| | By Yoko Yoshikawa.
Yesterday, my mother-in-law, Florence, underwent three hours of medical testing. She was diagnosed with senile dementia, which may turn out to be Alzheimer’s disease. When my husband comes home and tells me the news, my heart sinks. But then he tells me that despite the grim diagnosis, Florence was as feisty as ever at the restaurant afterwards. “I may have Alzheimer’s,” she said, “but I still have an appetite and I can tackle this hamburger for sure!” This is funny, because Florence, at 82, is rail-thin and eats like a bird.
Florence and my sister-in-law Rox, her primary companion and caregiver, have always been close. For years, they have lived amicably near one another up in the El Cerrito hills. Now, however, the situation is starting to fray. Since Florence cannot drive, Rox is her chauffeur. As Florence has difficulty dealing with her bills, Rox is keeping her books. Rox’s days are increasingly consumed by caring for her mother. This does not work.
Late at night after the children are in bed, my husband and Rox have long phone conversations, punctuated by moments of high tension. The question is what to do. How can Rox be freed from the burden of daily caretaking? Can we honor Florence’s wish to stay in her own home until the end?
Our dilemma is nothing unusual. Common challenges for families these days range from coping with the deterioration of an aging loved one’s mental functioning (Alzheimer’s or dementia) or their body’s slow decline, to simply arranging rides or meals once they can no longer do so for themselves. We do not have a society that is well prepared for the numbers of aging people in our midst. The official numbers speak to a growing swell of elderly, and the imbalance threatens to tax the younger population heavily in years to come. Decades ago, when family members were likely to live close together in the same town, and women less often left the house to work, it was easier for adult children to care for older parents. But now, with relatives scattered across our large country, and fewer adults at home during the day, seniors cannot so easily turn to family members for help with everyday tasks.
As of June 2009, 39 million people 65 and older lived in the United States, making up 12 percent of the entire population, according to U.S. Census Bureau data. By 2050, that number is projected to swell to 89 million, comprising 20 percent of the total population.
Luckily, the East Bay abounds in resources for those considering how best to care for their aging relatives—or, for that matter, planning ahead for their own post-retirement years. All the preparation in the world can’t change the inevitable fact of death, the decline that may precede it, and the complicated, often painful emotions that surround it. But by thinking ahead, and exploring the gamut of possibilities—from toughing out the last years in independent solitude to receiving varying degrees of assistance from relatives or professional care-givers—seniors (and midlifers, too) can make reasoned choices about how they want to live their final years.
At random, I make my first contact with a local service provider. I type in “Alzheimer’s” and “East Bay” on my computer, and Alzheimer’s Services of the East Bay pops up on the screen. The social worker at the Berkeley site, Geri Degen, becomes my first guide on this journey, as I research the myriad ways to provide support and care for an aging family member. As the informative and singularly patient Degen says, the East Bay is a “good community with good support” for the elderly.
Of course, there’s a difference between chronological old age and physical or mental old age. Some octogenarians are still working full-time, while some 65-year-olds can barely walk a city block or remember what day it is. Florence, it seems, falls somewhere between the two extremes. Degen explains how to start the complicated process of assessing my mother-in-law’s condition and what we can do to help.
“It’s scary,” she acknowledges. In the beginning, she says, family members are usually overwhelmed and do not know where to start. In retrospect, Degen adds, you may see that “things have been happening all along, but you don’t realize it until the crisis occurs.” Adding to the chaos, “if there is a spouse, often he or she may be covering up what is going on at first.”
The best starting place, according to Degen, is to “address what is currently causing the most problems and stress and get a handle on what future needs might be.” The key issue, she says, is “finding balance—not driving yourself crazy to do it all.” She advises family members of Alzheimer’s patients to educate themselves about the illness and then turn to caregiver support groups, friends, and other relatives to gather more information and emotional support.
“Above all, take care of yourself,” Degen says, pausing, then laughing ruefully. “Of course, this is easier said than done.”
Alzheimer’s Services of the East Bay offers adult day care facilities in Berkeley, Oakland, and Hayward for people with dementia, as well as transportation from their homes to the day care site. Other East Bay day care options include more than a dozen nonprofit programs under the Adult Day Services Network umbrella.
Organizations like these have been hit hard by the state’s current budget crisis, Degen says. She cites the heart-tugging story of a client whose daughter, a U.C. Berkeley employee, is her main caregiver. Recently, the daughter found herself struggling to make ends meet when the university cut her hours; she had to take a second job. Meanwhile, Alzheimer’s Services was forced to cut back its operating hours from five days to three days per week. This might have made it necessary for the daughter to leave her mother, who had already fallen several times and sometimes wandered out of the house, at home unattended for two days every week. Thanks to a court mandate, however, Alzheimer’s Services has resumed its usual schedule of operations, and, for now, all is well with the family.
Overall, though, there are too many gaps in services, Degen says. People are discharged from the hospital too quickly, she says, and return to their homes sicker and weaker. “As a society, we should do better by our elderly and loved ones,” Degen says. “We need a change in values. People want to stay home. In other societies”—she mentions Great Britain—“they provide the support to make that happen. We should be doing that here.”
Staying in our homes as we age, surrounded by the familiar, can give a reassuring sense of permanence when our bodies and minds are in flux. But navigating and maintaining a home with multiple rooms and perhaps a staircase or two is much harder at age 80 than 60. The most straightforward, and least expensive, way for family members to help is to handle all the necessary care themselves. This may work well for a period of time. The task can become overwhelming, though, especially if the older person grows more incapacitated.
For relief, some turn to a caregiving agency, a business that provides personnel who come regularly to the home to help with a wide variety of tasks. Then there are adult day care facilities, such as Alzheimer’s Services, offering a safe environment, as well as activities, social interaction, and meals, during daytime hours. And recently, many families are turning to so-called villages, community groups designed to help elders remain in their homes through a network of services—much like the true villages of the past, where neighbors and family members naturally joined forces to care for the elderly in their communities.
Rose Meyer (a pseudonym), a teacher and director of a Berkeley preschool, is anxious about her mother, 88-year-old Jean (a pseudonym), who is growing forgetful. She is just beginning to explore how to care for her mother and where she can turn for advice and help. They recently took a cruise together—a journey that Jean had always wanted to make, along Alaska’s Inner Passage. But the trip turned out to be terrifying for her—she had to be pushed around in a wheelchair and seemed disoriented. Meyer says she talked of random things, seemingly off the top of her head, and asked questions constantly: “Where are we?” “What are we doing next?” “What time is it?”
For Meyer, too, the trip was agonizing. She felt upset with herself for being impatient with her mother. “The loss of cognition that I see happening—that’s going to be a challenge for me,” she says. “I really don’t know how I’m going to do it.” She is fortunate, however, to live literally steps away from her mother, in the cottage behind her house. Unlike many in her situation, Meyer says, she has “the ease of checking in with her without it being a big deal for me.”
Meyer’s mother is still fairly self-sufficient, but that is unlikely to last forever. Once Meyer decides Jean needs more help, she can turn to an organization like Senior Helpers on Solano Avenue in Berkeley, which provides personnel who come to the house to prepare meals, do laundry, and help with housekeeping, errands, and toilet and bathing needs. Typically, families meet first with an agency’s owner, who helps choose a caregiver for the situation, and determines how much weekly care is appropriate. At $21 to $26 per hour for a caregiver five days a week, Senior Helpers’ fees are typical for East Bay services of this type.
Meanwhile, Jean, who has a pacemaker and takes three medications, is contemplating dropping her aerobics classes at the Berkeley YMCA because she’s no longer able to keep up the way she wants to. She still drives, although less frequently now, and sticks closer to home. Perhaps most alarming, she’s not calling her friends these days; it seems that Jean is quite aware that her mind is slipping, and fears that those close to her will notice.
Recently, Meyer found someone who was willing to accompany Jean on various excursions: shopping, a trip to a museum, a play, or movie. But Jean, stubborn and independent, is not willing to avail herself of a “paid friend,” and wants most of all to go to these places with Meyer.
Meyer and her mother have made an appointment at LifeLong Medical Care’s Over 60 Health Center in Berkeley, one of many East Bay clinics that cater to the specific needs of older adults. She has heard good things about the clinic, which serves both insured and uninsured patients, and hopes that a gerontologist will help her understand and work with her mother’s needs more effectively.
It is not an easy time for either woman. “I cannot give up my whole life,” Meyer says. “My mother has always said that she doesn’t want to go into one of ‘those places.’ And I don’t want her to. [But] I am going to need a lot of help.” All in all, she is feeling depressed about the situation. Later, she amends this statement: She is “not depressed, but grieving,” because she is watching her mother die.
Meyer notes how their roles have shifted in the past 10 years. “I cannot have my mom give me the kind of appreciation or the mothering that she used to. She’s very loving but I’m the grown-up now.” Frankly, she says, “I hate it!” But she knows that there’s no “going back to the mom of 20 years ago, charging down the street.”
Meyer is doing what she can to stay focused on the needs of the moment. “That helps me stay sane instead of really losing myself in the sadness. Instead of ‘Oh my God, my mom’s going into dementia, what am I going to do now?’ I can say, ‘Well, today Mom’s in pretty good shape, and today I can do these things.’ It’s going to help her get through every hard place, too—if we keep it to the small things we can do, and make it not so frightening.”
Sometimes it is, in fact, taking care of the small things—like fixing a broken faucet, helping with food shopping, or taking out the garbage—that can make the biggest difference in seniors’ daily lives. Enter the village concept, modeled on the small communities of yore that seamlessly incorporated the needs of aging members into their daily routines.
Shirley Haberfeld, 64, likes her home and neighborhood in Berkeley, where she’s lived for 43 years. She enjoys simple pleasures like looking out her window and seeing children at play. In 2007, Haberfeld read about the Beacon Hill Village, a community-based nonprofit organization in Boston, Mass. that makes it possible for the elderly to stay in place, even as they may need more care and support. Like other senior villages, Beacon Hill is not a single-site residence; what members share is not a dwelling, but services and social connection. After talking about it with her friend, Pat Sussman, the pair met with five other women friends around a kitchen table one evening and talked, sharing stories from their parents’ later years, and visions and fears about their own old age. That conversation launched the Ashby Village, scheduled to begin next March, open to all Berkeley residents and residents of Oakland’s Rockridge neighborhood.
“We are on the cutting edge,” Haberfeld says. “It may not be perfect, but we’re on to something. We can make all the difference for those who cannot afford to move to a senior care facility, do not want to burden their children, or do not have children.”
Just a few miles south in Alameda, the Avalon Village opened its doors a year and a half ago and now has 25 members, 24 of whom are women. Members of the Avalon Village pay an annual fee to receive the benefits of a consciously created village—volunteers who will drive them to appointments and grocery stores, and one master phone number that they call to get help with home maintenance like plumbing or electrical problems. As Haberfeld puts it, a senior village provides “one-stop shopping.” And when the service person comes a-calling, a volunteer is available to sit in on the visit, providing both physical and fiscal security, and facilitating the interaction if necessary.
Members of the Avalon Village meet for lunch once a month (transportation is provided) and can attend events at the Alameda Senior Center. Currently, membership runs $250 a year for a single person and $450 for a couple. But from a financial viewpoint alone, the benefits may soon outweigh the costs. Ashby Village members are looking into sharing in-home health care aides (agencies typically require a minimum commitment of 15 hours a week per client), and getting discounts from some businesses.
“As we age,” Haberfeld says, “we lose some of our connections and resources. We don’t get out much; we don’t see our friends. [Villages are] a way to join hands again, to be creative. All the research indicates that if we have social relationships and can be involved in a community, we live healthier and happier lives.”
The Berkeley-based Elders’ Guild, a collaborative community-building group, is also involved in the burgeoning village movement. Through monthly meetings at the Berkeley Public Library and Kaiser Permanente in Oakland, as well as online, the nonprofit is currently soliciting input from local seniors who want to stay connected with their peers —and remain socially and politically conscious. After all, notes a handbook on aging published by the Elders’ Guild, “. . . We will spend more time as elders than we have as children, as students or as builders of family and career.” It’s only logical, then, to invest effort in creating the optimal situation for what may turn out to be a hefty chunk of life.
Staying at home, though, is not the best option for every senior—or for every senior’s family. Reasons for pulling up roots vary: Some elders, of course, move (or are moved) because they need more extensive care than they can receive at home. Many others, however, are motivated by a healthy craving for more social contact with peers, or an aversion to becoming a burden. And far from the dreaded scepter of the stereotypical old-folks home, with its institutional halls, bedridden residents, and aroma of urine, today’s senior communities are more apt to resemble high-end hotels than hospitals.
Earlier this year, Margaret Hamilton, 73, sold her home of 40 years in north Berkeley, and moved into an alcove apartment in St. Paul’s Towers, a nondenominational retirement home run by the Episcopal Senior Communities near Lake Merritt in Oakland. A retired schoolteacher, Hamilton—who is single and has no children—had been finding it increasingly difficult to get out on her own. “I was alone more often because I was having trouble getting out,” she says. “Mentally and socially, I needed more stimulation.” At St. Paul’s Towers, Hamilton joins a built-in community of relatively healthy, engaged seniors, yet retains a large degree of independence. She especially appreciates the three live musical events per month offered on the premises, the car service that allows her to attend her church in Berkeley every Sunday, the many activities, and residents whom, she says, share her political views (many of whom are also from Berkeley and still actively volunteer in the community).
Like many long-term care facilities, St. Paul’s Towers offers three tiers of residential options, with the majority of the 200 residents capable of what is referred to, in the senior housing biz, as independent living. Those who are less mobile or capable qualify for an assisted living program, meaning that they can receive around-the-clock help with the activities of daily life, while still living in a private apartment and having access to social programs. And for residents who need 24-hour nursing care or rehabilitation services after illness or surgery, St. Paul’s Towers offers a skilled nursing option.
Moving to an independent lifestyle community can be an opportunity to “right-size”—not downsize—an older person’s life, says Victoria Stone, the regional community relations director for AgeSong, the family-founded business behind three senior residences in the East Bay. Liberated from chores that may have become difficult or time-consuming, like bills and groceries and housekeeping, a person has more time for friends and family. “Ninety-nine point nine percent of the time,” Stone says, “people are happier after they’ve moved into a senior community and wished they’d done it sooner.” AgeSong operates two residences near Lake Merritt—an independent living community housed in a historic Art Deco building, and a residence for seniors whose speech and behavior have deteriorated with age. A third AgeSong residence, providing a full spectrum of independent, supportive, and assisted living services, is slated to open in Emeryville early next year.
Across the Bay, in San Francisco, Eileen Blumenthal, her partner Pat, and her brother Steve rearranged their lives and living situations in 2003 to care for Blumenthal’s mother in Eileen’s home as she slipped further into Alzheimer’s disease. Before then, they visited a few retirement homes and assisted living facilities but deemed them all too “expensive or somewhat depressing” and decided that they could do better. After all, Blumenthal says, “She’d been such a great mom for 45 years—couldn’t we take care of her?” And they have, day in and day out, for six years.
In the past three or four months, though, Blumenthal’s mother has become significantly less capable. She’s still sweet, kind, and loving, but left to her own devices, does nothing but sit. She rarely even opens her eyes unless asked specifically to do so; one of Blumenthal’s Buddhist friends says that her mother must have achieved enlightenment.
Blumenthal and her brother are at a crossroads. Both are in their 50s, and acutely conscious that they can live with a measure of freedom now that they might not have later. Blumenthal says that she does not want to sound crass. But, she muses, “Perhaps on the balance it is not necessary for us to continue to care for her. She has always asked not to be a burden.”
Johnny Manzon-Santos, 44, the youngest of four in a Filipino family, is yet another middle-aged child doing his best to plan for an aging parent’s future. At 15, Manzon-Santos lost his father; later in life, while serving as executive director of an AIDS and HIV service and advocacy agency, he saw clients and friends die unseasonably young. Perhaps because of these experiences, Manzon-Santos, now an Oakland-based life coach and adult figure skater, has been remarkably proactive in planning for his mother’s upcoming years. He’s even drawn up a flow chart outlining various medical and end-of-life scenarios that may arise in the coming years, and thought through appropriate responses. His 80-year-old mother, fondly known to all as Lola (“Grandmother,” in Tagalog), lives alone in a small house on a corner lot in Summerset, a gated community for independent seniors in Brentwood. Over the past year, Lola and Manzon-Santos have been visiting various assisted living facilities, potential options for a time when Lola may require more day-to-day support.
According to Manzon-Santos, if Lola were not so averse to being a burden, she could live with one of her children, as is often the case in Filipino culture. Instead, the goal is to find a form of senior care that is affordable given Lola’s fixed income from Social Security, her small pension, and the larger veteran’s pension of her deceased husband. Manzon-Santos is thinking long-term; his mother could live for 20 years or more. There must be enough money to pay for her living situation and a little over, for a possible illness or medical crisis which would send costs higher.
Budget constraints limit Lola to less expensive residences but ironically, this suits her: She believes that lower-end options attract people from more cultures and ethnicities, and feels most comfortable in a diverse environment. At the moment, she and Manzon-Santos are considering a long-term care facility in Napa, a nonprofit owned by the Odd Fellows. But Lola is in no hurry to finalize the arrangements. “When the time comes, I’m willing,” she says. “Right now, I’m still shopping for what’s out there and enjoying my independence.”
“How will you know when you’re ready?” Manzon-Santos asks.
“When I can’t find my key—and then when I find my key, I don’t know what to do with it,” Lola retorts. She is certain that she will be able to tell when it’s time to surrender some of her independence. In her estimation, she has about 10 more years yet to “play.”
The key to a worthwhile life, most of us would agree, does not lie in its length, but in living a life that engages you, that you participate in with some modicum of verve and grace. For Harry Grey, 87, a native New Yorker now retired in Oakland, the “crowning point of his life” is his relationship with his wife, Gale, who is 15 years his junior. The couple has been married for 40 years, and Grey doesn’t intend to let things slide now. “I only have so many years to live,” he says. “I’m not being pessimistic; I’m being realistic. I probably have four, five good years, if I have that much. I want to be able to enjoy and protect my wife in the few years to the best quality that I can. It’s important.”
Although the young tend to assume that sex is the province of youth, Grey is living proof that there is no upper age limit for intimacy. “I still try to have sex,” he says, adding that these days, he still values every second of closeness. With characteristic candor, he says that his doctors have advised him not to skimp on foreplay, either. But, he says, “at 87, it’s hard to have all the play!” Grey also keeps the home fires burning by doing the food shopping for Gale and himself; up until recently, he did the cooking, too.
The couple lives near Mountain View Cemetery in north Oakland, and treat it as their “playground.” Each morning, Grey warms up at home for 30 minutes—his personal routine of yoga and other exercises—to keep his body limber and strong. Then, weather permitting, the two exercise in the graveyard—Gale running; Grey mostly walking. (During the colder, rainy months, he replaces outdoor exercise with swimming at the Oakland YMCA.) Grey, whose dedication to exercise would be noteworthy regardless of his age, also attends a yoga class at the North Oakland Senior Center. Once upon a time, though, he was capable of much more, running nine miles at a stretch, a few times a week. But, he acknowledges, his capacity has changed. Today, he has a pacemaker; in addition, he was diagnosed two years ago with lung cancer. A priority, then, is to judiciously husband his strength. “A 70-year-old thinks that a person at 80, 85, and 90 still has the same kind of energy,” he says. But “it’s not that easy anymore to put out that much energy.”
Despite the disclaimer, though, Grey hasn’t done much sitting around since he retired in 1991 from his last job as part owner of a web email company. He volunteered with Head Start in Oakland for 14 years, reading to preschool children. He volunteered at day camps for children with AIDS. With Gale, he volunteered for Meals on Wheels, delivering dinners to homebound seniors. Most recently, he’s been volunteering at the North Oakland Senior Center, reading The New York Times to people suffering from Alzheimer’s and other forms of senile dementia.
“There are too few old people who are giving back,” he says. “They want, and they don’t give back. They want, instead of opening their hand and giving out. That’s where life is.”
Just a month ago, my mother visited the East Bay, a rare, once-every-two-years occurrence. Florence, my mother-in-law, came to dinner, and she and my mother talked and laughed and told stories. Recalling that my mother was born in Japan, Florence reminisced about a trip that she had taken to that country decades ago. Afterwards, my mother exclaimed that Florence was doing so well. She was impressed with how gracious, engaged, and well-spoken she seemed. “I’m worse off than she is,” said my mother—who is a full 10 years younger than Florence.
We humans are highly social creatures. Although there are those who can stride into a situation and be a magnet with the sheer force of their bonhomie, Florence is not so gregarious and as she ages, she is less outgoing. Being hard of hearing, she does not participate in many dinner table conversations. But in this setting—at home, with son, granddaughter, and a contemporary related by marriage—she rose to the occasion and sparkled.
This is probably what most of us want—a chance to share, to be heard, to laugh and be held in a web of connection. This is why Shirley Haberfeld and others are creating villages to support seniors who want to continue living in their beloved homes. This is why Margaret Hamilton, feeling isolated and alone, moved to St. Paul’s Towers. This is why John Manzon-Santos has devoted himself to helping his mother find a comfortable, affordable, assisted living situation well in advance of the time that she might need it. This is why we daughters and sons are doing what we can for our parents, who entangled us in this human weave to begin with—and in whose shoes we will someday stand.
Yoko Yoshikawa is a yoga teacher and writer who lives in Berkeley.
Daily constitutional: Harry Grey, 87, and his wife, Gale, 71, keep themselves and their relationship strong by walking every day in Mountain View Cemetery in Oakland. Grey also volunteers as a reader for seniors with Alzheimer’s disease. Photo by Pat Mazzera.
Good move: Margaret Hamilton maintains her independence, yet also enjoys a community of active peers, at St. Paul’s Towers retirement home in Oakland. Photo by Pat Mazzera.