Three a.m. your Alzheimer's spouse won't let you sleep. Community is as close as your keyboard.
In another neighborhood near the airport, Audrey Buntura stayed up late in the solid bungalow she and her husband had moved into nearly 38 years earlier. She and Frank never had children, so after he went to a nursing home in early 1992, it was lonely at night. But she took comfort in the fact that she had made the right decision.
Sometimes late at night, she would put on her white slippers with the open toes and blue-and-pink embroidered scallops across the top, pad over the worn spot in the floral carpet in the front bedroom, and settle down at the computer.
> Article #123
From: cb169@cleveland.freenet.edu
(Audrey Buntura)
Subject: cb165
That summer of 1992, the three of them - Sally, Linus, and Audrey - became confidantes long before they ever met in person. These people weren't Net-happy surfers, hardware-obsessed technogeeks, or alienated teenagers looking for a cheap way to download dirty GIFs. The computer, for them, had become a tool more powerful and important than their telephones. They could catch up on conversation when it suited them - at 3 a.m., if they wanted - and respond to other caregivers' messages when they weren't distracted.
Linus was an efficient and organized man - "my Teutonic background, I guess" - who liked to travel and adhered to a rigorous exercise program to combat the effects of one heart attack and a triple bypass surgery. Besides the regular bike trips he took in Europe and Connecticut, he and Ruth had visited friends and relatives as much as possible before she got claustrophobic on airplanes.
Audrey liked to do things to help people; she made 19 kinds of homemade cookies around Christmas time, and kept the house clean enough to eat off the floor. When, at age 62, she was laid off from her job at Metal Source, a local steel service center, Audrey called it a blessing in disguise, because now she could take better care of Frank.
And Sally? She loved a good laugh, made light of things to make herself feel better, could even turn her husband's memory loss into a joke. She called him "The Magician" because he "made things disappear" around the house. One of the things she had loved most about Ed was his good humor.
As a young girl, she'd met him at a party at her house, back when "the guys and gals got together to play and sing, and my house was the only one with a player piano," she remembers.
When the Wyse terminals were installed in the caregivers' homes, the three found they suddenly had a 24-hour-a-day support group. After years of feeling locked up at home, where they kept unrelenting watch over failing spouses as their own lives narrowed and friends disappeared, they had a place to turn - and a new group of people to talk to which was enduring similar predicaments. Alzheimer's, a progressive and fatal disease that attacks the brain, often causing violent behavior, afflicts 4 million Americans. But it also strikes unusually hard at the patients' loved ones, shackling the caregivers to their own homes.
Offline, Sally and Linus and Audrey had been stuck - and alone. But online, they were connected, could thrash out any problem, get heartfelt encouragement any time they needed it. The computer, as Linus puts it, "became my lifeline. If someone came up to me and said they were going to take it back, I'd say, 'Take my left arm instead.'"
Sally and Audrey and Linus would have laughed, they say now, if they had heard about the experts' doubts that the Alzheimer's Disease Support Center's fledgling online project would succeed.
"Some social workers said this would isolate people. 'If you put computers in people's homes,'" they said, 'they won't go to support groups,'" remembers Sue Kacerek, the social worker and program specialist at the Cleveland chapter of the Alzheimer's Association who helps manage the program. "But people like Sally and Linus and Audrey proved them wrong."
In 1995, in fact, the National Information Infrastructure Awards - a program sponsored by a coalition of public and private organizations including Sun Microsystems, Netscape Communications, AT&T, and others - gave its first annual Community Award to the online project. Chosen from nearly 150 entries as the best at increasing citizen participation in community life, the Alzheimer's online project "exemplifies what it means to live in a networked society," says Scott Bascon, a principal of Access Media Inc., a Santa Monica, California, company that created and organized the awards. "Here, we have lives enriched. Here, technology is used to break down some very difficult barriers."
Back in the mid-1980s, when the newly created Alzheimer's Center at University Hospitals of Cleveland hired Kathleen Smyth, a researcher who'd just earned a doctorate in sociology from Case Western Reserve University, she was just starting to understand the potential of microprocessors and how people could use them. In her previous work in data management and analysis, she had dealt primarily with mainframes.
But in her new job at the center as director of research operations, she was supposed to think of innovative ways to provide community support to people affected by the disease. Coincidentally, Thomas Grundner, a colleague she'd met while working on her PhD, had recently become so interested in hooking up community users to the Internet that he'd created a new kind of access provider. Through his service, anyone with a modem could connect without membership fees or user charges to the limitless resources of the Internet. Grundner called the service the Cleveland Free-Net.
One day, Grundner told Smyth the results of his earliest survey charting the types of people who were logging on.
"It was older people and, well, that was astounding to me," Smyth recalls. "We actually saw these normal people using a computer system."
That's when Smyth got her idea. She asked Grundner if she could design an experimental project to put Alzheimer's caregivers - typically older people with little computer experience - online. Using the generic features available on the Free-Net - email, the Q&A function, the BBS structure - Smyth created an environment where caregivers could get expert medical advice, find out the latest news about Alzheimer's research, and converse with each other. And with a small grant from the National Institutes of Health, which already was underwriting the creation of a number of regional Alzheimer's centers, including the University Hospitals project, Smyth gathered enough funding to launch the project.
In 1989, when the first users were trained, Smyth thought the bulk of their activity would center on posting medical questions for the hospital's professional staff to answer. She was wrong. From Day One, the caregivers were dialing in to talk to each other, craving communication so persistently that they would endure two hours of busy signals waiting for a Free-Net phone line to open.
"They were most interested in the peer-to-peer communication," Smyth says. "They had this push to get together. We didn't expect their range of conversations, the topics, the fact that they talked about things that are a part of their lives. Weddings. Funerals. Gardens. They taught us that they were real people - not just caregivers. They refused to be compartmentalized."
At home in her ranch house during the summer of 1992, Sally Chadima found herself getting caught up in the stories of the other caregivers - of how Linus walked Ruth around the nursing home grounds to see the flowers, amazed that his wife could mock the cardinals' whistles; of how Audrey took a daylong bus tour with a friend.
One day in August, Sally logged onto the system, and read:
> Article #124
From: cb165@cleveland.freenet.edu
(Linus A Gottas)
Subject: Wear a Helmet
> Article #127
From: b1728@cleveland.freenet.edu
(Sally Chadima)
Subject: Wear a Helmet
By 1992, dozens of caregivers were online - and getting increasingly frustrated by frequent busy signals when they tried to log onto the Free Net's few community access lines. Smyth realized that the project needed its own dedicated phone lines, and when it was time to renew a small grant, she asked for funds to solve the problem. Today, the caregivers can call in on six lines that are ID-protected.
Held together by a patchwork of small grants over the years, the project's annual budget has never topped US$100,000. Current funding comes from a three-year, $153,000 grant from The Cleveland Foundation, a local nonprofit group. Mainly, the money pays for new Wyse computers.
The caregivers' machines are essentially dumb terminals without hard drives and are good for only one thing - connecting remotely to a complex system such as the Free-Net. The Wyse terminals are, for instance, the kinds of machines hospital personnel use to link to vast archives of patient records.
Sue Kacerek trains new users, coaxes reluctant computer neophytes to jump any psychological hurdles that prevent them from posting that first message, and troubleshoots when they have technical difficulties.
The typical user is a 52-year-old woman who cares for an ailing parent at home, Kacerek says. So far, more than 200 caregivers have been trained. Most of them still have their terminals.
Normally, Kacerek will load a Wyse terminal, keyboard, and modem into a box, connected and ready to run. After completing the hour-and-a-half training session, all a new user has to do is carry the box into the house and plug two power cords and a phone line into the wall.
"Usually, training starts with me saying, 'This is the space bar.' And sometimes, I write S-P-A-C-E on it, in marker. I try to use language they understand. I'll say, 'See that number you typed? To make it go, you press this key, and it's called Enter.'"
Kacerek says many users get excited by the possibilities right away. That was Marian Wright's reaction, for instance, when Kacerek took a computer last summer to the white frame house on Cleveland's west side, where Wright has lived for 35 years. The 53-year-old former security guard supervisor had been caring for two Alzheimer's patients - her mother and a longtime family friend named Don. With nerve damage in her right foot, she didn't get out of the house much anymore.
So as soon as the computer was set up in a corner of the dining room, near the glass-fronted curio cabinet filled with Hummel figurines, "I felt better," Wright says.
Within hours, her fingers were flying over the keyboard and she had learned to make "smiles" and to sign off her own posts: "Love Marian :-)"
"Sometimes when I can't sleep, I come in here and write it all out," she says, gesturing around the room decorated with a lace-covered tablecloth and a set of The Three Stooges commemorative plates. "Once, I put down everything about a hard day's night, where I was up all day and all night with them. They sit in two chairs and he can pick and pick at Mom. I have to be the referee."
The computer is an odd piece of equipment to find in Wright's house, where a rotary-dial phone is still mounted on the wall by the front door, and a vintage tape deck as big as a night table sits nearby, its clunky metal knobs reflecting the weak sun of a winter afternoon.
Even caregivers who are computer-literate before they join the Alzheimer's online project say they are amazed by its power to improve their lives.
Mike Braun got his first computer, a RadioShack TRS-80 Model 1 with 4 Kbytes of RAM, back in 1980, long before his wife, Sheila, was diagnosed with Pick's disease, a fatal ailment rarer than Alzheimer's that causes similar symptoms of dementia. He got online, on his own, during the 1980s.
"Driving home from the hospital, the night the doctor told me in 1993 that my wife had Pick's disease, I didn't know diddly-squat about the disease and I needed information fast," he remembers. "So when I got home, I just started nosing around on the Free-Net. I figured Š there had to be something. And lo and behold, I came across the Alzheimer's caregivers forum."
One of the first messages Braun read, sitting before his computer in his glass-walled contemporary house on top of a hill in Chagrin Falls, Ohio, was from a woman who had just returned from the nursing home, where her husband had died that day.
"It was timestamped 3:45 a.m., and the gist of it was that she felt it was necessary to talk to her computer family before she called anybody else," Braun remembers. "I was so impressed with this lady's feelings toward the other caregivers that I knew immediately this was something I was going to have to be involved with."
In fact, after he read archived posts from caregivers who were agonizing over whether it was time to move their own sick family members out of their homes, Braun decided last year it was time to place his wife in a nursing home.
"It helped me," Braun says. "Just reading what they had gone through helped me a lot."
Reading about the other caregivers' lives was helping Sally Chadima a lot in the summer of 1992. She logged on almost every day and started to think of the caregivers as some of her closest friends; some of them even began meeting for lunch - once a month on the west side of Cleveland and once a month on the east side, so that nobody had to drive too far - a ritual that endures to this day. She read about how Linus so missed the lemon pies Ruth used to make for his birthday that he had gone to the supermarket and bought a box of lemon pudding. She read about how the hard work of painting and stenciling the walls of her house was good therapy for Audrey.
Then, for a few days in August, Sally didn't log on at all.
Finally, one day, she wrote:
> Article #175
From: b1728@cleveland.freenet.edu
(Sally Chadima)
Subject: Anybody home?
> Article #176
From: cb169@cleveland.freenet.edu
(Audrey Buntura)
Subject: Re: Anybody home?
> Article #180
From: cb165@cleveland.freenet.edu
(Linus A Gottas)
Subject: A DIFFICULT DECISION MADE
SALLY, A GREAT BIG HUG TO YOU!Š You have a great love for Ed. He has a great love for you. His love for you is locked inside him now and at times he doesn't know the "combination" to let it show. I (we on this network too) are proud of you Sally. We too love you and have been "sweating" this out w/you.ŠI have a busy day ahead of me. Have to pick up Raggs, our dog, from the kennel now, visit Ruth, get some groceries in, do some banking, etc. But before starting the day, had to "get on the screen" to offer you my support in what you are feeling. Linus :-) :-) :-)
It was less than two months later that Ed Chadima died. His health declined steadily in the nursing home, until one day, Sally wrote, "At 5 a.m. this morning Ed died in the emergency room of Parma HospitalŠ. You are the first people I am notifying."
Sally got dozens of messages of condolence. She said the caregivers had started to feel like family.
Sally kept her computer for a few more months, then one day decided she was through with Alzheimer's, once and for all. She felt as if she'd had a toothache for years, and suddenly it was gone.
The other caregivers urged her to stay online to share the benefits of her experiences with others. But one day, quietly, she told Sue Kacerek that she was ready to give back the Wyse terminal.
"After Ed's death, I felt like I had done my grieving, starting two or three years earlier, when he started to get so bad," she remembers. "It was time for me to move on."
She still keeps in touch with some of the caregivers - Linus got a birthday card from her last year - and she says she doesn't know how she would have made it through such a difficult time without them. But, she says, "It was time to get back to my life."
Audrey, on the other hand, has stayed on the network. When her husband, Frank, died in 1994, the word spread online within hours. At the funeral home, she looked up - "I saw all the people from the computer group come in the back," she remembers. "I thought, There's my family."
She kept her Wyse terminal and now converses daily with other caregivers who are navigating the same rocky terrain she remembers. "If I can help, that's a good reason to stay," Audrey says.
Linus, too, has stayed online. When his wife, Ruth, died in 1995, he didn't even consider giving up his computer. As he said one winter night, while maneuvering his van through 14 inches of fresh snow on his way to pick up Audrey for dinner at the Vienna - the 24-hour restaurant where the caregivers hold their monthly luncheons - "I had an opportunity to show my love for Ruth in a way many never do. In a way, I'm grateful for that." Both Linus and Audrey are support-group leaders for Alzheimer's caregivers. And he checks his email a couple of times a day.
-Michelle Slatalla (mslat@echonyc.com) is co-author of Flame War, to be published by Morrow in September.
