The name “Dolby” is synonymous with the power of sound thanks to American inventor Ray Dolby, who passed away in September 2013 from Alzheimer’s disease. His legacy includes a family of visionaries, including his son Tom, who directed “The Artist’s Wife,” a film that shows the difficult and often raw dynamics of a family facing an Alzheimer’s diagnosis. We spoke with Tom about the film, which stars Lena Olin and Bruce Dern, and his own family’s experience facing the disease.
Tom, you had many roles in the making of “The Artist's Wife”: director, co-writer, producer. What inspired you to make the film?
It was really important to me to tell this story and share the reality of my family’s experience with Alzheimer’s disease. Some people may have the impression that Alzheimer’s looks like an old, sweet grandparent sitting quietly in a corner, unable to recall the name of a loved one. The disease is so much more than that. I’ve seen firsthand how Alzheimer’s can cause a lack of inhibitions, with the person living with the disease saying or doing uncomfortable or inappropriate things. As the disease progresses, the situation only becomes more difficult and painful.
As a family, you never know this is coming, so you don't have a toolkit to deal with it. I think that is the biggest challenge: knowing where to look for help and accepting the reality of the diagnosis. Everyone goes through a different experience with dementia. No two families’ experiences are exactly the same. We’re showing one family’s experience with the disease in the film, but I think the emotions are universal.
Tell us about how your experience with your father and Alzheimer’s relates to the film.
My father was a brilliant man, an inventor and businessman with a Ph.D. He was an “ideas” person, a thinker. My parents were together for 50 years when my father passed away. For him to start losing basic cognitive abilities was confusing, devastating, and life changing for my mother, my brother, and me.
Some of the experiences with my family helped inform the film and Bruce Dern’s character, Richard, who is living with the disease. Richard is an artist who has always been quirky, a bit left of center. My father was also a unique personality, so it was hard for us to recognize signs or symptoms of dementia in the early days of the disease. Was behavior that seemed a bit off just a matter of “Dad being Dad”? Then came the times where he would do something like insist we buy a map to help us get to a local restaurant that we had been to many times before, which made us realize that there was more going on.
I have heard that some people are more resilient than others when it comes to trying to control the outward expression of their symptoms. My dad was often very good at coming up with excuses for any unusual behavior — sometimes he was so brilliant in doing so that it made it more difficult for us to tell what was going on! I understand why he did these things. He was protecting himself. And in a way, what he was doing was an attempt to protect us as well.
While I drew from our own experiences with Alzheimer’s, I wouldn’t say that Richard is based on my dad. But some of the plot points did grow out of experiences we had as a family. There is a scene in the film where Richard buys a very expensive clock. My father went through a period where he was obsessed with buying watches, and would buy a new one every week. They would range from drugstore purchases to high-end, expensive watches. That was when we had to become involved in monitoring his credit cards, which I have heard is quite common with the disease.
As an engineer, my dad also became very interested in rewiring lamps around the house. One day my mom found him on a ladder, attempting to rewire a chandelier. It was frightening on a number of levels, and yet there always seemed to be a reason behind his behavior. If your mind is failing you, it strikes me as logical that you would fixate on how something works, taking it apart and putting it back together again. The same goes for his interest in watches. If Dad could try to keep track of time, he might feel for a brief moment like he had control over his situation.
What were some of the earliest signs or symptoms of your dad’s Alzheimer’s?
We noticed a number of traditional signs, such as confusion over itineraries or him asking the same question over and over again. He was never great at remembering names, even before the disease, so things like that didn’t strike us as unusual at first. We were very lucky that he remembered my mom, my brother, and me all the way to the end of his life.
In the film, when told about the benefits of support groups, Richard’s wife, Claire, says she cannot betray her husband's trust by letting strangers into their life. What do you think prevents people from reaching out for help, and how do you think it could be encouraged?
It is a tough and courageous act as a spouse to be a caregiver. When you fall in love with someone, you never anticipate facing something as difficult as Alzheimer’s disease. For my mother, I think that initially there was some denial surrounding the diagnosis. That plays out in the film’s scene with Claire (Lena Olin) and Richard’s doctor (Caryn West). The doctor asks her: “Didn’t this occur to you?” Of course it had occurred to her, but you try and push that reality out of your own mind, saying to yourself, “This couldn't possibly be Alzheimer’s,” because you don't want it to be Alzheimer’s.
Acknowledging to yourself that something is going on and taking action is vital. When my mom joined a support group, she found it so helpful and enriching. She met a wonderful group of people she might not have met in her daily life, people going through similar challenges who helped her turn a corner in her understanding of the disease and her role as my dad’s primary caregiver.
There is a quote in the film: “Paint what breaks your heart, what you can't get back.” What power do you think art has in healing?
It is so important for caregivers to have their own interests, something outside of the daily life and stress of caring for one's partner or other loved ones. Not everyone has the ability or time or money to do something as big as restart a painting career, but having some time to oneself is vital to the health of a caregiver, being able to lean on other family members to help with caregiving, or getting outside help.
During the COVID-19 pandemic, people in older age groups are being encouraged to stay home for their own safety, but that can be enormously stressful, particularly for caregivers. It’s important for people to find ways to get out of the house safely. It may sound like a tall order, in the craziness of the current world, but something like a walk through a park or a virtual book club — these things can make a huge difference.
I think it’s really important for us to recognize that this kind of self-care is not a selfish act. For the caregiver to be in the best state of mind, to have patience with their loved one, they have to step away and care for themselves. It’s very much like having children. I have 9-year-old twin girls and I know that to be a great parent, you have to take care of yourself. Being a good parent is not about being a martyr and ending up feeling resentful in your life; it does not serve you or your children. The same can be said for being an Alzheimer’s caregiver.
The film is a raw depiction of two strong personalities facing the uncharted territory that is Alzheimer’s and ends with a poignant, subtle message of hope. What do you most want people to take away from this film?
I want people to see Claire’s journey as a wife and know that they are not alone in their struggle. There was not a film like this available to watch when my mom was going through this experience. After she saw it, she said: “People facing this disease absolutely have to see this film.” I was touched by her words and how the film affected her. And I think she really understood how much a film like it could have helped her.
In our film, there are certainly elevated, unusual circumstances in terms of Richard being famous, and it could be very easy to look at these characters' lives and say: “They have money, they have plenty of resources, they live in a big beautiful home. This isn’t my life.” But where you live and how you live doesn’t matter to this disease. Alzheimer’s does not discriminate, and all the money in the world cannot protect them in the end. Claire has to go through the same experiences all caregivers do.
I think the beauty of a support group is that the other people you are connecting with are strangers. Everything is confidential and people can share experiences in a safe space. The fact that the Alzheimer’s Association has support groups meeting virtually is so important, and something I was happy to learn was happening during these difficult times.
What advice would you give families currently facing Alzheimer’s?
I asked a similar question of a social worker who served as a family consultant during my dad’s experience with the disease. How do you get through this as a family member? She said that you need to try to have a sense of dark humor about the experience. That was so important for my family, and I stress this point with other friends who are going through this: you have to try and have a sense of humor, or the disease will be too sad to bear. While you never want to make light of your loved one's disease, there is a certain absurdity to the situations you may face. You have to find the light in the darkness and the humor in the tragedy. Sometimes it’s the only thing that can make it bearable.
I also learned that it doesn't do any good to get upset with someone with the disease. It can lead to arguments and people saying words they may later regret. There is a scene in the film where some really vicious words come from Richard during an awful fight with Claire. I don't wish a fight like that on any couple. The best you can do is realize that it is not the person speaking, it is the disease.
Children and animals are also such a saving grace in the lives of people with Alzheimer’s. We got my dad a service dog named Skippy, and today I am Skippy’s proud owner. He would cuddle with my dad on the couch and bring him comfort, and it was incredible to see. It was similar with my children, who were very young at the time. He connected with them, and they accepted him for who he was. He had trouble remembering their names, and put Post-It notes on their t-shirts with their names on them — another comical moment that you have to appreciate for what it is! My kids have memories of that time, despite being so young. What an important thing it was, for grandchildren to meet their grandparents, to know where they come from.
One phrase that I really appreciate when I think about families dealing with Alzheimer’s is “coming out of the shadows.” Sharing your story and being upfront about this disease can be so freeing. As we all get more comfortable with that idea, we can lessen the stigma around the disease and help more families who are going through this.
In the film, Claire says: “Does everybody have to be perfect all the time?” What a great question, right? We expect such perfection from our loved ones and ourselves and that is impossible. We need to be forgiving toward ourselves and the people in our life and just live in the moment. Don’t be embarrassed or angry about the thing that happened the day before, when you have no idea what is coming tomorrow. Take each moment as it happens, and come together as a family, no matter how difficult your circumstances may be.
“The Artist’s Wife” will be released in theaters and virtual cinemas on September 25. Learn how you can view the film. The film will be available to viewers in the U.S. and Canada. The Alzheimer's Association exclusive screening has been filled and is now closed.
Watch an exclusive, special conversation with director Tom Dolby, actress Lena Olin and our own Beth Kallmyer below.
About: Tom Dolby’s feature film writing and directing debut, “Last Weekend,” starring Patricia Clarkson, was released in 2014. In addition to his work as a filmmaker, writer, and producer, he is the author of four novels. He lives in Los Angeles with his two daughters. “The Artist’s Wife” won the 2019 Suffolk County Next Exposure Award from the Hamptons International Film Festival and the 2020 Jury Award for Best U.S. Independent Feature from the Sonoma International Film Festival.
The Dolby family has long been working to advance dementia science through their support of the Alzheimer’s Association International Research Grant Program and its Part the Cloud competitions in honor of Ray Dolby and all those affected by Alzheimer’s and other dementia.
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