The Wedding
Willie and Melanie shared hopes and dreams of a life together. They envisioned an 'Island Wedding' with a honeymoon of sun-filled days sailing in the Caribbean. That was before Willie, aged 41, was diagnosed with Amyotrophic Lateral Sclerosis (ALS), a rapidly progressive and fatal neurodegenerative disease that causes muscle weakness and atrophy. Consuming all the information he could via the internet, Willie understood ALS was not conquerable, but decided early on to control whatever he could in his illness.
Willie heard about hospice care and after visiting the Hospice of Charleston Web site, initiated his own care. At first, Willie and his family were leery. Willie really wanted to be in control of his life. He wanted to stay at home and avoid the hospital. Traditional pain medications made him 'loopy' and he insisted his preferences for other pain reduction techniques be investigated. And then there was the 'hospice team' coming and going. Could they really make this work?
Kristie, Willie's primary Hospice of Charleston nurse case manager discussed why hospice would be helpful. First, per Willie, "She did a good job of explaining the team. We would have a nurse, a social worker, a home health aide, a chaplain and a volunteer. Hospice of Charleston staff physicians would work with the team, too. Kristie allayed my fears about losing control and that if something were to happen, hospice would be there to help me and my family. Although my body would not respond to rehabilitative physical therapy, Hospice of Charleston sent a physical therapist to show Charlene, my home health aide, how to work stretches into my daily baths. This really helps with my pain."
Willie loves to share how he makes his hospice team 'think outside the box.' "I investigate all I can using the internet and my team listens to my requests and does their best to help me access comfort techniques. My research has uncovered four things that can reduce ALS pain: moist heat, stretching, massage & a Jacuzzi. Hospice has addressed the first three. Emily, my social worker, found a massage therapist with neurological experience who was willing to come to my home as it is so difficult for me to leave as well as offer some initial massage at a much reduced rate so I can determine if it makes a difference. I am impressed by how promptly the hospice team responds to my requests. Though, I think the Jacuzzi maybe beyond what they can provide!"
Responding to patient and family's request is a primary goal of Hospice of Charleston's services. Willie's mom, Ugne, first mentioned the wedding as an aside to Emily, Willie's social worker. "She must have taken the thought right back to the office," says Ugne. "Within days, Hospice of Charleston chaplain Greg Mason called and asked Willie if he could visit."
Willie shared with Greg the dream wedding he and Melanie had discussed. "The beach, with the ocean in the background," Willie told Greg. What went unspoken was Willie knew it was not feasible to take his motorized wheelchair into the sand. Greg asked if they would like him to officiate the ceremony and have our volunteers plan the wedding. Agreement from Willie started a wonderful, life affirming mission. Hospice of Charleston volunteers became very eager wedding planners!
Hospice is about living life as fully as possible. So, it was with tremendous excitement and energy, hospice volunteers, with guidance from Chaplain Greg and Willie's hospice team, put their energies into making the wedding come true. Within 3 weeks the wedding was held at Wild Dunes on the Isle of Palms on a wheelchair accessible boardwalk with full view of the ocean and beach. Memories were captured by A Charleston Wedding who generously donated photography services. Willie, Melanie and their families gathered to share a wonderful celebration. Willie reflects, "Having the beach, the ocean and space for our family to share the ceremony was more than I thought possible. Hospice of Charleston is supporting me and my family, letting me enjoy my last days, helping in anyway."
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Photography courtesy of CharlestonWeddings.com
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