"Alzheimer's is a four-letter word to most people," said Bill Bruno of Holladay, who recently lost his 83-year-old father to complications of the disease. He said the family estimates their father battled the disease for more than a decade.
After moving in with his father to care for him, Bruno said, "that life quickly became the new reality. It was down to the basic level of caring for someone from morning to night."
"No one really knows what it is like until you spend 24-7 with them," he said.
Caregiving became a team effort for family members, as no one person could bear the burden completely, Bruno said. He also drew on the support of a group of caregivers in similar situations, whom he ultimately befriended and still considers extended family.
"Don't shy away from information," he advises other individuals who are caring for a loved one. "As painful as it is, and there's a natural tendency to avoid things that are painful, the more information you can learn about the disease, about caring for people who have it, about everything involved, the better off you'll be."
And Utah's plan for Alzheimer's disease aims to increase the amount of information available to caregivers and to the general population. The first goal of the plan is to create a "dementia-aware Utah."
"This is the beginning of the game," said Alzheimer's Association Utah chapter spokesman Nick Zullo. "In the years ahead, we'll be able to see the progress." He said steps in the plan need not cost anything but rely on partnerships formed in the public and private sectors, and a collaboration between agencies that serve the aging population and government.
He said the biggest misconception regarding Alzheimer's is that it results from aging. While age is a risk factor for dementia-related illnesses and Alzheimer's, it is not the underlying cause.
"This is a disease course, it is not normal aging," Zullo said. "If that was the case, everyone 65 and older would have Alzheimer's."
Alzheimer's, he said, doesn't just affect the elderly. Historically, the first diagnosis was for a 43-year-old who later died at 55.
Foster said that new and more specific tools are helping to uncover the diagnosis more often and in more people. An increased desire for proper management is driving the medical field to deal with Alzheimer's in better ways, he said.
That hope is what keeps Bill Miller going.
The 67-year-old retired academic dean spends every minute of every day "running interference" for his wife, Beverly Miller, 66, who was diagnosed with Alzheimer's disease nearly three years ago. The duo serves as ambassadors for Alzheimer's, meeting with officials across the state, to "hopefully make a difference" in how people see the illness.
"All of a sudden, I'm the chauffeur, I'm the cook. You're doing more and more of the things that two people used to," he said. "You're also looking down the line about how this is going to impact how you're living, where you're living, the kind of things you'll be doing."
While his wife is in the early-to-moderate stages of the disease, he said, he knows "there's going to be a time in the near future where we're not going to be able to do things in the same way."
"Most of the days, things seem like they always have been, even though they're not," he said. "Seeing the diminished capacities of a person who had all these skills and abilities and did all kinds of things, it really saddens you. The person is still there, but their abilities to do certain things and the frustration of not being able to do those things, is not easy to watch."
Miller said caring for an Alzheimer's patient is different than caring for someone who is aging, and lawmakers in Utah don't seem to understand how it could impact them. He said the country is facing a series of health care crises in the future, that "are going to demand a certain level of response, understanding and realization from government and elected officials."
He's not quite ready to think about what may happen years from now, but until then, he said, he'll continue to help his wife enjoy life the best she can.
"She has lost the ability to do things she's always done and there's nothing we can do about it," Miller said. "While this is the same person, it's not quite the same person. It's a sadness we both feel."
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