Care Streams: A Path to Reasonable Care in a Lonely Dying Industry

Care streams are a way of live-streaming the day-to-day life of a person living with a disability, illness, or in the end-of-life phase. 
They have immeasurable value on the individual, their loved ones, and the community that forms to engage with the streamer. (What's a Care Stream)

I met Roger Faulkner, a 64-year-old polymer scientist/chemical engineer with ALS, when he brought his MacBook into the computer repair store I was employed in late 2018.

His dictation function stopped working making it difficult to write patents or emails using his voice and the limited mobility he had left. 

While I patched the feature, we started to talk about entrepreneurship. He'd also mentioned wanting a way to leave a large video diary for his son (and family) to have long after he passed. I comped his repair due to the short duration of the fix + the holiday season being near.

We traded cards and started exchanging emails a few days later. I thought the live-streaming service Twitch was a good option for his video diary, as you can store clips and past-streams for 14-days for free (you can highlight them to keep them forever). I began working for him as a caregiver and business partner at 20-years-old on January 14th. By the end of the month we were documenting his day-to-day care routines, work sessions, and life experiences with his 7-year-old son for up to 6 hours a day live on Twitch.

Not but weeks later we had a community of people underneath us helping Roger spread his ideas and story, sharing their stories, helping me with stream management. Roger's quality of life drastically improved being able to talk to his internet friends during his "morning office hours" on the toilet.

He streamed 2.5+ hours of office hours and then "cautiously"🙄streamed his shower and therapy routines that followed. This allowed Roger’s caregivers and community to interact when Roger was occupied.

Our business team occasionally worried that the efforts that we were putting into the Twitch channel were interfering with our ability to pursue every

venue we wanted to so we slowed down a little. 

We continued to stream here and there from mid-February to April while handling more private matters but eventually Roger called me to admit:

“I love the interactions and opportunites that come from Twitch, I need to do this as much as I can”

and he did just that until the day he died. Roger managed to stream 770 out of 866 days he operated on Twitch. Documenting his life story, ideas, and the wishes he had for every community he fought for.

On June 14th, Roger went live from the nursing home he had moved into just 9 days prior.

The stream showed a facility staff member reposition Roger in bed. Roger immediately began to experience respiratory distress.

Roger’s Twitch stream documents staff’s failure to respond to and conscious disregard of his distress.

After Roger is repositioned by staff, he calls for help at least 9 times and says he cannot breathe at least another 10.

The alarm on his ventilator sounds, indicating that he is not getting enough oxygen to sustain life.

The facility ignored his calls for help for over 40 minutes.

Roger died on camera, surrounded by caregivers who were legally and morally obligated to protect him.

They offered him no assistance, not so much as touching him until long after he had passed.

This is the last time that I saw Roger in person. We had spent the day before on a bittersweet 8-hour road-trip to the facility. I am beyond grateful to have captured such a special moment.

This gratitude genuinely belongs to every person that stood and fought with our team. Each viewer that took time out of their day/week to check in on Roger and the team. They blessed us far beyond how any of us ever could've imagined.

By the end of our Twitch journey, Roger had 17,400 followers with ages ranging from 5-80+ years-old. He was like a father to me, a grandfather to thousands of others. He'd let you talk to him about anything you were dealing with. He would tell me some viewer stories, ask me how to help them, and made a point to remember as many names to stories as he could.

I can’t guarantee that everyone will have the chance to form such deep connections. But I urge you to look for them. I’ve received dozens of DMs, emails, and calls checking on Roger since we stopped streaming. Not everyone that streams their care will receive the level of support that Roger did transitioning into that facility. But they will have a video log of every instance of care received by (facility) staff.

Roger died because a facility failed to meet the critical needs of their clients on several degrees of error (negligent caregivers + busy receptionist) but this is just one tragic case. Who's to say that the next facility won't answer the phone, run into the room and assess the emergency at hand?

Those that decide to care stream create content advocating for others with their ailments, normalizing environments and discussions that would otherwise never occur. It's time to mitigate unreasonable care and loneliness wherever we can, this is a very beneficial solution. 

If you are anxious about being admitted to a facility or admitting a family member, consider starting a care stream or get in touch with our team with any questions. At the very least, use a monitoring device.

The Twitch App (Android/Apple) can stream from just about any smartphone or tablet device.

If you'd like to help seniors or their families set up monitoring livestreams, please get in touch with the Faulkner Foundation via Discord, Slack, or Email: jake.rethinker@gmail.com

Valuable discussion and advocacy is taking place for this here and now. Please share the news.