Improving the script for caregiving

K&M PhotoboothIn this conversation between two improv actors, Mondy Carter steps into Karen Stobbe’s world and asks for her perspectives on what she thinks living with Alzheimer’s disease is like, and how we can harness the rules of improv to improve our caregiving.  Learn more about Karen and Mondy and watch their TEDMED 2015 talk here.

Mondy: Why do you think being in the moment with someone living with Alzheimer’s is important? I know what I think, but I am interested in how you see it.

Karen: People living with Alzheimer’s are experiencing short term memory loss. When you’re struggling to remember and trying to make sense of the world around you, life becomes very immediate – very  much in the now.  If we stay in the moment with them, it slows us down and brings us more into their world so we can see things from their perspective.

Mondy: That’s how I see your Mom’s experience with Alzheimer’s. You and I walk around with the context of our recent memories, and so the world makes sense to us. But her recent experiences don’t stay with her at all, and that void of information is filled with immediate sensations colored with the only memories that she does have – ones from long ago. Even though we can share the present, I have to be open to her particular present to be in the moment with her.

Karen: Exactly. When you are truly in the moment, you make yourself available to be present for any moment that arrives.

One of the hardest guidelines to follow in improv and Alzheimer’s is listening fully. To really understand a person with Alzheimer’s, I think you have to pretend the other person is the only one in the world as you listen to them. Like I do with you….

Mondy: You do? I must have missed that.

Karen: Perhaps if you listened more fully?

Mondy: Hmmm…sorry, I just got a text!

Karen: Ha. Seriously, though, think about how courageous it is to even try to communicate when you’re struggling to remember, fighting to follow a conversation, or piecing together fragments of memories to make sense of the world. If they are trying that hard, maybe we can try to be more present in our listening. There was actually a study done in nursing homes that showed 92% of the talking was done by those who work there, and only 8% by those who live there. Not a lot of conversations with the residents or listening by the staff is taking place.

Mondy: When I began improv, it was really difficult for me to stop working out my responses while the other players were talking. It’s hard to believe that just letting go of our own ideas allows us to come up with the best ideas. But, when you listen fully and have the other person foremost in your mind, the human brain is perfectly able to come up with what is needed immediately. Wouldn’t you say that listening is the bedrock of improvisation?

Karen: Yes. And isn’t listening something you have to actively practice?

Mondy: I had to, again and again. The “good” thing about doing improv on stage is that, when you don’t follow the guidelines, you fall on your face. There is a tremendous ego incentive to let go of your ego. If you don’t let go and listen, you crash and burn.

Karen: Which is basically what can happen in a caregiving situation.  If you don’t let go and listen, you won’t understand what the person with Alzheimer’s is trying to say. Misinterpreting their intentions or projecting our ideas can lead to frustration on both sides.

Mondy: Is that why so many people think aggression and anger are always a part of Alzheimer’s?

Karen: That’s a common misperception. People think everyone with Alzheimer’s gets to an “aggressive stage” or all “get angry.” That is not true. Most of those so-called behaviors are either their way of trying to communicate, or reactions to our poor behavior. Most of the time, their actions are really very normal for their perceived situation. We just don’t see it that way.

Mondy: Can you give me an example of that situation?

Karen: Imagine that it’s 6:00am and you’re comfortably lying in bed, in your home when… boom! A complete stranger walks in, opens your drapes and says, “Mr. Carter it’s time to get up!” How would you react?

Mondy: I would freak out and throw something at them. Do I have a taser in this hypothetical case?

Karen: Sure, there is a taser…

Mondy: Then I would tase them.

Karen: We do that to people living with Alzheimer’s all the time.

Mondy: We tase them?!

Karen: Ha! Stop it. No, we don’t bother asking them if they even have any desire to get up. We forget to re-introduce ourselves if we’ve been out of the room for a bit. We tell them they are in their room, but then we burst right in and order them around. In that situation, just about anyone would get upset or angry.

Mondy: I see. So that’s why stepping into their world, instead of forcing them to live in ours, is so important.

Karen: Yes – there’s so much we could learn from the basic rules of improv. Stepping into their world, being in the moment, and listening fully – these rules are the foundation of compassionate care for people living with Alzheimer’s.

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Stop bypassing the dangers of anorexia – Q&A with Cathy Ladman

“My job is to understand and accept myself, my imperfect self.” - Cathy Ladman, TEDMED 2014 [Photo by Brett Hartman]

“My job is to understand and accept myself, my imperfect self.” – Cathy Ladman, TEDMED 2014 [Photo by Brett Hartman]

At TEDMED 2014, Cathy Ladman – a comedian famous for poking fun at her personal neuroses – shared the internal dialogue of someone struggling to cope and understand her eating disorder. Her talk, funny in the “I don’t know if I should be laughing” kind of way, focused on anorexia, which has the highest death rate of any mental illness. We got in touch with Cathy to learn more about her talk and experience at TEDMED.

Why does this talk matter now? What impact do you hope the talk will have?

I have thought, for a very long time, that there has to be a real, honest wake-up call in our society regarding the obsession with being thin. There are people dying from anorexia, and our society turns away from these facts because they are inconvenient. These facts get in the way of the, most often, ridiculous female body standard, and that’s what sells magazines, movies, TV shows, etc. I hope that people will see how grave this is, and how we have the power to stop perpetuating it.

After watching this talk, what actions do you want your viewers to take?

Be honest with yourself and others. Find your self-worth in things other than your body and your looks. Speak out when you see TV shows, films or any public media glorifying skinny.

Which TEDMED 2014 talks or performances left the biggest impression on you? Why?

Sigrid Fry-Revere’s “What can Iran teach us about the kidney shortage?” – I never knew of the donor system that exists in Iran. This talk was fascinating, and made a lot of sense to me. I was partly surprised by my response. I would have guessed that I would not be on the side of selling organs, but I see that, handled this way, it’s a sound idea.

Rosie King’s “How autism freed me to be myself”– Rosie was terrific, vibrant, hopeful, brave, completely real, and spoke with no artifice. I loved her!

Abraham Verghese’s “A linguistic prescription for ailing communication”  – Abraham is a gentle, intelligent man, whose love of words echoes my own. The more we know language, the more we create language, the better we can communicate with each other and, hence, understand each other.

Carl Hart’s “Let quit abusing drug users” – This was such a terrific presentation of a perspective that I hadn’t known before, and makes complete sense. His theories could help to change the cycle of drug addiction and poverty.

Notably Ig Nobel: Science humor

Author and newspaper columnist Marc Abrahams is the editor of the science humor magazine Annals of Improbable Research. At TEDMED 2014 he shared laughter- and thought-provoking stories behind some of the winners of the Ig Nobel Prize Ceremony, which he founded and hosts. Almost all humor aside, Marc snuck away from his duties for a few moments to answer questions for us.

Marc Abrahams at TEDMED 2014: Science Humor

Marc Abrahams at TEDMED 2014. Photo: Sandy Huffaker for TEDMED

Why does this talk matter now? What impact do you hope the talk will have?

People are sometimes given very serious advice about their health by Very Important People who know little and assume much. Look at the crazy advice that some politicians and some journalists are giving us — “Don’t vaccinate your kids!”, “Ebola was created by evil people who want to attack the American public!”. If someone — no matter who it is — tells you something that seems absurd, the best thing you can do is laugh, if it strikes you as funny… and then go find out the facts, and think about them. And THEN decide what you think about their advice.

What kind of meaningful or surprising connections did you make at TEDMED?

Three people each told me about scarily good candidates for future Ig Nobel Prizes. I probably would never have heard of any of those nominees if I hadn’t gone to TEDMED. (Sorry — I am not permitted to tell you anything about those nominees. We have rules, y’know.)

What is the legacy you want to leave?

I hope I helped at least a few people decide that it’s okay to make their own decisions — rather than simply accept what some authoritative person told them — about what’s good and what’s bad, and what’s important and what’s not.  

Anything else you wish you could have included in your talk?

Well, of course I wanted to tell the story of homosexual necrophilia in the mallard duck. But there wasn’t time. And anyway, Kees Moeliker, the scientist who made that discovery, is the best person to tell that story, which he did in an obscure biology journal, and then at the 2003 Ig Nobel Prize ceremony, and then again years later in a TED talk.

Can you share some highlights from the 2014 Ig Nobel Prize ceremony?

The on-stage demonstration of the technique that won this year’s Ig Nobel Prize for medicine. It was awarded to a team from the U.S. and India for treating “uncontrollable” nosebleeds using the method of nasal packing with strips of cured pork. Before that night, I had never in my life met anyone who had disguised himself as a polar bear to frighten a reindeer. I am very pleased with the premiere performance — as part of the ceremony  — of “What’s Eating You”, the mini-opera about a couple who decided to stop eating regular food, and instead get all their nutrients from pills. The lead singers were magnificent, and so was the chorus of their intestinal microbes.

What was your favorite winner from the 2014 Ig Nobel prize ceremony?

I am entranced by the Nutrition Prize winners — Raquel Rubio, Anna Jofré, Belén Martín, Teresa Aymerich, and Margarita Garriga, who published a study titled “Characterization of Lactic Acid Bacteria Isolated from Infant Faeces as Potential Probiotic Starter Cultures for Fermented Sausages.” They could not travel to the ceremony, so instead sent us a mesmerizing half-minute-long video in which they explain what they did and why, and then eat some of the sausage. MA2