A new survey from the Working Mother Research Institute sheds light on the severity of the squeeze for working women caught between raising kids and caring for a loved one with Alzheimer’s disease.
All working moms have a short list of people whose calls they always take. For Marla Vlieger, one of those is her mother-in-law, Elaine, 79, who was recently diagnosed with early stage Alzheimer’s disease. Sometimes it’ll take five minutes on the phone to understand Elaine’s problem—the toilet overflowed, a tree branch fell in her yard, or she can’t figure out how to work her television.
“You have to be patient. Her words don’t always represent what she wants to talk about,” says the Denver mom of four. At the same time, Marla, 42, who works part-time at a nonprofit helping people get their high school GEDs, also must translate a completely different set of sometimes incomprehensible needs—those of her 2-year-old daughter, Zylana. When she looks forward over the next several years, she imagines her life in split screen: watching Zylana gain new abilities while Elaine loses them.
Welcome to the life of a Sandwich Generation Alzheimer’s caregiver, balancing raising a family with the intense demands of caring for a loved one with the degenerative disease. Marla is one of an estimated 2 million caregivers caught in these excruciating circumstances. While other leading causes of death (heart disease, stroke, prostate cancer) all dropped significantly between 2000 and 2008, Alzheimer’s deaths shot up 66 percent, according to the Alzheimer’s Association. And that’s just the beginning of a wave expected to crest over the next two decades as 79 million baby boomers age past 65.
Today, 10 million women battle the disease or care for someone who does. In fact, Alzheimer’s is of particularly urgent concern for women: We’re more likely to develop the disease ourselves, but we women below retirement age are also the most likely group to be caregivers for the illness, with one third of us also raising children.
To understand what we’re facing, the Working Mother Research Institute, with the sponsorship of GE and the help of our knowledge partner, the Alzheimer’s Association, surveyed 2,479 women nationwide, including more than 1,200 women who are currently caring for an Alzheimer’s patient or who have done so during the past five years. Our findings, detailed in the comprehensive report Women and Alzheimer’s Disease: The Caregiver’s Crisis, are sobering. Women say that even as the disease takes away their loved one, it also collects its toll on the caregiver’s life: on her kids, her health and psyche, her career.
A Pressure Cooker
Pat Pearman, 58, the director of Healthymagination Disparity Programs and U.S. partnerships for GE, spent a dozen years rising at 4 a.m. to take care of her mother, Bessie, who was diagnosed with Alzheimer’s at age 57, more than two decades ago. Each morning Pat would go to her mom’s house to get her dressed and breakfasted, then work a full day, sometimes commuting an hour each way. In the evening the whole family would gather at grandma’s house, where Pat would make dinner for everyone, oversee her sons’ homework and get Bessie ready for bed. The family would go home by 7:30 p.m.—and the next day, the whole routine would repeat.
Like Pat, many caregivers work the equivalent of a second job assisting a loved one. In our survey, working women clocked 39 hours of caregiving each week, on average.
“Think of a person with the physical abilities of an adult but with the judgment of a toddler and all the accompanying dangers—knives, power tools, cars, matches,” explains Ellen Woodward Potts, co-author of A Pocket Guide for the Alzheimer’s Caregiver, describing what it’s like to live with someone suffering from the disease.
Many caregivers can’t afford to share the burden. In general, neither Medicare nor private insurance covers long-term institutional care for Alzheimer’s. A nursing home can cost $80,000 a year, so the reality is that most people patch together care, says Bob O’Toole, president and founder of Informed Eldercare Decisions, which helps families develop care plans. In our study, 82 percent of caregivers reported keeping loved ones in their home or the patient’s home.
Plus, like all elder care, responding to Alzheimer’s is a marathon, not a sprint. Life expectancy after diagnosis averages eight years but can be much longer. Indeed, more than one third of the caregivers in our survey say they have been assisting their loved one for more than four years. Little wonder, then, that nearly half of our respondents report feeling overwhelmed, with a third saying they’re depressed.
“I think I walked around for a number of years in a fog,” recalls Pat of the period when she was responsible for her mother. (Bessie, now 85, is unresponsive in a nursing home.) But despite the grinding exhaustion, Pat says some good things came out of the experience. Sons Billy and Jim (now 25 and 30) are compassionate adults who are comfortable around people with disabilities, a perspective she feels will help them in any future caregiving roles.
Beyond emotional and physical, the costs associated with Alzheimer’s caregiving are, of course, also financial. When asked to rank what caused them the most stress, caregivers chose money worries—driven by the economy and personal finances—as two of their top three answers (lack of help was the third).
In fact, caregivers often face financial strain at a time when they’re least equipped to make career gains that would allow them to earn more. Nearly half of our survey’s care givers say they have difficulty managing the demands of work and home, while one third don’t think they’re doing their best on the job and more than a quarter say their commitment has been questioned.
Laura Suihkonen Jones, 51, has experienced such stress firsthand. Laura cares for her husband, Jay, who suffers young-onset Alzheimer’s at age 55. This winter Laura, mom of Tomer, 24, and Natalie, 9, lost her job as a training consultant for an airline industry software firm. She’d taken lots of personal days and underperformed. Still, being let go was “humiliating,” she says. Like Laura, roughly one in four of our survey respondents say they’ve been financially penalized because of caregiving.
By contrast, Pat Pearman says she continued to grow in her career at GE because her managers were supportive when she needed to handle a medical need or a conflict at her mother’s day care center. Her husband’s employer was also supportive. Jim Sr. adjusted his start times so that while Pat was helping her mother in the morning, he could be at home to get their sons off to school.
What the Future Holds
Alzheimer’s is the diagnosis no one wants—yet care givers agree that it’s far better to know early. Roughly half of caregivers say they wish their loved one had been diagnosed sooner. When asked if they’d want to be diagnosed early themselves, the answer shot up to 84 percent— a resounding yes.
Right now Alzheimer’s ranks as the sixth-leading cause of death in the United States. It remains incurable, but there are reasons for hope. For example, more people understand that dementia is not “normal aging” and flag it to doctors. (It’s important to be proactive: 79 percent of the women we surveyed say their doctors have never discussed aging with them.) There are also many drugs in clinical trials, with the promise that in the future the condition may be considered a manageable chronic disease.
For Marla Vlieger, the warning bells rang when her mother-in-law, once a consummate hostess who would always welcome her family with a beautifully set table and a house redolent with the scents of cooking, couldn’t seem to manage a meal. “We’d arrive and nothing would be ready,” Marla recalls. “I’d be looking around the kitchen, checking the microwave, seeing dishes in various stages and trying to figure out what she had planned to serve.” Elaine also was having trouble in her book group with character names and once wandered off while on an exercise walk with a friend.
Marla’s husband, Bruce, and their grown children (Ashleigh, 28, Michael, 25, and Tim, 23) are grieving in different ways over Elaine’s illness, yet they’re all grateful that she’s still capable of discussing her wishes for the future. Both Marla and Elaine have joined support groups and taken training classes so they can understand how to simplify Elaine’s life. Most changes are small: Elaine has stripped clutter off her refrigerator to leave only the most important phone numbers. She also plans one major activity per day, such as a lunch with friends who drive her to the restaurant, and she tries to get enough sleep because confusion intensifies when she’s tired.
Marla knows that over the next several years as Elaine declines and Zylana reaches preschool age, most of the care for both will fall on her shoulders. But she and Elaine are both glad that they have been able to make plans together. “Early diagnosis is helping Elaine participate in decisions about her future,” Marla says. “And for me, knowing what’s coming helps me move towards acceptance.”
Concerned about someone?
You can learn about the 10 signs of Alzheimer’s disease at alz.org, the Alzheimer’s Association’s website. In addition, a free cognitive screening test, developed by Alzheimer’s expert Douglas Scharre, MD, can be downloaded at sagetest.osu.edu and brought to a doctor’s office. The average time between noticeable symptoms and diagnosis is 3½ years. Don’t let this valuable time elapse, says Dr. Scharre. You won’t violate confidentiality rules by telling your loved one’s physician about your concerns.
Already a caregiver?
What happens when your loved one goes into the wrong-gender bathroom? Should you remind your mom that your father died a decade ago? How can music soothe late-stage patients? Where can you buy a GPS bracelet for a loved one who wanders?
To address these and many other questions, the Alzheimer’s Association just launched alzconnected.org, a free online community where caregivers can share tips, advice and information.