How My Life Changed When I Became My Mom's Full Time Caregiver at 27
Humans: most of us picture life one way, but it usually turns out another. We envision our futures with the assumptions of decent health, normal aging, and brochure-worthy retirements. But whatever expectations I had for my twilight years have been drastically altered by my experiences over the last few years.
When Life Takes A Detour
“What do you want to do when you grow up?” they asked. Help people. That has been my consistent answer throughout the course of my life. I spent my primary school days assisting special needs students and summers teaching theatrics at summer camp. In college, I took the steps to become a professional helper of people, majoring in Sociology with a Social Services emphasis. My post-graduation plans included earning a Master of Social Work and helping bullied kids.
But those plans never came to fruition. In 2012, my mother began to exhibit symptoms of dementia. Although I still dreamed of graduate school and adolescent counseling, my reality began to look quite different.
At the height of the recession, full-time employment was hard to come by but I finally landed a position in healthcare that would allow me to help people. About seven months after starting, my life took a detour: my mother was diagnosed with Frontotemporal Dementia, progressive brain impairment that affects decision-making, behavioral control, emotion, and language. I left my job to be her full-time caregiver. I was 27 and my collegiate dreams were still lofty. But by my third year of caregiving, I realized that my life would never be the same.
Gaps in Care
It hurts me deeply to watch my mom suffer. It hurts even more to feel so ill equipped to help her. The black hole of information about dementia is overwhelming, the diagnosis is devastating, and available assistance is bank-breakingly expensive. The outlook: blurry at best.
I did my best to seek out the best doctors and treatments to make this experience more bearable for my family, but I’ve found the convoluted and bureaucratic process incredibly frustrating. Adding to the frustration, I discovered a shortage of cultural competence among healthcare professionals.
For example, one of my mother’s specialists recommended the use of a mobile app to help improve her cognition; this doctor’s order was based on assumptions about her technological aptitude and access to a smartphone. While it seems like everybody these days has a smartphone, that just isn’t true, especially for adults aged 65 and older, of which only 42% own smartphones.
Some patients and caregivers may also experience implicit bias from their physicians. According to a 2013 article originally published in the Journal of Internal Medicine, “Research suggests that implicit bias may contribute to health care disparities by shaping physician behavior and producing differences in medical treatment along the lines of race, ethnicity, gender or other characteristics.” Implicit bias can show up everywhere from healthcare policy to treatment, and may have a direct impact on the type and quality of assistance patients and caregivers receive.
After experiencing similar challenges with my mother’s care, I began thinking about other families whose academic and socioeconomic circumstances are far more dire. Maybe the same physician recommends that a patient eat more healthily and get outside for a walk. Sounds great. For those who already live an active lifestyle and have access to healthy food options. But what if the patient lives in a community where sedentary lifestyles reign supreme and fast food joints are more easily accessed than grocery stores?
Challenges of Millennial Caregivers
A family caregiver (more commonly referred to as simply a “caregiver”) is defined by The Family Caregiver Alliance as “an unpaid individual (for example, a spouse, partner, family member, friend, or neighbor) involved in assisting others with activities of daily living and/or medical tasks.”
According to a 2015 study by AARP, “nearly a quarter of America’s caregivers are millennials between the ages of 18 and 34...” Yet, much of the available literature and many of the existing support groups for caregivers are geared toward older audiences, over 65 years of age. The creators of caregiving tools use terms like Medicare, Advanced Directives, and Living Wills. Young adults may not be familiar with these terms, and few resources break down end-of-life terminology into simple definitions they can understand.
New caregivers are often bombarded with information from researchers that changes too often to keep up with. In my early caregiving days, I wanted to be fully informed about all of the latest clinical trials and newest advancements in dementia treatments. I spent many sleepless nights watching evidence of the sun rise beyond my venetian blinds after hours of research, and had nothing to show for the screen time but an overflowing Favorites folder and a looming migraine. Finding essential information that would make the greatest impact on my role as a caregiver was a tough task.
Caregiving can be an incredibly lonely journey for all caregivers, but millennial caregivers are particularly isolated as most of their peers cannot relate to their experience. While many millennials are working for trendy tech startups and planning trips to major music festivals, millennial caregivers spend their days doling out medication and averting medical crises.
According to the 2010 book, Long-Term Management of Dementia, edited by Douglas W. Scharre of The Ohio State University, “The ‘wear-and-tear’ hypothesis suggests that, over time, caregivers’ functioning will steadily decline as a result of prolonged stress.” Millennial caregivers often find it difficult to relate to their peers due to their vastly different life experiences.
The Future Is Nigh
Hispanics and Blacks are disproportionately likely to become caregivers for a family member. When I considered the potential financial, physical, and emotional challenges marginalized young adult caregivers might encounter, I wanted to use my voice to draw attention to the problem.
At #BlogHer 2016, I listened to a panel of women caregivers and content creators, two of whom happened to be women of color. I was inspired to create Our Turn 2 Care (OT2C), a platform that caters to millennial family caregivers with special features for caregivers of color and members of the LGBTQ community.
OT2C offers educational materials including caregiving checklists and insurance information to help caregivers get organized early in the caregiving journey. While we are currently focused on dementia-related caregiving, we hope to expand our reach to those caring for people with other conditions. As we continue to grow, the goal is to provide interactive resources such as webinars featuring diverse caregiving and dementia experts, in-person events to connect caregivers in a meaningful, productive way, and a mobile app for access to all of the above.
Why the name "Our Turn 2 Care?” My father explained that during my mother’s time of need, it was my turn to care for her the way she’s cared for me my entire life. Some may view this task as unfair and burdensome, but I view it as an honor to help preserve my mother’s beautiful legacy and help her live out sunset years with as much dignity and joy as possible.
I Have Questions
Since caring for my mother, I’ve had to confront some scary questions head-on. It is a relatively unpleasant conversation I have to have with myself periodically, but the inner dialogue is a very necessary one. In the age of living in the moment, planning for the far-off future can seem a bit countercultural. No one likes to think about dying. It’s depressing and scary for many people. But I encourage you to take some time out to seriously ask yourself and answer the following questions:
What if the unexpected occurs?
What will I do?
Will I be prepared?
Who will be my tribe?
The last one is especially important. My experience tells me that it takes a tribe to make sure that those we love (including ourselves) are able to live and die with peace and dignity.