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A devastating disease: Local initiative provides educational resources, communal support for Jewish families dealing with Alzheimer's
After an early December meeting of the Twin Cities Jewish Alzheimer's Task Force, at Temple Israel in Minneapolis, Carol Shapiro mentioned that she has been caring for her husband, Alan Shapiro, who began showing symptoms of early-onset Alzheimer's disease at the age of 51.
At the age of 56, and after undergoing several MRI tests, Alan was diagnosed with Alzheimer's.
It has been a difficult time, to say the least, for the Shapiro family.
A track star at St. Louis Park High School, Alan Shapiro was a state champion in the one-mile relay. He went on to run track at the University of Minnesota. Shapiro earned a law degree from William Mitchell College of Law, and worked as a prosecutor for the city of St. Paul, before founding Shapco Printing in Minneapolis, with his brothers Joel and Bob.
At some point, according to Carol, Alan began to realize that he was losing his ability to multi-task, which she referred to as "executive function." He apparently realized that he was suffering from an organic problem, and tried to cover it up, said Carol, during a recent phone interview with the Jewish World.
"He didn't talk about that," Carol recalled. "Totally, with me, the manifestation was a change in personality. I think he was just very frustrated."
Alan also began having chest pains, and had a stent put in, which was followed by two angioplasties. Carol said that her husband's anxiety mounted after the heart procedures.
When Alan was diagnosed, Carol became "very involved" with the Alzheimer's Association. "There were no Jewish support groups at the time," she said. "In early stages, I think people don't totally know how to deal with somebody who has Alzheimer's."
She commented that people tend to believe that those with early onset Alzheimer's "have no memory," which is not necessarily the case. And even if someone can no longer work, "they still need to be involved in society" and have something to occupy their time.
In her husband's case, Shapiro had to search for programming - again, there was nothing available at the time in the Jewish community. Alan Shapiro was enrolled in a program for folks with early onset Alzheimer's. It met for five hours once a week.
Jewish resources locally have improved in the years since Carol Shapiro was searching for a program to serve her husband's needs. The St. Paul JCC hosts the Living Well program - in a partnership with the Alzheimer's Association of Minnesota-North Dakota and the Wilder Foundation - which serves those with early memory loss and their caregivers.
However, the Living Well Program is not meant for people like Alan Shapiro, who is in the late stages of Alzheimer's.
Carol said that she provided around the clock care for her husband for a year and a half, but his situation became progressively more difficult to manage.
"He'd all of a sudden forget how to get in or out of the car, and it could take me 20 to 25 minutes to get him in and out of a car," she commented.
"Physically, he's in great shape," Carol said. "He still has anxiety and fears, and when he gets scared, he collapses."
She used to be able to calm him and get him back on his feet after a collapse; but the process of getting him back up now takes three people. Carol moved Alan to Breck Homes in Edina; he is 64, and has been a resident there for nearly three years.
Carol Shapiro is a member of the Twin Cities Jewish Alzheimer's Task Force. She provides a caregiver's perspective to the group. Another task force member, Sumner Richman, is also a caregiver, for his wife who has Alzheimer's.
Since the Jewish World last reported on the local Alzheimer's task force (2-1-13 AJW), the group has completed about 65 surveys with "people within the Jewish community," said Annette Sandler, who works for Jewish Family and Children's Service. "Those are tools that this group actually helped to develop for the [Minnesota] ACT on Alzheimer's Web site. We interviewed all of the clergy, in all of the different denominations."
Sandler - who serves as the Jewish Alzheimer's Task Force co-chair, with Chris Rosenthal, of Jewish Family Service of St. Paul - said the survey also talked to those working in residential programs, Jewish adult day programs, Jewish transportation programs, social services and caregivers.
Jeffrey Sherman, Sholom community liaison, added that those working in "all levels of senior residential care," including assisted nursing, were surveyed.
Sandler explained that all of the survey data were entered into the "tool that is on the ACT on Alzheimer's Web site… the synthesizing tool. With that data we came out with our community priorities: Where are there gaps in services and what should be the highest priority of initiative that we should be doing within the community? The highest priority that we came out with is that the rabbis needed and wanted training on how to talk to people with the disease, when to intervene with people that they notice might have a problem, how to intervene and how to make appropriate referrals."
The task force has applied for a grant to accomplish its next steps, which include a caregiver conference to take place in the spring of 2015, and a youth education program. Josh Kelner, a younger member of the task force, said that his peers need information about dealing with their grandparents, or parents, suffering from the disease.
With input from the task force, dementia and Alzheimer's disease attained a higher profile at the Twin Cities Jewish Community Annual Conference on Mental Health, on Oct. 13 at Temple Israel. Task force members Rita Kelner and Judy Witebsky led a session on caregiver support, and Eilon Caspi, Ph.D., facilitated a workshop on Alzheimer's disease and related dementia.
With the synagogues, rabbis at both Bet Shalom Congregation and Mount Zion Temple delivered Yom Kippur sermons on aging and dementia. And those shuls, along with Temple Israel, have established Alzheimer's support groups.
"I think what's happened in the last year is that doing the surveys really focused us on what are the needs of the community," and helped "coalesce our ideas and encourage us to do the action in these different ways," Sherman commented.
Sandler mentioned that another outgrowth of the task force's work is that Adath Jeshurun Congregation will be hosting a film series on Alzheimer's this summer.
There was a discussion about broadening the task force membership, because more volunteers will be needed for the varied projects in the works.
"The passion of the people on this task force, it propels our work at such a fast rate," said Sandler. "There is a lot of passion at this table."
Carol Shapiro thinks that the Jewish community can do more for families dealing with Alzheimer's.
She remarked that the family kept Alan's Alzheimer's diagnosis "a secret from friends. Our immediate family knew, but we had kept it a secret for a little more than a year, and that was really, really hard on me."
The family belongs to Temple Israel, and Carol talked to Rabbi Marcia Zimmerman about Alan's disease.
"Rabbi Zimmerman told me that he will lose his memory, but he'll never lose his soul. That statement has always helped me, especially now when he's in these late stages of the disease; because I can still see the person that he was."
For information about the Twin Cities Jewish Community Alzheimer's Task Force, contact Annette Sandler at JFCS at 952-542-4866 or: asandler [at] jfcs [dot] org; or Chris Rosenthal at JFS at 651-690-8920 or: crosenthal [at] jfssp [dot] org.
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