Who cares for the caregivers?

A new book offers help to those who might be feeling overwhelmed.

By
March 26, 2006 05:17
helping hand

elderly senior 88.298. (photo credit: Ariel Jerozolimski)

 
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With chronic disorders taking over from infectious disease as the cause of death, and average life expectancy tipping 80, more and more physically and mentally disabled people need to be cared for. And the caregiver - who is often already overwhelmed by family and work responsibilities - is usually a woman. Numerous books have been published about "care giving" - an old phrase based on the empathic concept of "caring" that has been given new meaning by the demands of long-term illness. Titles have ranged from Caring for Your Aging Parents (by Donna Cohen) and Caring for People from Birth to Death (by James Hightower) to A Carer's Guide to Schizophrenia (by Greg Wilkinson) and A Place of Healing : Working with Suffering in Living and Dying (by Michael Kearney). Other authors, such as US surgeon Dr. Bernie Siegel, have promoted the idea of a mind-body connection, and how emotional wellbeing can promote the healing process even in cases that seem hopeless. But the Jewish angle on caregiving and the psychological influences on disease and recovery has been absent from this growing library. Now Naomi Brudner, a New Yorkborn psychologist who moved to Jerusalem 28 years ago, has filled this vacuum with Caring: A Jewish Guide to Caregiving. The 269-page, $22 volume, just released by Jerusalem Publications and distributed by Feldheim, will appeal especially to the observant and the traditional, but may also strike a chord in those who are completely secular. AS THE VOLUME is aimed at Orthodox Jews, it includes rabbinical endorsements. Among those who commend Brudner are Dr. Abraham Twerski, a well-known American Orthodox rabbi and physician involved in drug addiction; Israeli yeshiva head and moshav rabbi Zev Leff; and Rabbi Avraham Gross, past chaplain of New York's Columbia Presbyterian Hospital. Dr. Ezra David Shapiro, chief of geriatric rehabilitation at Jerusalem's Shaare Zedek Medical Center who daily cares for the frail, adds his approbation: "I have been privileged to marvel time and time again at the love and devotion of family members, volunteers and friends toward these seriously ill people. One family organized themselves into shifts to attend to their father, who had been stricken by a severe stroke, and continued their vigils for over a year, day and night, seven days a week," he wrote. "Rather than being overwhelmed, resentful or desperate, many of these caregivers felt themselves uplifted, exuberant and even able to be supportive of fellow caregivers and medical staff. These exceptional individuals shared one common feature - they all had deep spiritual roots with a clear understanding of the simple but profound basis of Jewish belief." Shapiro continues that in her book, Brudner "allows all of us who aspire to achieve the healthy exuberance of these rare souls to internalize the fundamental concepts of Judaism that enable us to act with lovingkindness despite hardships. In an era when at least a third of the spouses who care for a partner with Alzheimer's experience clinical depression, and research confirms other signs of acute or chronic psychological stress in many caregivers, we stand in sore need of tools to maintain our physical, emotional and spiritual vigor." Brudner, a graduate of Yeshiva University's Ferkauf College of Social Work and an author who also lectures, teaches and counsels privately, recalls that when she studied psychology, she wanted to do her master's thesis on the mind-body connection. Her supervising professor advised against it, calling it "a waste of time." Looking into whether there was a correlation between early childhood experiences and adult susceptibility to illness, she found that indeed the results showing a definite relationship between the two were statistically significant. The author also had personal experience in caregiving when her late mother was hospitalized with a lifethreatening illness. After ending what "seemed like the thousandth visit" to her and getting into the hospital elevator - standing with other relatives, staffers, caregivers and visitors - she thought that "when we remember that everything is from [God] and for the good, and that everything is in His hands, we take on our challenges without regret or self-pity. This awareness also allows us to relate to those to whom we give our care with true love and respect, knowing that they are not an external burden or coincidence that happened to have fallen into our life, but rather an important, intrinsic part of our life, the life that [God] is supervising with love and kindness. Yes - we, the patient and [God] are partners in this together. And we must also always remember that our divine gift of health does not make us superior to those experiencing the divine test of illness.... Let us open our eyes and hearts and be grateful for the ability and opportunity to care and to help." OFFERING NUMEROUS anecdotal stories (presented in italics) from caregivers she has interviewed, Brudner warns caregivers not to feel guilty. One woman relates that when her husband was diagnosed with lung cancer, she was distressed by the thought that she hadn't done enough to get him to quit smoking. She berated herself, but then realized that even if she had pestered him more, he probably wouldn't have kicked the habit. Others may feel guilty for not insisting that a dying relative go to another doctor for a second opinion. "Such thoughts and feelings," writes Brudner, "can tear the heart and overwhelm the mind of the person who feels responsible or guilty to any degree for someone's illness or disorder." But blaming oneself for another person's illness -when it is the result of his actions - is misplaced. Throughout the book, Brudner says that the test of a caregiver is hishtadlut - doing one's best - and no more. Caregivers must also learn when to say no. She tells the story of a woman whose father was in a nursing home. When he refused to take his heart medicine, the staff called and asked her to come and persuade him. Even though she was the mother of several young children, the oldest 11 years old, she decided against her better judgment to leave the older kids to take care of the younger siblings and rush by taxi to the nursing home. She managed to get her father to down the pills, but when she returned home, she smelled smoke coming from inside the apartment: The heating unit had caught fire due to a bird's nest blocking the vent, sending toxic fumes into the flat. Fortunately, the children were saved from asphyxiation by firemen. Although she has met doctors and nurses who have been so kind and caring that they were "almost angels," Brudner rails against medical staffers who treat the patient and his family mechanically, offering not even a sliver of hope. Caregivers quoted in the book said they were despondent when hospital staffers waved them off with "I don't have time to talk to you now," or "He's very sick; I already told you that!" One caregiver recalled that when she asked the doctor about her mother, he answered condescendingly: "She may be a little better or a little worse one day or the next, but it doesn't really matter. Her condition is very serious, and there's no likelihood that there will be a significant improvement." When a caregiver hears such a statement, she advises, remember that doctors are "only people... But only [God] is [God]... Whenever appropriate, take the staff with a grain of salt because they're only people, and often very limited people at that." As hospitals are often overcrowded and understaffed, mistakes are made from time to time, so caregivers should be alert. Questions should be asked about medications and dosages, says Brudner, and if the staff are parsimonious in supplying information, there are pharmacists, other doctors and the Internet. MAKING HOSPITALIZATION more pleasant by bringing familiar objects from home, setting down a vase of fresh flowers or rubbing a patient with pleasant-smelling lotions are also useful tips. She offers advice in dealing with difficult relatives, helpless children, Alzheimer's patients who don't know what hurtful things they're saying and seeking paid help before the caregiver collapses. How to relate to caregivers, especially by not saying the wrong thing, is also explained. Effectively visiting ill friends and acquaintances for whom you don't have personal responsibility is covered. "A lot of people can't face sickness or death, so they try to avoid it," says one person she interviewed. "But no one has insurance to guarantee that they themselves won't be in that same situation. It's so painful to see people ignoring the sick. It makes the sick person feel as if his life is over, as if he's nothing, no one." She reminds visitors to a relative in hospital not to ignore other patients in the ward. "Your main focus is going to be with the person you have come to visit, but smiling and saying hello is easy to do; takes almost no time; and is almost always welcome." The book can be obtained by e-mailing nbrudner1@neto.bezeqint.net or calling (02) 654-0089.

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