Their DVD calms families shaken by Alzheimer's
When her 43-year-old husband had trouble finding the ignition slot, Joanne Koenig Coste told herself that he must have thought he was in their other car.
When he ran the football in the wrong direction during a game with the neighborhood kids, Koenig Coste dismissed it as another case of absent-mindedness -- an odd one, though, in that he had once been a star athlete.
Doctors suggested that he was probably depressed or had too much on his mind.
Then he started losing clients in his advertising and marketing business. He would work into the night on presentations, taping ideas to the dining room wall -- only to find in the morning that he did not remember a thing.
It was the late 1960s, when little was known about Alzheimer's disease. Charlie Koenig was diagnosed with a form of vascular dementia.
During the eight years of her husband's decline, Koenig Coste learned many things about the health care system, dementia, and loneliness. In 1976, two weeks after he died of a stroke, she set out on a mission to make sure others would not feel the isolation that she had.
To support herself and four children, Koenig Coste took a job as a nurse's aide at the Newton-Wellesley Nursing Home. Aside from the practical experience with her husband, she had no formal training in health care; her bachelor's degree was in psychology, her master's in education.
What she found at the nursing home dismayed her. ``The people with dementia were all so highly medicated that they had to be tied to their beds and wheelchairs in almost every case , and this was sanctioned across the country," she said.
Within six weeks she persuaded the home to set up an Alzheimer's care unit , and she was made its program director. She stayed on 20 years, and the six-patient unit she founded is now the 110-bed Newton and Wellesley Alzheimer Center.
After leaving the nursing home, Koenig Coste spent a decade teaching Alzheimer's care classes to families and at care facilities nationwide. In 2000, she was featured on NBC's ``Nightly News with Tom Brokaw" as part of a series on women to watch in the 21st century. In 2003, she wrote ``Speaking Alzheimer's," a book published by Houghton Mifflin that offers advice for everyday living and communicating with Alzheimer's patients.
Koenig Coste, who is 67, lives in Framingham with Edward Coste, who m she married 18 years ago. She is not about to settle into retirement.
One of her latest ventures will be screened for the public Tuesday night at Whitney Place, an elder care facility in Natick. She served as consultant for the DVD, ``Family Matters: Coming Together for Alzheimer's," and helped write its accompanying research journal.
The project was the idea of Boston hotelier Robin Brown, whose father, Jim, died of Alzheimer's. The Browns wanted patients and their families to have something to take home as soon as they received the diagnosis, to help them make sense of what was happening and what to expect in the future. The Jim Brown Foundation for Alzheimer's Research and Education approached Massachusetts General Hospital, where Brown had been treated, about making the film.
To produce the DVD, Mass. General hired Image Studios in Bethesda, Md., which , as part of its sales pitch , said it could enlist Koenig Coste as a consultant. Image writer and editor Wendy McGrane Strang and her husband, producer Garrett Strang, had previously made a film on Alzheimer's.
It didn't come out until after filming began that Strang is Koenig Coste's daughter. ``We wanted Image Studios to get the job because they deserved it, not because there was a connection," said Koenig Coste.
Though the new DVD is just under a half hour long, it was filmed over the course of a year. It follows four families who have been touched with Alzheimer's disease, including two from Wellesley and Weston.
Image Studios is now turning Koenig Coste's book into an instructional DVD, focusing on everyday life with an Alzheimer's patient, for families and care workers. It will provide tips on such routine yet difficult situations as getting dressed and placating anger, as well as ways caregivers can take care of themselves.
Koenig Coste is also finding time to team up with an architect and designer, providing advice on building Alzheimer's facilities.
The master networker recalls that bewildering time decades ago when she was a Natick housewife with no one to talk to about her husband's strange behavior. One of the most heart-wrenching experiences, she said, came days before she gave birth to their fourth child.
``My friend came over and asked how I was feeling. I answered, `OK, all things considered.' My husband looked at me and asked, ``What's the matter with you?' "
When she told him that her friend was asking about her pregnancy, he flashed an angry look and said, ``You could have told me."
Despite her protruding belly, he had forgotten that his wife was pregnant.
Koenig Coste has no illusions about the inevitabilty of Alzheimer's devastating course. But she believes it is possible to connect with its victims to the very end. She encourages care givers to focus on the patient's remaining skills, avoid conflict, and offer plenty of praise and encouragement. She calls this philosophy ``habilitation."
``Don't think about the losses but capitalize on the successes and what can still be done," she said. ``Tell him it's wonderful even if it's not perfect or the way it was."
Enter the patient's mental world, she counsels. ``Be where he is. When a patient talks about World War ll don't tell them it's 2006; ask about Truman."
When a patient lashes out, look for the reasons why. Something as common as showering can become a major challenge to caregivers. ``Alzheimer's doesn't make you decide that you want to be dirty; it's about fear of the water, fear of the noise, the water coming at you, and not knowing what to do next," she said.
When the problem came up in a support group Koenig Coste leads for family members, she suggested that a woman join her husband in the shower. Soon after, the woman sent Koenig Coste an e-mail: ``We've been married for 54 years , and we'd never showered together. Now he lights up like a Christmas tree because I'm hopping into the shower with him!"
For information on Tuesday's showing of ``Family Matters," call Whitney Place Assisted Living Residences at 508-655-5000. For more on the DVD, visit www.mgh.harvard.edu/familymatters/index.htm.
GIRL'S ARTWORK CHOSEN -- Tiny specks of orange, blue , and green marker cover Michela Janower's fingers. Pink polish clings to her small, short nails.
``Drawing relaxes me," she said. ``It's my favorite thing to do."
At age 8, Michela has one of her drawings on display -- on letters all over Israel.
The Newton girl, daughter of Cindy and Andrew Janower, is one of four young artists whose work was selected to appear on Israeli postal stamps. American and Israeli judges chose from more than 1,700 entries submitted by first- through eighth -graders in the United States and Canada.
The stamps, issued as a series called ``Children of America Paint Israel," were featured at an international stamp exhibition last month in Washington, D.C., where, Michela said, she got star treatment.
``My wrist was aching for about 15 minutes," she said, recalling how many autographs she was asked to sign.
The contest was a collaboration involving the Israeli Postal Authority and BabagaNewz, a monthly magazine for children that promotes Jewish values. Based in Newton and Wheaton, Md., it has a circulation of 40,000.
Michela created her design last year when she was a first-grader at the Rashi School in Newton. It depicts a dark-skinned boy with black hair and a light-skinned girl with blond hair holding hands next to an apple tree.
The stamp was originally titled ``Harmony," but all involved felt that the name did not translate well into Hebrew so it was changed to ``Half & Half."
``The reason I drew it was because our teacher said that we should do something about peace, about Israel, what you think of Israel, and the beauty and glory of it," said Michela.
The rainbow that stands above the boy and girl was drawn ``for no particular reason other than rainbows are rare and pretty," she said. On the top, the word Israel is written in Hebrew in red marker.
Someday Michela said she'd like to become a clothing designer.
Her mother said that winning the contest came at a particularly good time. Life at home was in a bit of a frenzy with one child just turning 1 and another, a 4-year-old, undergoing treatment for a brain tumor.
``It was nice to have the positive attention on Mikki," she said.
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