‘Are we just taking really great care of him and getting him in tip-top physical shape so he can get full-blown dementia, where he doesn’t recognize me or the dog?’ Jo Giese poses this question to the doctor of her ailing husband, a patient with no hope for recovery from a disease causing severe mental decline. This is among many agonizing issues raised in ‘A Caregiver’s Diary,’ a 30-minute documentary Giese created to air on National Public Radio the weekend of July 16. Following her instincts as a journalist, Giese began recording conversations with her husband, with doctors and with friends during the last year of his life. The result is an exceedingly intimate and honest portrait of the despair and uncertainties faced by a wife caring for her dying husband. Dr. Douglas Forde was a physician who practiced in the Palisades for over 25 years, retiring in 1991. He suffered from multi-infarct dementia, a condition related to Alzheimer’s disease that causes a steady loss of memory due to small strokes. Forde required round-the-clock caregivers for the last 13 months of his life, time which he spent mostly in and out of a hospital bed in the living room of the couple’s Malibu home. He died at home last February. ‘It’s work I never wanted to do,’ Giese said during a recent interview with the Palisadian-Post in the light-filled beach home she once shared with her beloved spouse. ‘But taking care of my husband while he was dying is the most important work I’ve ever done.’ Giese first began her ‘audio diary’ with no clear purpose in mind other than to help her endure the trauma of her ongoing plight. It was only later that she realized it had the potential to help many others who are in the same situation. ‘It’s by far the most personal story I’ve ever done,’ says Giese, who is accustomed to looking inward as a writer and public radio correspondent. Her award-winning series ‘Breaking the Mold’ ran for three years on pubic radio’s ‘Marketplace,’ where ‘Life on Fire,’ her ongoing series about a family who lost everything in last year’s devastating fires, is currently airing. According to a recent ‘Newsweek’ article, Americans in 20 million households are looking after loved ones who are ill. Giese’s documentary touches upon many of the issues these men and women face. ‘The emotional and financial toll is staggering,’ says Giese, who had six caregivers rotating in and out of her home at a cost of $1,000 a week. The psychological price’giving up any semblance of privacy’was especially high, with Giese posting a ‘No Entrance, Please Knock’ sign on her bedroom door after one too many intrusions. ‘I was really running a mini-hospital,’ Giese says. ‘I couldn’t do it without them, and I couldn’t do it with them.’ Early on in the documentary, Giese makes it clear to a prospective caregiver just what their respective roles are: ‘Whoever I hire here is responsible for his care, but I’m responsible for his life.’ Throughout her husband’s illness, Giese never felt comfortable traveling a distance more than 20 minutes from home. Caregivers loomed large in Giese’s constricted household and consequently they emerge as major players in the documentary, with listeners getting to know people like Siony, a 53-year-old woman from the Philippines who had once been the beautician to a Saudi Arabian princess, and Viki, 27, a Bulgarian with a master’s degree in economics hoping to get her green card. Douglas Forde had stipulated in a medical directive form his desire never to be placed in a nursing home. ‘As a physician, he had been in those places hundreds of times,’ recalls Giese. ‘He didn’t want to do it.’ Had her husband lived and the disease progressed, Giese likely would have had no alternative. ‘The literal cost, combined with the emotional and psychological toll, is simply too great,’ she says. Giese heaps praise upon her collaborators, producer Wendy Dorr and Ira Glass, host and producer of NPR’s ‘This American Life,’ the show that will air Giese’s documentary. ‘Originally the focus was on caregiving,’ Giese remarks. ‘Ira has a genius for making things intimate and he brought the focus back to the relationship between me and my husband.’ That relationship is captured in the gentle, patient tone Giese has with her husband despite his often gruff demeanor, something brought on by the illness and medication. Giese used small white boards to remind her husband of the names of his caregivers, a sad irony given his former ability to not only remember all his patients’ names but also their telephone numbers. At its core, the piece is a heartbreaking love story on tape, one that allows the listener to bear witness’from a wife’s perspective’to the slow deterioration of a once brilliant and funny man. ‘He was the best listener ever,’ Giese fondly recalls of the man with whom she spent 17 years. ‘It was a rare privilege to live with him.’ Giese feels the process of editing the documentary has helped her grieve. ‘I’m drowning in it all over again and it’s all out in the open. ‘I have a Buddhist perspective in that I believe you can take suffering and turn it into something positive. That’s the blessing in my life. I’m able to do it again and again.’ With a laugh, she adds ‘But a little less suffering wouldn’t be so bad.’ ‘A Caregiver’s Diary’ will air on NPR’s ‘This American Life’ Friday, July 16 through Sunday, July 18. Check local radio listings or visit www.thisamericanlife.org for times.
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