Kitty Norton moved into the basement of her parents’ home in Oregon to help care for her mother, who had been diagnosed with vascular dementia in 2010.
Although Norton’s father, Gary, was the primary caregiver, he struggled, so it took a village to care for Gloria. Her sister Lexie helped too. After a long day of caregiving work, the sisters often ended their days drinking wine.
“Dementia is quite a learning curve,” said Kitty Norton. “She couldn’t live on her own anymore, and it was all hands on deck.”
Norton started a blog, Stumped Town Dementia, about her life as a caregiver. Soon, she connected with caregivers across the country, commiserating over challenges and joys. A community of dementia caregivers was born.
Norton felt driven to meet the people who had walked the same caregiving path, so she hit the road in an RV.
These adventures are chronicled in Norton’s documentary “Wine, Women, & Dementia,” which she directed. Over 26 days, Norton, along with her friend Beth and dog Barnaby Bones, traveled from Portland and visited caregivers in Washington, Illinois, New Hampshire, Pennsylvania, and Texas to exchange stories of financial stress, frustration, love, devotion and laughter over glasses of wine.
The documentary has been shown at film festivals in Florida, Virginia, and California and is part of a growing trend of caregivers portrayed in cinema. Norton has also organized community screenings at a local art center, a senior center, and at other locations. Norton said the film will debut on PBS in the fall. A virtual screening will begin Friday through June 20. To purchase a ticket, go here. People can also request a screening of the film for their community.
In a conversation with the New York & Michigan Solutions Journalism Collaborative, Norton talked about the need to normalize dementia caregiving, the stigma associated with dementia, the feedback she’s received from audiences, and the gift dementia gave to her mother.
This interview has been edited for length and clarity.
NYMI SOJO: What inspired you to put together a documentary?
Norton: It was 2017. I decided to start writing about our journey. What I was finding about dementia in all the media, the books, the films, the shorts, the everything—it was very tragedy oriented, and we were not having that experience.
I’m not denying there’s huge amounts of tragedy in helping somebody that you love to the end of their lives. This is really hard but there was still laughter. My mom still thought she was hilarious, even though she could barely speak anymore. There was still a lot of life happening, and I couldn’t find that being represented in anything that I was coming across.
So I started a blog, and I just wrote very personally about our days, you know, where I woke up where I didn’t want to be a caregiver anymore. I didn’t want to get out of bed.
It was the whole spectrum of the experience. And I made friends around the world [through] that, people who really came to the blog saying, ‘Hey, this has been our experience too. You know, I can’t do the crying all the time. We’re trying to figure out how to get through this, and your blog helps.’
So before Mom even died, there were five people in the U.S. that had become pretty crucial to me. We had never met. A couple of us had Zoomed a few times, but it was mostly emails, comments on the blog. A lot of them were pretty active, proactive in their caregiving too and reaching other people while caring for somebody.
Before Mom even died, I thought: when this happens, if those people say yes, I wanted to go meet them. I need freedom. I need to [get] out of this house. I need to do some healing.
Maybe these conversations would be helpful for other caregivers. And if that’s going to happen, maybe I could make a film out of this, even if it’s a short or something.
It’s a road trip. It’s very caregiver-centric. It truly is the film that I think lets caregivers know what’s coming, what’s on the horizon, what’s normal. And just a celebration of what we do.
Q: When you reached out to the caregivers to be in this film were they down for it? Were they excited?
A: Yeah, absolutely. I had these five in mind, and I didn’t want to choose anybody else, although there were lots of other people that I would love to have met, but I figured maybe I could meet them on the road. Maybe we’d have tacos, somewhere or something.
But these were the five that I wanted to interview, and not a single one of them said anything but, “If you show up, I’m gonna open the door.”
The film crew would get after us sometimes. They would always arrive to a destination before me, and they would interview the person more formally, straight on, looking at the camera. That would go for about an hour or two. And then I would usually show up, and we would have some dinner. And sometimes the film crew would film us a little bit, but then we go sit down in a backyard and open a bottle of wine and start talking.
We would start talking as soon as we met, and if the [director of photography] overheard us, he’d be like, “Knock it off. This is stuff we need to actually be filming in the wine chat later tonight. You guys have got to stop.”
We were so excited to talk and to share our stories, and this was the first time we had met.
Q: I have heard from caregivers who felt thrust into the roles, ill-prepared, leaving the hospital without any kind of guidance, so they had to become their own experts on the fly.
A: It still happens 90% of the time, whereas before it was 99.9% of the time. I think one of the real solutions is that it needs to happen at the doctor’s office.
Once you get a diagnosis, here’s resources in your area. Here’s a day program. You’re probably not going to need it right now, your early stages, but somebody might need it in the future. Here’s an art program through your art museum that you can start to interact with other people with dementia. Here’s people in town doing a dementia cafe or a support group.
Q: Do you think the film can help empower caregivers?
A: Dementia is not a normal part of aging, but when you are thrust into this world, whether you’re living with dementia or caring for someone living with dementia, you need to normalize it, because if you’re going to get through it, this has to be the new normal for you, and the new normal changes every couple of months, every year. You know it’s going to continue to change.
People needed to understand that there are days you’re going to be a terrible caregiver. And I am the biggest example of that in the film, [what] I did wrong and attitudes that I had wrong, and that’s OK. That still doesn’t mean you have to give up.
Q: You traveled around the country to meet caregivers. Were there any overall themes that were common among their experiences, or were there any deep contrasts?
A: It was almost exclusively commonalities. That’s another thing I got very frustrated with as a caregiver was the phrase, “If you’ve met one person with dementia, you’ve met one person with dementia. No two dementia people are alike, blah, blah, blah, blah.”
Because every time I got that response from somebody, it was usually a medical professional who didn’t have an answer to my question, and that was their excuse. And another thing that I found in writing the blog and going through this is that we are all facing very similar situations.
Frontotemporal dementia is really different [from] Alzheimer’s. Lewy bodies tend to have more hallucinations than anybody else, so there’s variations, but you’re all going to feel overwhelmed, isolated, guilty, you’re going to laugh at stuff. You’re going to have the same challenges over incontinence. You’re going to have the same challenges if your person hits the rage stage, which is very common, but not everybody does, but you don’t even know that’s coming.
All of a sudden, your lovely, wonderful little mother wakes up one day and is throwing dishes at you. You have no idea what happened, because nobody tells you that this is a part of the progression. So there are so many similarities in a dementia family caregiver’s journey.
Q: The film has been shown at festivals, and you’ve taken it on the road to host screenings within different communities. How’s it gone?
A: I made the film for caregivers, so I need to go where caregivers are. First-time filmmaker. I’ve never done this before, walked a red carpet, you know? That was really fun. Meeting the caregivers was incredibly overwhelming for me.
My friend Nicolette joined me at Vero Beach in Florida [for] the first screening. We walked into an almost sold-out crowd.
Probably two minutes before the film completely ends, Nicolette and I ran out to pass out postcards to people as they were exiting the film. We got mobbed, and it was hugs. It was tears.
People finally feel like somebody is telling their stories. They aren’t the ones on screen, but it’s their lives that they’re seeing, and that means the world to them.
Q: Can you talk a little bit about the stigma associated with dementia?
A: Well, my dad isolated my mom and him because he didn’t want people to judge her. Mom comes from a big family. There was someone in that family who didn’t think they could do it anymore, could see her anymore, because it was too painful for them. We got over that.
But still, there’s a lot of people who don’t want you to know. My mom tried to hide it for the longest time, and I noticed a very big difference when she finally didn’t care anymore, or maybe she just didn’t even remember she had it. The stress dropped away from her and the progression slowed down considerably, and that was just a huge turning point.
It’s a really rough journey. But we didn’t need people’s sympathy and pity. We needed people’s acceptance and help.
Q: So what does acceptance look like?
A: Be a part of the journey. Show up if you’re not even the primary caregiver. If this is a friend of yours caring for their wife or their husband or their parent, show up.
There’s so [many] lovely things that happen when people with dementia are no longer burdened with what they think society thinks they should be, and that can be really fun to see in your parent or your friend too.
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