Spotlight: New book helps families cope with Alzheimer’s

By: Rabbi Rachel Esserman

Rabbi Michele Medwin. D.Min., knows from personal experience just how difficult it can be when a member of your family has Alzheimer’s disease. “My dad had suffered with Alzheimer’s dementia for 10 years,” Medwin said in an e-mail interview. “Those years were very challenging for my family.”
When Medwin was in school for her doctorate in clinical and pastoral counseling, one requirement was to write a thesis on a topic that would help people emotionally and spiritually. Medwin decided the perfect subject was Alzheimer’s: “I knew that Alzheimer’s disease was widespread. Everyone knows someone who has it or has a family member with it. I wanted to help other people in the same situation I was in. I decided to edit the thesis and turn it into an easily accessible book for the public.” The result is her new work, “Alzheimer’s Families: Emotional and Spiritual Tools for Coping” (CreateSpace Publishing).
Researching and writing the thesis gave Medwin a better understanding of the disease. “Before I researched the topic, I believed that Alzheimer’s was mostly a disease of memory loss,” she said. “My father showed other symptoms such as behavior changes, apathy and lack of social filters, but, somehow, we always took them personally and didn’t really connect them to the disease. We may have known intellectually [the changes were part of the disease], but not emotionally.”
It was important to Medwin that her book on Alzheimer’s not be limited to an academic audience. “My goals in writing this book are to help ease the stress and suffering of Alzheimer’s families with information that can be helpful,” she said. “It explains all of the symptoms related to the disease in an easily accessible manner and [shows] how different stages of the disease create different reactions among family members. Some of the research I found [suggested] coping tools that are most helpful, including reframing the situation, positive thinking and acceptance. This is easier said than done, but it is helpful to be aware of these ideas. There is also a section on spirituality, including specific Psalms, readings and prayers for those who would like such resources.”
Another resource Medwin found useful was a private Facebook group called Memory People. People have to apply to see the page, but all that’s needed is to either know someone with Alzheimer’s, be someone with Alzheimer’s or be interested in helping people learn more about the disease. “It was started by a man, Rick Phelps, who has early onset Alzheimer’s,” Medwin said. “He shared many of his thoughts in a blog so people would know what someone with the disease experiences. He explained that whenever people ask ‘why?’ about behaviors in someone with Alzheimer’s the answer was, ‘It’s the disease. It is always the disease.’”
Medwin feels the information she covers in “Alzheimer’s Families: Emotional and Spiritual Tools for Coping” will be useful not only for families, but rabbis, counselors and other members of the Jewish community. “One of the biggest challenges that Alzheimer’s family members face is that they suffer in silence and get little support,” she said. “Usually when a person with Alzheimer’s is out in public, they find a way to gather their strength, in the early and mid-stages, to appear relatively normal. Friends and family members [who] are not so actively involved have no idea what the immediate family is going through.”
She believes the book will help people learn how to be more supportive of those families. “My mother would bring my father to synagogue because it was comforting to him,” she added. “Since he had no social filters, he often said things that might be considered rude. She stopped taking him because she was embarrassed. If the congregation were educated, they might be more accepting.”
In addition, understanding the stress the disease places on family members will be useful to professionals in the counseling field. “Often the stresses come on so slowly that a family member may have trouble expressing what is bothering them,” Medwin said. “One of the most common mental health diagnoses of family caregivers is depression. Research has shown that the issue is loss and grief, rather than depression. This requires a different counseling approach.”
Medwin said she wishes she’d known more about Alzheimer’s when her father was alive. “It would have helped us to ease the stress and frustration,” she said. “My mother-in-law, who also has Alzheimer’s dementia, is still alive. The information I learned from the research helped us to overcome a very difficult time of the disease stage she was in.”
Writing her book has helped Medwin in other ways. “I believe that the personal experiences I had, and the information I learned, helps me to be more empathetic and understanding to those I counsel and give them the best advice possible for their specific situation,” she noted. “As a child of a parent [who had Alzheimer’s], it helps me to remain more objective and not get caught up in the emotional turmoil as much. I have a much better understanding of why my mother-in-law does what she does.”
For more information about “Alzheimer’s Families: Emotional and Spiritual Tools for Coping,” visit Medwin’s website at https://www.rabbimedwin.com/alzheimer-s-families.html.