Broken Routines

Closures cause caregivers to take on new challenges

Susan Reynolds-Smith’s son Reis is struggling to understand why his world is being turned upside down. Normally he would be spending his days getting exercise and taking part in community-based outings and work programs for six hours a day at Sunshine House. 

But now Reis, a 24-year-old with intellectual disabilities who’s used to the caregivers and friends he usually sees every day, is sequestered at home like most Wisconsinites. Explaining why there’s been such an abrupt change to his routine has been challenging. 

“It’s hard to communicate to him a virus,” Reynolds-Smith said. “He doesn’t have full comprehension of why his day is different.”

Sunshine House temporarily suspended client services March 23 in response to COVID-19 concerns. This includes personal care, day services, employment services, transportation services and senior services. The organization serves 90 clients with special needs and disabilities who require a variety of services. Director Randy Morrow said case managers have been working diligently to ensure that these individuals will be well cared for during this time, reaching out to each client and his or her caregiver(s) individually.

A day at home in Ephraim for Reis isn’t spent playing video games or participating in e-learning. It’s spent manipulating blocks or working on sensory and motor skills. Reynolds-Smith and her son make a big deal out of trips to Piggly Wiggly and – before the coronavirus-related closures – attending church services: a couple of his favorite activities. 

With his regular work assignments on the cleaning crew at the Door County YMCA and his transportation disrupted, Reis wakes up thinking it’s a Saturday or Sunday and asks to go on outings, Reynolds-Smith said.

“Because of Reis’ diagnosis, he doesn’t understand personal space or social distancing,” she said.

His family is working hard to ensure that his routine is as close to normal as possible. That means doing things such as waking up at the same time everyday, doing chores and taking walks outside for exercise.

Reynolds-Smith is Reis’ full-time caregiver. Having him at home doesn’t change much of her day. While he was using the services of Sunshine House, she often spent her time alone making art or running.

Reis is now spending more time with longtime caregivers Nancy and Lyle Popour, a husband-and-wife duo who see him regularly on Saturdays, and they’re working extra hours to visit with him during the week as well.

Sunshine House tried hard to remain open and gave families a week’s notice to arrange respite care, but there isn’t a regular pool of caregivers who are available to provide assistance in Door County.

Reynolds-Smith has had to put ads in the Peninsula Pulse to find extra help – three during the past five years. Her family has also found caregivers through word of mouth and through people who know Reis and want to help. Ben Anderson was interested in helping after meeting Reis at Gibraltar, from which they both graduated. Before the coronavirus concerns, Matt Stone was also visiting three times a week in the morning for an hour so Reynolds-Smith could go running.

“What I enjoy most is that I know I’m helping,” Stone said. “Susan gets to go for a run, and Reis gets to be around someone different for a little while.”

Reynolds-Smith said it’s challenging to find caregivers who are interested in that type of work, and it’s hard to compete with the service industry, in which people can make more money. Sunshine House has a hard time finding caregivers as well.

In suspending services, roughly 80 percent of Sunshine House’s staff has been temporarily reduced, Morrow said. Despite this leave, they are still looking for ways to help. In conjunction with the fire department, Sunshine House case managers and staff members are working on a list of individuals who need food or meal assistance. 

The other 20 percent of the staff works on extremely limited production in-house to support business clients (while maintaining mandated safeguards such as six feet of social distancing), and putting together financial and operational plans to get started again as soon as it’s possible, Morrow said.

“Our staff are probably some of the most amazing people I have ever worked with,” he said.

Morrow is confident that when operations begin again, the staff will be able to return.

“Right now, we’re trying to do the things we can to make sure that we’re going to be in operation again for another 49 years,” he said. “That is our plan. We’ve been around for 49 years – our hope is to be around for another 49.”

Until then, families are struggling to fill the gap at home.

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