Roger Strom didn’t think much about his wife’s forgetfulness – the times she forgot morning conversations about evening plans, the errands she didn’t remember during the day. But in the late 1990s and early 2000s, Jane had her hands full raising three young boys in Los Altos. Of course, it would be easy to forget a dinner party or to pick up the dry cleaning.
And then there were times Jane would struggle to find words and speak clearly. But the subtle changes in her behavior were so minute, Strom just got used to them.
“I didn’t question her short-term memory issues because she was perfectly healthy and young,” he said. “She was vitally involved in our life together making a home for our family. She was an awesome full-time mom.”
In 2006, Jane became trapped inside a locked stairwell while visiting the grand opening of Los Altos’ Whole Foods Market – but, not really.
“Eventually, a store employee helped her, but the stairwell wasn’t actually locked,” Strom said.
The following year, he noticed that Jane was increasingly withdrawn in social situations. A doctor’s visit and subsequent memory test elicited a diagnosis of depression with perhaps sleep apnea. A summer 2008 visit to Jane’s family in Wisconsin triggered worry among her sisters.
“‘What is going on with her?’” Strom said they asked. “They were intensely concerned. They strongly disbelieved the depression diagnosis.”
When Jane was more than an hour late after a designated time to meet him outside a shop in Boston in September, Strom became truly alarmed.
“My Jane came walking around the corner with the most scared look on her face. She had lost track of the time and (had) become disoriented,” he said. “I knew something was very wrong.”
Radar and a clock
Before the couple visited a different doctor in January 2009, Strom read a Wall Street Journal article in November describing a man in his 40s afflicted with Alzheimer’s disease.
“The symptoms described sounded eerily like those Jane had,” he said. “For the first time ever, Alzheimer’s disease was now on our radar screen.”
The suspicion didn’t prepare Strom for the doctor’s initial diagnosis when Jane couldn’t draw a clock representing 4 o’clock, a circular face, the numbers 1 through 12 or a short and long hand. Jane stopped trying after a few minutes.
“This test (is) an indication of Alzheimer’s disease, so I knew where the doctor was going,” he said.
It was the subsequent testing – MRI, blood tests, a memory test a first-grader could pass – that confirmed Jane, then 55, had younger-onset Alzheimer’s disease at the mild-to-moderate stage.
“For someone under the age of 60, (Alzheimer’s) is rare,” Strom said. “It’s just a bad-luck deal. It was just bad news, but it was great to know what was going on and focus on what we needed to do.”
And though other doctors had misdiagnosed the problem in 2008, it would not have changed the outcome.
“It’s important to know, for sure,” Strom said. “But it doesn’t really matter, because nothing could be done about it. They say when you’re diagnosed, you’ve had it five to 10 years.”
Alzheimer’s disease is a progressive brain disorder that destroys neuron cells that send signals to form the basis for memories, thoughts and feelings. Approximately 5.4 million Americans suffer from the disease – 5.2 million are age 65 and older. While researchers don’t know the exact cause of Alzheimer’s, they have identified genes that predispose people to the disease, as well as other factors such as family history, level of education, ethnicity, head trauma, brain injury and cardiovascular disease.
“Most experts agree that Alz-heimer’s, like other common chronic diseases, probably develops as a result of multiple factors rather than a single cause,” according to the Alzheimer’s Association 2011 Facts and Figures publication. There is no cure.
Age increases the risk of developing the disease – 43 percent of Alzheimer’s patients are over 85, reports the association.
Interestingly, German psychologist and neuropathologist Alois Alzheimer discovered the affliction in 1906 in a 51-year-old woman presenting with severe memory, language and behavior problems. Her autopsy revealed an obviously shrunken brain and abnormalities around the cells.
“It was not a common diagnosis, because we didn’t live that long in 1906,” said Bonnie Bollwinkel, an education specialist with the Alzheimer’s Association in Mountain View. “But the numbers are rising and the urgency for a cure and awareness among our population is absolutely critical.”
In 2008, more than 27,500 people in Santa Clara County had Alzheimer’s disease. By 2030, that number is expected to increase 112 percent, to nearly 59,000.
“It gives you a chance to see that it’s exponential,” Bollwinkel said.
What was once a rare disease is on the brink of a pandemic.
Caring and connecting
As a licensed clinical social worker, Bollwinkel conducts education seminars for caregivers in nursing and assisted-living homes, nurses working for in-home-care agencies and the community in general.
“It has become my personal passion to make the world a better place for people with Alzheimer’s,” the Los Altos resident said.
Bollwinkel said she empowers caregivers with the tools needed to manage a patient’s care – aids unavailable to her mother when her father was diagnosed with Alzheimer’s years ago – and plan for the future.
“He lived 16 years with the disease,” she said. “This lasts a very long time and costs a lot of money. Eventually, a patient needs full-time caregiving.”
Presently, Strom and sons Zack and AJ – Erik attends college in Boston – care for Jane in the home they’ve made together for more than 20 years. Now a senior at Los Altos High School, 17-year-old Zack cooks family dinners, shops for groceries and drives his mom to favorite and familiar places. AJ, 19, helps out at home and attends Foothill College.
“They’re all good cooks – and they always treat her with complete dignity and respect,” Strom said. “They never get impatient with her.”
Self-employed with local work, Strom pops in at home throughout the day to help with Jane and maintain a familiar routine for her.
“Routine is important – it’s critical,” he said. “Predictability is important.”
But the only thing predictable about Alzheimer’s is that it gets worse. Of the disease’s seven stages outlined at alz.org, Strom believes Jane is at Stage 4: forgetting recent events, challenged mathematically, socially withdrawn and unable to perform complex tasks.
It’s a challenge for caregivers to understand what Alzheimer’s patients are able to do. After Jane got lost while driving and left the car behind to walk home from grocery shopping, Strom and her sons had to hide the keys from her. She continues her daily mile-long walks downtown.
“I am concerned this may not be safe in the near future,” he said. “She has lost interest in calling up friends.”
Bollwinkel said Alzheimer’s progression renders patients disconnected.
“It’s a disease where people lose their connection to the world and to those around them,” she said. “Our job as caregivers is to keep them as connected as possible.”
It’s one of the things she does: teach caregivers to speak slowly and learn how to communicate.
“You have to step into their world,” Bollwinkel said. “It’s a really important skill to learn.”
In a moment of lucidity, Jane looks around the table at Strom and Zack – AJ is in the other room watching TV.
“I know my family,” Jane murmured. “I know them.”
The costs of caring
At first, it was OK for Bollwinkel’s father to be alone during the day. Later, her mother was forced to hire a daytime caregiver. When it was no longer safe for him at night, he required round-the-clock care. But when he needed two people to lift and care for him, Bollwinkel’s mother placed him in a nursing home.
“It cost a lot of money – and they had long-term care insurance,” Bollwinkel said. “That’s scary.”
Jane now has a daytime caregiver, Hannah, and Jane’s medicine, Aricept, is now affordable.
“It’s now generic. That really brought the price down,” Strom said.
But it’s the psychological and physical tolls on caregivers that worry Bollwinkel, particularly for spouses whose partners are losing their connection.
“Redefining your relationship – finding a place where a spouse can be a partner, too – all that gets very difficult,” she said.
Jane’s diagnosis was the beginning of a new life, Strom said.
“She never suggests ideas of things we could do together,” he said. “I’m a caretaker now – whatever I can do to help her.”
Bollwinkel said the association’s mission includes educating doctors, promoting research, securing governmental policy changes that assist Alzheimer’s patients and offering care and support for those patients and their families. It’s where Strom turns when he needs support.
In addition, the Alzheimer’s Association staffs a hotline for caregivers with trained volunteers, every hour, every day.
“Caregivers need to know they can reach someone when they are in crisis,” Bollwinkel said.
Inside the Stroms’ home, painted canvases dot the walls – Jane used to paint. A sewing machine sits unused on a table