What do you know about Alzheimer’s? Anything? What should you know about Alzheimer’s? Something.
This is not just our parents’ disease. It’s a problem that has far-reaching complications, not only wreaking havoc in the life of the one afflicted, but in the lives of all those surrounding him or her: spouse, children, grandchildren, siblings, friends, caregivers, and the greater community. Its impact is exponential: For each one of the 5.3 million Americans diagnosed with Alzheimer’s, there are another 5.3 million (at the very least) affected (see Alz.org). These people are our families, neighbors, co-workers, friends, and acquaintances. As our lives intersect and intertwine, this disease affects all of us.
June is Alzheimer’s and Brain Awareness Month. Take some time to learn more about this illness, to understand what it means to those who love someone afflicted, to those who dedicate themselves to see that they are cared for, and ensure that their lives continue to have meaning and dignity.
There are many ways to become educated about a condition or disease. With Alzheimer’s, there are hundreds of books available to explain it, advise what to do about it, how to handle it, and offer solutions and support for caregivers. These are excellent resources.
However, stories that enlighten through the careful balance of useful facts and a cast of relatable and realistic characters may be a better way to shed light on this and many other medical issues. This type of presentation enables the reader to get inside the head of the Alzheimer’s patient, their caregivers, spouse, children, and other loved ones. It’s up close and personal, not clinical and removed.
Here are five titles to get you started. Three are memoirs, two are novels. Two are written by women who did double duty at the same time, caring for both mother and father as they suffered from dementia and Alzheimer’s. Another is the story of a woman healing her relationship with her mother after an Alzheimer’s diagnosis. One is written by a novelist wanting to pay tribute to those who rise to the difficult challenge of serving as caregiver to a loved one with this disease. One is written by a nurse who worked with hundreds of Alzheimer’s patient and their families.
Alzheimer’s is a frightening possibility, but to meet it without knowledge or an understanding of its implications increases despair and hopelessness and strips one of the power to make competent decisions and access necessary supports and resources. Knowledge gained through literature can be as practical and useful as any self-help or how-to manual.
Jean Lee, Alzheimer’s Daughter, a memoir
"I wrote what I needed to read as I traveled through the caregiving journey."
What would you do if both parents were diagnosed?
At the time of their diagnosis, Ed Church struggles to his feet, yelling, “How dare you use the A. word with me,” while Ibby wags her finger at the doctor scolding, “Shame on you.”
They defend each other, Ibby by asserting, “We’re not leaving our home,” and Ed reassuring, “We’re just fine.”
About his driving Ed states, “I’m an excellent driver, I’ve never had an accident.”
After Rosie moves them to assisted living, convinced they are on a second honeymoon, they break the news, “We’ve decided not to have more children.”
In the late stages, they politely shake Rosie’s hand, inquiring, “Now, who are you?”
In Alzheimer’s Daughter readers journey with the author from her first suspicions that something is awry to a decade later as she is honored to hold Ed and Ibby’s hands as they draw their last breaths.
Vicki Tapia, Somebody Stole My Iron, A Family Memoir of Dementia
“I wrote my story to offer hope to others whose lives have been intimately affected by this dreadful disease, to reassure them that they’re not alone.”
How would you cope if your loved one’s mind gradually slipped away?
Navigating the waters of dementia can be frightening, unleashing a myriad of emotions for everyone involved, precipitating anxiety and grief, anger and frustration, extreme sadness and feelings of hopelessness. After Vicki Tapia’s mother was diagnosed with Alzheimer's disease, followed closely by her father with Parkinson’s disease-related dementia, she struggled to find practical, helpful information to light her way. Somebody Stole My Iron began as a diary to help her cope but emerged as a road map for others. It offers a glimpse into her family's life as they rode the waves of dementia, sometimes sailing, other times capsizing. This engaging memoir offers useful information from experts in the field of Alzheimer's research, personal lessons the author learned along the way, and ideas/tips for managing the day-to-day ups and downs of dementia.
Somebody Stole My Iron chronicles the tenacity of Vicki’s mother as she fought her way through the tangled and bewildering labyrinth called dementia. Above all, it is a story of holding on and ultimately learning to let go, transcending the pain and turmoil to discover both an abiding love and a tender compassion.
Maria Hoagland, Still Time, a novel
“Medical and family drama are intriguing to me, but it wasn't the unusual that grabbed my attention for this book. I wanted to spotlight the stalwart courage and strong character that are revealed when someone has to rise to a difficult challenge. I believe we all have it in us to confront our trials, face them head-on, and gracefully endure, and what better way to show that than a mother and caregiver who sacrifices her all for someone she loves?”
Thrust into the chaos of her mother-in-law’s hoarding and forgetfulness, LDS church member Alyssa Johnston wishes she could retreat to a simpler time when her kids were small and almost anything could be fixed with a hug. But reassurance and a quick distraction no longer erase the pain of a missionary son who is struggling, a young teen who is bullied, or a daughter who is distant. As Aly’s own life and relationship with her husband plunge out of control, she wonders if her faith will be enough to keep her family—or herself—from falling apart. Still Time is a deeply moving story about a woman’s faithful journey into the next phase of her life. You will laugh with Aly, feel her sorrow, and see yourself in Maria Hoagland’s realistic, heartfelt portrayal of a woman’s struggle to keep her family safe and hold back time as long as she can.
Lisa Hirsch, My Mom My Hero, a memoir
“My mother touched me greatly after she showed signs of Alzheimer's. As a long distance caregiver, speaking to her every day, I found myself falling in love with her. I wrote down everything she said so I would never forget it. This is now my book, My Mom My Hero.”
When Lisa found out her mother, Ruth, had been diagnosed with Alzheimer’s disease, her love, appreciation, and caring for her mother was transformed. My Mom My Hero tells the story of this loving mother-daughter relationship. This is an uplifting and inspirational book for anyone going through the difficult and often lonely ordeal of caring for a loved one who suffers from this devastating illness.
Available on Amazon
Marianne Sciucco, Blue Hydrangeas, an Alzheimer’s love story, a novel
“This is a story I wrote from the heart after witnessing the pain and heartbreak of many couples and families struggling with Alzheimer's disease. The characters are loosely based on one couple I met in my work as a registered nurse. Blue Hydrangeas is my attempt to bring consolation and understanding to all who encounter Alzheimer's.”
What if the person who knew you best and loved you most forgot your face, and couldn't remember your name?
A nursing facility is everyone's solution for what to do about Sara, but her husband, Jack, can't bear to live without her. He is committed to saving his marriage, his wife, and their life together from the devastation of Alzheimer's disease. He and Sara retired years ago to the house of their dreams and operated it as a Cape Cod bed and breakfast named Blue Hydrangeas.
Jack has made an impossible promise: He and Sara will stay together in their beautiful home no matter what the disease brings. However, after nine years of selfless caregiving, complicated by her progressing Alzheimer's and his own failing heart, he finally admits he can no longer care for her at home. With reluctance, he arranges to admit her to an assisted living facility. But, on the day of admission, Sara is having one of her few good days, and he is unable to follow through. Instead, he takes them on an impulsive journey to confront their past and reclaim their future. In the end, he realizes that staying together at any cost is what truly matters.
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