My Story – In 2012, I landed my first “real” job after graduating from college. I experienced not only the nervousness of entering into the workforce, but also the harrowing process of attaining a diagnosis for my mother, who was exhibiting symptoms of behavioral changes and memory loss. In 2013, my mother was diagnosed with Frontotemporal Dementia, the leading form of dementia among persons under 60 years of age. I was 27. As an only child, I left my job to care for my mother so my father could continue to work and receive health insurance. As I conducted research, engaged with healthcare providers, and attempted to navigate the overwhelming landscape of information and resources, I was struck by the lack of inclusion and diversity in the support for young caregivers. In 2016, I had the opportunity attend BlogHer, the world’s largest conference for women in digital media. Surprisingly, the conference included a breakout session on caregiving. As I listened to the panelists share their stories, I was enamored by these women and how their stories echoed my own. They each used digital storytelling to raise awareness about caregiving and their loved one’s illness. Listening to their experiences, I felt inspired and empowered to use my talents as a storyteller and love for my mother, to create Our Turn 2 Care, a platform for marginalized millennial caregivers. We aim to connect caregivers who are people of color, members of the LGBTQ community, and other marginalized groups with information, resources, and each other in a meaningful and culturally competent way. (To learn more, please visit OurTurn2Care.org and follow us on all social media platforms at OurTurn2Care.)
What I Wish I Knew Beforehand
· The expectation that when a parent or other loved one is in need of care, hiring someone to assist with this care is not a simple or affordable process.
· Being a caregiver is like receiving on-the-go training for an incredibly high-risk job where the consequences are truly life and death.
· The role reverse between parent and adult child can make seemingly simple tasks very challenging as identities change and power struggles ensue.
What I learned/am learning
During this journey as a caregiver, I have been surprised by my personal resolve. I discovered that I am capable of assisting with activities of daily living, wound care, and patient advocacy. I have discovered and strength and resolve that I never knew I had, reacting quickly and calmly in emergency situations.
Unfortunately, I’ve also discovered that healthcare in America is unaffordable for most Americans, even those who are insured. Limited assistance and support is available but the systems are difficult to navigate and resources are scarce.
Most importantly, this experience has forced me to mature at rapid pace. I certainly felt some growing pains and caregiving forced me to reassess my priorities. Although this process has been challenging at times, I am grateful that I gained an increased appreciation for the brevity and preciousness of life.
What are some resources that really helped me or been helping me?
· The 3 F’s: faith, family, and friends have each played an integral role in my personal well-being. My faith provides a sense of purpose, meaning, and calm in the face of such great uncertainty. My family and friends encourage me and support me.
· Therapy has been essential in equipping me with the coping skills I need to manage the incredible stress that comes with caregiving.
· Online support groups have allowed me to connect to other caregivers. Communicating with others who can relate to my experiences reminds me that I am not alone on this journey.
What I Worry/Worried about
I try not to worry, as this practice stresses me out and doesn’t change my circumstances. But I do wonder. I wonder about the future. I wonder about my family’s quality of life. What will my mother’s final days look like? Will we be able to afford palliative and hospice care and a proper burial? I also wonder about my own future. Will I have a career and a family of my own? Will I develop the same disease my mother has and, if so, will I be able to afford treatment? Since caregiving makes dating difficult, who will care for me if I become ill as I age?
Exercise and eating healthfully have helped me to better manage my health, making me more capable of helping my family. At the beginning of my role as a caregiver, I acknowledged that I was battling with my own obesity related health challenges. I understood that I was in a position to change my health for the better and that I would need to make those changes in order to meet my mother’s needs. I needed to be strong enough to transfer her from bed to wheelchair. I needed to get rid of migraines triggered by high blood sugar levels. I needed to have enough energy stay awake and alert to monitor my mother’s activity and vitals.