Anna Huling was a star Los Angeles fashion designer, creating clothing for the likes of Lauryn Hill and Naomi Campbell, when she was diagnosed with early-onset Alzheimer’s disease. Not only did it derail her life, but that of her young son, Wesley, and her husband, author Stephen Siciliano.
Huling battled the disease for more than a decade with the support of her family, but her condition took its toll on all of them.
To help his family through the hard times, Siciliano began taking Huling to the Southern California beaches that surrounded them. It was respite and an activity that Huling loved.
Siciliano began documenting the beautiful settings and local trips the couple and their son took as Huling deteriorated, mostly centered on surfing trips, a passion he had developed later in life.
At first, he used the trips as a vehicle to keep loved ones updated on how the trio was doing on Facebook, but realized he was providing a service. The intricacies of life as a caregiver for someone with Alzheimer’s are rarely discussed, shared or known publicly.
The challenges Siciliano faced as a caregiver are not isolated — according to AARP and the National Alliance for Caregiving, 53 million adults in the U.S. are unpaid family caregivers. Siciliano eventually had to give up his job and became his wife’s paid carer.
In the year after Huling’s 2024 death, Siciliano turned their story into a book, published this winter called “Three Surfin’ Safari Summers: Bringing Joy to a Wife’s Alzheimer’s Journey.”
The book is many things all at once: a photographic travelogue, an Alzheimer’s primer, an ode to surfing and nature and a documentation of Anna’s personality shift as the disease took greater hold.
Siciliano sat down with host Deepa Fernandes to talk about the book, Huling, the disease, and how he’s doing now.
Huling was the cousin of Fernandes’ husband and one of his dearest friends. Fernandes’ wardrobe has cherished Anna Huling designs.
Siciliano and Fernandes parse through the joy she brought them and how they’re both doing now, almost a year after Huling’s passing.
7 questions with Stephen Siciliano
You are not a California-born surfing baby. You came to surfing later in life, and soon thereafter, your wife is diagnosed with Alzheimer’s. Tell me how surfing safaris came about.
“ It’s important to point out that if I had not met Anna, I would not have become a surfer. It was her brother Clint, who, in the midst of a midlife crisis I was enduring, got me out there. I was a cigarette-smoking, Cappuccino kind of book-reading fellow, and he insisted on taking me out there.
“My son was about 3 years old then, and it fit very well into a family scheme. Wesley enjoyed tiny marine animals and tide pools and such. Anna would take him around, and I would surf. And so for a number of years, it really became a perfect meeting place for all three of us to be happy.
“In 2019, she was getting sick. I was losing her, and I wanted to take the last moments we had together and enjoy them in beautiful places that were nearby here in Southern California, within 45 minutes of where we live, right here in the middle of the dense city, were some spectacular locations. And I decided to get her out to those.”
Why did you decide to write about these trips and share the ups and downs on this hard journey so publicly?
“ It was not easy. There is a sentiment in this world that it’s not necessarily appropriate. People don’t want to hear about these things.
“But as I did the posts, it became clear to me, thanks to Facebook — because you can get an immediate kind of feedback — that folks didn’t know much about this disease and that the things that I was telling them were revelatory and would be useful to other caregivers as they embarked upon what is the darkest kind of journey. You are fighting a battle you know you are going to lose.”
By your second summer of surfing safaris, your wife had deteriorated a lot and you had to worry about her wandering off. How did you keep her protected while you were out surfing?
”I did try. I knew from the difference between the first summer and the second that she had declined noticeably. I limited the extent of our journeys, established a marking point for her closer to the water so that I could keep an eye on her.
“It was my hope that these measures would be effective, but they were not.”
Tell us about the time she went missing and it took you more than an hour to find her.
“ There is nothing more terrifying and guilt-inducing than to know someone in your charge has disappeared.
“I went to a lifeguard stand, and they swung into action and pulled out their trucks, and we dug her up. But anytime that happened, there was nothing worse than those episodes.”
Tell us about the Anna you knew.
“ A friend of ours would say, ‘There’s no mean in that girl.’ She was absolutely delightful to be around and as a partner in a marriage, she truly was the better half. And to be with her was to be a better person together and to draw quality.
“I absolutely adored her and I felt, when she was given that diagnosis — I was in the room — that I was going to do whatever I could to make this passing of hers as pleasant and filled with love as possible because that is what she taught me.
“Her love was unconditional, and the loss I feel now is not just the absence of a person, and it goes deeper than that because it’s the loss of being loved by somebody like that. She was intellectual, progressive and yet interested in what she herself considered a frivolous, superficial world of clothing. She came from a long line of social workers; it was sort of the family business. But while she was studying that, kept the sewing machine in her room. We hit it off very well, and I miss her terribly.”
How did surfing help you through this?
”Surfing was a perfect solution for me. Surfing represented a full-body workout in a healthy atmosphere. That gave me a perspective. It shrinks you and you’re in a much larger topography, and your problems become less large than they are to you when you’re stuck in a cramped house.
“It’s a very difficult thing to do, but when you position yourself properly and you get your sprint off, and there’s a sound that happens when the wave has tracked your board. You know you’re in, and you get up on there and you start sluicing through the water and feeling that energy that comes from thousands of miles away. There is no Alzheimer’s, there’s no sick wife, there’s nothing but the true beauty that is available to us no matter what is going on in our life.”
After Anna’s death last year, how are you and your son Wesley doing?
“ We miss her terribly. And the absence becomes more profound as time goes on, just simply because of the quality person that she was, and you lose that.
“We’re doing okay. And when Anna was diagnosed with the illness, we did research together. She was a little daffy and a little awkward, but she was still with me, and she said, ‘Please don’t let this kill you too.’ That is something that I have kept in mind.
“It’s a rather trite thing to say, and we say it all the time when we lose some, but that she would not have wanted us to fall apart, and as much as many days, I just want to wrap myself in the blanket that my grandmother knitted for me 40 years ago, I know she wouldn’t stand for it and she wouldn’t want that.
“She wouldn’t want her passing to have meant that we would cease to enjoy life because that was her ultimate gift that she just was a natural at: having fun and yet being serious at the same time. So Wes and I are okay. I do worry about him. I think he’s tried to power through it in a kind of macho way without seeking too much help or anything. But he’s going to be 22 and he’ll deal with that in his way, and I — as long as I’m around — I can help him with whatever he needs.”
This interview was edited for clarity.
____
Thomas Danielian produced and edited this interview for broadcast with Todd Mundt. Danielian and Grace Griffin adapted it for the web.
This article was originally published on WBUR.org.
Copyright 2025 WBUR