Ben and Paddy Moore moved to the Vineyard in the 1970s. He says 1975, she says 1974. Either way, both agree it was a good move.
Ben is an architect, and at the time he was just starting his career in Boston. The family was a large one with six children, four from Ben’s previous marriage, two from Paddy’s. Cities were tough places to live in the 1970s, though, and the kids were sometimes mugged going to school. Ben had deep family roots on the Island and the family decided to try out the Vineyard for one year, a test run of sorts to see if this other way of life fit their needs. As this story often goes, they never left.
Ben established himself on the Island when there were only a few architects living here, maybe one or two others. His style was traditional on the outside, modern on the inside. He worked his way up the ladder by word of mouth, designing homes for both locals and summer people, including Cyrus Vance and Robert McNamara.
He also fit the Island mold as an outdoorsman, once swimming all the way from Aquinnah to Edgartown, pond by pond, with one of his sons and his cousin Stan Hart.
Ben is now 78, and until about three years ago he still worked every day. But then he began to notice some issues with memory loss.
“I had formulas in my mind, I could just jot down a formula, carrying timber for instance, that was supporting a roof or other parts of the building,” he said. “I just lost them. I didn’t know them anymore.”
Paddy also noticed a change in her husband. Small things at first such as putting the wrong leg in when putting on his pants. “Spatial relationships of things we take for granted,” she said, seated with her husband in their kitchen in West Tisbury. “Things like setting the table.”
“That’s a very good example,” Ben said. “I remember the first time I forgot where the forks and spoons go.”
Ben decided to get a checkup at Brigham and Women’s Hospital in Boston to discover what was happening to him.
“I had five hours of testing which was really rigorous,” he said. “What was interesting was they would draw a picture like the shape of something, could be a very simple shape or more complex, and they’d leave it up and say draw it again. That to me was pretty easy. And then some of the things got more and more complex, and then they would chime in and read me a story, somebody’s mother doing something, going out for a walk, whatever, and then 10 or 15 minutes later they would ask me to tell the story back. Some of them I could get the story started, but most of them I couldn’t do it.”
“The outcome was, yes, you got it,” Ben said. “You definitely got Alzheimer’s.”
Initially Ben thought it was a death sentence and he visited each of his children individually to essentially say goodbye. But then he discovered that how fast the disease progresses varies and that he could possibly find ways to mitigate the effects. He has had diabetes for years, there is a link between the two diseases, and he had learned the benefits of taking care of himself. Ben described himself as never having been an expert student but he quickly became an A student of Alzheimer’s.
“I wasn’t actually scared, and I thought this is not a trip I want to be on, but I am, so let’s find out how to deal with it in whatever way is possible,” he said. “And so when the news came up from Community Services that they were going to have this group, I said I definitely want to be part of that and have been ever since.”
At the Wednesday morning support group at Community Services it is as if someone took the life of the party, or rather several very different parties, and put them all in one room. The group is diverse in age, income, gender, race and life experiences. The common denominator, other than some form of memory loss, seems to be an open acceptance about what is happening to them.
On a morning a few months ago, eight individuals with some form of memory loss sit around a table at Community Services. Nancy Langman, program director of the Island Counseling Center at Community Services, created the group with a grant from the Farm Neck Foundation. Victoria Haeselbarth, an outreach worker at the Edgartown Council on Aging, co-facilitates the group along with Kerry Saunier, a counseling intern currently studying for her master’s in clinical health counseling.
“We call it the memory support group,” Ms. Langman says.
“I don’t think I can remember that,” Bill Hall, one of the group members, chimes in. “How about we call it the question mark group?”
The motion is agreed upon by all.
The conversation around the table is lively, with each member contributing in whatever way he or she can or wants to. Some discuss their week, the highs and lows, others give advice, some complain, but mostly they make each other laugh and feel good. And if anyone forgets what they want to say, there is always the Book of Answers, something Ms. Haeselbarth picked up at a yard sale. The Book of Answers is a thick, black book with a single phrase on each page. If a group member becomes confused and misses the thread of the conversation but wants to contribute, he or she only has to reach for the book and turn to any page and read it out loud.
Bill demonstrates after he is asked a question about today’s handout which offers some tips for people with memory loss, such as getting enough vitamin D, or including coconut oil in their diet.
“The answer may come to you in another language,” Bill says, randomly turning to a page.
After he puts the book back he looks to the man next to him, Harvey Everett.
“Hey, no sleeping,” he says.
“I was thinking with my eyes closed,” Harvey answers. “Hard to think and sleep.”
“I didn’t mean to wake you up.”
“Since you did, you have to put up with me,” Harvey says, smiling.
Harvey is a tall, engaging man who, during one of his careers, was the senior vice president of resident services for a number of assisted living centers in Pennsylvania. One of his responsibilities was developing and directing the Meadows Program, which offered supportive care for persons with Alzheimer’s disease or related dementia. He seems to set the tone for the group with his articulate openness.
“It’s a receiving group,” Harvey says. “It’s something to look forward to. None of us has a great ego at this point in our life. But we need friends.”
“At age 85, when I look at it, I realize I’m not missing a whole lot,” he adds. “I can still share in a conversation to a degree. I just have to get off this big kick of my brain. That’s only part of me. And it doesn’t kiss me. It doesn’t hug me.”
His sentiment is echoed by Bill.
“Everyone has something to give to the aging process, in a positive way because it happens to everyone,” he says. “Fight or flight never solves anything. Positivity is the way to go. I know in my heart it’s the way to travel through old age.”
The group meets weekly for an hour and a half. Near the end of this particular day, Ms. Langman’s husband, Gary Cogley, arrives to play music.
“I used to play the guitar, but I have so much arthritis, so I play the ukulele now,” he says.
Mr. Cogley runs through a repertoire of songs including Sentimental Journey, Side by Side and Don’t Fence Me In. He hands out song sheets but the group seems to know the words by heart.
“Music is the last part of the memory to go,” Ms. Langman says. “Art is just before that. Names go very quickly.”
Between songs one of the quieter members raises her hand.
“This is so much fun,” she says. “When do you leave so I get to be depressed again?”
Later, as Mr. Cogley packs up and the group begins collecting their belongings and their caregivers wait for them out in the hallway, Harvey asks to add one more thing.
“I want people to know there is an answer for what people have been looking for,” he says. “And to know we are not all oddballs, other than myself.”
For those who find their way to this profession, the dedication runs deep; it seems as if there is nothing else they could imagine doing.
The memory support group grant from the Farm Neck Foundation called for two 12-week programs, one last fall and one starting this spring. The funding for Harvey and Bill’s group ran out long ago and at first Ms. Langman and Ms. Haeselbarth were on the verge of disbanding it.
“At the end of 12 weeks they looked at us and said, what do you mean we’re not meeting next week? You can’t leave us,” Ms. Langman recalled. “So Victoria and I looked at each other and said, okay we’ll see you next week. So we’ve just continued doing it. There’s no funding for this part of it.”
Recently Ms. Langman did receive a grant of nearly $18,000 from the Tufts Health Plan Foundation to create additional groups, one for caregivers and another one to run simultaneously focusing on art and music therapy for the participants. Thanks to this new grant there will be two groups this spring and two next fall, in addition to the two original groups.
And yet the memory support groups are just a small part of Ms. Langman’s and Ms. Haeselbarth’s job descriptions. As an outreach worker at the Edgartown Council on Aging, Ms. Haeselbarth spends her days helping individuals and families cope with all the effects of aging, not just memory loss. She wouldn’t have it any other way.
“I feel that every day I step through my office door I learn something new from a senior,” she said. “One of the things they impart is their sense, oftentimes, of acceptance of where they are in life as they transition out of this life. So there are many lessons to be learned from working with our seniors and a lot of growth that accompanies that — internal and emotional and spiritual growth.”
She added: “One of life’s greatest blessings is to be able to wake up every morning and really feel good about what you are doing and go into work with a spring in your stride knowing you can make some small difference.”
And yet, she admits, “there is a lot of sadness.”
Ms. Langman also wears many hats, supervising all the adult services, children’s services, New Paths recovery programs, driver alcohol education, and second offender programs, as well as the support groups for a myriad of elder outreach programs at Community Services. But it is Alzheimer’s and memory loss that is her passion. She has worked in the field of mental health nearly her whole life as a director of programming, and also for insurance companies and mental health centers.
She also has a personal connection to the difficulties of caregiving.
“My first husband died of cancer, a five-year brain tumor experience, and I asked for help way too late,” she said. “We were drowning by the time we asked for help. I was surviving on two or three hours of sleep a night, until several people stepped in and said enough is enough you can’t do this alone . . . Once I let people help, my life was so much better. And then they let you help them in return.”
Later, while working in Florida for a company doing Alzheimer’s clinical trials, she became even more fully engaged in the community of caregivers. Prior to this she had even thought about retiring, there was a house on the Vineyard in play now, but the experience of doing therapy for Alzheimer’s patients and their families, being on the front lines in a sense, made her decide to dig even deeper into this world. Already experienced through a long career that included both a master’s in public health and a master’s in psychiatric nursing, she decided to go back to school again at the age of 61 to complete a doctoral degree.
“I had started a doctorate many years ago and hadn’t finished it and it was still on my bucket list,” she said. “The thing I concentrated on was Alzheimer’s caregivers and that got me interested in early diagnosis, early memory loss folks, because that is what I was hearing about with the caregivers I worked with. They said how hard it was to watch their loved ones who were struggling in the early stages of it, and they wanted strategies to figure out how to help them.”
The memory loss groups are indeed as much about providing a place for people with Alzheimer’s to go and feel comfortable, as a way for caregivers to get a needed respite at least once a week and learn critical information. Caring for someone with Alzheimer’s is difficult for many reasons. Sometimes the person will undergo a complete shift of their personality, making it even more confusing for the family.
“Somebody who has been complacent their whole life becomes hostile and difficult and sometimes the reverse happens,” Ms. Langman said. “I worked with someone in Florida and their father had been a very tough army sergeant-type guy around the house and then he became meek and mild and sweet.”
For the most part the advice is to be patient and try to see the world through the eyes of the person dealing with memory loss. Strategies can range from basic suggestions such as making sure meals can be eaten with just one utensil, as having a choice between a fork or a spoon can become confusing and lead to agitation. Other advice can be more complex.
“You have a family member and they are wandering out the front door so a lot of people want to lock the door,” Ms. Langman said. “And then what happens is they try to unlock it and they get frustrated and get angry and act out. All you have to do is put a black carpet in front of the door. When you have Alzheimer’s it looks like a hole in the ground and they won’t step over it.”
“And it’s a lot of distracting people,” she added. “Somebody’s looking like they are wandering around, you say let’s go find the radio, I bet you’d like to listen to some music. It’s always redirecting.”
According to Ms. Langman, by the age of 85 one out of every three people has some form of memory loss, be it Alzheimer’s or just an aging brain. By age 90 it’s one out of every two.
Paddy Moore knows these statistics well, both as a caregiver and as part of the healthy aging initiative begun this fall.
“We need to do much more in terms of caregiver population here,” she said. “We’ve got to solve housing for younger people because otherwise there won’t be anyone to take care of the older people.
“By 2030 we’re supposed to have one-third of the Island over the age of 65,” she added. “That’s like tomorrow in terms of planning. And it’s going to affect transportation and housing as well as health care, all sorts of things.”
Planning for the future does not take a back seat for Paddy, but the day-to-day challenges are what really matter now. She and Ben have been married for 43 years and have 13 grandchildren. He was always the one who took care of the bills and was the fixer of things. It was also his job to feed the cats, while Paddy took care of the dog. But he can no longer be counted on to complete these tasks, as day to day he never knows how he will feel.
“I have what I call fuzzy days versus clear days,” Ben said. “When you wake up you can generally tell that the day is one or the other. And on fuzzy days, you can be very, how to describe it, lost. You don’t know what you want to do.”
And he has had some falls and sometimes gets lost on walks.
“Eventually, we will need round-the-clock care,” Paddy said. “It’s quite clear to me from everything I’ve read you can’t do it alone or you end up in the hospital yourself.”
There is also the way society, even in a close-knit community like the Vineyard, can shift when someone is diagnosed with an illness with more questions surrounding it than answers, and no cure in sight.
“I know some people are sort of afraid to have us for dinner or that kind of thing,” Paddy said. “I don’t know what they imagine. Some people you can talk to about what’s happening, some people you can’t talk to because they really don’t want to know. The part that puzzles me is the way people say goodbye or don’t say goodbye before they need to.”
At home there is nothing puzzling, though. After a long life together, Ben and Paddy still look to each other for inspiration.
“He has an acceptance which I could never, never equal — of, well, that’s just the way it is so then we have to deal with it,” Paddy said of her husband. “And he does that more gracefully I think than I would be able to do.”
Perhaps there is something in this graceful acceptance that has helped Ben not only deal with the disease but also mitigate its effects. Recently he returned to the doctor for a checkup. It had been two years since his last Alzheimer’s testing.
“When I was there Dr. Raj gave me a puzzle that she said she gave me two years ago,” Ben said. “And when I finished she said, well, that was petty good. Two years ago you answered 27 of them correctly. And today you answered 26 of them. So that was pretty good.”
To learn more about the memory support groups, contact Nancy Langman at 508-693-7900 or Victoria Haeselbarth at 508-627-4368. The Supportive Day Program at the Center for Living also provides help four days a week for seniors and their caregivers, Mondays and Wednesdays at the Edgartown Council on Aging, and Tuesdays and Fridays at the Tisbury Council on Aging. Contact Leslie Clapp at 508 939-9440. Windemere Nursing and Rehabilitation Center is beginning a memory cafe today, Feb. 21, from 3:30 to 4:30 p.m. in the recreation room. Contact Mary Holmes at 508-862-1933.