Welcome!
Welcome to the Medically Complex Caregiver, a unique blog and community created to connect caregivers of medically complex individuals with resources, lessons learned, guides, and community in one location. This site is made by and for real, medically complex caregivers.
Limited guidance is available in one place to help caregivers navigate a complicated and overwhelming journey. Medical professionals often do not understand the options available to families, and limited education exists elsewhere. Programs often are not well publicized, and employees have limited funding to perform outreach/education. This issue exists regardless of where you live in the United States, urban or rural, affluent or not.
Although the Medically Complex Caregiver is in the Washington DC Metro area, in Northern Virginia, many of the resources and recommendations provided can apply elsewhere. We hope to expand our scope in the future.
Who Created the Site?
The Medically Complex Caregiver was developed by me, Tori, a parent of a medically complex child. The content of the site is developed through personal experience, research, and real advice from other caregivers.
How Did We Get Here?
After my medically complex child was born, I discovered how disjointed and complex resources, support, and services were. Despite possessing a master's degree, familiarity with government and medical issues, advocating experience, and unyielding resilience, I often found myself unsuccessful in finding helpful resources, guidance, or opportunities available for my family. Overwhelm, frustration, hopelessness, and exhaustion were commonplace.
My local state services (Infant and Toddler Connections) no longer had a mom support group (long story) but held a monthly father support group for dads with children who are medically complex and have significant needs. When attending, my husband learned that some of the wives had developed their own informal group.
It was not long before I joined this group at a local restaurant, sitting across from many other women who had been in my shoes and were navigating through this wild journey. These women were smart, educated, strong, resilient, exhausted, funny, kind, and fierce advocates, regardless of whether they wanted to be. There was no room for image, only transparency.
Despite their experiences, education, career (past or present), these moms had many fights trying to determine services, obtain support, discover solutions, and advocate for their loved ones. They knew if this was so difficult for smart, educated people who work in the federal/medical/complex fields in a highly affluent area, that the system was not designed to be clear or easy for anyone. Sadly, everything required research and significant advocacy even if it seemed "easy". Their dinners focused on troubleshooting issues and having a good laugh- business with levity!
With humor, wit, and margaritas, these women welcomed me to "Exceptional Moms".
The local, informal mom support group provided me with the only meaningful guidance and direction on how to support caring for a medically complex, disabled person. They introduced me to services to apply, important wait lists to sign-up for, and ways to advocate for my family. These moms provided feedback and recommendations for doctors, specialized professionals, and tools/products that helped their families. There is more to learn from our community and new services, products, and treatments in development. This is an ongoing journey.
What is the Goal?
So why does the Medically Complex Caregiver exist? This type of caretaking is unique, requiring specialized guidance, solutions, and support. Few resources compile truly meaningful advice or a roadmap. Although everyone's experience is unique, the feelings of overwhelm, isolation, and frustration are not.
My goal is to memorialize the lessons and recommendations I have received over the years. I hope to create checklists, guidance documents, resource information and links, and recommendations of what caregivers should consider (taxes, estate planning, travel, products, and more). This site is a work in progress.
I want to share our lessons learned so other caregivers have an easier time understanding and accessing resources and learn from others' experiences. This life is hard, I want to make it less difficult. I want to create a roadmap and community.
You are not alone, and you are doing an excellent job! Let us help lift some of your load! I am excited to welcome you to our community!
Tell me, why are you here and what do you want to learn about?
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Tori, this is amazing and SO important. As a former hospital social worker, I can speak to how much providers (and even resource specialists!) just don’t know about resources for rare conditions, navigating systems and piecing together caregiving networks. I appreciate you taking the time to document your process and knowledge - it will be invaluable to others, I am sure.