Alzheimer's in Nevada: Help is out there, but underused
Dick Tatro knew something was wrong. He was doing some odd things.
"I started doing wacky things. I would go the wrong way on the golf course," he said.
A doctor gave him the bleak news: He had Posterior Cortical Atrophy, a variant and rare form of Alzheimer's Disease.
Dick was just 52 years old.
"Anyone who hears the word Alzheimer's thinks of their 90-year-old grandmother who has Alzheimer's. That's not the case. There are many young families who are dealing with it, as well," Mona Tatro, Dick's wife, said. "Every day is a struggle but we're learning. We try to laugh as much as we can."
Alzheimer's is a degenerative brain disease and the most common form of dementia. 45,000 Nevadans currently have Alzheimer's and that number is expected to grow to 64,000 by 2025. There's a good chance you probably know someone who has it or you will in your lifetime.
Dick was the key speaker at the Alzheimer's Association Walk in 2015. He wanted to world to know how tough it's been for him, his wife, and then 9-year-old son. News 4 has followed the Tatro family for the past two years and seen Dick slowly lose his words and slide into the disease.
"I'm so proud of both of them. Mona has just taken over," he said. "Charlie is great... I can just feel the love of that kid. He's really awesome."
Dick was unable to hold on to his job. Mona has taken on the role of caregiver and financial provider.
"He left work in October (2014) and never went back, so we lost his income. I lost my husband. I don't really have a partner anymore that helps me with running our house," she said.
Charlie, who is now 12 years old, is slowing losing his dad.
"It's been hard because instead of him taking care of me it feels like I have to take care of him. So I have to grow up really faster," Charlie said.
Unfortunately, Dick had to move into a specialized Alzheimer's home in Reno June 1. His wife visits him every day. His son goes a couple of times a week. It's hard for both of them.
Help is out there, but underutilized
But as hard as this disease is on families, it doesn't have to be a tragic end-of-life diagnosis.
"Nevada is emerging as one of the leading states in terms of addressing the needs of people living with dementia in communities," Dr. Peter Reed, Director of the Sanford Center for Aging on the University of Nevada, Reno campus. "There is a vast network of care and support services around the country and even here in our community but one of the challenges is that people are not aware of those services," said Dr. Reed.
Northern Nevada offers many programs to care for dementia patients but often families don't utilize them early enough. There are support groups, respite care, adult daycares and medicines that can slow the progression of Alzheimer's.
Physical exercise can also lessen the decline in mental function and improve thinking. Dick used to hit the gym several times a week. He loved the social benefits. Exercise can lower the risk of developing Alzheimer's Disease.
"We want to help people remain in their homes to maintain their independence and to live well with Alzheimer's disease. It doesn't have to be a tragic end of life diagnosis," said Niki Rubarth, the Regional Director of the Alzheimer's Association of Northern California and Northern Nevada.
"He's the happiest when he's here. So, even if he's done exercising, done showering he just wants to sit in the lobby and just kind of hang out and talk to people," said Kellie Flynn who works at Saint Mary's Fitness Center.
At Arbors Memory Care in Sparks, they offer Moments of Memory. It's an art program that gives people with dementia an outlet to work on their cognitive skills.
"Call it a right brain-left brain activity; first, you have to be thinking about the image you want to create. And then, the other side of your brain is thinking, 'How am I going to do it? What am I going to do it with?' So, you're not thinking about being depressed or isolated or your in pain," said Lynette Schweigert, Director of Moments of Memory.
Daybreak is Washoe County's licensed adult daycare program, a medically-based program supported by full-time nurses. It's licensed for 33 clients and is often full. It keeps its clients working on their cognitive skills and, at the same time, gives families respite care for the day.
"We're trying to, at a minimum, maintain their level and hopefully improve their cognitive capacity level of function," said Patrick Brumley, Supervisor of Daybreak.
He says caregivers burn out, and then find Daybreak -- rather than using those services to hold off burnout.
Shellie Morcom spent a lot of time at Daybreak. Her husband Mike would drop her off to give himself a short break from intense caretaking and it also gave his wife of 47 years some social engagement.
Shellie doesn't talk much these days. At age 57, a doctor told her she had Frontotemporal Dementia. They suspect she got it in her 40s. The former nurse practitioner, whose life was wrapped up in taking care of others, now relies on others to take care of her.
"We have fun together, we sing together. She doesn't communicate verbally, but she does with her smile and definitely through her eyes," said Mike Morcom. "It breaks my heart, I cry at night. It's hard to see what's happening to her."
Shellie no longer talks, but something interesting happens when Mike sings to her. She will mouth the words and even sing a few of the words.
"I miss her voice," he said.
Mike knows he is slowly losing his wife to dementia. He just moved her into a assisted-living home so she could get better care and he can sleep easier.
"I don't feel like I'm as stressed as I had been. It's less work for me, but the house is so lonely. It's hard. Nights are always the worst," he said.
Dr. Steven L. Phillips, a geriatric doctor in Reno, said we should all be focused on the things we can do to lessen our risk of getting dementia.
"Certain diseases predispose one to Alzheimer's disease. Diabetes, high blood pressure, chronic lung disease, congestive heart failure, previous strokes, obesity. And the reason is -- we hear a lot that -- [that] so many things in medicine and problems medically are related to inflammation. So, in a high inflammatory state such as diabetes (that is not well controlled), lung disease (that is not well controlled), [or] blood pressure (that's not well controlled), our body releases certain chemicals and those chemicals have shown to affect the brain in a bad way," he said.
The future of Alzheimer's in Nevada
Nevada Senator Catherine Cortez-Masto, whose grandmother died of Alzheimer's, sits on the Senate Committee on Aging. She said, as a country, we need to fight for better brain health. She put together a listening group with leaders from the healthcare community in Northern Nevada. The focus was to close the gaps on Alzheimer's care.
"It includes better educational outreach, making sure everyone in the community is focused on what Alzheimer's is, that it is something that is not curable, but we can sure do a better job helping people live with it and their families live with it," Cortez-Masto said.
The Alzheimer's Association of Northern Nevada and Northern California offers a list of help, support, services and research on its website. They also offer a 27 hour helpline: 1-800-272-3900.