Interview: January 21, 2016

Sally Hepworth is a former event planner and HR professional, as well as a world-traveler and the bestselling author of THE SECRETS OF MIDWIVES. She’s following up that success with THE THINGS WE KEEP, the story of Anna Forster, a 38-year-old woman in the early stages of Alzheimer's disease who checks herself into an assisted living facility, where she meets and connects deeply with another patient. In this interview with Bookreporter.com’s Rebecca Munro, Hepworth discusses why she was moved to write about a protagonist suffering from early onset Alzheimer’s (and why it was crucial to tell Anna’s story in the first person), and why she believes deeply in the ability of love to trump disease.

Bookreporter.com: Alzheimer's and dementia are among the saddest diseases, and we know so little about their causes and progressions. What inspired you to examine these diseases in THE THINGS WE KEEP?

Sally Hepworth: Five years ago, I watched a news segment about a woman --- a newlywed --- who was pregnant with her first child. She had also recently been diagnosed with Alzheimer’s disease. She was 31 years old. It was the first time I’d heard of a young person suffering from this disease, and it touched something in me. It just seemed impossibly sad that someone could be losing her memories at an age when she was supposed to be creating them.

Then last year, I was having coffee with a friend who is a nurse at a dementia facility. She told me about an elderly man and woman who held hands in the communal living area of the center every day. They came into the facility as strangers. Their memories were less than five minutes long. They were both non-verbal. Yet every day, they sat next to each other. Every day he reached for her hand, and every day she allowed him to take it. And for them, every time was the first time.

It got me thinking about the relationship between love and memory. I liked the idea of exploring that further in a novel.

BRC: Your protagonist, Anna, suffers from early onset Alzheimer's and makes the brave, difficult decision to admit herself into an assisted living facility before she can’t make the choice herself. The greatest strength of your novel is Anna's first person narrative both before and during periods of great memory loss. Why did you choose to write Anna in the first person?

SH: As a reader, I favor first person narrative. I enjoy the immediacy of it, and I like being behind the protagonist’s eyes --- seeing what they see, feeling what they feel. I wanted this experience for the readers of THE THINGS WE KEEP. It was particularly important to me since, given the subject matter, I suspected readers might want to distance themselves from Anna and her illness. I didn’t want to let them do that. By being in Anna’s mind, the reader is able to truly walk in the shoes of someone with Alzheimer’s disease, and this was critical to the book’s success.

BRC: What percentage of people suffer from early onset Alzheimer’s like Anna does, and is that percentage growing?

SH: Early onset Alzheimer’s is the description used when people are diagnosed with the illness at, or before, age 65. In 2015, 5.3 million Americans of all ages had Alzheimer’s disease; 200,000 (5%) of those were 65 or younger at the age of diagnosis. This percentage is likely to remain roughly the same. The number of cases of Alzheimer's disease and other dementias overall will grow each year as the size and proportion of the U.S. population age 65 and older continue to increase.

BRC: Even as Anna and Luke begin to lose their memories and abilities, we still see glimmers of their old personalities, from Anna's sense of humor to Luke's fierce protectiveness. Was it difficult to maintain their personalities while still showing the effects of their diseases?

SH: Actually the opposite would have been difficult. To write a character without personality would be hugely challenging to me. And while people do report that their loved ones with dementia do change somewhat as the illness takes hold, it is widely believed that these changes are to do with increased frustrations and difficulties with the disease. When people with dementia are relaxed, comfortable and feel safe, they are much more likely to be the person they always were, with the same humor, spirit and demeanor they always had.

BRC: Your story is told through the eyes of three female characters, each suffering from a profound loss. Why did you choose to focus on the characters of Anna, Eve and little Clementine? What drew you to this unique structure?

SH: Actually it took me a while to come up with this structure. I knew that Anna would have a point-of-view (POV), but I suspected that narrating an entire book from the perspective of someone with Alzheimer’s could be problematic and, needless to say, confusing.

I liked the idea of having a second POV character who was on a similar thematic journey --- someone who had also found their memories to be unreliable (in Eve’s case, finding out that her happy marriage was not what it seemed), and was navigating an uncertain future. But with just the two women, the plot seemed too heavy and sad. The introduction of seven-year-old Clementine --- on her own little journey of how to remember her not-so-perfect father ---  added levity but also poignancy, and seemed to be exactly what the book needed.

BRC: One of the best parts of THE THINGS WE KEEP is the language used by Anna and Clementine. As Anna begins to forget the names of people and things, she starts inventing names for things that, while funny, are also heartbreaking --- pants, for example, becomes "leg shirts." Similarly, young Clementine lacks the vocabulary to describe the world around her, so her grammar is sometimes incorrect but always sharply observant. Was it difficult to pepper in these word substitutions and phrases? How did you find the proper balance?

SH: Word substitutes are commonly used by people with dementia. And, funnily enough, it was surprisingly easy to come up with them. I had fun with it! I just tried to imagine that I didn't have the word for a particular item and had to create one (this is exactly what people with dementia do every day). Also, I have two little children who were very helpful to me on this front. But it did take a bit of reshuffling to get the balance right. With any book, it’s always a process of going over and over your words until you get it (more or less) right.

BRC: During one scene early in Eve's employment, one of the other workers tells her to close her eyes and imagine she doesn't know anything about the world around her. You write so vividly about the fear and confusion that someone suffering from Alzheimer's experiences. Did you speak to people with the disease or research some other way?

SH: My research was multi-faceted. I always begin research with books --- lots and lots of books --- and this time was no different. Later I had several meetings with a nurse who spent her career working with people with dementia. Her stories and experiences fed this book. I was also lucky enough to meet with an advisor at a local Alzheimer’s group, who put me in touch with families of people with Alzheimer’s. She also read an early draft of the book and provided feedback.

BRC: We know from Eve's observations early on that something awful has happened to Anna in the past year. Why did you decide to reveal her deteriorated state so early in the novel? Was it difficult maintaining both storylines without revealing the whole story?

SH: There’s a saying among writers that goes: “Make ‘em laugh, make ‘em cry, make ‘em wait.” I always try to follow this advice. I also liked the idea of keeping the reader in the dark about something. In this, they were much like the carers and family of people with dementia, who often have no idea what their loved one meant when they said or did something.

BRC: There is a moment when Anna has total clarity and shares how she loathes what Alzheimer’s has done to her. We see a true look at the woman inside. How often does that happen?

SH: It is difficult to quantify how often this happens, but in speaking to families of people with dementia, I heard a lot of stories to this effect. A favorite of mine was told to me by my sister-in-law, Therese, whose mother had Alzheimer’s. A few months before her mom died, Therese visited her in her nursing home every day for a week, with her newborn daughter, Rosie, in tow. All week, her mom never recognized her daughter or granddaughter, and kept asking, “Who are you, and whose baby is this?”

On the fifth day, Rosie was asleep in the stroller so my sister-in-law left her in the corridor, and went into her mom’s room and said, “Hello, Pat. I’m your daughter, Therese.” Her mom looked at her like she was nuts and said, “I realize that, Therese. Where’s Rosie?”

BRC: At another time, Luke is tentatively trying to step over a doorjamb, seeing it as something insurmountable, which you share is a typical sign of dementia --- having spatial issues. Did you spend time observing patients as well as doing clinical research?

SH: While I did observe the mother of my sister-in-law on several occasions, I was hesitant to rely on my own (limited) observations when creating my characters. Rather I found books and DVDs --- and speaking to people who worked with people with Alzheimer’s for an entire career --- to be much more valuable in creating credible characters with authentic challenges.

BRC: To call your book a tearjerker is an understatement; I cried profusely through multiple chapters and still could not put it down. Yet there is a hopeful tone throughout, with Luke and Anna's love acting as a silver lining to an impossible situation. How did you strike a balance between the reality of their diseases and the strength of their love?

SH: It was a tough book to write at times, but I went into the story with a belief --- from the stories I’d read and the research I’d done --- that love could remain, even when the brain forgot everything else. In researching this book, I read about a woman who didn’t remember that she was married, but who began to cry when she saw her wedding dress. I read about a man who didn’t recognize his wife but gravitated toward her whenever she visited, often asking if she’d like to "take a walk sometime," the very line he used when he asked her out the first time, 60 years earlier. I was told the story of a grandfather who shielded his granddaughter from a dog, though he couldn’t have recalled who she was, let alone her terror of dogs.

I feel like Anna and Luke’s story was testament to the idea that love remains, and in that way, it was lovely writing their story.

BRC: In THE SECRETS OF MIDWIVES, you told your story through the lives of three women. Here, again, you are layering three women’s stories together. Do you find storytelling power in the multiple layers of three?

SH: For me, it’s not about the magical power of three (although three seems to work well), but rather the power of multiple viewpoints. No issue is black and white, and through getting multiple perspectives, you are able to see the shades of gray and really explore an issue.

BRC: What's next for you as a writer?

SH: I have just submitted my next book, BY MYSELF, WITH YOU, to my editor. Like my previous books, BY MYSELF, WITH YOU will follow multiple protagonists of different generations (four women this time!). In this book, I wanted to explore the different types of aloneness. Most people understand being physically alone, but there are many different ways someone can be alone. Some people feel alone even when surrounded by people, some people can be alone in a marriage or a decision. I wanted to explore the ways we cause our own “aloneness,” and ways we can come together to make sure everyone is supported.