This Vermont couple says there's grief, anger and love in living with Alzheimer's
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.
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.
“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.
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.
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.
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?”
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."
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.
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.”
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: