Until I was faced with the news that my father was dying, I’d not given much thought to the...
Most caregiving is provided by "care partners" -- the informal or unpaid individuals who step up to care for a loved one in need. It is estimated that care partners spend an average of 32.5 hours per week providing care.
These care partners have to balance doctor appointments, medications, meals, insurance, finances, and more daily, all while taking care of their own needs and emotions. To say it’s hard is an understatement. We created Caregiven because we know the pain and struggles of caring for and losing a loved one.
What is Caregiven?
Caregiven is a platform and mobile application that supports and empowers care partners. It promotes engagement and more meaningful connections between care partners and their loved ones. It offers a place for care partners, extended family, and medical professionals to communicate and collaborate as part of a Care Circle. It also provides a secure platform for exchanging vital information and documents and helps families to be proactive with end-of-life decisions while honoring the emotional needs of everyone involved.
While we at Caregiven believe in the power of vulnerability and often share personal stories that guided our journeys as care partners, we’ve yet to address two important questions about the company.
Why Caregiven? Why now?
The answer is that the mission behind Caregiven has always been relevant, but today, technology gives us a way to put our product in the hands of millions.
This answer also starts with our leadership and the story of CEO & Founder Candice Smith. Anyone going through a caregiving event can find an ocean of content on the subject; frankly, it's overwhelming. During her caregiving journey, Candice experienced this firsthand and realized there was a huge need for clarity and support for care partners. This was one of the sparks that inspired Caregiven.
Candice's first experience with the unfairness many face in active dying or death was after her aunt passed away. Candice says, "Her family wrote an obituary that was not an accurate reflection of my aunt's life. It struck me as awful that, as humans, we can be so judgmental and insecure that when somebody isn't able to speak for themselves, their whole lives can be rewritten."
Later, Candice's dad became sick. Unlike 29.3% of Americans, he had an end-of-life plan, and his documents were incredibly organized. Even with that preparation, Candice felt unsure of how to talk to him about this daunting subject.
"I always thought that, culturally, we don't face death," Candice says. "Then my dad was dying. I felt like the first daughter to ever lose her dad, her person. I thought, 'Why do I feel so isolated and alone?' That made me angry." After her dad died, Candice's husband encouraged her to channel her anger into action. She began by thinking about resources that would've helped her when she felt helpless and adrift -- and not just any resources but also those that would support people in the ways they want and need. The spark started to grow.
One other inspiration for Caregiven was the idea of storytelling: "My dad was a phenomenal storyteller, and that's part of the origin." In the time they had left, Candice wanted to collect family stories from his perspective and sat down with him to capture his retellings on a tape recorder. She thought that instilling the art of storytelling -- and the "why's" and "how's" behind stories -- into a tough time in people's lives might translate some of that pain into something beautiful. While recording his stories, she came to a significant realization that took that initial spark of an idea and ignited it. While most people will likely have a caregiving experience, something else most people in the world have is a mobile device capable of recording family stories. The prospect of these living curations instantaneously getting into the hands of everyone in her care circle felt like a revelation.
One final motivation was the experience of "calm and crisis, calm and crisis" repeating over years, she says, that catalyzed her idea into what became Caregiven. Because when a crisis quickly escalates, as often happens in caregiving, and there isn't time to go to a bookstore, what accessible options exist out there for guidance?
Technology was her answer to the varied issues that care partners face. It enables a solution to be put in people's hands for these crisis flashpoints while also providing guidance and answers during the calm.
However, the human connection needed never to be sidelined. Candice's vision for Caregiven's platform is where people using it are "seen" in the sense that, despite their isolation and loneliness in losing a loved one, they don't feel alone. It's a comfort to have company in our miseries.
Even after the journey through her dad's illness and process of Caregiven growing from a vague idea to an evident concept, many miles remained yet to travel. Next, the path took her to Particle Design in Portland, OR, where she says she arrived with an idea wrapped in "a pain, and I asked if this pain was worth addressing. The answer was 'yes,' and the product began from there."
You Are Not Alone
Candice wanted to create a transformative experience through a tech platform, one that doesn't disrupt an industry -- like so many startups aspire to -- but disrupts a major life experience almost all humans will go through.
From day one, Candice taught our team that we are not speaking to individuals but to a moment in time they share. That, "Oh f$#&, Dad's sick" moment and the attendant questions of where to look for guidance, what you even search for, and how you connect with others experiencing similar care journeys.
She also believed that using the term "caregiver" was too limited; it suggests a single-direction for emotion and communication. Whereas "care partner" captures the two-way exchange that makes this experience a relationship. She says, "We also have to fix how we show up for ourselves and our loved ones during the final years. That's a pain we're addressing through technology, but the information and emotion we impart arise from family stories and the feedback of everyone who interacts with the app."
The only way to build this app correctly was to create a product that all users see themselves in.
A Little Luck Never Hurts
As someone with an admitted lack of technical knowledge, Candice saw that a highly-skilled tech partner who also understood the heartbeat of Caregiven’s mission was essential but also a bit of a unicorn.
Then good fortune brought just such a person into her path.
As Candice searched for a partner, our eventual Co-founder & CTO Rebecca Campbell’s mom was dying. Due to this experience and a high-level career as a technologist, Rebecca had envisioned a similar tech-based tool to support care partners. When she read about Candice and Caregiven in a business journal, Rebecca felt relieved to see someone was taking on this challenge.
Still, something inspired Rebecca to leave her current position. During her exit, a coworker who also knew Candice (and of her search for a Co-founder) made the connection between these two women with a shared vision for reshaping moments of human experience with loss. Rebecca soon found her next position or, more accurately, her calling.
Getting Caregiven launched, Candice says, “was a very isolating, solo experience up to the point where someone of [Rebecca’s] caliber would take the leap and build it with me.” One of Candice’s life lessons is the idea that “we don’t know what we don’t know,” but that’s a benefit because we ask questions in response. “So knowing that I didn’t know how to build an app” became an advantage that directed her to find someone as vision-aligned as Rebecca.
During their initial conversation, one of Rebecca’s first questions was: How do you deal with talking about death and telling your story day in and day out? Rebecca “was the first person who got it,” Candice says. “She wasn’t concerned with the feature set or tech stack but the challenge of showing up each day and drawing on a bank of misery to try and help others.” They spoke about Rebecca’s experience and how, because her mother lacked financial resources, the wealthy die differently than the poor. Both asked the “Why?” about this gap and agreed that while those in a lower socioeconomic status might not have the resources to prompt them with helpful questions, these folks do own a cell phone and have access to apps.
Technology Can Help Us Be More Human, More Present
As our team began building the app, we converged on the goal of reducing friction from the busyness and seemingly endless boxes to check that caregiving presents. We were instead allowing those in a care circle to be present.
Then, just as happens during a care journey, the unforeseen ripped its way onto the stage in the form of the COVID-19 pandemic. For the first time in many of our lives, all humanity was forced to face mortality. What felt abstract and not applicable to the young and healthy became tangible. But we at Caregiven see challenges as opportunities for growth. With an increase in awareness about mortality -- when just going to the grocery store might be deadly -- we can gain empathy. And while the startup challenges of bringing a concept to commercialization, building a team, and raising capital will always be daunting, for Caregiven, pitching our idea required less explanation. Due to the coronavirus, nobody needed a long-winded justification for the app's relevance. Show someone an image of a grandmother in her care facility having to talk to her child through glass, and the fragility of life becomes quickly apparent. Global tragedy had built a bridge of empathy.
Still, bringing Caregiven's product to market remained far from easy. Candice had investors tell her, "People aren't going to buy death. It isn't sticky."
So Caregiven's app is directed to the care team (who we call the "Care Circle") because we want to do what's right for them— giving them the tools to help, so they feel less confused when unsure of how to phrase a question or act on a loved one's wishes. Here, Caregiven shines, and it's this goal that has strengthened our company through the difficulties in launching a startup.
Die Better, Not Live Longer
When reflecting at the end of any care journey, Candice says, "Nobody is going to say, 'I just wish I'd filled out his Medicare form differently so my dad had better water options in the cafeteria.' No, we say, 'I'm so glad I had the chance to read mom's favorite book or listen to her Nina Simone records while sitting beside her, holding her hand.'"
Rebecca is fond of a mantra for all these complicated decisions as they manifest in the present: "Right now, there's a future where this all worked out just fine." Remembering this mantra proves as crucial for our team in business as it does for a care partner. Someday, it will all be fine -- however you define that word.
Candice's advice is to "just show up." When paired with listening, that action creates the specific definitions of "fine" for each care circle experience. The reality is that no matter how we show up, it's the right way to do it. And whatever way we get through it is the right path to have followed. For Team Caregiven, "fine" is where we stand today, a funded company set to release our app to the first 500 users in mid-April 2021.
Most crucial is that Caregiven was specifically designed to meet people emotionally, first and foremost.
Begin with emotion, and it leads to activity.
Don’t Forget That You’re Human
The care journey is universal. As care partners, past, present, or future, we want you to know the "why" behind Caregiven. More importantly, we hope that if you use the app, you will pass it on to others. If you've lived the journey, you will share your thoughts and feedback with us to improve the experience Caregiven offers.
Of our April 2021 milestone, Candice says, "I am incredibly humbled, proud, and amazed to see a solution brought to light. Our team dedicated so much time and energy to the human experience that we're confident the app is in a good place."
Yet we're nowhere close to being finished. Thanks to our foundational work, our team can focus on tools built for the future: a storytelling feature where users curate the same type of narratives Candice sought from her dad. These stories could be archived and shared. Imagine pictures of your loved one's possessions. Let's say a saddle. With this feature, dad's voice explains why he chose the English Saddle over the Western and why he always rode with wider stirrups as we hear him talk about scaring up a black bear one spring and he recalls his sorrel mare by name...
Caregiven's future offers that promise.
Speaking on what lies ahead, Candice shares that "Putting a product out into the world that's this bare and vulnerable ... people are going to grab onto it, and they're going to help us make it better."
We also want to see the app become more culturally safe. Yes, language translation will be crucial but also addressing cultural nuances within a country and a shared language. Our product should be universal and, empowered by user feedback, can get close to that lofty goal. Not every cultural group celebrates life the same way; for example, funerals occur differently, and cremation might not be the norm. What happens when someone leaves their culture of origin while young and returns to care for a loved one?
Making our product speak to every type of culture -- ethnic, racial, financial, generational -- requires communication that meets each audience where they're at. However, for every feature, if it doesn't simplify the experience or give comfort to that end-user, we leave it out.
Because we see a stable company that can get the app into people's hands at a global scale. Because words of comfort can be administered by ear, for care partners and loved ones, and nobody needs a medical degree for that particular healing measure.
Add Your Voice to The Collective Story
Maybe you've been through a care journey and are willing to share lessons from the most complex and emotionally challenging period of your life?
We're here to listen. Your courage will allow us to help others.
We see this daily within our team when people say, "Oh, I had a similar experience." That spirit of sharing is the DNA of our app and a way of healing, of guiding users to fight through long-term depression and complicated grief, because they can know others feel the same pain and they can find productive questions to ask.
"When I first started working on Caregiven," Candice admits, "I asked myself that, if it failed, would my dad's death still have meaning? Now, I'm looking at a venture-backed company getting our product to market. We have a long, hard road ahead, but my dad's death has given my life's work meaning. And there's so much beauty in that."
Yes, if your loved one is sick, they will continue to be.
But you won't be alone.