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Hospice Helps Patient with Rare Disease Find Quality of Life

Steven Edwards first encountered Samaritan Healthcare & Hospice in 2008, when a Samaritan hospice team helped care for his mother as she was dying of lung cancer.

Years later, when complications from Charcot-Marie-Tooth disease started to greatly impact Steve’s quality of life, he wasn’t sure who to turn to. The neurological disorder causes a progressive weakening of the muscles, and Steve, now 63 and living at The Fountains at Cedar Parke in Atco, has very limited use of his hands and spends most of the day in a wheelchair. “I like to call my hands the decorations at the ends of my arms,” he jokes. As he continued to lose motor control in his hands, Steve thought of Samaritan, but hesitated.

patient stories - steven edwards

PHOTO: Samaritan Social Worker Sherri Brake with Steven

“I knew what they did for my mom, but I thought, ‘I’m not ready to die yet, so they must not be for me,’” he says. But a friend who received hospice care from Samaritan convinced him to give them a call, so he did.

Now a dedicated Samaritan care team visits Steve frequently at his apartment in The Fountains. Home health aides or nurses visit twice a day to help Steve get cleaned and dressed, and he receives monthly visits from a Samaritan chaplain. Samaritan social worker Sherri Brake checks in on him frequently to make sure he’s getting the care he needs. Steve says Sherri helps him note changes in his motor skills, and provides suggestions and encouragement.

To learn more about hospice care in South Jersey,
please call Samaritan at (855) 337-2808.

“I get frustrated sometimes, but I just tell myself, ‘I’m going to do this,’” Steve says about the limitations his condition brings. His self-admitted stubborn streak has helped him live independently despite his disease – in fact, Steve is quite the handyman around The Fountains, fixing computers for residents and showing movies in the auditorium. He also maintains an incredible collection of plants – Sherri calls Steve “the unofficial chief gardener” at The Fountains, as he manages the facility’s greenhouse and nurses residents’ plants back to health.

Steve thinks back and is glad he called Samaritan. “I’m happy with the services they provide,” he says.