JEFFERSON CITY — After Christa Roehl’s mother was diagnosed with Alzheimer’s disease, her life and the lives of those closest to her would never be the same.

This was particularly true for her father, who cared for her mother through what should have been their golden years but were instead years of slow decline, of erasing the memories and relationships that had made her mother who she was. Eventually, simple tasks like brushing teeth, showering and getting dressed required assistance, Roehl said.

In her final years, Roehl’s mother didn’t recognize her own husband, thinking of him as a strange man in the room and not the person she had built a life with.

“Alzheimer’s turns loved ones into strangers,” Roehl said.

Roehl lost not only her mother but also her grandfather to Alzheimer’s as well as her uncle to dementia and Alzheimer’s. Her voice broke during testimony at Wednesday’s Seniors, Families and Children Committee hearing in the Missouri Senate, supporting HB 466, which is aimed at helping those who care for family members with Alzheimer’s and related conditions.

The bill, sponsored by Rep. David Wood, R-Versailles, would add structured family caregiving to the MO HealthNet, or Medicaid, program. This would allow people diagnosed with Alzheimer’s who qualify for Medicaid more flexibility to choose their caregiver and continue living at home rather than having to move into a facility. The family members caring for these patients must live with them full time and would receive payment for their services.

This would begin as a pilot program with 300 participants picked on a first-come basis, Wood said at the hearing. The Missouri Department of Social Services would apply for a waiver with the U.S. Secretary of Health and Human Services. The program would begin in 2020, Wood said.

This is not the first year lawmakers have pushed for similar legislation. They first looked at the concept in 2017, then again in 2018.

Eventually, Wood believes this program could save the state money, in addition to allowing the best caregivers — family — to receive compensation for their time. This is because it could keep people out of expensive nursing homes longer.

Wood shared his personal experience dealing with his mother-in-law’s Alzheimer’s. His wife, who is retired, has been able to take care of her.

“I’m living this bill at the moment,” Wood said.

However, not all families have the funds and resources to do this, he said. This bill would help those who struggle to afford taking care of their family members.

Jerry Dowell, director of public policy for the Greater Missouri Chapter of the Alzheimer’s Association, said caregivers often talk about how difficult it is to take care of their family members. This program could provide relief for those caregivers, he said.

Roehl told lawmakers that her experience showed her the importance of having compassionate policies in place to help families going through situations like hers.

“We need to fight this terrible disease on every possible front,” she said.

Supervising editor is Mark Horvit, horvitm@missouri.edu.

  • State government reporter and graduate journalism student at the University of Missouri. Graduated with a BA in journalism from The University of Alabama in 2018.

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