Love, Hope, Help, and Acceptance in Our Fight Against Alzheimer's
By: B. Smith, Dan Gasby, Michael Shnayerson
Publisher: Crown Publishing
Publication Date: 1/19/2016
My Rating: 5 Stars
A special thank you to Crown Publishing and NetGalley for an ARC in exchange for an honest review.
BEFORE I FORGET a courageous, rare, and bold memoir—the painful truth, a personal journey and fight of early- onset Alzheimer’s; a supermodel, restaurateur, publisher, and celebrity chef, B. Smith.
With incredible insights, education, and impeccable research from husband Dan Gasby, and beautifully written by Vanity Fair contributing editor and master storyteller, Michael Shanayerson —keeping you glued to the pages, as if a work of fiction versus non-fiction, with wit, honesty, and sensitivity. A beautiful love story, which will melt your heart.Top Non-Fiction Books of 2016—A Must Read!
People Exclusive By K.C. BAKER 1/14/2016
B. Smith's Husband On Her Early Onset Alzheimer's: 'It's the Toughest Thing I’ve Had to Deal With' Read More
America’s super couple steps out boldly to use their status and connections as advocates to help fight this terrible disease, for more awareness, research, and education-- for a cure. Another critical reason for stepping out to take action, is finding and testing new drugs. They are expensive, like $1 billion for each new candidate. So it is important people take part in clinical trials.
Alzheimer’s is the most under recognized threat to public health in the twenty-first century. The two most forward thinking states with driving forces are NC and Minnesota (education and activism on Alzheimer’s). There is much to learn and need for education and continued research in this fight. The easiest way is The Brain Registry —you do not to have Alzheimer’s to sign up or participate in a brain study trial.
There have been many fiction books written today, tackling Alzheimer’s; however, this is the first book I have read which really hits home with a realistic everyday walk—from a caregiver’s point of view, a husband, a daughter and a patient, suffering from this frightening disease.
Nine months before the book, Barbara was diagnosed with early-onset Alzheimer’s. As Dan reiterates in the memoir, they appreciate works of fiction, like Still Alice, and other books, which create social awareness—helping educate communities about Alzheimer’s and hopefully lessening the stigma of the disease.
A disease that kills brain cells. The cells it kills first govern memory, (short-term), as the first indication. As it progresses, the long term memory diminishes, too. Eventually Alzheimer’s affect those parts of the brain that control actions and processes we take for granted from the five senses to physical coordination to swallowing to continence. It is unfortunately, both progressive, and so far, irreversible.
Some 5.2 million Americans are living with this disease each year, with a new case every sixty-seven seconds. What was the sixth leading cause of death in the US has now moved up to third, just behind heart disease and cancer.
One in nine Americans age sixty-five or older has it: 11% of the senior population; up to 33% for all Americans eighty-five and older. The scary number is 200,000 Americans under sixty-five have Alzheimer’s. Early-onset or familial Alzheimer’s, as opposed to late-onset, which is everyone sixty-five and older. When you think about 200,000 households where a family member under sixty-five wakes up in a fog every morning, and drifts through the day needing constant guidance from a loved one or hired caregiver.
Plus, out of this number, two-thirds are women. A woman of sixty-five has a 1-in-6 chance of getting Alzheimer’s at some point in her remaining years—versus a man’s 1-11 chance. The difference is in part because women tend to live longer, and the aging process seems to exacerbate the genetic and lifestyle factors associated with the disease. Alzheimer’s changes everything around you.
Where the book really delves into the statistics, is the alarming number of African Americans getting Alzheimer’s.They are twice as likely as Caucasians to get it. Ten percent over sixty-five have it. By the age of eight-five, half of all African Americans have it. Diabetes is also higher in the black community, and they tend to ignore the symptoms of Alzheimer’s longer than whites—as there is a stigma to Alzheimer’s greater than for most diseases.
B. Smith is a perfect role model and spokesperson, to speak out for the African American community; to recognize symptoms, and take action sooner. From anger, forgetfulness, memory lapses, thoughtless, emotional ups and downs, preoccupied, unresponsive, wandering, mood swings, and the seven stages (or the three-main stages).
Dan tells of his love story when the couple met, their twenty-one- year marriage, and how they have worked together to build their brand and their lives. Their restaurants, their business, their dreams, and their lives. Now struggling between proper care, fearful to allow her to be out of his sight, some scary hours when B goes missing, and her need for independence--fighting against an in home health caregiver. The patient is being robbed of their independence, making them feel even worse. (B walked the streets of Manhattan for seventeen hours in high heels, lost)—amazing.
We also hear from B. Smith - her feelings, emotions, fears, confusion, routines, loss of human dignity, mobility, simple pleasures, and her need to be alone. Putting pride and privacy aside, Dan’s challenge as her husband and caregiver is to immerse himself in the present with her. Not to expect her to remember, just be there with her. Join the journey. They are on a journey you cannot prevent or block.
The A’s of Alzheimer’s:
• Agitation: nervousness, restless
• Agnosia: Difficulty with processing sensory information; inability to recognize familiar objects, tastes, sounds, and other sensations
• Amnesia: Loss of memory
• Anomia: Inability to remember names
• Anxiety: excessive worry or concerns
• Apathy: Indifference; inability to feel optimistic and happy
• Aphasia: inability to express oneself through speech
• Apraxia: Loss of fine motor skills
By stepping out to tell their story, B and Dan have joined a campaign of doctors, scientists, and policy makers, among other who see 2020 as the target date for managing Alzheimer’s and are doing all they can to hit that target. Not for curing it, not for preventing it—not yet for either of those. Just for catching it earlier, and maybe—keeping it in check so that patients live longer and keep some semblance of the lives they had before this awful disease afflicted them.
We all know someone who suffers from Alzheimer’s. I have a favorite aunt; she cannot be away from her husband for a second. She does not recognize anyone else for him; not even her own children. Same as B. Smith in the story, she does not want an outside caregiver, thereby putting burdens upon the family. From driving, replaying questions, anger, guilt, resentment, self-pity, misplacing things, memory loss, late to appointments, horrors, sleepwalking, binge late night eating, denial, to hoarding.
The aging of the baby boomers means the numbers are going up. A patient spends millions of dollars a year on care giving alone, in addition to the emotional cost. Sadly Medicare does not pay for a PET scan.
“Time is elastic for B—that’s the word I use. A moment stretches to infinity; a day shrinks to no time at all. In public, she is as poised as ever. Alzheimer’s is perfect for celebrities. They greet people without being expected to know who those people are. The painful truth is that the woman who’s greeting them so warmly has no idea what day of the week it is, or year.”
To a patient with the long-term human tragedy of Alzheimer’s --five minutes can seem like an hour; an hour can seem like five minutes. One person has the disease, but everyone in the family is affected. No one’s life is ever the same. Not only thinking about managing them, but managing your own life in tandem with theirs; building in the time to be a daily caregiver, but also scheduling time off to replenish yourself and be able to help your loved on the next day.
Inspiring and enlightening, a compelling and powerful read. I love how the book was broken out, easy to read from diet, health, insurance, tests, spirituality, research, Medicare, alternative therapies, yoga, exercise, patience, and unconditional love.
Dan: “I’ve come to realize Alzheimer’s is like a tornado moving through a town. It destroys some buildings and leaves other untouched. You can thank God for the ones that were spared, or you can shake your fist at fate. As far as I’m concerned, it’s the luck of the neurological draw, brain cell by brain cell, plaque by plaque.”
With Alzheimer’s the past is the best place to dwell. You want to linger over everyone one of those sweet, long-ago scenes. They’re where happiness still resides. “There is still a living spirit inside the diminished person, the spirit of someone you love.”
You will laugh and cry!
The number of Americans with Alzheimer’s will grow from more than five million today and to as many as sixteen million by mid-century. Caring or people with Alzheimer’s will cost our country twenty trillion in today’s dollars over this same period.
Join their Journey for Hope, Help, and Acceptance in Our Fight Against Alzheimer's. They are thinking of all the others who come after B—the beautiful people with dwindling minds. Join to help push, pressure, and politicize until we get a breakthrough.
Thank you, for this incredible story! Alarming. Eye-opening.