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How one couple is coping with Alzheimer's
Canton Repository - 11/5/2019
Jennifer Blough updates her husband Rod's weekly calendar on a chalkboard in their kitchen every Sunday.
Rod used to keep track of his time down to the minute when he was the vice president of human resources at Frigidaire Home Products in Dublin, but he now relies on the calendar to help remind him of what day of the week it is.
The 61-year-old Dublin resident has two types of dementia: younger-onset (also known as early onset) and Lewy body dementia. Younger-onset Alzheimer's happens in people younger than 65, and Lewy body dementia occurs when protein deposits grow in nerve cells in the brain regions involved in thinking, memory and movement, according to the Mayo Clinic.
Ron was diagnosed with younger-onset Alzheimer's when he was just 58.
"I feel a clock ticking," Rod said of how his life has changed since the diagnosis.
About 200,000 Americans under the age of 65 have younger-onset Alzheimer's, and 5.6 million Americans have Alzheimer's, according to the Alzheimer's Association. Roughly 220,000 Ohioans are living with Alzheimer's, according to the Alzheimer's Association.
There is currently no known cure for Alzheimer's disease and it is the sixth leading cause of death in the United States.
People like Rod who are diagnosed with Alzheimer's before their 60th birthday are not eligible for support and service programs under the Older Americans Act. The act aims to help older adults live as independently as possible, by filling in the gaps left by Social Security and Medicare. It provides for such services as home-delivered meals, caregiver support and transportation to medical appointments.
The Older Americans Acts expired on Sept. 30 and is in the process of being renewed by Congress.
The Dignity in Aging Act of 2019, put forward by Congress, would amend the Older Americans Act to allow individuals under age 60 who are diagnosed with younger-onset Alzheimer's to access the same support programs, among other changes. The Act passed in the House of Representatives last week and is now in the Senate.
"It's unfortunate that people are getting the disease early," said Trey Addison, state policy director for the Alzheimer's Association. "... When people have access to Older Americans Act health services, they get an additional level of support. It just gives them an extra arrow in their quiver where they can go out and get access to services."
In Ohio, Gov. Mike DeWine is expected to sign a bill into law that would create the Alzheimer's Disease and Related Dementias Task Force within the state Department of Health.
Senate Bill 24 would create a 21-member task force that would make recommendations to help improve services to patients and caregivers, build awareness about the disease and prepare the community for the impact of an aging population.
"It's a cruel disease," said Sen. Steve Wilson, a Maineville Republican who is one of the bill's primary sponsors. "It's a very cruel disease and it's a difficult one for a family to handle."
Jennifer Bough said, "When you face (Alzheimer's), you're very much aware of what's happening and what's to come."
When Rod first received his diagnosis two years ago, he fell into a depression and was hospitalized for suicidal thoughts.
Rod said he had a choice: "I was either going to kill myself or I was going to choose the positive path and I chose the latter"
He said he now copes by "living one day at a time."
The disease has trimmed years off his life expectancy. Instead of living well into his 70s or 80s, Rod said he is expecting to live through part of his 60s based off what doctors have told him.
"... That's a big difference," Rod said.
The disease also moved up his retirement by about 15 years, he said, which was an emotional experience since so much of his self-esteem has been tied to his work. Rod went on permanent disability in May 2015; he retired in 2017. Now, he devotes much of his time to being an advocate for Alzheimer's by talking to senators and Congress.
Rod's symptoms, including memory loss and impaired ability to multitask and solve problems, have gotten worse over time, his wife said.
Most people with younger-onset Alzheimer's develop symptoms in their 40s and 50s, according to the Mayo Clinic. Rod's diagnosis came in 2017 after three falls knocked him unconscious within about nine months of each other starting in 2014.
The first occurred when he collapsed at work and hit his head on a concrete floor in August 2014. He lost a good chunk of his memory, so the doctors initially thought he had amnesia and attributed stress to his fall. Four months later he fell again at work and hit his head on a table. His third fall happened in May 2015 when he rode his bike into a telephone pole and suffered a traumatic brain injury.
"People did not believe at first there was any dementia involved," Jennifer said.
She has taken on a new role for her husband of 18 years, and the mother of two adult children is constantly thinking about Rod and his needs on top of her responsibilities as a human resources director for the U.S. Trotting Association based in Westerville.
"Alzheimer's is an all-day challenge," she said. "It doesn't go away even when he sleeps."
During this year's Walk to End Alzheimer's in September, Jennifer nearly broke down in tears, she said. Rod was on stage, holding a blue flower signaling that he had Alzheimer's, and the speaker talked about how Rod was advocating to increase awareness and find a cure for the very disease that was drastically changing his life.
"We spent so much time telling people ... how we are living well with this disease that I forgot we are living the disease," Jennifer said.
When he's not raising awareness for Alzheimer's, Rod likes to fish with his 86-old father on Lake Erie.
He bought a boat and travels to Smithville, about an hour south of Cleveland, to spend the night at his parents' house every week or so before driving up to the lake.
"Every time that I can go fishing is time we're stealing from the clock," he said.
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