A Partnership that Became a Family
Kevin's life spans the chasm between the dark days of institutionalization and a much more enlightened future.
Barbara was not yet two years old in 1953 when her baby brother came along. Eighteen months later, Kevin contracted encephalitis. No one expected him to survive, and yet he did. But he was left with severe seizures, intellectual disability, and behavioral problems.
"There was no such thing as early intervention. No treatments. No supports. No help. No hope," recalls Barbara. "There was no expectation of anything for kids like Kev."
The family kept him home for as long as they could. When he was 8, Kevin went to live at a state institution, which would be his home for the next 30 years. He was clever and independent, qualities that helped him survive in a harsh environment. In the transition to deinstitutionalization in the early 90s, he and two other men from the institution moved to a May residence. It would be home for the rest of their lives.
“The guys” quickly acclimated. Kevin, Danny, and Paul became more engaged. They attended a May Day Habilitation program together and got along well at home. They each did their own thing. One liked to watch the news, another was a fan of Jeopardy.
The three friends enjoyed dining out each week. They also traveled well together, going to Disney World and on cruises and road trips. May’s staff was committed to getting the men out as much as possible. They joined a Monday night bowling league. They all had library cards and enjoyed movies and Celtics games.
In 2006, when Kevin was in his early 50s, he began having significant problems with his hip. He would lose his footing; he started falling and became fearful of getting hurt. He now needed a wheelchair, but clung to his independence as much as he could. May arranged for PT at his day program, and staff did exercises with him at home.
“We all wanted Kevin to be able to remain here and be safe,” says Barbara. “May said, we’re there with you. We’ll staff him while he’s in the hospital. 24/7. The hip surgery, recovery, and rehab took nine months. Then he had to wear a huge leg brace, which required a lot more assistance. I thought they would say he cannot stay here, but they never said a word.”
Then came the diagnosis of kidney failure. The staff continued to step up, especially in the last 18 months of Kevin’s life and through countless medical appointments. It required a lot of coordination. Not only to accommodate Kevin’s needs but also to maintain the level of care for the others.
When hospice got involved to assist with end-oflife care, it was a big change for the team. Some had been through this before, but there was a lot to learn and it could become overwhelming. Staff received additional training and assistance from our Nursing department, and everyone was committed to working together with hospice, as a team.
“At the end we were discussing dialysis, and his doctor suggested that we consider palliative care,”remembers Barbara. “The staff was so supportive: Whatever you decide. You’re his guardian. We’ll be with you. I thought Kevin would have to go to a nursing home… and that’s where his life would end, in an institution again. But no. The staff wouldn’t let that happen. This is his home. This is his family. Danny and Paul would be so upset. And they took care of him 24/7. So he could spend the rest of his life in a place where he was known and loved.”
On June 19th Kevin died peacefully at home, surrounded by the staff — “his family, like angels,” says Barbara. “From beginning to end, over 25 years, it was a wonderful partnership that became a family and lifted everybody’s hearts, always. May is a beacon of hope for families. Right from the start, I was heard. They gave Kevin a life with happiness and stimulation. Fulfillment.”
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