This article was featured in a recent edition of The Church Messenger, distributed by the American Carpatho-Russian Orthodox Diocese of North America.
Many of you are familiar with Joe Parimucha, a beloved member of our Orthodox Diocese. Joe, an architect by profession, was the architect in designing Holy Resurrection and Sts. Cyril and Methodius at Camp Nazareth. He had a deep love for the church, embracing its meaning, beauty, and symbolism, which inspired him to design numerous stunning churches and medical facilities. I had the distinct honor and privilege of being not only his life partner but also his design collaborator throughout our professional journey. Together, we engaged in a design practice specializing in healthcare projects, primarily hospitals, clinics, and senior living facilities. However, our lives took an aching turn when Joe was diagnosed with Alzheimer's Disease, and I became his caregiver, embarking on an uncertain and challenging journey together.
Caregiving was not a new experience for me; my grandmother had vascular dementia, my mother battled dementia caused by Parkinson's disease, and Joe's father also had Alzheimer's. Each of them spent time living with us, some for brief periods and others for extended visits. Joe's father, in particular, remained with us for several years following Joe’s mom’s passing due to cancer. But Joe was not just anyone; he was my beloved, my soulmate. Watching him deteriorate due to dementia was heart-wrenching.
Despite my extensive background in the healthcare industry, I struggled to adapt to my newfound role as a caregiver. Initially, it was simply memory issues—Joe would forget appointments, tasks, people, places, and even how to draw. He became disoriented and restless, leaving me feeling helpless. As the disease progressed, so did his symptoms. In his frustration to convey his basic needs, he would sometimes throw objects, which posed challenges for our neighbors, friends, and family. Joe lost his sense of time and day, exacerbating the caregiving challenges. Meanwhile, I was juggling the responsibilities of our design office without my partner, and even simple tasks like preparing Joe for church would consume over two hours of frustration. Eventually, I became physically exhausted and only recognized the need for change after suffering a heart attack.
My cardiologist urged me to find a care facility for Joe, but I couldn't bring myself to take that step. Instead, I embarked on a journey to understand dementia and explore what we could do rather than focusing on what we couldn't. A therapist introduced me to valuable resources, including biofeedback and informative books, which helped me realize the possibilities of living with dementia. I learned that I couldn't tackle this challenge alone; I needed to assemble a support team. I discovered that family and friends genuinely wanted to help, and I found solace in my faith in God. This newfound knowledge empowered me; I refused to be a victim of circumstance. I began recognizing the triggers for disruptive behaviors and actively avoided them. I stopped being so hard on myself when I failed and instead focused on finding new sources of joy in my relationship with Joe, such as nature walks with our puppy, indulging in our favorite Greek restaurant where no one minded if Joe played with his food, and of course, attending church.
In 2019, I made the difficult decision to close our design office, as managing it by myself became too challenging. Then, the pandemic hit, leaving me without work and with plenty of time on my hands. Encouraged by a colleague, and unable to travel due to the pandemic, I decided to write a book. Initially, it was meant to be a design guide on "creating dementia-friendly environments." However, after securing a publisher, Rowman and Littlefield suggested I shift the focus to volunteer caregivers—individuals like me and many of you who struggle to care for loved ones without the resources or knowledge about the disease. I rewrote the book.
The result is "Taming the Chaos of Dementia: A Caregiver's Guide to Interventions that Make a Difference." This book emerged from the lessons I learned during my caregiving journey, my professional experiences in designing memory care facilities, and extensive research. It's designed to assist family caregivers, who, along with their loved ones living with dementia, face the daily struggles of this journey. Packed with personal stories, practical examples, research insights, and actionable recommendations, this guide aims to help you find strength in the midst of adversity and discover joy in your caregiving journey.
It has been eight years since Joe peacefully fell asleep in our Lord, and I continue to miss him profoundly. I am grateful to God for granting me the resilience to endure this journey and hope to share the lessons I've learned in this book. I also extend my heartfelt gratitude to my loved ones, especially Joe, for sharing their journey with me. We hope that this guide offers support and encouragement to those who need it, reminding you that you are not alone in your caregiving journey. Together, as a community, we can make a difference in the lives of those affected by dementia.
Barbara Huelat-Parimucha is a prominent Human Centric Healthcare Designer, author, and speaker. Ms. Huelat has created healing environments and solved health challenges for more than 300 healthcare organizations and serves as a healing environment consultant to healthcare facilities, product manufacturers, academia, institutions, and the architectural design community. She has been awarded the 2023 Changemaker Award by The Center for Health Design, and the ASID National Luminary Award for Research 2020. Her quest to support human health has led to extensive research. She has written three books, including “Healing Environments: What's the Proof?” and “Healing Environments Design for the Body, Mind, and Spirit,” which have been translated into Chinese. Ms. Huelat’s latest work, “Taming the Chaos of Dementia: A Caregiver's Guide to Interventions that Make a Difference,” available now from Barnes and Noble and Amazon, provides a compassionate and insightful guide to those facing the tumultuous journey of dementia, offering solace, support, and practical strategies to navigate this challenging path. Currently, she shares human-centric designs globally via lecturers at international conferences, universities, and organizations and through research collaborations with government agencies and universities, contributing to white papers and research articles. Always fascinated with the beauty of science and the science of design, she believes human-centric design experiences can mitigate human misery.
Feel free to contact Barbara at email@example.com.