Alzheimer's and dementia impact so many families, but if you don't have a loved one with the disease, it can be difficult to know and understand the home adjustment.
KNOXVILLE, Tenn. — Often, those who live with, or care for, someone who has Alzheimer's or dementia, feel as if their life is one many don't understand. There are adjustments not only to the home, but to a way of life.
More than 120,000 people in Tennessee are living with Alzheimer's or dementia. That's more than can fit in Neyland Stadium at the University of Tennessee.
Alzheimer's Tennessee said this disease is the most expensive illness in the country, too. Add in the grief of losing your loved one twice, and the emotional toll is stronger than the financial.
Everyone's story with the disease is different. For Ken O'Mhuan, it's a new normal he is still trying to navigate.
O'Mhuan has a dementia diagnosis. For him, it's like being a pioneer again. He moved from the Pacific Northwest to East Tennessee almost five years ago. Now, he lives with his only daughter, Heather O'Maonaigh.
"He has pretty good recall of high school and his early days, but the near-term memory is impacted," O'Maonaigh said.
There are more than 100 forms of dementia.
"Some people never really get a clear box," O'Maonaigh said. She jokes her 80-year-old dad has "many boxes and no boxes."
O'Maonaigh helps him navigate the diagnosis.
"It is an adventure and it is a gift," O'Maonaigh said.
Moving her father into her home was a difficult decision, but a necessary one.
"As a kid, you don't want the roles to change at all, and you want everything to sort of stay the same, and don't want to overstep," O'Maonaigh said.
In this case, this only child worried what would happen if she didn't. So, she adapted her house to fit her father's needs. She added handrails to the bathroom and started writing more notes.
Reminders of schedules, instructions on how to make a phone call, all memories that once came naturally for O'Mhuan. He stays on a schedule thanks to those notes, though.
O'Maonaigh is in charge of arranging his transportation, maintaining his schedule, ensuring his safety, and making sure he is okay at the end of each day.
It's a lot of pressure, and she says each night she hopes she did the best she could that day.
He continues to adapt. He wrangles what to remember through writing notes of his own in small notebooks.
This former lawyer doesn't let his brain collect dust.
"It's a whole way of looking at time and space for me," O'Mhuan said.
He continues to take classes through ORICL, which is the Oak Ridge Institute for Continued Learning. He reads books and refreshes himself on other lessons.
He stays active and has a full schedule. When he's not going to the gym or making friends in public:
"I really am finding that it's actually more important now than it was ever before," O'Mhuan said.
He uses Alzheimer's Tennessee as a resource.
He's in the "Hearts Sing" chorus, and is a regular in groups, like the Memory Cafes, where other people with a diagnosis meet to talk, because the disease can be isolating otherwise.
"It makes me feel like I'm not a human anymore," O'Mhuan said. "I realized I wasn't alone in coming up with these thoughts."
These programs and friendships make them both realize, there's still life to live.
"It's very enriching to be a part of that community and to learn and grow in those ways," O'Maonaigh said.
They are just one family out of thousands, trying to make it through each day. They aren't done writing their story.
"It's not all about what you can't do," O'Maonaigh said. "It's about figuring out what you can."
If you are a caregiver, or a family member in this situation, there is help and hope out there.
Alzheimer's Tennessee is a local resource. They have a free caregiver training on June 22nd.
You don't have to travel this journey alone. There are also so many other ways you can get involved with the Alzheimer's community in your area.
