We spoke with screenwriter and actor Erich Hover about his new film, “It Snows All the Time,” which brings his family’s experience with Alzheimer’s to the screen. Actor Brett Cullen, who plays the father living with Alzheimer’s in the film, joins us to discuss his role, and his own personal Alzheimer’s story.
Erich, what inspired your film’s story?
: Both of my grandmothers had Alzheimer’s disease. In 2010, my dad received his own diagnosis at age 58, after having a PET scan. I truly didn’t realize that this could happen to someone so young. My misconceptions about the disease, paired with my dad being in the prime of his life — working full-time, traveling, reading, working out daily — made his diagnosis hit differently.
My journey with Alzheimer’s didn’t end when my dad passed last year. I continue to tell his story so that other families can benefit from my experience. Everything that happens in “It Snows All the Time'' happened to my dad in some shape or form. As a filmmaker, I hope to use my voice to raise awareness, and hopefully connect with people going through some of the same things my family did. I’m lucky that my family became even closer because of this journey, and while my dad wasn’t able to speak much, getting his and my mom’s blessing to make this film meant the world to me.
What were some of the earliest signs or symptoms of your dad’s disease?
: Short-term memory loss was the first, then constant repetition — key phrases he would repeat over and over. He would also check the house alarms dozens and dozens of times before going to bed, a sign of his paranoia.
In the fall of 2009, Dad got lost while driving in his neighborhood. That was when we had the discussion about taking away his car keys. Soon, he couldn't perform tasks at work, and had to leave his job. Then aphasia set in, and he became almost completely nonverbal.
When my dad started to forget people, he would stop referring to them by their names. The hardest moment was when he looked at me and said, “You are not my son.” It was just after that incident when I spoke to someone at the Nebraska Chapter of the Alzheimer’s Association and shared what my dad had said. We talked through the emotions we experience when a person we love may not remember us. This is also something that made its way into the film. I needed to have that conversation.
Brett, you spent some time with Erich’s dad, Ed. What did you learn from him and about his experience as you prepared for your role as the father living with Alzheimer’s?
: It is important that we show this disease for what it truly is. It is an expensive disease, it is a family disease, it affects us all.
When I initially met Erich to speak about the film, he didn’t realize that my mother had dementia. I took care of her for 14 years, and she lived with me and my wife for two before settling into a care home 10 minutes from my house. Today, my brother, who is 68, is also battling the disease, and I am caring for him.
As I was dealing with these challenges in my own life, I flew to Omaha and met Ed, Erich’s dad. It was an amazing moment. Erich introduced me as the actor who would be playing him in the movie about his life, and he shook my hand. The family said that he hadn’t touched anyone in ages, so that was a big moment. I spent that weekend with him, went for walks, and took videos of him dancing, something I do in the film.
How much did real life influence this film?
: So many of my own family’s life moments are represented, from the dark to the light. One notable thing Dad did was forget who his favorite sports teams were, so it got to the point where he was cheering for teams he hated! My family would just shrug and let him watch whatever made him most happy. You have to find some kind of lightness and laughter in the process of Alzheimer’s or dementia.
: I once read that dealing with the disease is like improv, where the rule is that everything is seen as a positive. The first rule of improv is to say yes, and to agree. So if my mom wanted to put up a Christmas tree in August, I would. I learned the lesson that all people need to learn: people with dementia are not their disease. Even if they don't know you, you have to be there for them and make them comfortable, safe and as happy as possible.
Brett, you say there is a true hero in this movie.
: Yes. There is. It’s the mother character in the film based on Erich’s mom Jerrie and played by Lesley Ann Warren. She is the one who sacrificed her life to take care of her husband and believed in “‘til death do us part.” That was the most important thing, trying to find someone to portray her, this angel of a woman, and also to find the truth in this awful disease Ed battled.
: My mom was one of the more than 11 million caregivers in this country providing unpaid care, which she did for my dad 24/7. It was Brett’s collaboration on the script that allowed us to get a talent like Lesley to play the role. And because of the time Brett spent with my dad, he committed his heart and soul to a very difficult task of capturing who my dad was in the midst of his disease, which made everything come together.
Is there anything you wish you had known prior to your experience with Alzheimer’s or dementia?
: The list is long. I can’t pretend as if I knew anything about this disease before I experienced it personally. I would ask people to be prepared to do things outside of their comfort zone. The first time I had to clean my grandma up after she had an accident, I was a pretty young guy. But I remembered at that moment that this woman had taken such care of me growing up, and now I had to do the same for her. Then I repeated the same things when caring for my dad.
I encourage people to remember that we have an opportunity to be of service to somebody who we love, someone who loves us, and when they forget, we have to be patient with them, and give them grace. I would also encourage people to ask for help. My local chapter
educated me about the disease and gave me strategies to help care for my dad. Asking for help was so important for me and my family.
: I want people to know to be prepared to make changes, sometimes more quickly than you anticipate. When my mom was living with me, she was in danger of creating kitchen fires, and I had to remove the stove. It wasn’t something I had initially worried about until my wife and I saw smoldering pans in the sink.
Also know that this disease shows itself differently. My mom was always very sweet throughout, but my brother is completely different. He scared my wife and daughter when he started talking to his reflection in the mirror. I asked him who he was talking to, and he said, “I have a friend in there.” I replied: “Well, you can say ‘Hi’ to him, but come talk to me, because I am right here.” I redirected, and he joined me. Despite his disease, I am still able to find ways to connect with him, talking about the old days when he was in California, or when he went to Fiji. I will talk with him about whatever he remembers.
What do you want audiences and families facing Alzheimer's to take away from this film?
: Primarily, I want people to see this family’s story. I want people to understand what they went through and about all the confusion, the heartbreak, and mostly the love they have for each other. Alzheimer’s disease needs to be talked more about. Alzheimer's and dementia can tear families apart. We can't stop fighting.
: My hope is that people can see that even in the midst of difficult situations, we can find some kind of a positive light. We can find somebody who's going through this too, make new friends, share advice and stories. Everything that happened in the movie happened to my dad, so I hope others will see something familiar to them that may make them ask for help. If one person caught a sign of the disease early, it would mean the world to me.
I’d also like people to take some kind of action. Volunteer with the Association
, donate, and educate yourself. When Brett and I began work on this film, he still had his mom, and I still had my dad. The journey of this film helped us heal and put a sort of metaphorical end to those stories. And through Brett, I gained a mentor who has become part of my family.
“It Snows All the Time” explores topics including Alzheimer’s and dementia diagnosis, and behaviors like wandering. On July 29, the film will be available for purchase on iTunes. *We will update this post with other ways to watch the film once available.
Erich Hover (“Moneyball”) is lead actor and screenwriter of this film based on his family’s Alzheimer’s experience. Brett Cullen, photo right, (“Joker”) plays the character based on Erich’s dad Ed. Follow Erich and Brett on Instagram.