Alzheimer’s disease creeps from one generation to the next in this Colorado family
GREELEY — Her days often begin before her husband wakes, but this October morning he’s up early.
By the time she has finished walking the dog, he’s on the couch in the dimly lit living room, pulling up his socks. The news flashes on the television.
Teddy Sanchez steps back into the warmth of the house just before 5:30 a.m., and until she leaves for work, it’s a whirlwind of showering, packing lunch and checking on Tony.
Has he had coffee? Did he take his medicine?
It’s been four years since the Alzheimer’s diagnosis. And at age 73, Tony is slowly fading from the man Teddy married almost two decades ago.
Still able to drive, he can cling to his independence. But Tony has pulled back from visiting friends because he doesn’t always recall their names. He’s quiet, even at home.
Alzheimer’s has preyed on the Sanchez family, snaking its way through two, possibly three, generations. The disease, the past has taught them, will get worse with each passing year, chiseling away at memories and even the essence of who the person was. And all the while, the next generation wonders whether this will be their fate, too.
In the living room, Tony’s movements are slow. Once dressed, his thin frame hunches over the center table as he sips coffee and nibbles on a breakfast of cookies: five Biscoffs and two Milanos.
The gentle rhythms of the morning are broken when, suddenly, Tony is at Teddy’s side in the kitchen, whispering in her ear.
His head is rushing from the anxiety again.
“Take it easy,” Teddy tells him.
“Deep breaths.”
The first diagnosis
Neither remembers why Tony became angry on Christmas Eve in 2014.
But that night he was slamming doors. He was talking fast. He was swearing. He told Teddy she needed to leave — and she couldn’t take the new car or anything else with her when she went.
In the end, it was Tony who walked out the door.
“I was standing there thinking, ‘What the hell?’ ” Teddy says.
When he returned that night, he was quiet. He apologized. He didn’t know why he was mad, he told her. He was really sorry, he said.
“And I said, ‘You know what, Tony?’ ” Teddy recalls. ” ‘This is not normal. Your behavior is not what it should be and this isn’t the first time you’ve done this.’ ”
The family had an inkling of what was causing the changes in Tony years before that night.
Days later, Tony visited a doctor and was given a verbal test to examine his cognitive abilities. Such exams ask patients the day of the week and to name as many animals as they can in a minute. There are math problems to solve, words to remember.
Tony’s score: 12 out of 30, placing him within the dementia range.
It’s easy to miss the traces of Alzheimer’s in Tony. He struggles with his short-term memory, but can regale visitors with stories of his childhood. He drives himself to the gym and to the park to walk the dog.
“It’s kind of hard because it’s a mental illness, and not a physical illness,” Tony says. “There are times now when I’m talking to friends, and all of the sudden, you forget what you want to say or what you were talking about.”
With each year that passes, Alzheimer’s will continue to pull away at Tony’s memory and thinking skills, and someday could even rob him of the ability to feed himself.
Roughly 5.7 million Americans have Alzheimer’s disease — and the number is steadily growing as the U.S. population ages. The Alzheimer’s Association estimates that almost 14 million people will have the condition by 2050.
Much is still unknown about Alzheimer’s, including what exactly causes the brain disorder. Researchers say it’s a mixture of genetic, environmental and lifestyle factors that lead to the disease. Age is one of the biggest risk factors; the disease mostly affects people 65 and older. But, doctors note, it is not a normal part of growing older.
In Alzheimer’s disease, changes to the brain can begin at least a decade before symptoms appear.
The damage begins in the hippocampus, which creates memories, and spreads to other sections of the brain as neurons die. Brain tissue shrinks significantly by the disease’s final stages.
There is no cure, and treatments mostly focus on the symptoms. Some control the anger. Others soothe the anxiety.
A few treatments can slow symptoms, including memory loss, but inevitably the disease will catch up with Tony. It’s possible he will reach a point where he no longer recognizes Teddy, his children and even, maybe, himself.
So what happens when another family member starts forgetting too?
Tony was first.
His ex-wife was next.
A familiar foe
Before Teddy, Tony was married to Josie. They met at a dance club in Oakland, Calif., in the 1960s. She was visiting; he grew up there.
They married in 1967 and have four daughters and one son. (Tony has another son from a previous relationship.)
In their first years of marriage, Tony and Josie lived in Oakland and were active in the civil rights movement. They knew members of the Black Panthers, they say, and once met Cesar Chavez.
“We lived in, I’d say, the poorest section of Oakland,” Tony says. “And Oakland’s a rough town. So we packed up and moved to Greeley.”
They divorced after more than 20 years in part, Josie says, because of Tony’s drinking. “I couldn’t take it anymore,” she says.
“We got divorced because after my last, youngest daughter went to college, we didn’t know each other,” Josie says.
Despite the divorce, Josie and Tony still see each other twice a week, sometimes more, for coffee. Josie, Tony says, is still his best friend.
“She’s the mother of my children,” he says.
“That’s never going away,” she replies.
Tony married Teddy, now 59, more than 16 years ago when they lived in Wyoming.
She first saw him at a bar, but they didn’t actually meet that night. It was another chance meeting, also at a bar, that gave Teddy the opportunity to finally introduce herself.
When she spotted him, Tony was discussing books with a local councilwoman. Teddy made her move when the woman went to the bathroom. Noticing Tony’s book, she asked what he was reading.
Instead of answering, Tony pushed the book toward Teddy. It was a copy of “Rain of Gold,” a story by Victor Villasenor about his parents’ migration from Mexico to California. Here, Tony said, take it and bring it back when you finish.
As she left, book in hand, Teddy thought, “God, this guy’s really weird.” She threw the book in the trunk of her car, and didn’t open it for months.
A few more meetings, though, and Teddy fell for the man. He was smart, articulate and nurturing. They could talk for hours.
“He dressed sharp as hell,” Teddy recalls. “Oh, my God, this man is sharp as a tack.”
The changes in Tony came slowly. They came after he and Teddy moved to Greeley a few months into their marriage. After he quit drinking a quart or more of tequila a day. Years before the doctor’s diagnosis.
The disease arrived with silence and mood swings well before that fateful Christmas Eve in 2014. It further unveiled itself with confused looks, rambling conversations and forgotten names.
It wasn’t just Teddy who saw the changes.
Tony’s adult children also noticed Dad was growing impatient — more so than usual. He’s known to like a good debate, but to some of the children, it was heightened.
As the symptoms began to appear, the children sought confirmation from one another that “Yeah, we see it too.”
In some ways, Teddy knew it was coming. She had worried about it after meeting Tony’s father years before. He had Alzheimer’s disease. So had Tony’s aunt.
Alzheimer’s is a familiar foe. Over the years, there have been at least five family members who have been diagnosed with the disease. A sixth, who died during the 1970s, wasn’t diagnosed but had what doctors at the time called “forgetfulness.”
Still, the family was surprised when after Tony’s diagnosis another followed.
Missing the signs
Alzheimer’s disease, doctors say, often sneaks up on families. It’s not that a person’s slip in memory or change in behavior goes unnoticed; rather, relatives are less likely to question them at first.
Her children remember the changes they saw in Josie, 75. She wasn’t following a diabetic diet or taking her medicine properly. She was behind on her bills.
Josie was no longer cleaning her home like she used to, either. Dishes were left out in the sink. Old food sat in the fridge. The floor hadn’t been vacuumed.
They saw the changes. But their focus was on Josie’s physical health, which began declining about four years ago.
Josie, who has diabetes, ended up with Stage 4 kidney failure, and doctors said she would need dialysis three times a week.
She also has neuropathy, a type of nerve damage that can cause numbness and pain, in her right foot. Her diabetes caused poor circulation, and she developed a wound so bad she landed in a hospital.
Josie, doctors also confirmed, at some point had a stroke and would continue to have mini-strokes. She now often uses a wheelchair.
“It was like the last round of a grueling boxing match and it seemed as though we were losing,” recalls Cindee Gierhart, 45, one of Josie’s and Tony’s daughters.
They had seen Alzheimer’s disease before, but kept missing it.
A second diagnosis
It’s not unheard of for two parents to be diagnosed with Alzheimer’s disease. Denver Broncos owner Pat Bowlen and his wife, Annabel, have been diagnosed with the condition.
And former U.S. Supreme Court Justice Sandra Day O’Connor has been diagnosed with early-stage dementia, possibly Alzheimer’s disease. Her husband had Alzheimer’s before he died.
However, it’s rare for parents or partners to have a diagnosis at the same time, says Amelia Schafer, executive director of the Colorado chapter of the Alzheimer’s Association.
Whether a couple get the disease at the same time or one after another is “the luck of the draw,” says Dr. Jonathan Woodcock, clinical director of the Rocky Mountain Alzheimer’s Disease Center at CU Anschutz.
In the summer of 2016, a year after Tony, a doctor diagnosed Josie with Alzheimer’s disease. By then, Josie’s physical ailments already had landed her in a nursing home.
I’m going to become like my mother, Josie thought after she heard the diagnosis. Her mother, who had Alzheimer’s, no longer recognized others. She was already living in a world of her own.
“So I would tell my kids all the time, ‘Look at Grandma and then look at me,’ ” Josie says. “‘I’m going to be that way sometime.’ ”
When Josie moved into her current nursing home later that year, she had a familiar neighbor: her mother.
They lived just two halls down from each other, until Josie’s mother died in 2017.
There they lived, together, with Alzheimer’s disease.
Uncertain future
On that morning in October, before Tony’s anxiety attack, Teddy sits beside him on the couch, holding a blue marker and a medium-sized whiteboard.
Under the day’s date — Oct. 16, 2018 — she writes a list:
- Morning Workout
- Visit Josie
- Peanut Butter Sandwich
- lunch Soup
- 330p Feed Lucy
- Dem Headquarters
- Flowers @ King Soopers
- tonight-review election Book
Teddy began making these lists almost a year ago, but now it’s become part of their daily routine.
It’s a list to remind Tony of all he wants to do that day: get information on candidates and issues for the November election, visit his ex-wife, pick up flowers for the house.
“There’s so many issues,” Tony says of the election as Teddy finishes writing. “It’s so confusing.”
And it’s a list of what he needs to do, but can forget. Eat lunch. Feed the dog.
Tony’s already told Teddy he needs her.
Unlike Josie, who is already in a nursing home, his future is more uncertain.
Teddy, who works as an office manager at a homeless shelter for families, doesn’t know how much longer they have until Tony will need more care than she can provide. But she already knows they can’t afford a nursing home and they don’t qualify for Medicaid.
“When that times come, I’m probably going to have to quit work and stay home,” Teddy says.
Nursing home care is expensive. When Josie moved into her first nursing home, it cost roughly $12,000 a month, in part because she needs dialysis.
The move wiped out most of Josie’s retirement savings, including the funds from selling her home, within a few months. What’s left goes toward the nursing home she’s at now, but she’s also on Medicaid to help cover those costs. Once the nursing home expenses are paid, Josie has only about $100 left a month.
Teddy, knowing what the future holds, is trying to save, but it’s hard. The water heater needed to be replaced. The floor and car needed fixing.
Sometimes, Teddy thinks, she doesn’t want to do this anymore. She can’t do this anymore.
“And then I think to myself, ‘How selfish are you Teddy?’ ” she says. “This isn’t about you. You married this man for better or worse and this is where the path is going.”
So she tries to draw Tony out. She makes sure to ask about his day.
Once they read a book together. Tony would read a page and she’d read the next. He lost interest before they finished. He fumbled over the words. He kept losing his place.
Fridays are date nights. In the spring and summer, they will grab dinner at Subway and go home to eat before heading downtown to listen to music. When the weather turns colder, they watch movies together.
But when they get back home, when it’s just the two of them, Tony goes back to watching TV or playing games on the computer. He becomes quiet again.
They used to talk for hours.
He’s no longer the man Teddy married.
Losing him
Days-old snow still clings to the grass when Teddy leaves the house and sets off on a path toward a street lit by lamps.
Lucy, the 3-year-old black Lab mix trotting at her side, will bark if someone approaches, but Teddy finds the lights comforting against the darkness of the morning sky.
These days she doesn’t know when she will start crying — or what will spur the tears. But they come often. Mostly when she’s alone, hidden from the husband she cares for.
“I’m sure it has something to do with him,” Teddy says.
She doesn’t want him to know the sadness she feels.
So it is here amid the street lamps, during a stop for the dog to relieve herself, that the tears fall once more. It is here, too far from the house for anyone to see, that Teddy recalls she’s losing him.
She cries because she grieves.
No one has died.
She’s mourning a living man.
Updated 8:55 a.m. Jan. 28, 2019 This story has been updated to correct the hours of operation of the Alzheimer’s Foundation of America’s helpline.
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