources specifically catered to young caregivers:
Tips/Advice:
Talk to a teacher or counselor about circumstances at home.
Many times it can be hard navigating your academics while also taking care of a loved one at home. Talking with a teacher or counselor about your home obligations and how they might be interfering with your classes can help them better accommodate to your individual needs; whether it be flexible deadlines on projects or extra help during the school day instead of after school.
Create a family schedule/calendar.
When you have a loved one at home who requires nearly 24/7 supervision, it can be challenging to coordinate when other family members will be home in case you need to leave the house for any reason. Setting up a family calendar can help plan in advance who will be out of the house at any particular time. Applications like Lotsa Helping Hands and Ianacare are specifically designed with family caregiving in mind, but a simple Google Calendar works great too!
Keep your friends in the loop!
This one was and still is a big one for me! It was hard at first to get past the hurdle of explaining to friends why I couldn’t be around for something or why I needed to be home early on any given day. By explaining the situation at home to those you are closest with, they will better understand ways they could support you and your needs as a friend. We all need support, don’t be afraid to lean on those in your network. Your story helps destigmatize and raise awareness to the realities of so many others like us.
Additional Resources:
American Association of Caregiving Youth - https://aacy.org/resources/caregiving-youth/
Alzheimer’s Assoications Hudson Valley Caregiver Support Groups - https://www.alz.org/hudsonvalley/helping_you/caregiver_support_groups
What It's Like To Take Care Of Multiple Family Members At Age 15 - https://www.youtube.com/watch?v=puwI1tROvkQ