For the Sleeper family, it’s their first holiday season without dad at home. At the age of 50, Scott Sleeper is in a nursing home, diagnosed three years ago with younger-onset Alzheimer’s disease.
His decline has been rapid, said his wife, Denise Sleeper. She and her two adult sons made the difficult decision to put him in a nursing home in July.
She said her husband’s paranoia became so severe he would see his sons as strangers and the situation would become “volatile.” It got to the point where she and her boys could only communicate by text or through eye contact when they were around him.
“I thought I was going to be his primary caregiver until he died,” she said. “No matter what you did it was never enough because the disease was more than what we could give him.”
Denise Sleeper said she’s determined to help her two sons find a way to honor their family memories of great holidays spent with their father. She decided to buy a small tree and fill stockings for her sons, Connor, 19, and Kyle, 21, with humorous items and mementos.
“We are going to places that we traditionally did as a family and are doing things to appreciate what we did as a family for the holidays,” she said. “It’s an opportunity to talk about memories in a way that we appreciate them and can reflect on all the fun times we have had, even though dad’s not there.”
She is telling her story to help other caregivers realize they are not alone this holiday season. She reminds people “tomorrow isn’t guaranteed, so don’t put things off.”
“If we had waited until our golden years, we wouldn’t have had these memories. We have a lot of things to look back on and that is priceless,” she said. “We have a beautiful love story and I’m not ready to let that go.”The decline
Scott Sleeper is one of an estimated 200,000 Americans younger than 65 with younger-onset Alzheimer’s disease. Although rare, it can strike people in their 30s and 40s, according to the Alzheimer’s Association. It has no known causes and isn’t believed to be a genetic condition.
Scott Sleeper began showing symptoms in 2014; by May of that year he had to leave his job as a truck driver. Three months later, the family received his diagnosis. Denise Sleeper said it seemed “like every few weeks, we were seeing a decline.” Doctors would change his medication in hopes of finding “that sweet spot,” she said.
“We would really have enjoyable moments for weeks at a time, but we could never find that balance,” she said.
She took family leave from work to care for him. They sold their home and downsized. It was about a month later, in October 2015, that Scott Sleeper really began to destabilize.
“We always thought that caring for a person at home would be best for the person and for the family and I thought I was going to be able to do it, but this disease, it’s so much,” she said. “I was able to sustain it until the middle of July.”
Denise Sleeper said moving her husband into a nursing home was the best decision for the family. He is in a good place, has adjusted and hasn’t complained. She sees him just about every day and brings things to connect with him, like inflatable basketballs and soccer balls — two sports he was involved with in high school. Sometimes the staff and other patients join in the game of toss.
“It’s getting harder for him. His level of attention is getting shorter and shorter,” she said. “You can be next to him and he doesn’t realize you’re there and he just walks away. I just keep trying to squeeze out the time that I can while we can.”Helping hands
Denise Sleeper is among an estimated 15 million Alzheimer’s and dementia caregivers in the United States, providing 18.1 billion hours of unpaid care in 2015, according to the Alzheimer’s Association. The holidays can be particularly challenging, said Melissa Grenier, New Hampshire regional manager of the Massachusetts/New Hampshire Alzheimer’s Association.
“(Caregivers) play an important role in preparing family and friends with changes that the person with memory loss is experiencing while keeping their loved one engaged in as much holiday activities as possible,” Grenier said. “Caregivers can continue to hold onto holiday traditions with adjusted expectations.”
Denise Sleeper said she has found much support from her community. Neighbors have held fundraisers and done other things to help, such as delivering meals.
She said at first it was difficult to accept, but that she realized no one can do this alone.
“I would minimize the need for me to be taken care of, to accept help,” she said. “That’s hard for caregivers. It’s really hard for caregivers to accept the help.”
Denise Sleeper will start a new job in the new year. She’s been hired as a chaplain intern at Dartmouth-Hitchcock Medical Center, focused on end-of-life care.
“This experience with my husband has showed me just how passionate I feel about end-of-life care and the decisions you have to make,” she said. “End of life, it’s doesn’t scare me. It’s a sacred time.”
She and her family also plan to donate Scott Sleeper’s brain to Massachusetts General Hospital when he dies, in hopes it will lead researchers to a cure.
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About this series
Silver Linings is a continuing Union Leader/Sunday News report focusing on the issues of New Hampshire’s aging population and seeking out solutions. Union Leader reporter Gretchen Grosky would like to hear from readers about issues related to aging. She can be reached at email@example.com or (603) 206-7739. See more at www.unionleader.com/aging