By Annette Hinkle
On the evening of November 26, 2014, Dan Gasby left his Sag Harbor home and went down to Main Street to meet his wife, Barbara Smith (B. Smith as she is better known) who was scheduled to arrive from New York City aboard the Hampton Jitney.
But as he stood in front of The American Hotel and watched the passengers get off the bus, he realized his wife, who suffers from Alzheimer’s Disease, was not among them.
For Mr. Gasby, it was his worst nightmare.
“It was like a trap door opened and I was hovering and waiting to fall,” said Mr. Gasby recalling that night, “…like a roller coaster — and your stomach drops.”
Ms. Smith is a well-known TV personality, cookbook author, restaurateur and chef, and her disappearance set into motion a series of events in which police departments, media outlets and Facebook friends throughout the area spread the word in hopes of bringing her home safely.
While ultimately the story had a happy ending (Ms. Smith had gotten off the Jitney before it left Manhattan and was spotted at a diner in the city the following morning), it was yet another chapter in a long journey that began subtly with episodes of forgetfulness five or so years ago, followed by an Alzheimer’s diagnosis for Ms. Smith in 2013 when she was 64. Of the 5.2 million people living with Alzheimer’s today, some 200,000 of them were, like Ms. Smith, diagnosed with early-onset Alzheimer’s, that is, prior to the age of 65.
This week, Penguin Random House Books releases “Before I Forget: Love, Hope, Help and Acceptance in Our Fight Against Alzheimer’s,” a new book by B. Smith and Dan Gasby that takes an unflinching look at the disease both from the point of view of someone living with Alzheimer’s as well as the caregiver and spouse tasked with keeping her safe.
“It’s a love story wrapped around the ultimate challenge for a couple,” explains Mr. Gasby. “It has insights and honesty to the point where some of my friends read it as a control group and said, ‘You really told the truth.’”
Written with Sag Harbor’s Michael Shnayerson (journalist, author and contributing editor for Vanity Fair magazine) the book follows Ms. Smith’s struggles — from early episodes of forgetfulness and frustration to diagnosis, tears, and the decision to close the three B. Smith restaurants in New York, Washington D.C. and Sag Harbor that had once been such an important part of her life.
The book also shares information about scientific studies and potential break throughs, addresses symptoms and issues caregivers need to be aware of and, perhaps most personally, explores intimate topics that illustrate how caring for a spouse with Alzheimer’s is very different than caring for a parent with the disease.
While some of the details were no doubt difficult to share, Mr. Gasby notes that being entirely candid has been a fundamental part of the couple’s journey through Alzheimer’s.
“In any great relationship there’s no such thing as perfection. There’s the goal of seeking a common experience that you can share to the most fulfillment,” notes Mr. Gasby. “This is a tough situation, but my wife has always been honest.”
“Whatever I have, it’s not as bad as what some people have,” adds Ms. Smith, flashing her trademark radiant smile.
Alzheimer’s affects women more than men and African Americans more than Caucasians, and unlike deadly diseases that affect health quickly, it’s an illness of inches. Ms. Smith is now in the middle stages of the disease, for which there is no cure. If you run into the couple in Sag Harbor, you can expect to be greeted as warmly as ever by Ms. Smith who still radiates joy wherever she goes. But it quickly becomes apparent that she has difficulty keeping a conversation going and is easily distracted.
“At times I get so depressed, I have to go out and talk to myself and pull myself up,” admits Mr. Gasby. “It’s not fair. She doesn’t deserve it. I curse God then say I know there’s a reason for it.”
“In the meantime, I’m going to do the best I can,” he adds. “That’s why I know I have to make a difference. We can’t hide and not try to make it better for someone else.”
For Mr. Gasby, learning to be patient, calm and understanding — even when dealing with an outburst of uncharacteristic anger from Ms. Smith — has been one of the biggest challenges he’s faced as a caregiver.
“Before Alzheimer’s, we never had these major disagreements,” says Mr. Gasby. “The brain is an amazing thing. It’s like watching a tornado come down the street. Some houses get blown away and on the other side it’s like nothing’s happened.”
“The good things are so much intact, you could almost think she doesn’t have Alzheimer’s,” he adds. “The most important thing is the goodness always comes out eventually.”
In addition to being a source for caregivers, one of Mr. Gasby’s major goals with this book is to call for increased federal funding for Alzheimer’s research which will lead to effective treatments and hopefully a cure. The book points out that last year, after four people in this country contracted Ebola, the Obama administration requested $6 billion from Congress for Ebola prevention — that’s more money than the federal government has spent on Alzheimer’s in the last decade, despite the fact the disease is responsible for 500,000 deaths every year. For that reason, Mr. Gasby has dedicated the book to Congress.
“Alzheimer’s will devastate our economy over the next 30 years — 5.2 million people have it, and there are about three caregivers for every one person with Alzheimer’s,” says Mr. Gasby. “We really want to make people aware that Alzheimer’s and neurological diseases of the brain are one of the last great frontiers we have to become aware of and change.”
“Our book, hopefully, is the beginning of the end of Alzheimer’s,” he adds.
Unfortunately, Mr. Gasby knows that any cure for Alzheimer’s will come too late for his wife. So the best he can do at this point is care for her in the comfortable and familiar confines of Sag Harbor, a place they are both happy to call home.
As a result, they’ve given up their apartment and the fast life in the city and instead Ms. Smith and Mr. Gasby spend their days enjoying lunch at The American Hotel or taking long walks along the bay beach with their two dogs, Bishop and Sansa.
“It’s easy and friendly,” says Ms. Smith of her life in Sag Harbor.
“Individually and collectively we’ve had a love affair with Sag Harbor going back to the ‘70s,” says Mr. Gasby. “We’ve always loved Sag Harbor.”
“Before I Forget: Love, Hope, Help, and Acceptance in Our Fight Against Alzheimer’s,” has it’s official release this week. On Tuesday, January 19, 2016, Barnes & Noble Bookstore (2289 Broadway at 82nd Street, New York City) hosts a 7 p.m. author event with B. Smith and Dan Gasby. Call (212) 362-8835 for more information.