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November 18, 2008     Cape Gazette
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Health & Fitness Cape Gazette TUESDAY, NOVEMBER 18 - THURSDAY, NOVEMBER 20, 2008 27 I Tender care inspires hospice patient The National Hospice and Palliative Care Organization declared the theme of this November's National Hospice Month to be Hope, Dignity, Love...It must be hospice, to remind the community that hospice care brings hope to help people live life as fully as possible, offering dignity when there is not a cure and surrounding families with love during life's most chal- lenging times. Doris Nussbaumer turned to Delaware Hospice for strength and independence but also found hope, dignity and love. Nussbaumer managed her own business and was a single parent for many years until Bob, a popular salesman, lin- gered in the office one day. "Doris, you've been single all these years. I'd like to con- vince you that there are some decent men around." She agreed to go on a date, and a short time later they were married. They spent several years together, along with Doris' children and Bob's two children, until Bob died from congestive heart failure. Dr. Jose Pando had been the SUBMITTED PHOTO DORIS NUSSBAUMER MADE NEW FRIENDS during her brief stay at the Delaware Hospice Center. Shown are (br) Sharon Chransowski, registered nurse; Nussbaurner, and Brittany Johnson, certified nursing assistant. Nussbaumers' family doctor for many years. "One day he hit me pretty hard with the reality of what my future would be with my lung and heart condition," she said. "He said, 'Doris, you can't continue to carry on alone. I know you think you can, but you can't. You need to get over your stubborn Scotch blood and realize that you will have to give up your home.'" Nussbaumer realized Pando was right. "Of course" I told him what a lousy doctor he was, to be so depressing, but he just put his arm around me and said, 'I know, but when you go home and think about it, you'll want to prepare your family for what's ahead of them.' 'tHis nurse understood how upset I was and called me that night to suggest I call Contiml on imp  Fried Mail and Refrigerated Slacks )) Couple learns to live with husband's dementia diagnosis This is the first installment in a two-part series onfrontotemporal dementia. fter many years of marriage, most cou- ples know each other well In the best of worlds, with emptying nests and retirement, they begin to realize their dreams and look forward to the golden years. Meet Mary and Allen, who re- tired early to manifest their dreams of living out West, trav- eling throughout the United States, Canada and Europe, spending time with 15 grandchil- dren and giving back to the com- munity. For 12 years, those dreams were on track. Then in Novem- ber 2005, Allen began doing pe- culiar things. One morning, he rose from bed at 3 a.m. to set the table for eight." for Mary and himself and their six children, all of whom are middle-aged adults living elsewhere with their own fami- lie Another time, Allen removed all the clothes from his closet - and put them in the refzigeraton Mail went into the oven. Debit and credit cards went missing. Allen began forgetting important events, how to get to and from familiar places, and names. He knew Mary as his wife but couldn't come up with her first name. Normally easy- going, Allen suddenly became easily agitated and quick to anger. The oddest thing was he did- n't seem to understand how dis- turbing his behavior was to Mary or their family. What neither of them knew at the time was that Allen's behav- ior vas an early manifestation of frontotemporal dementia (FTD), characterized by loss of impulse control abrupt, out-of-character changes in behavior and apathy. The consequences of undiag- nosed FTD can be dire. As the disease progresses, so does the severity of the behaviors. With- out diagnoses, individuals may be arrested for aggressive behav- ior, develop substance abuse or gambling problems, or lose lov- ing marriages. At fast Mary explained away his behavior as a response to the duress he was under as a result of the sudden death of his broth- er and, within a year, the deaths of his mother and sister from cancer. But as time passed and his behaviors did not abate, Mary was forced to consider other, more disturbing possibili- ties. Allen and Mary consulted their primary-care physician, an esteemed clinician at Mayo Clin- ic and a friend. At fast, she treated Allen for depression. When his behaviors did not stop, she ordered tests to rule out stroke, brain tumor, aneurysm and B12 deficiency. When these tested negative, she ordered magnetic resonance im- aging, blood work and fmally, neuropsychological testing. In early 2006, Allen was diag- nosed with FTD. Mary's fast reactions to the diagnosis were sadness and re- liefi sad because FTD is a degen- erative, incurable disease - re- lieved because the affliction had a name. As a former paralegal, she dove headf'ast into researching FTD. She joined an Alzheimer's support group for caregivers. Alien understood that as the one with FTD he would be spared the awareness and heartbreak of losing the intimacies of his for- mer life. He cried for Mary. "I'm not upset for me," he said to her. "Fro upset for you, because this diagnosis is hardest on you. You are going to be the one who will watch this." How does a couple deal with such a prospect? Allen and Mary are known for their love of the off-road adventure, and this is how they are approaching this disease. They embrace their doctor's challenge: "You can do everything you always did, just differently." Mary came up with the slogan, "It's not Alzheimer's, it's Optimizers: Optimize strengths and minimize weak- nesses." As they commit to each other through this disease, they draw generously and always on humor. Based on Mary's research, she and Allen devised a daily agenda to optimize Allen's strengths in all areas - spiritual, physical emotional and social - as he moves through the three stages ofgrD. Their intent is to keep Allen living at home and living with dignity. In this early stage, Allen is working an exercise program, participating in brain exercises and doing volunteer work. Be- cause the left frontal lobe is un- affected by FTD, it's possible to tap into creativity as never be- fore. As such, Allen is writing a novel, a lifelong dream. Allen speaks it into a recorder, and Mary transcribes. In Part 11 of this series, Mary and Allen visit an adult day pro- gram and get the word out about FTD and support for carevers. Susan Graves, MS, is a certifild nursing assistant for Compassionate Care Hospice and a freelance writer. She may be reached at sumlaim.