As Walk to End Alzheimer's nears, a spouse shares her husband's journey with the disease

About halfway through his three-year battle with dementia, Tony Martin, an ordained deacon in the Catholic Church, told his wife Loree that he had had a visitor that day while she was at work. Loree asked him who visited and Tony replied, “Jesus came, but I told him I couldn’t leave you.”

Less than a year passed before Tony ultimately lost his battle on June 13, 2017.

In the summer of 2014, Tony began complaining that he was forgetting names and phone numbers.

“He knew something was wrong,” Loree said.

After two days of cognitive testing in Lewiston, Idaho, with one of only four neuropsychologists who practiced in the Northwest at the time, Tony was diagnosed with a mild cognitive delay, at age 64.

The Martins returned home to Bigfork, met with a neurologist and a CT scan was ordered. Tony’s showed he had frontal lobe dementia, which typically progresses rapidly and can cause extreme changes in behavior and personality.

Loree became Tony’s caregiver, while also managing their business, Flathead Insurance, in which they were partners.

“I never thought about it,” Loree said regarding the responsibility of running the business while caring for Tony. “It was just what I was going to do — take care of him.”

She took firm control of things, insisting that he didn’t drive, which upset him.

“But Tony was aware of changes happening to him,” she said. He agreed to have someone stay with him while Loree was at work.

“A year later Tony would obsessively reorganize every key in the house,” Loree said, a sign he was developing repetitive, compulsive behavior.

DEMENTIA, OF which ​​Alzheimer’s is the most common form, is a degenerative brain disease that causes a slow decline in memory, thinking and the ability to reason. According to the Alzheimer’s Association, changes in the brain may begin 20 years or more before symptoms. Alzheimer’s and other types of dementia disrupt how electrical charges travel and the activity of neurotransmitters. Eventually it leads to nerve cell death and tissue loss throughout the brain.

The Alzheimer’s Association’s website states that, over time, from as little as four years after diagnosis to as long as 20 years, patients will begin to lose the ability to remember names, the right word, perform simple tasks and misplace things. Next they will forget parts of their own personal history, become increasingly confused, begin to withdraw socially and mentally, become paranoid or develop compulsive, repetitive behavior. In the final stages of their illness, the website states, they may not recognize family members, they may have difficulty eating or swallowing, controlling movement, and lose the ability to walk or communicate at all.

In Tony’s case, he was able to continue serving as a deacon for St. John Paul Catholic Church in its jail and hospital ministries until 2015.

“He was able to get up every morning, shower and get dressed for the day,” Loree said. “With me he was very calm and cooperative. But, as this disease progressed, and in the last nine months of his life, it became obvious that he wouldn’t cooperate with other people — only me. He would get confused and frustrated.”

One day when he was still living at home with the help of in-home health care, Loree got a call from the caregiver who told her Tony was sitting outside in the rain and refused to come in.

“I went home and there he was. I asked him, ‘Tony, why are you sitting out here in the rain?’ and he answered, ‘Because I can.’”

By March 2017 it was necessary to put him in a local memory-care facility.

“The caregivers were having a hard time with him,” Loree said. “He could be so docile and cooperative and then all of a sudden go off. He was in a strange place and his perception of the antipsychotic drugs he was given was that they were ‘evil.’”

Later that month, Loree said, Tony was sent to St. Peter’s Health Behavioral Unit in Helena for three weeks to try to balance his medications to keep him calm. He was prescribed Haldol, Loree said, which in his case caused tremors and lack of muscle control. When he returned to the memory care facility he was in a wheelchair.

“People need to be aware of how debilitating this disease is,” Loree said.

LOREE WENT every day to see him and would make the sign of the cross on his forehead, telling him to “keep his eyes on Jesus and when he takes your hand, go with him.”

One day, after he was put on hospice, the hospice nurse came in.

“She was a wonderful woman,” Loree said. “I told her Tony was being crabby today, and she asked Tony if he was feeling crabby. He nodded, so he was still understanding things. Then he picked up his chair and slammed his body and the chair into the wall.”

Early on, after his initial diagnosis, Tony would talk about the things he wanted to do while they still could.

Maybe he was more accepting than I was,” Loree said. “I kept fighting to find someone in the medical field who could slow down the disease’s progress.

“I was not aware of how quickly the turn would be. I thought we’d have four or five years.”

For Loree the hardest part about it all was watching the devastation the disease had on her husband.

“He was a very bright man. He used to play chess online. He was an avid fly fisherman. He could no longer tie flies. It was hard seeing all the things he enjoyed that he could no longer do, that were taken away.”

During the years of taking care of her husband throughout his illness, Loree didn’t share much about her experience with other people, except for one friend whom Tony would occasionally call and who would come right over if he needed her.

“The general public is uncomfortable with dementia, unless they’ve watched it beforehand,” she said. “People don’t understand the disease.”

That’s why she and her team will be walking in this Saturday’s Walk to End Alzheimer’s in Kalispell.

“The walk is very special because we need to bring attention to all who suffer from dementia,” Loree said. “It’s no different than any other disease. Life is so drastically changed by it and there is no cure. We have to fight for one.”

​​Community editor Carol Marino may be reached at 406-758-4440 or community@dailyinterlake.com.

Walk to End Alzheimers

Held annually in more than 600 communities nationwide, the Alzheimer's Association Walk to End Alzheimer's is the world's largest fundraiser for Alzheimer's care, support and research.

Join the Kalispell walk this Saturday, Oct. 2, in the Gateway Community Center’s parking lot, 1203 U.S. 2 W. Entertainment begins at 9 a.m. Opening ceremonies are at 10:30 a.m.

The Kalispell Walk will implement safety protocols including physical distancing, contactless registration and hand sanitizing stations. Per CDC guidelines around outdoor settings, Walk attendees should either be vaccinated against Covid-19 or wear a mask when in an overcrowded area. While there is no fee to register, participants are encouraged to raise funds that allow the Alzheimer’s Association to provide 24/7 care and support and advance research toward methods of prevention, treatment and, ultimately, a cure. Sign up online at act.alz.org; or contact Kellie Danielson at Loyal Care In-Home Assistance at 406-752-0146.

LEARN MORE

​​According to the Alzheimer’s Association, 50% of primary care physicians believe the medical profession isn’t prepared for the growing number of people with Alzheimer’s or other dementias. In the United States, deaths from Alzheimer’s disease and dementia have increased 16% during the Covid-19 pandemic.

Recent research in Alzheimer’s science has found new strategies for earlier diagnosis, including brain imaging, blood and urine tests, biomarkers and genetic risk profiling.

While there are many common symptoms of age-related aging such as forgetfulness, misplacing things or even losing interest in social or family obligations, be familiar with the 10 warning signs of Alzheimer’s disease and dementia. Early detection is essential. Get checked by a doctor. Learn more at https://www.alz.org/alzheimers-dementia/10_signs.

Go to www.alz.org for a list of resources, Alzheimer’s/dementia workshops and online tools.

Support group

A Dementia and Alzheimer’s Support Group sponsored by Immanuel Lutheran Communities meets from 3 to 4:30 p.m. the third Monday of every month at Buffalo Hill Terrace, 40 Claremont St., in Kalispell. For further information, call Hannah Brown at 406-858-0653.