When 15-year-old Micah Schwartz plays board games with his grandmother Dorothy, he doesn’t mind if they have to adapt the rules a bit. The important thing is that they are getting to spend time together.
“I always felt a real connection with her because she is really sweet,” said the Parkway North sophomore.
Trying to build and maintain that connection is an issue for many caregivers and loved ones of those living with Alzheimer’s disease or other forms of dementia as they work to interact in ways that enrich the lives of both the patient and the family member alike.
Micah visits about once a week and even played music for senior housing residents as his bar mitzvah project. His father Ken Schwartz noted that it is an example of how relationships can remain just as loving and valuable after the onset of cognitive issues as they always have been.
“You can still have a positive relationship with someone who has Alzheimer’s,” said Schwartz.
That’s one of the messages behind an event set for early next month at Shaare Emeth titled “Shedding Light on Alzheimer’s: A Jewish Perspective: The Journey Continues.”
Broken up into five workshops on the morning of June 3, the Jewish communitywide gathering will explore issues from eldercare law to emotional support for caregivers.
Debra Bryer, early stage manager at the Greater Missouri Chapter of the Alzheimer’s Association, said that each participant will have the chance to select and attend two of the workshops.
“They [have] very practical kinds of information that will help both caregivers and people living with memory loss and people who just want to create a more dementia-friendly community within their congregation,” she said.
Bryer notes that the event will feature an array of both professionals and solutions from caregivers with real-life experience related to the disease.
“I think people make a mistake thinking they can just look up information on the internet or read a book about the disease,” said Bryer, who also happens to be Jewish. “Being a good caregiver or living as best as possible with the disease takes more than just book knowledge.”
She said that one of the dangers of living with Alzheimer’s is the isolation it can cause which only compounds the challenges of dealing with dementia.
“We think it is important for families to get a diagnosis early and to begin to surround themselves with people who understand what they are going through and can support them in positive ways,” she said.
Marsha Grazman, a Shaare Emeth and Central Reform congregant who was involved in the first version of the event two years ago, said it is vital to inform oneself to deal more effectively with the issue.
“In the Jewish community, there is a lot of stigma and lack of information,” she said. “I’m an educator by training and to me, to understand something you have to learn about it.”
The University City resident’s late husband, Ted, died nine years ago after living with early onset Alzheimer’s. She said it was important to let people in the community know that there is life after diagnosis and she wants to present more than just statistics.
“We need faces on people that we know in our community who have lived with this or are living with it and have a story to tell,” she said. “It is all about stories.”
Not-for-profit vendors and other resources will also be available at the event.
Grazman, a former Shaare Emeth educator and founding head of the former Saul Mirowitz Reform Jewish Academy (forerunner to the Saul Mirowitz Jewish Community School), said that fear and shame can sometimes discourage people from seeking help.
“When symptoms appear, they need to get to a physician,” she said. “The earlier you can get care, the better. There is a whole network of support for care partners, their families and themselves.”
Galia Movitz agrees. When her husband Milton began exhibiting symptoms of unusual confusion five years ago, the couple was quick to get a diagnosis and find treatments that could slow progression of the illness. They also found a very supportive physician.
“He really helped medically and emotionally as the disease progressed,” she said.
Movitz said that facing the diagnosis early allowed she and her husband to plan ahead, which made it less overwhelming as she transitioned to taking over more of his responsibilities.
She also found it helped to learn more about the disease and what to expect.
“The more educated you get yourself about what to look for and how to react to certain situations will make it easier as a caregiver,” she said.
The Ladue couple will celebrate their 35th anniversary this month. Galia Movitz said that she works to remain upbeat and positive, relies on friends to help out and she also draws comfort from their rabbi, B’nai Amoona’s Carnie Rose.
She also said that one of the best ways she’s found to deal with the progression of her husband’s Alzheimer’s is to remember how much she loves him and the wonderful times they’ve had together.
“What helped me the most to cope with it is to really center on the heart of the person behind this disease,” she said.
Ken Schwartz said that the upcoming event is meant to provide understanding.
“The goal is to help others that are out there who are going through this same thing and try to shed some light and make it a positive situation,” he noted.
He said that 98-year-old Dorothy, who takes no medication for her condition, finds Micah’s visits just as meaningful as Micah himself.
“It is really a beautiful relationship that they have,” he said.