In-home care takes toll on families

Diane Stuebs holds a photo of her mother, Lorraine Kubly, before a visit with her at Heritage Homes, 700 Welsh Road. Kubly, 85, was diagnosed with dementia in 2005. Stuebs and her husband, Ron, cared for Kubly when she lived at home on Stimpson Street.

Diane Stuebs is waiting for her mother to die.

Those words leaving her lips are not something she is proud of, but they are true. Stuebs’ mother, 85-year-old Lorraine Kubly, lives in the Memory Care Unit at Heritage Homes. She is bedridden, incontinent, can no longer swallow on her own and doesn’t talk.

“I want her to pass,” Stuebs said. “She’s suffering so much — what kind of life is that?”

Before she lived in Heritage Homes, Kubly lived in her house on Stimpson Street. Stuebs and her husband, Ron, took care of Kubly, dropping meals off for her, checking in on her regularly and running over to help when she needed it.

Kubly would often get confused, call Stuebs, and when she got there nothing was wrong, on the surface.

“Once she called and thought there were people with guns outside her house. We ran over there and found she was watching a TV show and thought it was real,” Stuebs said.

Stuebs has been a caregiver since her father became ill in 1997. When he passed away, Kubly was ill as well. She was diagnosed with dementia in 2005.

When Kubly lived alone, Stuebs’ sense of obligation to her mother kept her from holding a full-time job. All she could manage were part-time jobs, which enabled her to devote more time to her mother, she said.

Stuebs started driving a bus for Jefferson County Head Start and would often visit her mother at home during breaks. However, there were times when her mother required more care and Stuebs ended up sleeping overnight on Kubly’s couch to make sure she was all right, she said. Ron would stop over by Kubly during his breaks as well.

“We felt we had to check up on her all the time. After Ron and I got married we thought we would travel, but we couldn’t. It (dementia) took over our whole lives, and up to this day it still does,” Stuebs said.

Stuebs sought help from the Jefferson County Aging and Disability Resource Center, which helps caregivers connect with resources.

Stuebs was looking for financial help, because her mother’s care started draining the family’s resources. She eventually gave up on the process because she felt the center’s employees would urge her to put her mother in a facility rather than make keeping Kubly at home more manageable.

“I never got the answers. Maybe it was my fault, I was a little reluctant to reach out,” Stuebs said. “I was a CNA and I worked at nursing homes, I was worried about someone telling us we shouldn’t keep her at home.”

People should not be afraid to reach out to Aging and Disability Resource Centers, said Melanie Macdonald, Dodge County ADRC aging services supervisor.

About 80 percent of care given to people living with dementia is provided by family members, according to a 2010 survey conducted by the Alzheimer’s Association. More than 186,000 Wisconsinites care for loved ones.

Two out of three people who provide care tend to advocate on behalf of their loved one with service providers and government agencies, such as aging and disability resource centers. However, Macdonald and her staff have noticed people wait to seek assistance until they reach a tipping point.

“People tend to wait too long, to the point where they’re so overwhelmed they don’t know which way to turn,” Macdonald said.

When someone calls the ADRC, they are directed to an aging and disability resource specialist, such as Lynn Lothen. The first thing Lothen asks a caregiver is what is most important to them, whether it’s having a few hours’ break for sleep, to have time to themselves or getting their loved one care they can’t provide.

Lothen then looks at the family’s ability to pay for private services or whether they need grants to cover costs. After financial status is determined, Lothen can recommend a few organizations to help. The most common areas caregivers and their loved ones need assistance include respite, transportation and nutrition.

Respite can be accomplished through in-home care or an adult day care center. Having a few hours to themselves helps people recharge, mentally and physically.

“After you’ve been a care provider, it can be very mentally, physically and emotionally draining,” Lothen said. “Sometimes all they want is just to be able to sleep and have someone watch their loved one.”

According to the Azheimer’s Association report, 61 percent of caregivers reported high or very high emotional stress, with 33 percent suffering from depression symptoms.

Those who assist their loved ones may risk their physical health as well, with the study finding caregivers at greater risk for hypertension, diabetes, high cholesterol or high body mass index. Their immune function may also decrease.

The county’s transportation service is primarily used to take people to medical appointments, but it also drops people off at grocery stores, for instance.

Meals are prepared at 10 sites and delivered throughout the county by 250 volunteers. The meals are delivered right to a person’s door, and just those few moments of human interaction make a difference in someone’s life, Macdonald said.

Many of the services provided by the county do not require people to be in financial need, which is one of the most common misconceptions people have about ADRCs, Macdonald said. While assistance is available for those who qualify, those who don’t shouldn’t think the ADRC can’t find a program that will fit their situation.

ADRCs aim to work with people, and when the center can’t do it alone, it combines forces with Adult Protective Services.

“If someone is in a really bad situation and it’s compromising their health significantly then we’re required to make a referral to Adult Protective Services ... but that doesn’t mean the person would be removed from their home, it just means there would be one more person looking at what the options are,” Macdonald said.

Often the two agencies combine resources, for example, to provide in-home care five days a week, as opposed to two, Macdonald said.

The Jefferson County ADRC provides many of the same services as Dodge County.

While help is always welcome, those with parents and loved ones living with dementia have a hard reality to grapple with beyond quality of life. Watching a person slip away is torturous, no matter how hard a family works to keep a loved one comfortable at home, a fact Stuebs can attest to.

“It breaks my heart to see my mom like this,” she said. “It breaks my heart that she doesn’t know us.”


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