Lost in the fog of dementia

When you see the numbers, they’re more than a little staggering: as many as 5 million Americans living with Alzheimer’s disease and other forms of age-related dementia, 9.9 million unpaid caregivers (typically a spouse or other family member), $148 billion in annual costs.

In this sea of statistics, Jennings and Clarice Sunderland are mere pinpoints, yet their story is a compelling illustration of the challenges that families – and society – are up against when it comes to age-related dementia.

By now, many Minnesotans have probably heard about the Sunderlands, who live in northern Minnesota on a dairy farm near Bagley. Clarice, a retired nurse, has Alzheimer’s disease. As the Minneapolis Star Tribune relates, she “began wandering this summer, so Sunderland would settle her in a chair in the barn while he and his son, Kurt, milked the cows, or take her along in their pickup to the fields.”

At home in the late afternoon, he had the chain.

Tired from the chores he began before dawn, Sunderland, 78, would settle in his recliner beside his wife of 58 years, watch TV, and sometimes fall asleep. To keep Clarice close, he looped a length of chain around her and her chair, the other end in his hand. “If she started to get up or lift off that chain, well, it rattled and woke me up,” Sunderland said. “It was a pretty good idea, I thought.”

Clearwater County authorities did not agree with him. Apparently alerted by Sunderland’s brother, who was concerned about the situation, two sheriff’s deputies and a social worker showed up at the house this past August. Clarice Sunderland was moved to a nursing home. Her husband, charged with false imprisonment, spent the night in jail.

He could have been convicted and sentenced to up to three years in jail, but the charge was dropped this past week. At last report, the family is making arrangements to bring Clarice home and to line up daily visits by a home health worker. They’re also reportedly looking into a wireless security system that will alert them if Clarice wanders.

The case is being called an example of the desperation experienced by many families trying to care for a loved one with Alzheimer’s. What if you want to keep your loved one at home but don’t have the knowhow to provide safe, appropriate care? What if you can’t afford a paid caregiver? What if you live in an isolated rural area with few services nearby?

I think the Sunderlands’ story is an example of something else as well: the utter lack of preparation that many families have for dealing with Alzheimer’s and other age-related dementias. There is no dress rehearsal, after all, for something like this. Many families simply have no clue what to expect or what to do. As the disease worsens, or as behavioral issues such as wandering or aggression begin to develop, they are left helpless. They might not even know how to find out if there are any local resources to help them, let alone know how to tap into those resources and put together a plan. For people who have been self-reliant all their lives, there’s an additional barrier: They’re often reluctant to admit they need outside help.

Here in west central Minnesota, we’re fortunate that a network is being developed to help knit together some of these gaps. The West Central Dementia Awareness Network has only been meeting formally for a few months but it already is working to increase awareness of the resources available and to help make sure caregivers receive adequate support. The group also is pushing for earlier diagnosis of Alzheimer’s disease so families have a better ability to plan for their future.

The regional group, whose members include organizations that provide services and care to the older population, is officially introducing itself to the community this coming Tuesday, Oct. 27, with a series of events at St. Mary’s Church in Willmar. Virtual tours of what it’s like to have dementia will be available from 9 a.m. to 5 p.m. (registration is required; call the Willmar Community Senior Network at 320-214-7140). Free memory screenings also will be offered from 4 to 7 p.m., no appointment necessary. A representative of the Alzheimer’s Association will give a presentation at 7 p.m. on understanding Alzheimer’s disease.

As one of the members of the group put it, “We’re just trying to help people become more aware.”

For what it’s worth, many of the critics have been unduly harsh on the Clearwater County authorities for how they handled the Sunderlands’ case. Should Jennings Sunderland have been taken to jail and his wife removed to a nursing home where, as it turned out, the care was less than adequate? The answer is no. Compassion, not heavy-handedness, was called for here. But chaining a 76-year-old demented woman to her chair is not something that ought to be condoned either, regardless of how devoted or how desperate her spouse was.

Most families want to do the right thing. Unfortunately they don’t always know what the right thing should be. It’s hard to imagine the Sunderlands are an isolated case or that there aren’t other families who are overwhelmed to the point of neglecting or endangering an aging loved one who has dementia. Community and regional strategies to help ensure these people don’t fall through the cracks are something that’s long overdue.

West Central Tribune photo by Gary Miller

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