Nobody should die alone. This is the reality of what is happening during the current coronavirus pandemic however all over the world. Today I stood at a distance at the entrance to a cemetery and took this picture while I waited to pay my respects for my best friends father who passed in the middle of this worldwide crisis. The family was allowed just five immediate members to attend the services in the funeral home. I can’t even imagine how you make that choice. Even worse, memories were still raw that their loved one was alone due to strict quarantine restrictions in the hospital during his final days before he passed.
It was a little less than 8 weeks ago when I got a text from my friend to tell me his father had a cardiac event that led to a stroke and was in the hospital. I remember it well as I opened the text just prior to boarding a plane from Boston to Los Angeles for the International Stroke Conference. I was traveling there as part of our EnableUs Project to interview stroke care teams who would also be attending the conference. I returned from LA the week before all travel started to shut down here in the US and before the reality and heavy burden of the quarantine set it. I checked back in with my friend to see how his dad was doing. I sensed his frustration, and listened to his concerns as he wondered why his father was sent home from the hospital with more questions upon discharge than answers. He wondered about his diet, the new medications he was provided and what or how he needed to follow with multiple services post discharge.
The process of discovery on our stroke project, although early stage, revealed those similar questions my friend raised as many survivors and caregivers had shared them with us as well. From trying to access more information about their condition, to coordinating and paying for modifications in the home to improve safety and prepare for return home, to trying to arrange for rides to therapy, these were just a few of the burdens mentioned that make life after stroke so hard. The biggest burden mentioned however through all our interviews was the common theme of feeling alone. For many survivors this feeling is real and the biggest burden they face.
I can’t help but wonder if our stroke recovery tool had been available for my friend’s father and his family could that have helped make them feel more prepared and enabled them to have a better pathway to recovery for life after stroke? Would they have been able to better manage the medications and coordinate follow-up care that might have provided remote data and prompted the physicians that an earlier intervention was in order before an eventual hospital re-admission occurred? Could a tool like this helped them perhaps feel less overwhelmed by the whole process of life after stroke? I’ll never know.
My EnableUs co-founder and I have been mission driven on this project from the start. It takes a personal connection to stroke to realize its impact. Today, I realized just why this matters so much and why for many years since my own stroke I’ve known we need to do better. The lack of information and resources available for patients and their families to support life after stroke is frustrating to us. It is time to build better solutions to end this feeling patients get of feeling so alone after surviving a stroke. We have one shot to make this right, nobody should live life or end life alone.