At SXSW 2013 I spoke about how I was using technology to help a family member with Alzheimer’s.
My aunt had Alzheimer’s and was living alone. She was unaware reality was slipping away. Communications between nurses, friends and family members were complicated disorganized and redundant. My aunt wasn’t getting all of the support she needed.
Those who were helping were overwhelmed with the day-to-day responsibilities and didn’t have the time, know what needed to happen or know where to go for help. Plenty of friends and family members wanted to help but didn’t know how to get involved. There were financial, health, social engagements and assets that needed to be managed.
As I muddled through my initial months of caregiving I realized caregiving is like being the CEO of a small business. Unfortunately when you’re caregiving for someone with Alzheimer’s, you can’t get reliable information about the status of the business. We decided to organize our caregiving team like a small business, taking into consideration the strengths of all of our team members.
We centralized information so I was the primary caregiver, but had an official support team, of both family members and paid employees, with clear roles and responsibilities. We broke things into four categories, financial, health, property and things related to her well-being.
Using Google Docs, Gmail and social media, we set up simple collaboration tools to help us communicate and help understand how every piece fit into the larger world picture. We also worked hard to provide historical context for all who were involved. Most importantly we started to investigate opportunities for additional revenue streams.
In one year we moved our aunt from her home to assisted living. We helped her recuperate from a broken hip. We made a five year financial plan. We cleaned out and sold her house as well as her car. And we were able to streamline our communication as much as possible.
Most importantly, our aunt began producing art again and was able to sell her art to continue to support herself. With her art from her 60+ year career, we were able to plan two retrospective art shows.
It’s been two years since I gave that talk. In that time I started writing for AlzLive and speaking nationally about my experience. I am no longer providing caregiving duties, but have spent three years hacking the caregiving world to try to make it better for the caregiver and the person who needs care.
I’d love for you to visit the Caregivers section of this website to learn more about my experience.
If you're interested in hearing more about the talk, here is a video summary by one of the attendees.
A summary of my interests in Designing for the Fringe.