Supporting Families & Caregivers
Kathy and Marie’s Story
Marie and her daughter, Kathy, live in a 2nd floor apartment in Medford. Marie will be 91 in June. Her daughter is 52. Kathy has Down syndrome and rheumatoid arthritis. Kathy has been bed bound for over 12 years. Marie provides total care for her daughter 24/7. Kathy uses a bedpan and needs her mother to cook and serve her meals, bathe her and change the bedding. Kathy is unable to sit up or roll herself onto the bedpan. Her mother also needs to be sure that Kathy gets to all her medical appointments, which requires an ambulance to transport her from home to appointment and back. Marie coordinates the appointments and the ambulance. In addition, she keeps track of Kathy’s medications and distributes them at the appropriate time and dosages. Kathy is eligible for 49 hours of PCA. However, Marie does not own nor know how to use a computer. To find a qualified PCA was impossible. Marie became overwhelmed attempting to understand the required paperwork and was fearful of doing something wrong and getting into trouble. Even with assistance, Marie attempted to train 4 different PCAs identified through the Rewarding Work website. None were dependable. A 5th could not pass a CORI.
This year Marie has had two different hospitalizations and recently found a lump in her breast. While Marie was in the hospital, various family members took turns making sure that Kathy was cared for. The Department of Developmental Services (DDS) provides assistance towards the cost of funding for 5 hours per week of a Home Health Aid. Marie remains determined to continue to keep Kathy at home to home and provide her care for as long as she is able