Love helps Sacramento family fighting Alzheimer's go on
09/08/2013 12:00 AM
09/08/2013 6:39 AM
First in an occasional series on a family grappling with Alzheimer's
In the comfortable chaos of a weekday morning in the Schooley household, 12-year-old Nate finished brushing his teeth while his 7-year-old sister, Hannah, cartwheeled across the living room floor in a spangled red skirt.
From the kitchen came sounds of their parents clearing the breakfast dishes.
"Nate, you hardly ate," Claire Schooley, 45, called to her son.
"I'm not hungry," he replied.
Carrying a cup of coffee, David Schooley, 57, collected bags of school supplies that Claire and Nate had bought at Walmart the night before, items the kids' teachers had requested.
And then it was time for the family's morning commute, which begins shortly after 7:30 a.m. with a line of vehicles snaking around Arcade Fundamental Middle School in suburban Sacramento, where Nate is a seventh-grade honors student, and continues a few blocks over to Mission Avenue Open Elementary, where Hannah is in second grade.
Claire drove the Schooleys' battered Ford van, fretting that she'd taken a slow route.
"We have time," said David.
It was a normal morning, the start to the kind of ordinary day shared by millions of suburban middle-age couples who dote on their children and work hard to give them a good life.
The Schooleys aren't like them, not anymore.
An unpretentious couple together 18 years, they try to hold onto the day-to-day routine of their family's life, because the future is too upsetting to imagine.
Late in 2012, after David experienced several years of unexplained behavioral changes and Claire insisted on a neurological assessment, David was diagnosed with the early onset form of Alzheimer's, the degenerative brain disease that typically strikes in older age.
Alzheimer's is incurable, and it's fatal.
Doctors can't predict the exact path of David Schooley's illness, but over time, the disease will riddle his brain tissue, robbing him of his memories, his ability to recognize his wife and kids, his sense of self and, eventually, his life.
"I plan for the kids' future, but for us, I've stopped," said Claire. "I don't want to plan and be disappointed. I'm preparing for him to be sick, although I'm really not prepared. My future will be taking care of him."
There's so much the family can't yet know.
How quickly will David's illness progress? Will the kids adapt as they watch him change from the involved dad taking them to school to the father who can't remember their names? How will being caregivers shape their lives? How many good years does he have left? What kind of care will he need later, as he deteriorates? How will they afford it all?
These are the worries that buzz through their personal lives, intruding on the daily routine that Claire and David cherish so much.
"It's not just his memory – it's so much more," Claire said. "For the first six months after his diagnosis, I'd stay up late looking up things online and crying. We're totally not prepared for this."
"No one is," said her husband.
Planning a life
At the beginning, in the mid-1990s, everything was different.
She was a network engineer in her 20s, one of seven kids raised in a sprawling Italian Irish family from San Francisco. He was older, a veteran fiber-optic cable installer from Michigan and the divorced father of two kids, and he was working – temporarily, he thought – in Sacramento.
They met when they both joined co-workers for drinks after work at a bar on the Sacramento River.
"My sister gave him my phone number," said Claire. "He kept calling every day. Finally, after about two weeks, I said, 'OK, I'll go out with you.'
"I used to get teased at work. Once he told me he loved me, he'd call me every morning to say he loved me. Everybody sitting around me in the cubes would say, 'Awww, is he calling again?' "
But David insisted he didn't want to marry again or have more children. And Claire wanted a family. Finally, she called one of David's sisters to ask for advice.
"She said, 'He won't leave you,' " Claire said.
"I'm not sure why," David said. "I guess because I loved her."
"Do you still?" Claire asked, teasing.
"Yes, dear," David replied.
Full of hope for the coming decades, planning for a life together, the Schooleys married at her parents' Sonoma County church, Our Lady of Guadalupe Church in Windsor, on Aug. 12, 2000.
Along came their son, Nathaniel Victor James, a considerate, quiet boy who plays baseball and video games with equal passion, and their little girl, Hannah Rose Helen, an energetic miniature of her outgoing mother.
They enjoyed their family life. But there were challenges, which started with the economy and what seemed to be David's depression over having trouble finding work.
After 25 years in the telecommunications industry, he was laid off almost a decade ago. He retrained in heating and air conditioning mechanics, only to be laid off again during the recession, just as the Schooleys were buying their ranch house in a cozy post-war Sacramento neighborhood of big lawns and old trees.
Even before the diagnosis, these were tough years for the Schooleys. They were scrambling to keep up with two growing kids – with school and Nate's competitive tournament-level baseball games and Hannah's gymnastics lessons. And they were stressed financially, trying like so many others to make ends meet during hard economic times.
For a while, they were paying two mortgages on Claire's salary. The Schooleys burned through their savings before they finally managed to sell their old house in Natomas, leaving them with little financial cushion.
And David was struggling in a different way. Though he had used computers throughout his career, he couldn't find work, because he couldn't figure out how to apply online.
"I'd write down the steps for him, and he could read them but not follow them," said Claire. "He'd just been saving the jobs online."
"I thought I applied," said David.
"I was stuck in the overwhelmingness of everything," said Claire. "I never stopped to think, 'Why would he all of a sudden turn into this person who wouldn't look for work?' It wasn't in his character."
The family doctor diagnosed him with depression. Medication didn't help. Increasingly, David seemed to be losing touch with how to follow basic tasks – which, as it turns out, is a textbook example of how Alzheimer's first occurs in midlife, not with loss of memory but with loss of executive function.
Last November, a few days before Thanksgiving, doctors at the UC Davis Alzheimer's Disease Center analyzed the positron emission tomography scan that Claire had insisted on for her husband: He had Alzheimer's disease.
No good answers
In just a few years' time, David Schooley has gone from breadwinner, a level-headed man who could fix anything, to a stay-at-home dad on Social Security disability payments who can't work any more.
He is the sixth of 15 children who grew up in the tiny mining town of Crooksville, Ohio, and he's a twin. His dad, who spent his life working in an Owens Corning fiberglass factory, died more than three decades ago.
One of his older brothers, he said, has some forgetfulness. But if there were a genetic link to Alzheimer's disease, "You'd think it would be up and down the family tree," said Owen Carmichael, a UC Davis Medical School assistant professor of neuroscience.
Sometimes, there are no good answers.
Always quiet and easygoing, David has gradually become quieter – more at a loss for words, Claire thinks – but now he gets frustrated easily, too. He tires more quickly. He snaps at the kids. Worse, she said, he sometimes doesn't respond at all.
"People with Alzheimer's sometimes won't have big reactions any more," she said. "(Before the diagnosis), I'd say things to get a reaction and get nothing."
She stood next to David's chair in the Schooleys' wood-paneled family room, with its oversized sectional seating and the kids' drawings and photos on nearby shelves.
"I was so mad at you at times," she said. "I'm sorry. I didn't know you were sick."
She put her arm around him, and he hugged her, sneaking in a little pat on her butt. And they smiled at each other.
Claire was always the chatty one, a friendly woman whose ease with words helps obscure a deeper well of reserve and protectiveness. And she has always been more detail-oriented, the one who planned and organized and kept the family's life running smoothly.
"It's how our dynamic works," she said. "I don't know that I could do it without knowing he was there. My mother was that way. When my father passed away – they were married 50 years – she said, 'I can't do this without him.'
"It allows you to be a stronger person knowing there's someone there."
Now Claire Schooley has a lot more on her shoulders. With the gradual progression of David's illness, she's taken on more responsibility – for the family, but also for David.
Across the country, 45 million people care for older adults. Typically, those caregivers are elderly spouses, or they're adult children who find themselves at midlife caring for their aging and infirm parents.
Claire is a caregiving spouse in her 40s whose husband may not live to see old age. And she's at risk, like all caregivers, of neglecting her own physical and emotional health.
It helps that her company, a national telecommunications firm, allows employees the flexibility of telecommuting from home part of the time. She still goes to the office, too. But when the house is quiet after the Schooleys take the kids to school, she can spend hours working online.
And it helps her to remember that many families struggle to care for ailing loved ones.
"A lot of people have it worse," she said. "I'm thankful for what we have."
'The new norm'
Outsiders wouldn't notice, but Claire sees that David has declined in the past six months.
"We've adapted," she said. "It became the new norm. He tries to keep up. He'll do things because I asked him and the kids want him to. That's the man I married, someone who'll do anything for his kids."
They waited until after the holidays to tell Nate about his father's illness. He knew something was wrong, Claire said. He could tell.
Now Nate wonders when his dad won't remember who he is. He worries about his parents and his sister. He's thoughtful, the kind of 12-year-old whom teachers compliment for his maturity.
"My son is my rock," Claire said. "But I see him worrying."
Within the past month or two, the Schooleys also have told Hannah that her dad has Alzheimer's. She had heard her parents talking – and kids can read the mood of the household.
So they told her his illness can make him tired and grumpy, easily frustrated. They told her he might have problems in the future, but they didn't get into details.
At Hannah's age, after all, what does it mean to say that in 10 years her dad may not be able to care for himself?
"My son knows more," said Claire. "But I explain that there are different paths. All we can do is keep praying and hoping. If they worry about what will happen in the future, it will take away from what we're doing today."
Several weeks ago – after he cleaned the above-ground swimming pool in their big backyard – David began having pain in his neck and right shoulder. A string of medical visits followed, accompanied by an assortment of scans and tests to determine the source of the pain.
An ordinary middle-age complaint, a sore shoulder becomes a lot more complicated with Alzheimer's in the picture.
Claire went online to investigate the pain medication he'd been prescribed, concerned that it might interact with the generic form of Aricept he takes to forestall the symptoms of Alzheimer's. The generic Aricept gives him terrible nightmares, so what might another drug do?
"Alzheimer's is a brain thing," she said. "A lot of medications make you foggy. I worry that if he gets sick, he won't recover in the same way."
David's family practice doctor later reassured her that the pain medication wouldn't have any short-term side effects. That drug didn't do much good anyway, Claire said, so the doctor pulled him off of it.
But one worry follows another.
Like a lot of loved ones of Alzheimer's patients, Claire has heard that as the illness progresses, the changes can include a radical character shift. What if David, so easygoing, becomes violent, erratic and angry?
Carmichael, the UC Davis neuroscientist, said there's no way to predict the kind of personality changes Alzheimer's patients experience.
"The gamut of personality changes is all over the map," he said.
As patients and families navigate these changes, they are largely on their own. After diagnosis, neurologists usually don't monitor Alzheimer's patients.
"There's no point, really," Carmichael said. "This is the opposite of cancer, where if Treatment A doesn't work, we'll try Treatment B.
"Hopefully when you first get diagnosis, the physician gives you a speech about preparing your financial affairs now. Other than that, if it's a year later and you notice memory and language problems, it's not actionable intelligence. There's no course of action."
'Living in their worlds'
On a hot morning just before the beginning of the school year, in an older office park tucked behind the Fulton Avenue car dealerships, two groups gathered in adjacent rooms at the Alzheimer's Aid Society of Northern California.
Eleven people with Alzheimer's disease met in one room, their caregivers in the other.
They were retirees, most of them gray-haired, some stooped with age and infirmity – and then there were the Schooleys, David and Claire and Nate, who was wearing a "Jesus Rocks" T-shirt and nibbling a cookie.
None of the others gathered had to worry about raising children or making a living: They didn't face Alzheimer's at midlife. And none of the others had to hire an attorney, as David and Claire did, to fight for the benefits guaranteed them under Social Security.
There are no local support groups for families such as the Schooleys.
Even so, these circles of Alzheimer's caregivers and patients provide warmth and advice – and also a glimpse of the family's future journey with Alzheimer's disease.
As David put it: "This is what I'm looking forward to down the road."
In the support group for people with Alzheimer's, program director Cynda Rennie asked how group members felt when their learned their diagnosis.
"I think my wife took it harder," David said.
Seated around a long table, the group was nodding. They seemed glad to be together, and happily participated when Rennie asked questions, but much of the time, they volunteered little on their own.
Next door, the caregivers were more talkative and more responsive to group leader Ruth Harris' questions. They discussed how to keep their spouses safe at home, and when and whether placement might be necessary.
For them, the burden is real. The caregivers bear the responsibility of watching their loved ones deteriorate. They have to cope, no matter what. They have to find a way.
And they need to know that they're not alone.
"We have to reach out," Harris told the group. "We can't do it by ourselves. We're living in their worlds now."
Nate sat next to his mom for half the meeting, listening to the group members, then walked next door to sit next to his dad.
'Put it in God's hands'
Uncertainty hangs over the family. In a real way, it takes a quiet bravery for Claire and David to face every day.
This is the life they have, but it is not the life they had envisioned.
"I was planning on working and supporting Claire and watching Nate grow up and play baseball," said David. "He wants to play with the Giants. And I was planning on seeing Hannah do good. I planned to see that they all make it all right.
"I had a job I liked, and I thought I'd retire. We both figured we'd work and retire."
It's what most people expect – an ordinary life with its ordinary quotient of joys and tragedies. David's illness looms over their future, but Claire clings to what she knows now: He loves her, and he loves their children. He loves the life they've made together.
Maybe nothing else matters.
"I want to know what will happen, and I don't," she said. "It drives me nuts. I've got to let it go and put it in God's hands.
"It's surprising what you can deal with when you're thrown into it."
Call The Bee's Anita Creamer, (916) 321-1136. Follow her on Twitter @AnitaCreamer.
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