Planning for care should start early, experts say

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Gina Duwe
Monday, September 30, 2013

Dealing with the emotional turbulence of a move or a change in care can be difficult for a loved one who needs help, so experts and families who have been through it suggest starting the discussion early.

Convincing loved ones they need more help can be a delicate task.

Paint a picture of what a day of care would like, suggested Carrie Cowan, a registered nurse team leader at Agrace HospiceCare in Janesville.

Explore what life would look and feel like. Talk about the time and financial commitment of a week, a month or three months as a disease progresses, she said.

The conversation might be too overwhelming at the time of a diagnosis, but maybe it can be brought up as symptoms require greater management or after one or two trips home from the emergency room, she said.

Until you're confronted with a need to move, “you really don't think about it,” said Sue Prostko, Rock Haven administrator.

People plan for many things in retirement, she said.

“We also should prepare our health care plans as to what our needs might be in the future,” she said.


At 63, Diane Skinner, who with her husband owns Kelly House in Evansville, suspects she'll have a hard time parting with her belongings. She hopes her kids can take what they want, and in 10 years she hopes she will have downsized more.

“Rather than holding on to that stuff, we should be parting with it now,” she said.

Jane Whitmore, 101, admits making the move to an assisted living apartment at Kelly House was difficult, but people “probably would be happier once they got in there,” she said.

“It's making up their mind, giving up their apartment. That was horrid to do,” she said.

But it was easier than giving up her car 34 years ago.

“Aww, that is really giving up your independence,” she said, shaking her head.

Many people are reluctant to leave homes where they've lived for 50 years or that they built with their own hands. They say they'll never leave, Skinner said.

“I think the people who are the most successful thought about downsizing when they're young enough to get used to it,” she said.

“You just have to be honest with them—let someone else enjoy it,” said Rick Sheridan, sales and marketing manager at Cedar Crest in Janesville.

Sometimes the process is held up by the challenge of figuring out what to do with great-grandma's possessions that no one wants, he said. One way to lessen the separation anxiety is to create a “brag book” containing pictures of the items so the family member can always look at it and show others, he said.

Another approach is presenting a move as a short-term trial, he said.

“'Let's just try this for a couple months,'” he said. “Then the resident acclimates to the new surrounding instead of, 'Here's where you're going.'”

Many places will allow potential residents to spend a night or two while others allow month-to-month leases to try a short-term stay.

A needs assessment can help determine the level of care needed.

There are many levels of services just for eating, for example, Prostko said. The goal is to find the least-restrictive options to meet the needs.

Officials recommend starting at the county Aging and Disability Resource Center, where specialists help people understand the long-term care options available and help people apply for programs and benefits.


Area experts and families who have been through the process offered advice:

-- Don't wait. Family gatherings during the holidays can be good times to discuss plans.

Get your “ducks in order” before an emergency, said Jennifer Thompson, division manager of the Aging and Disability Resource Center of Rock County. It's better to talk about the care a loved one wants when he is healthy rather than when he is in an intensive care unit and family members all want to give their input, she said.

Pam Hatfield, branch manager at BrightStar in Janesville, has seen families interview agencies when their parents don't need help. Sometimes it's triggered by an event that requires adult children to take time off work to help, she said.

“Looking back, they wish they would have known more about home care because they had to take off work,” she said.

-- Visit sites and talk to friends. People often move to places where they know other residents. For others, being able to picture life in a facility can make all the difference.

-- Think programming.

“Sometimes you get caught up in what a facility looks like because it's either brand new and beautiful or not so new and not that beautiful, but it's programming,” Thompson said.

“Do you want your parent—or do you yourself want—to be sitting in a couch all day watching 'The Price is Right,' or do you want to be taken out to see the fall colors, or do you want to have an art project, or do you want to be taken to church?

“Talk about the kinds of activities they offer and the kinds of transportation they're willing to provide,” Thompson said.

-- Consider what is important to the person. If a person is a former chef or enjoys cooking, they should ask to see a menu, Thompson said. If they enjoy gardening, ask if the facility provides a garden or if they can have plants in their room.

“You have to go back and find out what was important to them in their life,” she said.

She's heard stories of people unhappy about a move until caregivers learn more about them. A master gardener could be tapped to plant and water flowers around the complex, for example.

“Just their flexibility with some of those types of things is so important for the person to thrive,” Thompson said.

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