Understanding someone else’s experience – oh my, so hard! It’s difficult enough to understand my wife’s experience. I have to pay attention, let my preconceived notions, and mind rants go. And we’ve been together more than 40 years, love each other, know each other. One of the most challenging parts of my career has been to understand the experience of people at the center of care: 1:1, informal group chats, formal focus groups, and surveys. An imperfect science at best. The more formal and scientifically rigorous, the less I think I know. The very act of standardized questions means we think we know what’s important to ask – what’s important to them. I’m not so sure. But what about people with cognitive and communication capabilities different than mine? When I worked at Boston Children’s, I wondered about the experience of non-verbal people. Surveys don’t help. When my boys were very young, my older son would tell us what his younger brother was saying. I couldn’t understand a word. I just knew he was trying to say something very passionately. People together at the center often know first when something is off for a non-verbal person. At Advocates, where I work, we rely on direct care workers to notice something is off. They contact a nurse who does an assessment and can often pinpoint a cause: pain, infection, whatever. We conduct surveys to better understand quality of life of the people we support, but it’s tough. Who fills out the survey? The results have some value, but how much? People with different cognitive and communication capabilities than me have an experience with life. What is it? What do they aspire to? How can we know? I want to know!
When I ask my doctors what worries them the most about my future health, both my neurologist and primary care doc say, they worry that I’ll fall. Everybody faces risks – too little or too much medicine, anxious, scared, or melt-down, infection, stranded, lost, jobless, forget something important, accident, heart attack, caregiver or neighbor moves, power goes out, no help when you need it – on and on the list goes. While no one can anticipate or prepare for every risk, couldn’t we prepare for likely risks? So for me its the risk of falling. I stay as strong as I can, ride a trike that can’t tip over, walk with a cane, strengthen my core, get help for uneven surfaces, pay attention whenever I move, sit down when I’m dizzy, reduce clutter, don’t let anyone depend on me for balance.