INTERVIEW: Dan Gasby On His And B. Smith’s Activism, Caring For Someone With Alzheimer’s, And The Need For Awareness

B. Smith and her husband, Dan Gasby, were given devastating news in 2013, when the restaurateur, magazine publisher, celebrity chef, groundbreaking supermodel and nationally renowned lifestyle maven was diagnosed with early onset Alzheimer’s disease at the age of 64.

We spoke with Dan, who is being honored alongside B. at Alzheimer’s Association Connecticut Chapter’s Celebrating Hope 2016 on Friday, April 29th, about the need for awareness, the couple’s activism, and how their lives have changed.

“Every day is a challenge,” he told Hamptons.com.

What was your reaction when B. was diagnosed?

DG: Shock and awe. It was a feeling of why me? But more importantly, why her? Why her? Then it became, over a period of time, why me? When one person has it in a family, especially a husband and a wife, we both have it.

How has your life changed?

DG: Everything has changed. You can prepare for ups and downs. You can prepare for business; success and even failure. But you can’t prepare for when your significant other goes through a life changing situation that, in many ways, is more devastating than any other disease. With cancer, or heart disease, or any other thing affecting the organs (other than the brain) you can talk to the person. You can rationalize. You can commiserate. They understand, or at least have the ability to understand what you’re going through, as well as obviously what they’re dealing with. But, with the brain, the very essence of understanding and reason is a totally different ballgame. They don’t have the ability to totally understand what you’re going through. They can’t comprehend subtle nuisances. It’s only about what they’re dealing with.

Since B. was diagnosed, the two of you have been very involved with raising awareness of Alzheimer’s.

DG: Everything we’ve ever tried to do was not just about ourselves, but to try to make something better for humanity. I guess you could call us old-fashioned or antiquated. We happen to believe that there’s a greater purpose than just making money or having the need to always be in control of stuff. Since the day I’ve met her, and going back to when she was a teenager, she’s always participated in organizations trying to do the right thing. Thank God we’ve had conversations about what we wanted to do in response to this, to understand what my charge is as a husband and as a friend. What’s so insidious about the disease is it’s sort of like being a person going into a “wolfman” stage, except it stays like that forever. Where they’ve changed and can’t remember what they’ve said or why they did it. Or can internally, but can’t articulate it. So it’s my responsibility as her husband and her friend, her best friend, to do as she wanted and also to protect her.

You two co-authored Before I Forget: Love, Hope, Help, and Acceptance in Our Fight Against Alzheimer’s. What do you hope people take away from the book?

DG: We co-authored it and worked with a guy who’s actually a Hamptonite, Michael Shnayerson. This disease, like no other, is really going to test where America is because it requires the ability to understand, like our infrastructure; you can either pony up and pay now, which will seem substantial. But, over the long run, if we don’t figure out how to mitigate and eliminate this disease it will be devastating. And it’s going to test who we are as a nation, but also as a government. You have to put big money behind big problems. I’m not one of those people that thinks Congress is bad. I think Congress is constipated. What they need is some form of social Metamucil to get them going again, because as you know, when anyone is constipated they can’t function at a high level. By social Metamucil I mean we need the people to make them take their medicine by being active and proactive and forcing them to do the right thing.

What would you say is lacking in terms of Alzheimer’s awareness and the necessities?

DG: Here’s the problem: For many people, particularly blacks and Latinos who are becoming more and more the majority of America, historically, because they have had to battle discrimination and being accepted they don’t want to show any sign of weakness. Mental health, no matter what the level of involvement, whether it’s sociological, biological i.e. neurological, we don’t like to talk about it. Because we don’t talk about it or think about it as a weakness, we don’t understand the impact it has on those who are the caregivers. That ultimately is going to cost more in the collective GDP of this country in terms of wasted opportunities in human capital; people who have to give up their jobs and sell their homes. People, who because they don’t want to talk about their loved ones dealing with this, using medication or alcohol or outright drugs to get through this stifling environment that a caregiver has to deal with when dealing with a person who has Alzheimer’s.

What do you do to cope with a bad day?

DG: I scream. I’ll be honest with you, some days I don’t. I’ve learned to try to think before I feel. I go out and I walk. I try to meditate. I walk the beach. I exercise, and lately, when I’m here, sometimes cause it does get to be devastatingly, unbelievably depressing, I go out to the East Hampton airport and I look around at the planes. At times I just imagine me taking off from the airport flying around the Hamptons, the East End, Shelter Island. Imagine flying over my house, just looking down at the situation. I love watching the planes come in and take off. When I was in Mississippi I loved trains and planes. I loved watching the trains go by. I loved counting the cars. I try to find the kid in me because it gets overwhelming.

I want to make sure you understand this. One of the things that really pisses me off, and I can’t imagine anyone who’s going through this wouldn’t feel the same way, but we wrote a book, right? We’ve gone around the country talking to people, right? Do you know I have people come up to me and tell me, ‘You know it’s going to get worse?’ That’s the last thing I need to hear from them. It is so ludicrous. And that’s because the average person doesn’t know what to say and they don’t think. And that’s why awareness is so important. Don’t ever tell a person who’s a caretaker that it’s going to get worse. What good does that do? And don’t walk up to a person with Alzheimer’s in the middle of a crowd and say, ‘Do you remember me?’ Because it’s not about the person; it’s about them needing to have some sort of ego gratification. Even though the person is going through something traumatic, you need to validate yourself. That is so asinine. What no one has done I think, thus far, is really call people out on this. Not in a polite way, but say, ‘You’re being an asshole.’ And the only way people really start to understand stuff is when it becomes personal or as I say, you make it sexy. You put a face to it. You put out a situation that’s probably not believable or that makes people think how could that happen? Then people think if it can happen to this person, it can happen to me. We live so much in a “me world” that it is so important that people that are trying to raise awareness about things have to call people out and say ‘don’t do that. You’re not helping the situation and it doesn’t make you look particularly caring or smart.’ And that’s what needs to be done. Once they can read or see these types of things, you know, a good portion of them will get that. Those that are totally self-centered will never.

You’ll be sharing your story at Alzheimer’s Association Connecticut Chapter’s benefit Celebrating Hope 2016. What does that mean to you and B.?

DG: We always see the glass half full. Part of the reason is because we believe this is the greatest country in the world. Even though Congress is constipated, we’re going to keep pushing until some Metamucil gets them going to spend some money. The other thing is you have to have a sense of humor. Whether you call it gallows humor or laughing in the face of something that people are afraid to even talk about. But, you have to be a leader. We were dealt a tough hand; we’re going to play the hand to win. Winning doesn’t mean overcoming it so much as we’re going to do the best we possibly can, be as honest as we possibly can and try to give as much as we possibly can to help others. And, if it offends some people, so be it.

Is there anything else you’d like to add?

DG: We have every type of fundraiser known to man in the Hamptons, from saving dogs to keeping aquatic life balanced. There should be a major fundraiser for Alzheimer’s in the Hamptons. There’s quite a few people out here who have it; some don’t talk about it. If ever there was a need for one more fundraiser that should be it.

For more information about Dan Gasby and B. Smith, visit www.bsmith.com. For more information about the Alzheimer’s Association Connecticut Chapter, visit www.alz.org.