Profile of Diane Walder
Profile: Diane Walder
Diane Walder, a 55-year-old resident of Madison, Wisconsin, knows all too well the harsh emotional, physical and financial realities of caring for an elder family member. For nearly two years, Diane provided intensive, hands-on caregiving around the clock to her ailing mother, Mickey. In February 2005, a doctor’s appointment revealed that Mickey, then 79 years old, was malnourished, had scurvy and weighed a shocking 63 pounds. These health problems were compounded by the onset of dementia, severe osteoporosis and a history of minor strokes and mental health issues.
Instead of returning Mickey to her apartment after the appointment that day, Diane took her mother home with her and became her primary caregiver. Steadily, as Mickey’s health worsened, she depended on Diane to meet nearly all of her basic care needs, including bathing, feeding and dressing. Performing these tasks and monitoring Mickey’s safety was more than a full-time job. As a result, Diane’s social networks disappeared and she suffered from constant stress and fatigue.
In addition, caregiving took a serious financial toll. Due to her mother’s needs, Diane could not keep her commitments to clients in her new business and closed it. Diane and her mother lived on Mickey’s small pension and Social Security amounting to about $12,000 per year, far below the $20, 467 that the Wisconsin Elder Economic Security Standard™ Index (the Elder Index) for Dane County shows that a single elder in poor health without a mortgage needs to make ends meet. After a year passed and Diane emptied her savings account, she made arrangements with volunteers, neighbors and her sister to take care of Mickey during weekday mornings so she could take a low-wage part-time job for respite and some income.
Moreover, Mickey had no assets. Because her income was above the Federal Poverty Level, amounting to $10,400 for a single elder in 2008, Mickey was precluded from enrolling in income support or home and community-based long-term care programs that would provide some relief. Mickey was lucky, however, to have excellent health insurance as a retired Wisconsin state employee. The same is not true for Diane who has chronic respiratory problems. Today, Diane is unable to afford the $500 fee for COBRA health coverage available through her last employer and must live without appropriate health insurance because she is not yet eligible for Medicare benefits.
The informal care system that Diane had arranged came apart after about three months. Soon after, Diane made the very painful decision to put her mother in a nursing facility. Caring for Mickey there created an entirely new set of challenges and stressors. Due to the immediate need, Diane was forced to place Mickey in a nursing facility 20 miles from her home. Also, resulting from a mistake in processing, Mickey was given a private bed that Diane and her mother could not afford. Diane did not want to distress her mother any further, so she kept Mickey at the home despite the debt she incurred.
Mickey’s condition steadily worsened and within two months she passed away. Speaking of her mother’s final days, Diane states, “If we’d had the financial resources I could have kept my mother with me, where she wanted to be—at home, in familiar surroundings and with the people she loved and who loved her. Her death was not a happy one and it all came down to money.” According to the Wisconsin Elder Index, the intensive and full-time care Mickey required would have cost $41,932 annually or $3,494 per month had Diane purchased it from a home and community-based care provider as opposed to supplying it herself. Coupled with the cost of basic needs, including housing, transportation, health care and food, the total expense equals $62,399 per year.
Today, Diane is an active volunteer and advocate for elders and family caregivers. Diane writes about her experience and hopes to engage in lobbying, public speaking and other efforts to raise awareness about the many challenges facing seniors and their families today. The financial and health ramifications of her experience remain, but Diane maintains a positive outlook and says her experience was life-changing and made her a stronger person.
Stories like that of Diane illustrate the need for well-informed decision making by policy makers, service providers and advocates working on behalf of family caregivers and low-income seniors, particularly given the economic downturn and state budget constraints. The Wisconsin Elder Economic Security Initiative™ offers a conceptual framework and concrete tools, such as the Elder Economic Security Standard™ Index, to evaluate how well programs and policies are helping elders who struggle to make ends meet.
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