Ocene Neglik came to the JFS Caregiver Support Group in January 2019 and has been a regular attendee since then. She agreed to share her story with us for this month’s Caregiver Spotlight which celebrates National Caregiver month.
Since her husband Ray suffered a stroke in 2007, Ocene Naglik has been his primary caregiver. Ocene recounted the day her husband had his stroke which is forever imbedded in her mind. That day also changed her life. Since the stroke, Ocene has learned many valuable lessons but one she feels is critical is to give herself permission to feel whatever she may be feeling in the moment and acknowledge that she can only deal with each moment as it comes. She read many self- help books in the beginning of her time as a caregiver and wants to write one of her own that focuses on the “how” of caregiving. She finds that too often, books and resources emphasize the “what” of caregiving but not how to get there. She wants to help others learn how to utilize resources, ask the right questions, and take time for self-care. She emphasized the need to listen to your body and take care of it because as caregivers, there is often a tendency to feel the need to do it all and suffer the physical and emotional consequences of not taking care of ourselves. She also shared the importance of challenging the person you are caregiving for to be empowered to do what they can for themselves within their limitations to improve their sense of self. She does this with Ray by challenging him to dress himself in the mornings rather than doing it for him.
As an avid traveler, Ocene also stresses the need to ask questions constantly. When traveling with a disabled person, there can be obstacles at every turn, and it is important to recognize the difference between an inconvenience, an obstacle, and a crisis. She works to keep those inconveniences and obstacles from turning into crises by planning and preparing. She says not to be embarrassed to tell people exactly what your situation is and what your needs are. Being open provides an opportunity for more information that you might not have known you even needed, such as wheelchairs built for airplane aisles to counter depth refrigerators. Although there are constant challenges, Ocene continues to move forward and find solutions to the problems that arise. She also gives herself permission to be angry, to cry, to be unhappy, to feel joy, to experience victory in small successes, and to take breaks when possible. Ocene enjoys watching “A Million Little Pieces” and “This Is Us” on tv.
Thank-you Ocene for sharing your journey with us!