Hi everyone! I’m Erin, and I’m one half of Caregiver Collaborative.
When we first started outlining how we would launch this business and this blog, I was going to write two blog posts – one about me and one about my caregiving story. But as I sat down to write these posts, I realized that it’s nearly impossible for me to separate my experience as a caregiver from who I am as an individual. So instead, you’re all getting a two-for-one post!
I was just three years old when my dad was diagnosed with Multiple Sclerosis (MS). MS is a disease of the central nervous system that interrupts the flow of information in the brain and between the brain and body. It’s an often unpredictable disease that impacts the brain, spinal cord, and optic nerves – and these things control almost everything we do. MS impacts each person differently, but often causes numbness, tingling, mood changes, pain, fatigue, blindness, and paralysis. For my dad, it largely causes blurry vision, numbness and tingling in his arms and legs, short-term memory challenges, and low tolerance for heat.
In addition to providing various forms of care for my dad for most of the last 30 years, including everything from administering medication, taking on additional household tasks, completing medical forms, attending appointments with him, and more, I I also cared for my mom for most of my teenage years. She struggled with her physical and mental health for several years, experiencing confusing symptoms that baffled doctors. After months of tests and attempts to treat her symptoms, doctors believe she suffered from Chronic Inflammatory Demyelinating Neuropathy. She spent months in and out of the hospital, during which time I provided care for both my mom and my dad before her passing in 2011, just a few weeks before I graduated from college.
I began dreaming of this website back in 2008. At the time, I was a sophomore in college. My dad had experienced a relapse of MS. My mom was in the hospital after contracting an infection as the result of one of her treatments. Though I had a really supportive family and some truly amazing friends, including many I had met through the MS Society who could relate to my situation, I still found myself feeling alone a lot of the time.
I remember sitting in a waiting room of the hospital late one evening. My dad had gone home to get some rest and I was waiting to hear some doctor talk down to me about my mom’s care, assuming that I was too young to understand or know what was going on, too naive to help or make decisions. I had been trying to sort through the assignments I had due for class that week and the appointments and medications I was trying to help my parents manage. I kept thinking, “there has got to be something out there that can make this all easier. Someone else who has gone through this who can help me navigate it all”. I opened up my laptop and searched “young caregivers” on Google. The results that popped up included exactly one study about the effects of young caregiving on adolescents and a bunch of resources for adults who were providing care for spouses or children. I found nothing that helped me, a 20 year old college student, figure out how to navigate this lonely journey that I was on and had been on since the age of three.
After many late nights and cups of bad coffee in hospital and doctor’s office waiting rooms, one funeral, many hours of mental health care, and with some final nudges from my very patient husband and my amazing business partner Laura, this business was born. I am so grateful for the opportunity to share my story, to work with such a great friend, and to provide space for caregivers to learn, grow, and connect with each other. I also look forward to sharing more of my story along the way.
