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“The deep human need for love does not disappear with a diagnosis of dementia.”
Kathy Beal of Bethesda, Maryland, is married to a physician and has a Master’s Degree in gerontology. But just recently, her 81-year-old sister Ann called to tell her she had no idea where she was and needed Kathy to come get her. It wasn’t long before Kathy realized that Ann was in the early stages of Alzheimer’s, a particularly devastating diagnosis because both girls lost their brother to the disease as well.
Thus, this month of November has taken on a special significance for Kathy and so many others because there are five million Americans who have the disease and 15 million caregivers. Alzheimer’s is more feared than heart disease, cancer or even death itself. Thus, Lifestyles is pleased to showcase two book reviews that are especially appropriate at this time.
The first book, “Keeping Love Alive as Memory Fades” by Deborah Barr, Edward G. Shaw and Gary Chapman, was authored by three who have a special connection to the disease. Gary Chapman is an author, speaker and counselor who wrote the bestseller “The Five Love Languages.” Deborah Barr is a writer and health education specialist. Edward Shaw is a physician, mental health counselor and primary caregiver for his wife diagnosed with early-onset Alzheimer’s at age 54.
At first, Shaw’s wife could not remember what she had just read, where she had walked or even driven, even though it was to a familiar place. Then she stopped sleeping with him, fought against him and even forgot who the children were. Thus, this book was created to attempt to cultivate an emotional connection to memory loss.
“The ability to receive emotional love endures for longer than the ability to express it.”
What makes this book so unique is that it is a collaborative work between a healthcare professional, a caregiver and a relationship expert. They provide an overview of the disease, discuss the role of caregiver and its challenges and stresses. They offer personal stories and case studies about maintaining emotional intimacy. For those who feel overwhelmed, gentle help is offered.
How heartbreaking it is for a partner to look at their long-time spouse and say, “I have no idea who you are” Love offered by choice is real love, according to the authors. Then the book offers powerful testimony to the lasting nature of human relationships while the realities of emotional loss are not sugar-coated.
The book teaches us to be open, kind, compassionate and loving so that hope, insight and practical strategies will lessen the pain. Staying connected to the loved one who is disappearing requires these real-life examples, daily exercises and tactics to adapt and change one’s interaction with a brain that’s continuously changing with each stage of this disease.
The five love languages of affirmation, quality time, receiving gifts, acts of service and physical touch are practical, helpful and an excellent resource, particularly for those who feel drained of their efforts and need help getting through the roller coaster of stages and frustration.
Different couples who are dealing with different types of dementia are particularly helpful as not everyone is dealing with the same issues, but closeness and love have to be kept alive during the caregiver’s “36-hour days.” As one reader wrote, “This book was an oasis for a parched soul as love is the foundation of caring for a loved one.”
“Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias” by Amy Newmark and Angela Timashenka Geiger of the Alzheimer’s Association
Newmark is the publisher and editor-in-chief of the Chicken Soup series and Geiger is chief strategy officer of the Alzheimer’s Association. According to BookAuthority, this is one of the best Alzheimer’s books of all time.
No one should face dementia issues alone, so these 101 stories provide support, advice and comfort for both caregivers and those living with Alzheimer’s. Their personal stories cover the entire journey—topics like what does it feel like to have Alzheimer’s, advice to keep the dialogue going, tips for coping, ways to keep marriages strong, appreciation for the effects of art and music therapies, techniques for keeping bonds and connections with grandchildren and friends, and the power of laughter and humor.
One reader said the best part of the book is knowing that, “I’m not alone with this cruel, ruthless, debilitating disease with its loss of memory, grip on reality, not knowing who he or she is, needing help eating, using a walker or wheelchair and being unable to use the bathroom without help. Worst of all is one’s fear deep inside himself as he becomes aware of the loss of his own self.”
The book’s stories help people understand what the victim is going through and how they see the world around them as the disease progresses. Consequently, the stories help others become more compassionate as the patient feels each day is a new adventure for them. Thus, the stories validate the feelings of both patient and caregiver.
Most readers found that the best advice was not to correct the patient’s misconceptions about life but rather to play along to reduce their anxieties by reassuring them in order to calm their biggest worries. Caregivers should find positive aspects, have faith that one is where they should be at this special point in their lives, and try to make the best life possible; not an easy task, but a goal.
What is truly amazing about this book is that it’s also a self-help book for anyone trying to cope, and separate authors show different and various ways of dealing with it to give hope, reassurance and insights. And what is most powerful is that the stories are actual voices of patients and caregivers.
One reader said, “The short chapters make it a perfect bedside table book for weary caregivers. Nothing compares to real-life stories of those who have shared the adventure. You can find joy in moments as you learn more about yourself along the way. The bravery it took for victims to talk about how it feels to lose yourself makes this book really remarkable as the stories are honest and truthful about patients’ reactions as they feel such different emotions.”
“The reflections are also healing as children, seniors and adults all have their own voices told through the stories. Some pieces also bring smiles and laughter, surely as needed as a hot cup of chicken soup. Best of all, the proceeds from book sales go to the Alzheimer’s Foundation.”