Lawmakers to unveil bill seeking Alzheimer’s state plan

The lives of Janis Baylog-Tucker and Tom Tucker ran in parallel before they finally met.

Both were born in Northeast Ohio and spent many years in Texas before moving back closer to home.

The Eastlake couple has now been together for 10 years, married for seven after meeting on Match.com.

“We’re 80 now, we both met when we were about 70 and so when you have a lot of experience, you get to know somebody and learn their qualities and we went together for three years before we got married,” Janis said. “I knew it was good from the start and so did he. It’s a chemistry thing I guess.”

Janis and Tom are navigating a new challenge, however. Last year, Tom’s primary care doctor recommended further testing after a simple memory test. At the Cleveland Clinic, he was diagnosed with vascular dementia, “with a little Alzheimer’s,” Janis said.

Being a caregiver has been tough, she admitted.

“I think this is harder than anything because it goes not only to physical but also communication problems,” she said. “The thing is you’ve got to learn how to act, react and how to communicate with people who are going through this type of situation. It’s very difficult unless you get educated about it.”

Fortunately, Janis said, she’s been able to use the Alzheimer’s Association’s care and support services.

“I went to a number of Alzheimer’s caretaker meetings, which they put on,

thank God, because that is very helpful in learning how to deal with this,” she said. “This is a very hard caretaking type of situation and it goes to not only your personality with each other, but your intimacy and how you’re able to keep yourself as a caretaker healthy enough to deal with this because it’s very, very trying.”

According to data from the 2016 Behavioral Risk Factor Surveillance System, 16 percent of Ohio’s Alzheimer’s caregivers report frequent poor physical health. Nearly 11 percent report frequent poor mental health and almost 14 percent have a history of depression.

The couple has also gone to support group meetings put on by the Alzheimer’s Association. Janis said at an initial meeting, everyone is together and then caretakers and patients are divided.

“That was very helpful to my husband who was able to talk with other people who were going through what he is going through,”

she said.

Tom was involved in an car crash, where his car was totaled. Fortunately neither he nor anyone else was injured. Janis now does all the driving, but she said that Tom is having trouble adjusting to the lack of freedom.

“That’s been the biggest problem for him: he cannot return to his former life,” she said.

Tom is one of 220,000 Ohioans who currently live with Alzheimer’s and other dementias. For each patient, there are an estimated two or three caretakers like Janis who also need support.

On Feb. 13, State Sens. Steve Wilson, R-Maineville, and Kenny Yuko, DRichmond Heights, are announcing steps toward creating a state plan for Alzheimer’s and other dementias. The bill calls for developing a taskforce to begin the planning process.

Wilson originally introduced the legislation in December 2018, the very tail end of the legislative session.

“Remarkably, Ohio is the only state in the nation that has not established a process for creating an official, comprehensive plan to confront this growing public health crisis,” Wilson said in a statement in December. “I find that embarrassing and unacceptable.”

Wilson said that the bill is a priority for the new legislative session that began in January.

“We desperately need a plan of action,” he said. “The task force will gather information on everything from detection and diagnosis to quality of care, training, health care system capacity, fiscal impact, research, public awareness and more. This work will be done over several months with public input and conclude with a final report to the legislature and the governor.”

Alzheimer’s Association Cleveland Area Chapter President and CEO Nancy Udelson said Alzheimer’s is more than just an aging issue, it’s a public health issue. She called having a statewide plan “critically important.”

Udelson said she is hopeful the Alzheimer’s Association will have a seat at the table when the plan is drafted.

Yuko said in a statement that Ohio’s population is getting older, but the state is “not prepared to support people with Alzheimer’s, their caregivers and their family.”

“Unless we improve services for them, this public health crisis could be devastating to our communities and public support systems. An Alzheimer’s state plan will help us improve the lives of the nearly one million Ohioans who are directly affected by this disease,” Yuko said.

Janis said she’s looking forward to seeing the plan.

“To my mind it can become catastrophically financially difficult for people to know what to do or where to go,” she said. “I think it would be helpful for the state of Ohio or some organization to give us the tools we need to go forward with this.”