Insights and Loving Thanks From a Family Member
2011; Elsevier BV; Volume: 12; Issue: 5 Linguagem: Inglês
10.1016/s1526-4114(11)60121-2
ISSN2377-066X
Autores Tópico(s)Palliative Care and End-of-Life Issues
Resumo“Between Yesterday and Tomorrow,” Sarah Rowan titled the Anne-Marie Filkin lecture she gave during Long Term Care Medicine – 2011. In her talk at a conference general session, she related stories of living in the moment with her husband with Alzheimer's disease. She told the long-term care professionals before her, “I come as one who already knows about you and how you give bad news in a beautiful way.”Ms. Rowan shared her journey as a caregiver and partner to her husband, who died after living with Alzheimer's disease at home and then in a nursing facility. She thanked her audience for their good work and said, “You were born to love and share that love through compassion for those who are hurting.”A long and joyous relationship with her husband began when they met in Germany, married, and moved to Ohio. Ms. Rowan worked as a first-grade teacher, and her husband, Dr. Joseph Rowan, as a college professor. They raised a family and had a good life together.When Dr. Rowan retired after 35 years of teaching, Ms. Rowan began to notice subtle changes in her husband's behavior. He started having good days and very bad days. Slowly, she realized that her husband “had something I didn't have a name for.”When he went for neurologic testing, Ms. Rowan learned the hard truth from a physician who maintained both compassion and professionalism in his dealings with her and her husband, she told her audience.“When the doctor gave him the diagnosis,” Ms. Rowan recalled, “Joseph said, ‘I question that.’ And the doctor replied, ‘You may. I give you my permission to question it.’” The physician told the Rowans that if the Alzheimer's diagnosis was correct, it would mean significant changes in their lives. He urged them to plan things “in a way to show your family that you love them.”Although devastated by the diagnosis, Ms. Rowan noted that it also was a relief of sorts. She explained, “This thing that I was in denial about now had a name. … Now I wanted to be creative in finding ways to show my husband that I love him.”Dealing With DementiaMs. Rowan gave her audience snapshots of what their patients and family members go through once Alzheimer's takes hold. Since Dr. Rowan was “a long-suffering Cleveland Indians fan,” Ms. Rowan decided to try to spark some memories by taking him to some baseball games.Recalling their first outing to the ballpark after the diagnosis, Ms. Rowan said, “We went early, got settled, and watched the game. … On the way home, I said, ‘I think the Indians are going to be pennant winners this year. What did you think about the game?’ He replied, ‘I would rather have seen baseball.’” In response, Ms. Rowan touched him and said, “Next time, we will.”Another time, a flat tire derailed a ball game outing. While they were waiting for help, Ms. Rowan grabbed a bottle of water and a blanket and took her husband up a nearby hill. He asked why they had stopped and where they were going. She said, “I told him we were going on a water picnic.” They sat on the blanket and drank water – the only food or drink in the car – while Dr. Rowan played his harmonica and a repairman came and fixed the tire back on the road.Dr. Rowan never knew they'd had a car problem, and a situation that could have caused him confusion and stress turned into an adventure. Later, he told his wife, “I just love those water picnics.”Ms. Rowan stressed the power that she as a caregiver and the audience as health professionals have in the lives of demented patients. “As his care partner, I had tremendous power to make my husband's life miserable or joyous. My words could be tools of torture or instruments of inspiration. My words could hurt or heal.” As best she could, she chose love and kindness, she said. She told her audience, “Your words have the same power.”To a New PlaceMs. Rowan said that she thought she could care for her husband in their home indefinitely. At first, she could handle the difficult situations. For example, some evenings Dr. Rowan would say he wanted to “go home” and start packing to leave the house that he had lived in for years. “I'll go with you,” Ms. Rowan would say. Then, she would pull back the curtains and say, “But it's night now. Can we leave in the morning?” Her husband would agree and calm down.“Training as a first-grade teacher is wonderful,” she told her audience.Eventually, she realized it was time for Dr. Rowan to go into a long-term care facility. After much study, she chose one that practiced the Eden Alternative philosophy of “purposeful living in a humane habitat.” The home she chose was in South Carolina, a long car trip from their Ohio residence.Ms. Rowan described the scene that put her and her husband at ease when they arrived. “Some people and a little dog were waiting outside. The dog looked exactly like the one we had left in Ohio. My husband picked up the dog and said, ‘What are you doing outside? It's time to go in.’” Dr. Rowan marched into the facility and “began his life of bliss in this new kind of home.” At the nursing home, Ms. Rowan and her husband met “wonderful people like you,” she said.Time to Go HomeWhile generally content throughout his illness, Dr. Rowan talked about wanting to go home, Ms. Rowan said. As he lay dying, “I told him, ‘Joseph, you've wanted to go home for so long. Did you know that you're closer than ever? You're nearly there.’”She told him to knock when he was ready and the door would open. He moved his hand weakly as if to knock and spoke his last words: “How beautiful.” Ms. Rowan said, “That's what I want your last words to be. That's what I want my last words to be.”Ms. Rowan concluded her talk the way she started it, by thanking her audience: “I come as one who thanks you for the way you give your love to the Josephs of the world.”Senior contributing writer Joanne Kaldy is a freelance writer in Harrisburg, Pa., and a communications consultant for AMDA and other organizations. “Between Yesterday and Tomorrow,” Sarah Rowan titled the Anne-Marie Filkin lecture she gave during Long Term Care Medicine – 2011. In her talk at a conference general session, she related stories of living in the moment with her husband with Alzheimer's disease. She told the long-term care professionals before her, “I come as one who already knows about you and how you give bad news in a beautiful way.” Ms. Rowan shared her journey as a caregiver and partner to her husband, who died after living with Alzheimer's disease at home and then in a nursing facility. She thanked her audience for their good work and said, “You were born to love and share that love through compassion for those who are hurting.” A long and joyous relationship with her husband began when they met in Germany, married, and moved to Ohio. Ms. Rowan worked as a first-grade teacher, and her husband, Dr. Joseph Rowan, as a college professor. They raised a family and had a good life together. When Dr. Rowan retired after 35 years of teaching, Ms. Rowan began to notice subtle changes in her husband's behavior. He started having good days and very bad days. Slowly, she realized that her husband “had something I didn't have a name for.” When he went for neurologic testing, Ms. Rowan learned the hard truth from a physician who maintained both compassion and professionalism in his dealings with her and her husband, she told her audience. “When the doctor gave him the diagnosis,” Ms. Rowan recalled, “Joseph said, ‘I question that.’ And the doctor replied, ‘You may. I give you my permission to question it.’” The physician told the Rowans that if the Alzheimer's diagnosis was correct, it would mean significant changes in their lives. He urged them to plan things “in a way to show your family that you love them.” Although devastated by the diagnosis, Ms. Rowan noted that it also was a relief of sorts. She explained, “This thing that I was in denial about now had a name. … Now I wanted to be creative in finding ways to show my husband that I love him.” Dealing With DementiaMs. Rowan gave her audience snapshots of what their patients and family members go through once Alzheimer's takes hold. Since Dr. Rowan was “a long-suffering Cleveland Indians fan,” Ms. Rowan decided to try to spark some memories by taking him to some baseball games.Recalling their first outing to the ballpark after the diagnosis, Ms. Rowan said, “We went early, got settled, and watched the game. … On the way home, I said, ‘I think the Indians are going to be pennant winners this year. What did you think about the game?’ He replied, ‘I would rather have seen baseball.’” In response, Ms. Rowan touched him and said, “Next time, we will.”Another time, a flat tire derailed a ball game outing. While they were waiting for help, Ms. Rowan grabbed a bottle of water and a blanket and took her husband up a nearby hill. He asked why they had stopped and where they were going. She said, “I told him we were going on a water picnic.” They sat on the blanket and drank water – the only food or drink in the car – while Dr. Rowan played his harmonica and a repairman came and fixed the tire back on the road.Dr. Rowan never knew they'd had a car problem, and a situation that could have caused him confusion and stress turned into an adventure. Later, he told his wife, “I just love those water picnics.”Ms. Rowan stressed the power that she as a caregiver and the audience as health professionals have in the lives of demented patients. “As his care partner, I had tremendous power to make my husband's life miserable or joyous. My words could be tools of torture or instruments of inspiration. My words could hurt or heal.” As best she could, she chose love and kindness, she said. She told her audience, “Your words have the same power.” Ms. Rowan gave her audience snapshots of what their patients and family members go through once Alzheimer's takes hold. Since Dr. Rowan was “a long-suffering Cleveland Indians fan,” Ms. Rowan decided to try to spark some memories by taking him to some baseball games. Recalling their first outing to the ballpark after the diagnosis, Ms. Rowan said, “We went early, got settled, and watched the game. … On the way home, I said, ‘I think the Indians are going to be pennant winners this year. What did you think about the game?’ He replied, ‘I would rather have seen baseball.’” In response, Ms. Rowan touched him and said, “Next time, we will.” Another time, a flat tire derailed a ball game outing. While they were waiting for help, Ms. Rowan grabbed a bottle of water and a blanket and took her husband up a nearby hill. He asked why they had stopped and where they were going. She said, “I told him we were going on a water picnic.” They sat on the blanket and drank water – the only food or drink in the car – while Dr. Rowan played his harmonica and a repairman came and fixed the tire back on the road. Dr. Rowan never knew they'd had a car problem, and a situation that could have caused him confusion and stress turned into an adventure. Later, he told his wife, “I just love those water picnics.” Ms. Rowan stressed the power that she as a caregiver and the audience as health professionals have in the lives of demented patients. “As his care partner, I had tremendous power to make my husband's life miserable or joyous. My words could be tools of torture or instruments of inspiration. My words could hurt or heal.” As best she could, she chose love and kindness, she said. She told her audience, “Your words have the same power.” To a New PlaceMs. Rowan said that she thought she could care for her husband in their home indefinitely. At first, she could handle the difficult situations. For example, some evenings Dr. Rowan would say he wanted to “go home” and start packing to leave the house that he had lived in for years. “I'll go with you,” Ms. Rowan would say. Then, she would pull back the curtains and say, “But it's night now. Can we leave in the morning?” Her husband would agree and calm down.“Training as a first-grade teacher is wonderful,” she told her audience.Eventually, she realized it was time for Dr. Rowan to go into a long-term care facility. After much study, she chose one that practiced the Eden Alternative philosophy of “purposeful living in a humane habitat.” The home she chose was in South Carolina, a long car trip from their Ohio residence.Ms. Rowan described the scene that put her and her husband at ease when they arrived. “Some people and a little dog were waiting outside. The dog looked exactly like the one we had left in Ohio. My husband picked up the dog and said, ‘What are you doing outside? It's time to go in.’” Dr. Rowan marched into the facility and “began his life of bliss in this new kind of home.” At the nursing home, Ms. Rowan and her husband met “wonderful people like you,” she said. Ms. Rowan said that she thought she could care for her husband in their home indefinitely. At first, she could handle the difficult situations. For example, some evenings Dr. Rowan would say he wanted to “go home” and start packing to leave the house that he had lived in for years. “I'll go with you,” Ms. Rowan would say. Then, she would pull back the curtains and say, “But it's night now. Can we leave in the morning?” Her husband would agree and calm down. “Training as a first-grade teacher is wonderful,” she told her audience. Eventually, she realized it was time for Dr. Rowan to go into a long-term care facility. After much study, she chose one that practiced the Eden Alternative philosophy of “purposeful living in a humane habitat.” The home she chose was in South Carolina, a long car trip from their Ohio residence. Ms. Rowan described the scene that put her and her husband at ease when they arrived. “Some people and a little dog were waiting outside. The dog looked exactly like the one we had left in Ohio. My husband picked up the dog and said, ‘What are you doing outside? It's time to go in.’” Dr. Rowan marched into the facility and “began his life of bliss in this new kind of home.” At the nursing home, Ms. Rowan and her husband met “wonderful people like you,” she said. Time to Go HomeWhile generally content throughout his illness, Dr. Rowan talked about wanting to go home, Ms. Rowan said. As he lay dying, “I told him, ‘Joseph, you've wanted to go home for so long. Did you know that you're closer than ever? You're nearly there.’”She told him to knock when he was ready and the door would open. He moved his hand weakly as if to knock and spoke his last words: “How beautiful.” Ms. Rowan said, “That's what I want your last words to be. That's what I want my last words to be.”Ms. Rowan concluded her talk the way she started it, by thanking her audience: “I come as one who thanks you for the way you give your love to the Josephs of the world.”Senior contributing writer Joanne Kaldy is a freelance writer in Harrisburg, Pa., and a communications consultant for AMDA and other organizations. While generally content throughout his illness, Dr. Rowan talked about wanting to go home, Ms. Rowan said. As he lay dying, “I told him, ‘Joseph, you've wanted to go home for so long. Did you know that you're closer than ever? You're nearly there.’” She told him to knock when he was ready and the door would open. He moved his hand weakly as if to knock and spoke his last words: “How beautiful.” Ms. Rowan said, “That's what I want your last words to be. That's what I want my last words to be.” Ms. Rowan concluded her talk the way she started it, by thanking her audience: “I come as one who thanks you for the way you give your love to the Josephs of the world.” Senior contributing writer Joanne Kaldy is a freelance writer in Harrisburg, Pa., and a communications consultant for AMDA and other organizations.
Referência(s)