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This Vermont couple says there's grief, anger and love in living with Alzheimer's

An older couple hugs one another and stands for a portrait in front of their fireplace. They both have gentle smiles on their faces.
Nina Keck
/
Vermont Public
Luba Routsong and her husband Tom Murray embrace in their Colchester condominium. Luba says she began to see signs of Alzheimer's disease several years before Tom was diagnosed. She says as a caregiver, acceptance, self-advocacy and caring friends and neighbors have helped.

The number of Vermonters 65 and older who have Alzheimer's disease is expected to increase more than 30% — to 17,000 — by 2025.

It’s a fatal condition that slowly destroys memory and thinking.

Tom Murray, 75, was diagnosed with it more than a year and a half ago, and his wife Luba Routsong has become his caregiver.

Routsong says she first noticed something wrong with Tom four years ago. They were on vacation, and he just wasn't acting like himself. But she admits she pushed her fears aside and tried to ignore them.

“For two years, I didn’t accept this… not my husband… and I fought it… a lot of anger… cry, yell, scream, all those… I was terrible," Routsong says.

A photo on a mantel of two people hugging one another in formal clothing in front of a body of water. Sunlight sparkles on the water's surface.
Elodie Reed
/
Vermont Public
Luba Routsong and Tom Murray first met in the late 1960s as college students in West Virginia. They dated, but went their separate ways for 45 years before meeting again and marrying in 2013.

When a diagnosis of Alzheimer’s finally came, she says it was both devastating and helpful.

"Because we know what we're dealing with," Routsong says. "And we've figured out ways to cope." 

But it's taken years to get to this point, and initially, she says finding information, support and resources was frustrating and difficult.

There’s no cure for Alzheimer’s, and medications that slow the disease’s progression didn’t work for Tom. But their doctor said there were other things they could do that might help.  

Eat well, exercise, keep the brain active with things like crossword puzzles and socialize.

A photo showing weights on the floor next to a walker.
Elodie Reed
/
Vermont Public
To help slow the progression of Alzheimer's, Tom uses these weights to stay active, and has gone from needing a walker to getting around without it.

“Go out, don’t hide,” Luba says. "We're fortunate to have a large circle of friends who we have tried to stay connected to."

Two days a week, the couple also takes a 60-minute healthy aging fitness class.

Tom says it helps with his balance. Luba likes that it gets them out of the house, moving and around other people.

A photo of older people standing in a gym space holding small weights. Large colorful balls are spread throughout the people, too.
Nina Keck
/
Vermont Public
Tom and Luba attend a fitness class twice a week. It's one of a number of activities they plan throughout the week to stay social and active.

Afterwards, they stop at Tom’s favorite bakery. It’s another chance to socialize in a place he’s comfortable.

Luba orders a mocha latte for herself and a regular coffee and a sweet roll for Tom, who makes his way to a small table.

“I like to have a cuppa coffee in the morning," he explains with a smile. "You know, some things never change.”

But so many other things have changed for this couple.

Now, Luba does the driving. She orders the coffee, handles the money and oversees all the details of daily life, because Tom can’t anymore.

A photo of two people walking on a snowy path toward a garage. One person is holding a chess board.
Elodie Reed
/
Vermont Public
Tom and Luba walk out to their car on a recent Monday to head to a weekly chess session at the Worthen Library in South Hero.

Back at their condo in Colchester, their dog Buddy runs to the door and barks a greeting.

Tom and Luba have one of those love stories. They met in college in West Virginia where Tom played football. They dated, but then went their separate ways for 45 years before meeting again and marrying in 2013.

There’s a wedding photo of them over their fireplace. They’re smiling and leaning into one another on a beach.

Ten years later, they're leaning into each other even more.

A photo of two people on a couch with a small white dog with a black spot over its eye. They're both petting the dog.
Elodie Reed
/
Vermont Public
Luba and Tom say their dog Buddy is a great comfort to both of them as they navigate Tom's dementia.

When asked how well he understands how his illness is affecting him, Tom pauses a long time before responding.

You know, I feel like there's two answers to that. There's the... there's the definition of Alzheimer's and what it does to your brain," he says. "Alzheimer's will kill you, you know, it's a death sentence.” 

But then he nods and smiles adding, “You know, the other the way I look at it is, I don't feel so bad now… you know?”

More from Vermont Public: In the Upper Valley, fighting back against Parkinson's with a one-two punch

He says several times that he's not suffering, but admits he does get depressed and anxious, and there’s anger.

“Yeah, I get angry particularly when I can't drive," Tom says. "But I get angry that I do have Alzheimer's which has limitations to it. So yes, anger is part of that. And… I forgot what my train was. Where was I?”

Elodie Reed
/
Vermont Public
Tom and Luba use white boards to help Tom remember daily tasks like wearing his hearing aids and drinking water. The couple says blueberry-flavored gummies infused with cannabidiol (CBD) help Tom relax and reduce anxiety.

Tom writes lists, takes notes and he and Luba use white boards. One lists his daily activities, the other daily reminders like: put on hearing aids, drink water and take vitamins.

Luba says it helps them avoid arguments.

In a different life, Tom says he used to play chess. He’s begun to play again to help keep his mind sharp.

“And there's two, three guys that we might, you know, get together with on a regular basis and play," he explains. "One of them's 8 years old, and other’s 11 years old. I won one game with the 8-year-old and lost one. And the 11-year-old," he says with a laugh, "beat me in five moves."

A photo of a woman in the background, watching serenely as an older man and a child play chess in the foreground.
Elodie Reed
/
Vermont Public
Luba watches as Tom plays chess against Chris Lane at the Worthen Library in South Hero on Jan. 30. Their game ended in a stalemate and a friendly handshake.

While Tom can laugh at himself, he worries about what comes next for him and for Luba. She’s 72, and the couple don’t have any children or family.

“For me, certain words come into my mind," Luba says. "And the one that really comes hits me is, it's unrelenting grief. It's just, the grief doesn't stop. And you have to figure out how are you either going to deal with this? How are you going to deny this? How are you going to cope with this?”

Luba says support groups for her and a Zoom peer group for Tom have helped.

A photo of a man on an iPad in a bedroom with light coming through the blinds.
Elodie Reed
/
Vermont Public
Tom uses his iPad to connect with a peer support group for people with Alzheimer's disease. He says it's been helpful to connect with others and know he's not alone.

Remembering gratitude is also important, she says, focusing on what she and Tom have, like good friends and caring neighbors.

They rent out a spare bedroom to help with finances, and Luba says she’s learned not to be afraid to ask for help.

“When we’re open with people, when we tell people that my husband has Alzheimer's, it's not because we want sympathy or pity. We need support and help," she says emphatically. "And every time we've done that, we have gotten kindness back in just huge amounts. Huge amounts.”

A photo of two people leaning into one another, close-up.
Nina Keck
/
Vermont Public
"Through this journey I've learned an awful lot," Luba says. "I remember walking up to an older man we saw regularly in a favorite cafe. I said, 'Excuse me sir, you look like a nice man, would you have a cup of coffee with my husband once a week?' And he looked at me and said, 'Sure!' I was shocked, and for the next six months they met every week. That's the kindness of strangers!"

Navigating Tom’s dementia has been so much about loss, Luba says. But she thinks it’s also made them realize just how deep their love for one another is.

“I think that in the weirdest way, we've gotten closer,” Luba says, smiling.

Tom nods his head and smiles at her across the table: "Yeah, well said, well stated."

But then he pauses and looks down at his hands, "I don't know what I was gonna say next. I’ve forgotten.”

The couple shrug and laugh it off.

Have questions, comments or tips? Send us a message or get in touch with reporter Nina Keck:

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One in five Vermonters is considered elderly. But what does being elderly even mean — and what do Vermonters need to know as they age? I’m looking into how aging in Vermont impacts living essentials such as jobs, health care and housing. And also how aging impacts the stuff of life: marriage, loss, dating and sex.
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