New app gives hope to caregivers of loved ones with Alzheimer’s disease

By Shelley A. Sackett

PR-Alix-Segil-OnLeftSide-and-Debby-Segil-Smiling-Holding-App-2-1024x591

Alix Segil and Debby Segil

 

Debby Segil was home in bed with the flu. Rather than using the time to pamper herself with comfort food and old movies, the 89-year-old pint-sized dynamo seized the opportunity to do what she loves best: helping others.

As a licensed independent clinical social worker with 40 years of experience, Segil is used to thinking about ways to support those in need. On this particular wintry day two years ago, her thoughts turned to home caregivers of loved ones with Alzheimer’s disease or dementia.

“No one has taught them dementia’s ABCs, so they make lots of mistakes,” she said. “They still think they can explain things. They think they can reason with someone.”
A member of Temple Emanu-El since 1965, Segil feels she is carrying on her mother’s legacy of caring. “She always cared about welcoming newcomers in the Jewish community in Hazelton, Pennsylvania, where I grew up,” she said.

Segil knows what a difficult and lonely job it is to care for someone with dementia, especially at first. As program manager of the Family Caregiver Support Program at Greater Lynn Senior Services (GLSS) since its inception 15 years ago, she has had caregivers tell her over and over again, “This is such a difficult job. I don’t know if I can do it.”

So she decided to write a poem that could give these family caregivers something to prepare them from the beginning by helping them relearn how to interact with their loved one so they could both get along.

Knowing that a pneumonic device helps people of all ages learn and retain new information, Segil distilled her advice to a mantra of five words – distract, divert, and then agree – which became the refrain in her five-stanza poem.

Once she finished the poem, Segil thought, “Wouldn’t it be better if we could set it to music?” So she contacted her friend, Rick Goldin, who writes and sings children’s songs. “I thought he would be perfect because he would write a nice, easy tune,” she said.

Goldin made a recording of their “Caregiver Ballad” and Segil brought it to some people at GLSS. They loved the song and suggested developing an app that would provide a toolset for dementia caregivers with the ballad as its anchor.

A development team was created to shepherd the project from concept to Caregivers Matter, a free app. Team members Katherine Prouty, product manager, and Larry Ehrhardt, application developer, are both Marblehead residents.

So is Alix Segil, Debby’s 18-year-old granddaughter who helped with the website caregiversmatter.org as her Marblehead High School senior project. Although the two live in the same household, their lives rarely intersected in the “real world” until Debby suggested that assisting in creating the app was a perfect way for Alix to combine her technology savvy and love of helping people with the requirements of her senior project.

Working with her grandmother was a real eye-opener for Alix, who will soon be a freshman at Ursinus College in Pennsylvania. “I know she’s a hard worker because she’s always working at home,” she said of her grandmother. “Seeing her in the office, running around all day going to meetings, I realized she has a really long day. Like, every day.”

Like her grandmother, Alix credits her Jewish upcoming with instilling in her a sense of tikkun olam. “Being Jewish, I’ve learned you’ll always have a community to go to. The app helps make sure caregivers don’t feel alone in what can be a lonely job,” she said.

Released in June, the free app currently works on Apple and Android systems, with Kindle on the wish list. Its menu revolves around the ballad and a toolset Segil developed for GLSS with the help of a grant from the Massachusetts Office of Elder Affairs.

Pep talks, activities, and tips for getting through the day are on the app’s tabs, as well as a link where caregivers can learn more about dementia and also share their ideas and feedback.

“People need to know that they are not alone, that there are ways to make the caring easier,” Segil said. The app helps them remember the importance of also caring for themselves by relaxing, refocusing, and regrouping.

The app has received positive feedback, including from a friend of Segil’s whose husband passed away from dementia 10 years ago. “She told me that at that time, she had no confidence that anything could be better or that she could do anything differently,” Segil said. “She said this app would have been so meaningful to her because it gives hope.”

For more information, visit caregiversmatter.org.

Advertisements

Sherman-Goldman wedding : A theme of beauty

By Shelley A. Sackett

Goldmans

Arlene “Leni” Sherman and Harvey Goldman at their wedding.

 

Arlene “Leni” Sherman wasn’t looking to start a relationship when she accepted a friend’s invitation to join him for dinner with his male dining club. He was curious to hear her “woman’s perspective” about the group. The Malden widow thought it would be a fun night out and nothing more.

Her friend called her back, asking if it would be OK with her if one more person joined the group. He told her she might know him since he too was from Malden. His name was Harvey Goldman.

“I said, ‘Of course I know him. My mother went to his bar mitzvah and his wedding,’ ” Sherman said.

Goldman remembered her too. He called and asked if she wanted to catch up before the dinner. “I had no inclination that we would date. I thought we were just getting together to schmooze and figure out what was going on in our lives,” Sherman said. Instead, the two really hit it off and that night turned into the beginning of the rest of their lives.

That was over 10 years ago. With three grown children and seven grandchildren between them, the couple decided it was time to make their relationship legal “for the sake of the grandchildren.” But at their ages, neither wanted a traditional – or typical – wedding.

The couple love musicals and are regulars at North Shore Musical Theatre in Beverly. “It’s one of the things we really do have in common,” Sherman said. Out of the blue, she put two and two together: What better way to celebrate the blending of their multigenerational families than at the theater?

When she ran the idea by Goldman, he was totally on board.

They checked NSMT’s schedule and realized the last matinee performance of the love story, “Beauty and the Beast,” was Sunday July 31. They confirmed with their rabbi, Rabbi Robert S. Goldstein of Temple Emanuel in Andover, that he was available to officiate. Suddenly, they not only had a wedding venue, they also had a ready-made theme. “It was bashert,” Goldman said.

When they went to the theater, general manager Karen Nascembeni and the NSMT staff helped turn their dream into a reality. They bought a section of the 1,800-seat theater so their more than 100 guests could sit together. “After all the whole thing of ‘Beauty and the Beast’ is ‘Be our guest! Be our guest!’” Sherman joked.

unnamed-1

Nascembeni helped the couple with all the logistics, including hiring Essex caterer Timothy Hopkins. The traditional Jewish wedding ceremony took place at noon in a large rehearsal space with a chuppa of yellow roses adorned with a single red rose, representative of the Beast’s enchanted red rose under glass.

For the bride and groom, however, while the theme was fun, the most important part of the day was family. “All our children and grandchildren were in the ceremony,” Sherman said.

Officiating a wedding at a musical theater was a first for Rabbi Goldstein. Although most of the weddings he has conducted over the course of his career have been in synagogues, he believes that wherever a wedding takes place, the affection that the bride and groom have for each other, and the warmth and sincere love the guests have for the couple, transforms wherever the ceremony takes place into a holy and sacred space. “Harvey and Leni are blessed. There was unbridled happiness in the room,” he said.

After an hors d’oeuvres reception, all the guests strolled across the garden area into the theater for Act One. At intermission, they returned for more noshes. After Act Two, they enjoyed an ice cream sundae bar and other desserts and drinks.

Sherman, a retired Brandeis University administrator, took the “Beauty and the Beast” theme seriously, coordinating decorations and décor. Like Belle, she and her bridesmaids wore yellow. And, like the Beast, Goldman wore blue. Each guest received a red rose as they entered the theater.

Although delighted by his themed wedding, Goldman admits it was all a little more than they originally anticipated. “The whole idea of this was for us not to be the center of attention,” he said with a laugh.

Striking a more serious note, Goldman, who owns Goldman Funeral Chapel in Malden with his son, Jay waxed philosophical: “One thing I’ve learned in this line of business is that we only have one shot. We never know what tomorrow’s going to bring. You don’t want to live your life saying, ‘Why didn’t I?’”