by Sue Ann Rybak
Elkins Park resident Yosaif August’s new book, “Coaching for Caregivers: How to Reach Out Before You Burn Out,” illustrates the benefits of creating a community of care for the caregiver and his/her loved one. “I’ve been fortunate to have been able to utilize what I’ve learned in my life, especially the ups and downs, to help other people” said August, who was a caretaker for both his parents.
A recent study entitled “Caregiving in the U.S. 2009” revealed that almost one-third of adults or roughly 65.7 million people in the U.S. are caregivers. The study found that one in six caregivers said that taking care of a loved one had a negative impact on their own health. Those surveyed said while they needed assistance caring for their loved ones, they also needed help managing their own stress.
August said “Coaching for Caregivers” is designed to show you “how to reach out and let the love flow toward your loved one and you on your own terms and without being intruded upon. We all have beliefs that guide what we do. Sometimes those beliefs support our well-being, and sometimes they get in our way and sabotage us. Nobody can do it alone and still have their health and well-being.”
August, 71, said the things that really harm caregivers in particular are exhaustion, lack of sleep, isolation and stress. The certified life coach decided to write the book after becoming aware of what he calls “caresites” — free websites designed to help caregivers reach out for help. “I got a chance to interview several caregiving families who were ‘superusers’ of caresites,” he said. “Their stories were so compelling, I felt called upon to write a coaching book to encourage other family caregivers to reach out for help.
“One reason caregivers are reluctant to reach out is that they believe their privacy level is going to be zero,” said August, a member of Mishkan Shalom, 4101 Freeland Ave. in Roxborough. “It makes it much easier to reach out when you feel that your boundaries are going to be respected and to be able to tell people what your privacy needs are.”
One of the suggestions August makes in the book is to write a Declaration of Interdependence to give to friends or post on your caresite. Most caresites such as carepages.com, caringbridge.org or lotsahelpinghands.com let you decide whom you want to be able to access your site — only people you specifically invite or anyone who hears about your situation and wants to help.
In the book, August shares the stories of three families and the impact reaching out for help had on their life. For example, Mt. Airy resident Rabbi Phyllis Berman, 72, whose husband Rabbi Arthur Waskow, a world-renowned social justice, peace and environmental activist who was diagnosed with throat cancer almost four years ago, shared her story of how reaching out not only helped her family but also helped to create a “beloved community of helpers” who got the unexpected and exceptional educational experience of studying the Torah with Rabbi Waskow.
“When you really know what you need, it’s simple to ask for it,” said Berman. “The radiation oncologist said that people having radiation to the mouth and throat often had trouble eating, swallowing, drinking, even speaking. His radiation oncologist recommended that he have a feeding tube inserted, and my husband and I were both certain that I could actually prepare food he could eat — and if necessary blend it and liquidize it — so we said no.”
In the brief period following her husband’s treatment, they were going to the hospital almost every day to get a saline solution because he wasn’t eating and had lost a great deal of weight. Berman repeatedly told him, “If you don’t eat, you are going to die,” but he refused to believe it. “In direct encounters, he was not really there,” Berman said. “His eyes didn’t focus. He could barely talk. He lost his voice. He would sit with meals for hours, barely touching it, not drinking. It was the most terrifying experience I have ever gone through.”
Rabbi Waskow finally decided to have a feeding tube put in after listening to the liturgy right after the beginning of the Jewish New Year. The first night after the feeding tube was inserted, they both broke down crying because they realized if he didn’t get the nourishment he needed, he would die. And because her husband was unable to operate the feeding tube himself due to his illness, and she commuted to her job in New York City every day, they needed someone they could depend on to feed him every afternoon.
“After Arthur left the hospital, the nursing service did not plan to come until Monday to show me how to use the equipment,” Berman said. “So what were we supposed to do on Friday, Saturday and Sunday? When the hospital equipment arrived, I didn’t even know how to put it together.”
On Friday night, she and her husband attended a small service for the holidays at a friend’s house.
During the service, Waskow began to shiver and shake. “He hadn’t had any intake of nutrition since 10 a.m.,” Berman said. “I began to cry because I was seeing all the signs I saw before the feeding tube was put in.”
Just then, one of the guests, a nurse Berman didn’t know, offered to go home with her that evening and show her how to use the feeding tube. “It was the most amazing gift in the world,” she said. “The next day, I was able to do it myself.”
While shopping at Weavers Way Co-op a few days later, Berman broke down crying when a friend asked how the holidays were. “Because I was supposed to go back to work soon, and it meant he would be without food for 12 hours. My friend suggested I put a note on the list serve to our congregation. I was shocked when within a half hour at least 12 people had responded to offer help.”
Berman eventually chose five people she did know. Most of the people who responded and all her back-up volunteers were people she did not know. For four weeks, volunteers came once a day to operate the feeding tube and spend time studying or talking with Waskow.
Mt. Airy resident, Rabbi Malkah Binah Klein, one of the volunteers, donated an hour of her time one day a week to feed Waskow. “I think we have this belief that we aren’t supposed to ask for help,” said Klein, 42, who has become good friends with Rabbis Waskow and Berman. “When someone needs something and you are able to provide it, it reminds us that we are all interconnected.”
After the feeding tube was removed, Berman held a dessert party to thank all the volunteers. “It has been a circle of giving and receiving,” she said, “and I was very grateful to be a part of it. It was the most incredible experience; it was a life-saving experience.”
For more information about Yosaif August or the book, go to www.yestolifecoaching.com. The book is available on Amazon for about $15.