Caregiving
I became a caregiver in 2011. Though we'd had sickness and recovery periods in our family, I had no idea what it was like to give up chunks of your life for someone else.
I was completely ill-equipped.
My experience isn't unique. People around the world become caregivers every day; parents, brothers, sisters, children, grandparents, aunts, uncles and caring friends. In 2009, free caregiver services provided by friends and family members were valued at $450 billion (up from $375 billion in year 2007) – in the US alone.
It's exhausting to put the needs of someone else before your own BUT it's even worse when you have to make tough decisions that impact the life of the person you're caring for.
I began advocating for caregivers to treat the process like a business. This meant enrolling others in the work, assigning discrete responsibilities and looking for ways to seamlessly collaborate. It works. It means one person isn't overburdened and the big decisions can be shared responsibility. Our caregiving team had six people at the core. Two were paid and lived in town. The other four caregivers were family members and lived out of town - with the closest family member two hours away.
We were set up so the day-to-day living was pretty easy. Everyone knew what they were supposed to do and who they could contact when they needed help.
The difficulties arose whenever we went through a transition. The decision to move to assisted living. A broken hip. The selling of assets. The move to memory care.
As we made difficult decisions we had tons of support and people guiding us, but we always had a voice nagging us in the back of the head,
Sometimes the voice was quietly questioning. AT TIMES THE VOICE WAS SCREAMING.
We'd go back and forth. We'd talk about the decision and the impact of our decision. At times I'd be the weak one who needed convincing that we were doing the right thing. At times I was the strong one asserting that we were right and talking about the potential impact if we didn't make a decision.
We'd cry together. We'd doubt our decisions. We'd get tired of talking about it. We'd fight (on occasion).
Every time a decision was made you thought about how your decision was negatively impacting the life of someone you love.
Everyone wants freedom, independence and autonomy.
Caregivers feel like they are the killer of those rights. And they're exhausted.
Roobrik
Mutual friends introduced me to Nate O'Keefe in 2013. When Nate talked to me about Roobrik I felt relieved. Roobrik is an online decision tool that helps family caregivers make health and care decisions with clarity and confidence.
Roobrik is what we'd been missing.
At the time Roobrik was in Alpha. As we went through the demo I realized they'd planned for every question I'd agonized over. I wanted the tool desperately. I understood the value. Roobrik would help me accomplish peace-of-mind I'd never known as a caregiver.
the fringe: Caregivers
Caregivers, providing care to someone who is ill, disabled or aged, make up 29% of the U.S. adult population (65.7 million). Though this audience is large, the caregivers and the people they care for are firmly planted in the fringes of our society.
To most, talking about caregiving is icky. Though inevitable, talking about it is on the list of things we know we should talk about (or do), but don't. (The list includes things like diet and exercise changes, death, saving money for retirement and saving money for our kids college education.)
Caregiving is also lonely. It's hard to find a support group that understands where you are and what you're worried about.
Roobrik works because it gives peace-of-mind to caregivers. It helps them make a decision based on their observations and experiences. It takes something subjective -- your feelings -- and provides you with a plan.
Check out Roobrik if you're a caregiver or interested in companies who are creating innovative products to solve life's problems. The Is it Safe to Drive? Roobrik is currently in Beta with Is it Dementia? and Is it Safe to Live at Home Alone? coming soon.
Want to read more?
Stephanie Thomas is cur8able, curating clothing and lifestyle products that are accessible /smart/ stylish for people with disabilities.
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An online decision tool that helps family caregivers make health and care decisions.
Discussing Designing for the Fringe on the 3D LILA Podcast.
Designing for the Fringe: Making dysphagia-safe carrots at home.
The presentation and my notes from my portion of the presentation at South by Southwest (SXSW). My perspective was mostly focused on the utilitarian purpose fo 3D printed food -- particularly for those with Swallowing Disorders (Dysphagia).
Dysphagia is the medical term for the symptom of difficulty in swallowing. Dysphagia brings a major life change. Advancements in the word of 3D printing open the door for more people to enjoy nutritious, fresh food.
A few notes about my submission to the Panel Picker for the 2016 SXSW Interactive festival.
A tiny home could make it easier for my mom to age near us (or for us to live near her).
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The NEA focuses an entire issue on the arts and accessibility to celebrate the 25th anniversary of the Americans with Disabilities Act. *Swoon*
Stephanie Thomas is cur8able, curating clothing and lifestyle products that are accessible /smart/ stylish for people with disabilities.
A video game, Forget-Me-Knot, helps people understand what it is like to have Alzheimer's.
The US transportation system falls short for the elderly. Understanding why can make it better.