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Are we ever ready to say goodbye? She looked out into the yard sprinkled with spring dandelions. “Yellow flowers,” she said, searching for her words. We knew something wasn’t right. That’s when things began to fall apart for our family, when our longest goodbye journey began—the defining before-and-after moment. And now, looking back, it’s been almost a decade of slow loss and drawn-out grief as we slowly let go of our beautiful mom. In the middle of it all, though, we have learned to look for hope and chase down joy, discovering that, in spite of our pain, there are always gifts to be found, even on the hardest of days. Alzheimer’s disease affects almost fifty million people worldwide. It touches people across every walk of life. So, how do millions of people figure out how to love as they let go? The Longest Goodbye is a collection of stories and moments not just about the clinical side of memory loss–but the emotional heart journey. It is a story that shows how joy and grief are often intertwined and wrapped up together in the glorious mess of life. The Longest Goodbye encourages readers to remember the ones they love while they are still here and to intentionally celebrate and live through the pain and hard days. It’s filled with tears, hope, and bitter-sweet moments all held together by the beautiful love of a mother and daughter holding onto a life filled with memories, while learning to let go and say goodbye.
CBS News correspondent Barry Petersen tells the tender story of his wife's battle with Early Onset Alzheimer's.
Simple ways to connect when you visit with a family member or friend.
Ronald Reagan’s daughter writes with a moving openness about losing her father to Alzheimer’s disease. The simplicity with which she reveals the intensity, the rush, the flow of her feelings encompasses all the surprises and complexities that ambush us when death gradually, unstoppably invades life. In The Long Goodbye, Patti Davis describes losing her father to Alzheimer’s disease, saying goodbye in stages, helpless against the onslaught of a disease that steals what is most precious–a person’s memory. “Alzheimer’s,” she writes, “snips away at the threads, a slow unraveling, a steady retreat; as a witness all you can do is watch, cry, and whisper a soft stream of goodbyes.” She writes of needing to be reunited at forty-two with her mother (“she had wept as much as I over our long, embittered war”), of regaining what they had spent decades demolishing; a truce was necessary to bring together a splintered family, a few weeks before her father released his letter telling the country and the world of his illness . . . The author delves into her memories to touch her father again, to hear his voice, to keep alive the years she had with him. She writes as if past and present were coming together, of her memories as a child, holding her father’ s hand, and as a young woman whose hand is being given away in marriage by her father . . . of her father teaching her to ride a bicycle, of the moment when he let her go and she went off on her own . . . of his teaching her the difference between a hawk and a buzzard . . . of the family summer vacations at a rented beach house–each of them tan, her father looking like the athlete he was, with a swimmer’s broad shoulders and lean torso. . . . She writes of how her father never resisted solitude, in fact was born for it, of that strange reserve that made people reach for him. . . . She recalls him sitting at his desk, writing, staring out the window . . . and she writes about the toll of the disease itself, the look in her father’s eyes, and her efforts to reel him back to her. Moving . . . honest . . . an illuminating portrait of grief, of a man, a disease, and a woman and her father. With a preface written by the author for the eBook edition.
Things get a little hairy for Tini after a day of rickety-rackety hair-brushing drama! Shelly Calcagno is a freelance writer who lives in Waterdown, Ontario, with her amazing husband, two energetic kids, and a cranky cat named Zoe. www.shellycalcagno.com
Alzheimers hijacked their plans, required their full attention, and forced them to change their daily habitstheir very livesin order to accommodate its merciless, unrelenting demands. In My Mom Inez, author Bob Miller shares the story of his familys life against the backdrop of Alzheimers disease. In this deeply personal and powerful account, Miller tells of his role as an only son who unexpectedly found himself in the position of having to care for his beloved mother, Inez, once it became clear she had been stricken with Alzheimers disease. In this memoir, he narrates his struggles to understand what was happening and how he then coped with the emotional, medical, social, and economic issues her condition brings to their lives. With the familys history interwoven, My Mom Inez demonstrates the strength of the human spirit as Miller remains dedicated to providing the same loving care for his mother that she delivered to him throughout his life.
The Long Goodbye: Dementia Diaries discusses a disease that is both personal and social for more than five million patients and their families and friends in the United States today. Now that there are medical strategies for preventing and/or curing strokes, heart attacks, even cancer, many more people are going to live into the dementia years in the near future. Although many dementia horror stories circulate in conversation and in the media, they are not the whole story. Creative approaches to loving a dementia patient can make for a valuable learning experience for family and caregivers. In The Long Goodbye Margaret Miles describes her commitment to making--rather than passively suffering--her spouse's dementia experience. Family and friends who accompany patients find embedded in the experience moments of great beauty, hilariously funny incidents, new companions, and life insights. The narrative provides both a travelogue and suggestions for a richly meaningful life passage for all participants. The Long Goodbye seeks to supply a balanced picture of a disease usually represented as unmitigated loss.
See the BBC’s slideshow of photos from Love, Loss, and Laughter.
In Caring for Mother, Virginia Stem Owens gives a clear and realistic account of caring for an elderly loved one. Along the way, Owens notes the spiritual challenges she encountered, not the least of which included fear of her own suffering and death. This book will be a helpful companion to those who have recently assumed the role of caregiver, helping them anticipate some of the emotional turbulence they will encounter along the way.
With the heartfelt prose of a loving daughter, Patti Davis provides a life raft for the caregivers of Alzheimer’s patients. “For the decade of my father’s illness, I felt as if I was floating in the deep end, tossed by waves, carried by currents, but not drowning,” writes Patti Davis in this searingly honest and deeply moving account of the challenges involved in taking care of someone stricken with Alzheimer’s. When her father, the fortieth president of the United States, announced his Alzheimer’s diagnosis in an address to the American public in 1994, the world had not yet begun speaking about this cruel, mysterious disease. Yet overnight, Ronald Reagan and his immediate family became the face of Alzheimer’s, and Davis, once content to keep her family at arm’s length, quickly moved across the country to be present during “the journey that would take [him] into the sunset of [his] life.” Empowered by all she learned from caring for her father—about the nature of the illness, but also about the loss of a parent—Davis founded a support group for the family members and friends of Alzheimer’s patients. Along with a medically trained cofacilitator, she met with hundreds of exhausted and devastated attendees to talk through their pain and confusion. While Davis was aware that her own circumstances were uniquely fortunate, she knew there were universal truths about dementia, and even surprising gifts to be found in a long goodbye. With Floating in the Deep End, Davis draws on a welter of experiences to provide a singular account of battling Alzheimer’s. Eloquently woven with personal anecdotes and helpful advice tailored specifically for the overlooked caregiver, this essential guide covers every potential stage of the disease from the initial diagnosis through the ultimate passing and beyond. Including such tips as how to keep a loved one hygienic, and careful responses for when they drift to a time gone by, Davis always stresses the emotional milestones that come with slow-burning grief. Along the way, Davis shares how her own fractured family came together. With unflinching candor, she recalls when her mother, Nancy, who for decades could not show her children compassion or vulnerability, suddenly broke down in her arms. Davis also offers tender moments in which her father, a fabled movie star whom she always longed to know better, revealed his true self—always kind, even when he couldn’t recognize his own daughter. An inherently wise work that promises to become a classic, Floating in the Deep End ultimately provides hope to struggling families while elegantly illuminating the fragile human condition.