Patient Stories

Supporting Patients with Special Needs

Though born with cerebral palsy, a condition that causes damage to the motor control centers of the brain, Kathryn “Kat” Flynn, 54, has led an active life that includes graduating from college, riding horses, writing poetry and cultivating a strong devotion to music.

Now, suffering from progressive, severe dystonia, or muscle contractions and spasms, Kat’s condition has deteriorated to the point where she is quadriplegic, bedbound and dependent on others for all of her needs. Because of the progression of her disease, her mother and the staff at Maplewood Care and Rehabilitation Center in Amesbury, where Kat resides, decided that it was time to bring in hospice care.

Increasingly, Care Dimensions (formerly Hospice of the North Shore & Greater Boston) is caring for more patients with special needs as they age. Approximately 20 percent of Americans between the ages of 16 and 64 suffer some form of physical, mental or emotional impairment. Thanks to improved care and medical technologies, many are outliving their parents and need additional support at the end of life. Care Dimensions provides hospice care wherever they call home—in a group home, their own home or a long-term care facility. The specialized end-of-life services that Care Dimensions provides have improved Kat’s quality of life and given peace of mind to her mother. “I don’t worry about her as much because I know that Care Dimensions is coordinating all of her care and managing her pain,” says her mother, Pat Dean Flynn. In addition to her medical care, Kat receives daily visits from hospice aide Millie Sarita and frequent visits from chaplain Stan Barrett, M.Div., who plays the flute for her and a volunteer who reads to her.

To ease her pain and symptoms and add to her quality of life, Kat’s hospice nurse, Mary Patchett, RN, thought complementary therapies should be part of her plan of care. “She’s tried massage, aromatherapy, Reiki and she loves visits from our pet “therapist” and golden retriever, Patrick,” explains Patchett. “But by far, her most anticipated visits are from hospice music therapist Laura Perkins, MT-BC. Because of her deep love of music, it decreases her anxiety and helps her celebrate her life.” Doreen Desmet, LPN, Unit Coordinator for Maplewood adds: “The stress reduction and overall improvement of her well-being stays with her long after each session.”

For many adults with special needs, having the ability to be in control and make decisions is critical. Music therapy puts Kat in control by allowing her to choose the songs she wants to sing or create lyrics for new songs about her life. “She loves a wide variety of artists and she knows all the words to each song,” says Perkins. “By far the best part of my day is when Kat yells, ‘Yeah, Yeah, Yeah’ after each song. Music allows her to express herself in a way that isn’t possible otherwise.”

A retired nurse and devoted advocate for her daughter, Flynn is a strong believer in the benefits of hospice and is grateful to the Maplewood and Care Dimensions teams who work together to give Kat the best possible quality of life. “If you’re worried about the person you love, don’t wait too long to reach out to hospice. It’s not just for patients with cancer, it can provide end-of-life care for people with chronic diseases too,” she explains. “Care Dimensions' complementary therapies provide that little extra that makes Kat’s days special.”