Do not neglect your hearing. It is one of the most important things you can do for your health and wellness.
Transcript
Debi Lynes (00:03): Hi and welcome to aging in place for every stage in life. What if you could visit or have a home that would accommodate anyone at any age, any physical ability at any time? How cool would that be? That’s what we’re doing here at aging in place. Why me? Because I’m a doctor of psychology and I specialize in physical spaces in health and wellness. Also, I love designing with intent at any age. Why now? Because we the baby boomers want to age in place gracefully and we want our families around us as much as we can and why you the audience? Because we want you to experience what it’s like to have a home that’s safe, aesthetically pleasing and that you can live in at any age with any ability at any time. I’d like to introduce you now to Aging in Place Podcast for every stage in life.
Debi Lynes (01:04): Hi and welcome to Aging in Place Podcast for any stage in life. I am here with my friend Natalie Lucas and we’re talking about optimal hearing. Yes, I am thrilled to talk to her. She and I have actually done TV together. Right. So this is going to be fun. We’re going to have to use our….
Natalie Lucas (01:20): New senses.
Debi Lynes (01:21): Our senses of listening today.
Debi Lynes (01:24): Challenging me today.
Debi Lynes (01:25): Exact, this is your area of expertise. You know, what I’d really like to start is a little bit about your background cause it’s pretty fun and exciting and how you got into this area from television production.
Natalie Lucas (01:38): Right. I was a TV producer for almost 20 years with a major news organization and was part of a mass layoff. So for me it was a midlife crisis, right on cue. I was 40 years old and I was going, what am I going to do with the rest of my life? I went to see a life coach just completely blindly this kind of seek out some information. The one thing I knew I didn’t want to do was stay in television news.
Debi Lynes (02:15): Okay. Wise woman.
Natalie Lucas (02:18): Correct. And I’m thankful every day. And so I was, went to a life coach and was learning that I wanted to do something that was more fulfilling, more satisfying to my heart and soul. I wanted to grow up people.
Debi Lynes (02:33): To grow up with your values.
Natalie Lucas (02:33): Right, right and wanted to, I wanted to help people and have a little bit more connection to people and it made sense to do that with seniors just because when you look at what the millennials and the younger generations are doing, they’re maybe not quite as plugged in or active.
Debi Lynes (02:51): Did you initially have a lot of testing done? Did you have kind of inventories done to kind of gear where you were interested?
Natalie Lucas (02:59): I did some kind of personality testing along the way. If you’ve been out there long enough, somebody is going to get you with a personality test. Right. But um I did not do that in kind of an official capacity when I was searching. I just was kind of doing some soul searching, meeting with this life coach and talking it out and doing research along the way. It made sense to look into health-related fields.
Debi Lynes (03:23): Smart. That makes a lot of sense. Why hearing why, what do you think it was that interested you about that?
Natalie Lucas (03:29): I know exactly what it was. The way that I ended up with this company was that I was at an oyster roast and I got talking with the president of the company who was engaged to a friend of mine. So at just as, so many things happen, but being a producer, I went home and started researching it. The reason that I fell in love with hearing was because so much is unknown still about how we hear, how we process language, how important hearing is to the brain. And so that kind of peaked my intellectual curiosities as I started digging. And how important hearing is, but how disregarded it’s been doctors, the medical community, people just kind of let their hearing go and don’t treat it.
Debi Lynes (04:15): Well think about it when, when I think about hearing, I think the biggest shock I had, and you don’t know what you don’t know, you don’t think about it. When I went in for my own hearing test, hearing analysis, and then was told, you know, you’re not, you’re 60 and you really don’t need them. But if you kind of get into it, you, it’s probably a good thing. You’re pretty close. You’re right on the cusp. And I was like, Oh great. You know will insurance pay for those? No. No. And I was like, what? No, no. And to me that signified that they’re a luxury item. And it was shocking to me because once I had hearing aids, I didn’t realize how much I didn’t and hadn’t heard until I had them. And, and now I can’t even imagine life without them.
Natalie Lucas (05:07): It’s funny to me just because I tend to believe we have known so little about how the brain works for so long that people kind of just disregarded hearing you dealt with hearing loss, it was expected to happen. It came with aging. But guess what? So does eyesight, your eyesight diminishes as you age. For the vast majority of people were taking eye tests. As kids, we’re having our eyes checked throughout our lives. When our eyesight starts diminishing. We go and get glasses.
Debi Lynes (05:38): So interesting.
Natalie Lucas (05:38): And ears, for some reason people would just say, huh, that’s expected. I don’t hear anymore. That’s baloney. I don’t, you know, that’s, that’s not cool to me.
Debi Lynes (05:49): So optimal hearing, tell me about the company itself.
Natalie Lucas (05:52): The company itself is a family-owned and operated company. They’ve in business since 1961. The patriarch of the family wore hearing aids and so he started going door to door in 1958 selling hearing aids, which if you can imagine what a 1958 hearing aid was. And his son took over the company I believe in the 80s. Okay. Three of his four children are our vice presidents and hearing loss runs through their family. So, so many of them wear hearing aids which makes them very service-oriented because as hearing aid wearers, they really know the other side of the coin too.
Debi Lynes (06:31): We’ll serve folks who haven’t worn hearing aids. These are not your great-grandmother’s hearing aids. And number one, these are, we were just laughing about this. These are in my words, soon to be fashion accessories because I mean mine does, has Bluetooth. It pretty much can do most anything. Talk to us about some of the newer styles or not so much styles but what, what hearing aids can and can’t do.
Natalie Lucas (06:53): You know these days and when you talk about fashion accessories. I fully believe one day they will be once upon a time and once upon a time you know, eyeglasses were big old round Coke bottle glasses and now snazzy and really cool glasses on. Now they’re just two-tone with the fade and people wear designer glasses. That’s going to happen with hearing aids I think. Because the younger generations are all growing up with pink and neon cords hanging from their ears, iPods, iPods and Bluetooth devices and AirPods AirPods stuff, stuff hanging from our ears all the time now. Um I’m constantly trying to talk my patients into getting red hearing aids or blue hearing aids. Why not? Exactly. I only have one, one woman who is hysterical, she got a red one and a blue one cause she’s a Patriots fan.
Debi Lynes (07:46): When I was getting on it, what’s the big choice? Do you go neutral or do you go to a Rose gold or whatever? And I’m thinking at that time I’m thinking to myself, really, I can’t see it. So I don’t really care.
Natalie Lucas (07:58): Everybody goes neutral, but I say go bold. You know? And I think as I think as the baby boomers start moving in and getting a little funky and the aging hippies I think, we’ll start seeing more bedazzled and designer hearing aids and colored hearing aids. Why not?
Natalie Lucas (08:14): All right. What age do you think people should, well, you’re going to tell me from the time you’re a little on out, right? How often and when should I begin to get hearing tests?
Natalie Lucas (08:22): I’m thrilled to see now that sometimes there are hearing screenings for kids in school. And that’s important. I mean, starting from a young age, it used to be people who had hearing loss sometimes would get up into their four or five, six, seven and not be diagnosed. And that doesn’t help anyone. But certainly I think as you get into your middle age peers, all those fun years, which I’m right in the middle of right now, when you get there, you know, you need to start just go find out, you know, get a baseline.
Debi Lynes (08:52): Do people know if, It you know how I F I think I was 58 and because I was a therapist I would be talking to my patients and a lot of them were teenagers and I found myself as the years went by, you know, that 18 inches of space I would get closer and closer and closer. You’re kind of bugging me, step back. And it was weak because I could not understand them. I felt like I could hear, I couldn’t understand and I didn’t realize there wasn’t much of a difference in that. We’re going to take a quick break. Yeah. We’re going to come back and can we talk a little bit about that again, hearing isn’t always the sound. Sometimes it’s the understanding.
Natalie Lucas (09:41): Very good reason why you felt that way.
Debi Lynes (09:43): Stay with us. We’ll be right back here on aging in place, the podcast.
Debi Lynes (09:48): Hi, I’m Dr. Debi Lynes. Design elements are psychologically and physically supportive and conducive to health and wellness. To learn more about what Lynes on Design can do for you, for more information on certified aging in place and facilitative and supportive design, look for us at lynesondesign.com. That’s L-Y-N-E-S on design dot com.
Debi Lynes (10:13): We are back here on Aging in Place Podcast for any stage in life. I am here with my friend Natalie Lucas, optimal hearing and we’re talking about hearing loss and it’s, it’s funny in the F in the previous segment I said when I first noticed anything, it wasn’t that I felt like I couldn’t hear. I felt like I couldn’t understand.
Natalie Lucas (10:31): If I had a dollar for every time somebody came into my office and said, I cheer just fine. It’s just that everybody mumbles.
Debi Lynes (10:39): That damn TV.
Natalie Lucas (10:40): A very wealthy woman. For the most part, when people start losing their hearing I say for the vast majority of cases, when people start losing their hearing, they start losing high frequencies first. And that’s because high frequencies are most exposed on the cochlea to sounds coming through the ear.
Debi Lynes (10:58): Okay, stop. Here’s now I love this. My favorite part, what I do A what is a cochlea? B What is high frequency?
Natalie Lucas (11:05): Okay, so cochlea is the inner ear. Okay. You have the external ear canal, your middle ear and your inner ear and the cochlea. And the inner ear is kind of the hearing organ, if you will. And High frequency. A dog whistle high pitch. Got it. High pitch. Okay. Okay. So in our language we have low-frequency sounds that are vows and hard consonants such as A – D – B. The volume of our words comes from all of those letters. And then we have high-frequency, non-voiced consonants. We don’t use vocal chords to make any of these sounds, so we can’t make them louder or softer. [k – t – p – h – sh – a] Oh yeah. So what happens is people start losing their high frequencies first for the middle of the ear. And when that happens, you’re hearing the root volume base of the word, but you’re missing those subtle nuances. And our language, those high-frequency non-voice continents help determine and distinguish and differentiate one word from another. So you’re losing the subtle nuances [k – t – p – h – sh – a]. It makes a word a word.
Debi Lynes (12:21): So typically would we, and I think I found myself looking at for work arounds, I would listen much more for context and content rather than individual words. But I again, I was so surprised at the difference when I actually had the opportunity to have a hearing device.
Natalie Lucas (12:44): People start, well, you know, we use a lot of tools to communicate. So when you’re experiencing hearing loss and it’s untreated, you’re relying on your brain to fill in information from context. You’re more focused at looking at faces, seeing lips, reading, kind of the full picture. And when hearing loss will most often highlight itself is in complex listening environments. If you’re in a noisy restaurant with a group of friends, if you’re watching TV with a lot of sound effects and background noise and flat screen speakers.
Debi Lynes (13:14): I also found that anytime I watched a foreign film or a film accent are so bad.
Natalie Lucas (13:20): They’re so difficult for people because you’re already experiencing some hearing loss and trying to lean on filling in the blanks and then with an accent that kind of handicaps you.
Debi Lynes (13:31): So talk to me about what hearing tests looked like in today’s world.
Natalie Lucas (13:34): A hearing test. If you go and get a good hearing test, they’re gonna want to find out about you, a case history, if you will. What’s going on, what situations are you having trouble, where do you think it came from? Do you have any ringing in your ears? Should be a good discussion up front about what’s going on. The hearing test itself is a combination of what we call pure tones that’s hearing tones or beats of different frequencies or pitches from low to medium to high and then their speech testing. And that’s testing how your brain is processing speech. So here is two fold your ears ability to get speech up to the brain and the brain’s ability to process it. So then you’ll do some speech testing and then you’ll end with some bone conduction and that’s actually presenting tones or pitches to your mastoid bone. And what we’re doing there is looking for what we would call a conductive element, some type of blockage in the middle ear or earwax or something that is helping us diagnose what type of hearing loss you have.
Debi Lynes (14:40): One of the most interesting things you said when you first came in was that hearing loss was linked to a lot of medical conditions. Is it more of a is hearing loss a, is there a correlation between that and let’s say heart disease or, or how does all this work?
Natalie Lucas (15:03): Well, you know, I laugh with my patients all the time. That old song when you were a kid, leg bones connected to this. Yes, we’re all interconnected. And so a lot of conditions are interconnected. When we speak of things like heart disease or diabetes, people with heart disease and diabetes have higher rates of hearing loss. And a lot of that has to do with circulation and blood supply to the inner ear. If you start constricting and limiting the blood flow to the inner ear is going to kill off the little hairs I for up to the brain. So a lot about that. So we see, particularly with diabetes, it’s a big indicator of possible hearing loss because people are, have reduced circulation and blood flow to the inner ear.
Debi Lynes (15:52): And talk to me about hearing loss and dementia because I know that as my mom’s hearing deteriorated, it seemed as though cognitively there was a, it got, she got worse and worse cognitive.
Natalie Lucas (16:08): Without a doubt. And major studies are now proving that that.
Debi Lynes (16:12): So dad, where are your hearing aids please. Please dad, where you’re hearing it’s please.
Natalie Lucas (16:19): So what we’re learning is that when people go with untreated hearing loss, what you’re doing is you’re disengaging, you’re withdrawing from society, from conversation, from people. You’re disengaging and you’re retreating within your own head. People get tired of asking people to repeat or they’re embarrassed by it. And so we all have been in tough times in your life, you’ve all kind of learned, I think most of us have learned somewhere along the way that the best place for you to be is not always inside your head.
Debi Lynes (16:53): No, isn’t that so true?
Natalie Lucas (16:53): And so, you know what hearing aids do is keep you engaged and keep you plugged in. But hearing is also stimulation fitness, if you will, for the brain. So it keeps your brain stimulated and healthy and fit and active. And they’re proving right now that early adoption of hearing aids and consistent wear of hearing aids will, in fact, ward off dementia, Alzheimer’s, depression, risk of falls. These are major studies coming out that are showing that no, just going along as is and saying, okay, I’m old. I don’t hear anymore. Well that’s not the way to go.
Debi Lynes (17:28): I found that and you and I have talked about this when we’ve just had our conversations. I found that exactly like my monovision or my contacts. If I, I just decided I needed them. It wasn’t like, Ooh, should I shouldn’t. I would have pain this, that or the other. And I remember the month I hear and tell me, is this true? Is there sort of a adaptation period where your, your body sort of recaptured?
Natalie Lucas (17:56): Absolutely. You’ve got to, you’ve takes people a really long time for the most part to lose their hearing unless there’s a traumatic event or a virus or something that takes their hearing. So you’ve spent all these years slowly diminishing your hearing and then we bring it back to you at all, all at once. That can be overwhelming for the brain saying, yeah, dishwasher big time.
Debi Lynes (18:17): My two year old [grandchild] wooh..
Natalie Lucas (18:20): It takes time to adapt. You’ve got to give it time to adapt and it’s no different than if you were to get glasses or contact lenses. Your brain needs time to adjust to a new reality.
Debi Lynes (18:28): Can we take a quick break again and come back and talk about sort of what is trending or what is on trend for hearing devices and where we are going with the future. And I’d also like to talk about how long hearing aids last. So stay with us. We’ll be right back here on aging in place.
Henrik de Gyor (18:48): For more podcast episodes, links, information and media inquiries, please visit our website at aginginplacepodcast.com as we transition through life with the comfort and ease you deserve, discover how you can create a home that will adapt to you as you journey through life and the changes it will bring. Please follow us on Facebook, Twitter, and Instagram as our host Debi Lynes and her expert guests discuss relevant topics to creating a home for all decades in life. Don’t miss our weekly episodes of Aging in Place Podcast for every stage in life.
Debi Lynes (19:25): We are back here on aging in place for any stage in life. Natalie and I are laughing and talking about hearing devices and glasses and I guess these are medical conditions. I’d like to know a little bit about what is on-trend. What you are seeing is new and improved in hearing devices and kind of where we’re going.
Natalie Lucas (19:42): Yes, you want them red and blue bold colors. Yo, I want put dazzled and styled. I want them to be accessorized fabulousness. Um.
Debi Lynes (19:55): I don’t know it, it’s an awful lot of competition with what the area needs.
Natalie Lucas (19:58): Maybe we can kind of coordinate them.
Debi Lynes (20:00): I’d be in for that. I’d be down for that.
Natalie Lucas (20:02): For the most part, the industry is all moving towards rechargeable using a lithium-ion battery and getting rid of the old hearing aid batteries. That’s problematic for a lot of people because fine motor skills and plus it’s the same old battery and lots of new technologies. So there’s hearing aids drain the batteries really fast, especially.
Debi Lynes (20:22): My dad has those with rechargeable. It drives me absolutely cuckoo because I feel like they spend more time on the recharge or then they do.
Debi Lynes (20:31): The original ones did and they’re improving on that. There are some rechargeable hearing aids out there now that have a 30-hour battery life, so you never have to worry about the first rechargeables would start dying on you every day at about dinnertime, right when you really need them. Right. So they’re improving on rechargeability moving. I think the whole industry will hopefully be there in five or so years. They’re everything is to pairing and connecting with a cell phone and Bluetooth capability, streaming, taking phone calls through your hearing aid.
Debi Lynes (21:01): You love that.
Natalie Lucas (21:02): Streaming music and books, books on tape. I have a patient who walks five miles every day and listens to her books on tape.
Debi Lynes (21:08): And I listened to my, whenever I’m out walking, I love the music through my hearing aid. It sounds great on the treadmill.
Natalie Lucas (21:14): They’re really fancy earbuds. And we’re, we’re getting more and more capable of doing more things with them beyond just hearing. There are some hearing aid manufacturers that are turning the hearing aids kind of into a Fitbit or an activity tracker or a fitness or health tracker, tracking your heartbeat, your heart rate, your steps can do all sorts of things there. I’m not sure how far that will go if that’s more of like a short term kind of testing the waters out. We’ve got so many devices that can do that. Our phones, our watches.
Debi Lynes (21:48): Are most hearing devices now. Mine go over the back of my ear and I think the microphone is back there, right? Correct. Are there different, I don’t want to say styles cause I’m not really interested in this style, but different kinds. I’ve seen some that are just go into the ear.
Natalie Lucas (22:04): Every hearing aid manufacturer is going to make a hearing aid that goes behind the ear and maybe a big one that goes behind the ear. We would call that a BTE. That’s for people who are severely or profoundly deaf, a lot of power. Then the general behind the ear one like what you have, what many many people have. Those tend to be the most comfortable to wear they can fit a variety of types of losses and because there’s more real estate, because the unit is behind your ear, you can put more features into them, but it’s also not suitable for everybody who maybe don’t have the fine motor skills to work the little wire into your ear.
Debi Lynes (22:43): Yeah I think that’s, that’s been a hard, now that it’s when she, it’s kind of like contacts like we talked about. Once you get used to putting them in and taking them out.
Natalie Lucas (22:52): You have to learn the shape of your ears. We’re all different and most people have never thought about the inside of their ears until they end up in a set of hearing aids.
Debi Lynes (22:59): And again, I always use my dad to talk about, but it has absolutely driven him nuts. Not to hearing aids per se, but getting him in and out.
Natalie Lucas (23:06): It can be hard. People who have really twisty, windy or narrow ears or prolapsed ears that can be very hard in those cases. And in cases where maybe people don’t have good motor skills or other needs, maybe they have dementia and Alzheimer’s and caregivers, we can look to a custom hearing aid and those are the kind that just fit in the ear. They can go from very, very tiny to filling up the whole ear. Um and with a custom, what we’re doing is it’s a closed fit. We’re blocking out everything, all of the natural sounds. So they tend to be better for people who have more severe or flat low loss, meaning they don’t have any good hearing to lean on.
Debi Lynes (23:47): Once you get a hearing device, do you tend to not lose any more hearing? How does or how does all that work there?
Natalie Lucas (23:54): Sensory neural hearing loss. It can be age-related presbycusis is what you call that. It can be genetic noise induced ototoxic medicines can cause it.
Debi Lynes (24:07): Like grateful dead end days.
Natalie Lucas (24:09): Exactly the Rolling Stones somebody the other day said as she thought her hearing loss stem from Bon Jovi, it can be ototoxic medicines and said sort of certain medicines that doctors prescribed to fix one thing and damage your hearing. Things like chemotherapy and radiation. So there’s so many internal and external variables. There’s no way to predict.
Debi Lynes (24:32): Is there an ear device hearing device hygiene that we need to know about or even eat ear hygiene that would be preventative or helpful?
Natalie Lucas (24:45): Not really, I’m sometimes amazed, you know, you should check on the cleanliness of your ears every once in awhile. That’s not a bad thing to do. You don’t.
Debi Lynes (24:58): There some people produce more wax than others.
Natalie Lucas (25:00): Some people produce gobs and gobs a wax. Some people produce next to no wax earwax or cerumen as a glandular production. So it varies from person to person, but you do want to kind of check-in on, you know, are your ears clean? Every once in awhile I’ll come across people who are completely impacted from the outer of their ear all the way back to their eardrum with ear wax. And that is an ear wax induced hearing loss. They may have other hearing loss, but it will block your hearing. Earwax is nature’s perfect sunblock.
Debi Lynes (25:31): So you have a pair of hearing devices now, what is the recommended way to clean them? Is it easy? Is it hard? Do you need to? And then how often do we come back and visit and see you in optimal hearing?
Natalie Lucas (25:43): I see all of my patients every four months. Some don’t want to see me that much and they’ll push it out to six.
Debi Lynes (25:48): Right and other people will come every two years because they can.
Natalie Lucas (25:51): Right and then some come every couple of weeks just to say, Hey but it is important to keep people moving forward and to have somebody else hearing. Sometimes people don’t realize new hearing aids aren’t working well because the brain hears the hearing aid turn on. It tells them they’re working. So checking on vacuuming the microphones in fact.
Debi Lynes (26:13): Vacuuming the microphones.
Natalie Lucas (26:14): I have the world’s tiniest vacuum in my office.
Debi Lynes (26:16): Yeah, I am going there tomorrow.
Natalie Lucas (26:19): But in terms of keeping them clean, you want to brush them off. Okay. Things like pollen, skin cells, dandruff, all of these things can settle in the microphones and affect the performance. I always say we’re humans, so we’ve got a lot room alone.
Debi Lynes (26:34): Walking in the rain.
Natalie Lucas (26:35): Not bad. Most hearing aids are very, very water-resistant. I jump in the pool with them. I had a gentleman just recently swim about 10 laps before he realized you can get your hearing aids and Oh, take them out. If they get them wet and put them in a bowl of dried rice, just like you would your cell phone and it’s going to pull the moisture out of them. You can a lot of times save your hearing aids even if you’ve submerged them.
Debi Lynes (27:00): What do you see age span of a hearing device?
Natalie Lucas (27:04): Manufacturers, one is to say five years and that’s because we’re in a technology boom and keeping all of those old, outdated parts. I tend to tell people five to seven years. I have patients who come see me. I saw a woman today who was in hearing aids from 2012. They’re still working for her. We needed, she needs to stay in them. So we kept her in them and we take care of him for her.
Debi Lynes (27:28): Once you have your hearing devices, do you, is it like a car? Can you like turn them in and upgrade?
Natalie Lucas (27:33): No, for the most part they’re, they’re regulated as medical devices. So they and they are, they’re living in a 98-degree body. They’re kind of as no exchange program. I have helped people put them on a cell behind the ear style cause that’ll fit everyone. I have helped people sell those before in neighborhood flyers, eBay, you’ll see sometimes you’ll see them for sale.
Debi Lynes (28:03): Slightly used.
Natalie Lucas (28:03): Slightly used. Buyer beware. Of course, you want to make sure that they are good working hearing aids. But you can.
Debi Lynes (28:12): You have been amazing and super fun to talk to before we go. It’s shameless self-promotion time. Oh I need to call this that. So if you name after want hearing website where we can track you down. Miss Natalie.
Natalie Lucas (28:29): So my name is Natalie Lucas. www.optimalhearing.com. I have offices in Hilton Head and on Bluffton and you know, my favorite part of my job is taking care of people. I’m really big on education. A lot of times people are scared before they come and go find out what’s going on. Don’t be. Come see me and um you’ll learn a lot no matter what.
Debi Lynes (28:56): Thank you so much for joining us here on aging in place. Bye-bye.
Debi Lynes (29:01): I’d like to introduce you to a friend of mine, Tracy. Tracy is naturally curious and always creative. And when we were doing the Aging in Place Podcast, she said there are so many quick tips that I can think of offhand. My response, who knew she’s going to be with us every week, giving us a quick tip and to hint that is a practical application.
Tracy Snelling (29:29): Thanks Debbie. This next tip came from one of my friends who has a hearing disability. She’s in her twenties and she wears hearing aids. I thought this was such a great idea that I needed to share, even though I don’t have any hearing problems, I’m still doing this today. When Sarah is home, she remains barefooted or she wears socks. She removes her shoes at the door. Why? It’s not because of the dirt or the mud. It’s because of vibrations. She says she can feel the floor move. She feels the vibration of the door opening or closing. She feels the vibration of her dogs. Paul’s coming down the hall. She even feels the vibration when something is dropped, not even the room where she’s standing. Who knew? Well, Sarah did. I was raised in a barefoot at home shoes, first thing off and last thing on only because I’m a little bit country. I am now more aware of the vibrations of my own home and I’m also talented enough to pick up my ink pen with my toes when I drop it. I felt the vibration. Who knew?
Debi Lynes (30:36): Natalie Lucas, It was a lot of fun today to talk with you. At the end of every podcast, we have a takeaway and the takeaway today is this, do not neglect your hearing. It is one of the most important things you can do for your health and wellness. Thank you all for joining us this week on aging in place. Have a great one.
Henrik de Gyor (30:59): Aging in Place Podcast is hosted by Debi Lynes and produced by Henrik de Gyor. If you have any comments or questions, send an email to debi@aginginplacepodcast.com we would love to hear from you. If you’re interested in advertising or sponsoring this podcast, email us at pr@aginginplacepodcast.com. Thank you for listening to Aging in Place Podcast.
Open a dialogue and invite a conversation about aging in place end of life. It may be difficult to open that conversation, but it sounds to me like the rewards are exponential. What is palliative care? How death with dignity and having a quality of life is the most important thing.
Transcript
Debi Lynes: 00:03 Hi and welcome to aging in place for every stage in life. What if you could visit or have a home that would accommodate anyone at any age, any physical ability at any time? How cool would that be? That’s what we’re doing here at aging in place. Why me? Because I’m a doctor of psychology and I specialize in physical spaces in health and wellness. Also, I love designing with intent at any age. Why now? Because we the baby boomers want to age in place gracefully and we want our families around us as much as we can and why you the audience? Because we want you to experience what it’s like to have a home that’s safe, aesthetically pleasing, and that you can live in at any age with any ability at any time. I’d like to introduce you now to Aging in Place Podcast for every stage in life.
Debi Lynes: 01:05 Hi and welcome to aging in place for any stage in life. I am here today with my friend Janet Porter. I am thrilled to have you here with us. I would like before we even began to chat about palliative care and everything we’re going to talk about for you to share a bit about your history. It’s fascinating.
Janet Porter: 01:23 Sure, Debi, thank you for inviting me. I am a hospital administrator by background. I had a guidance counselor in college tell me “you should be a hospital administrator”. And that’s what I’ve been most recently. I was at Dana-Farber Cancer Institute in Boston, but I’ve also been passionate about leadership development throughout my career. So I’ve spent a lot of time as a faculty member at a lot of universities teaching leadership development and I’m most recently been very involved in governance. So I’ve been on the board of AARP. I’m on the board of trustees at Ohio State and relative to today’s topic, I chair the hospice board, hospice care of the low country and Hilton Head because I’ve been very passionate, not only about leadership development, but about end of life throughout my career.
Debi Lynes: 02:11 Well, you know, talking about aging in place at any stage in life, I think we often have a misconception that that is really about older people dying at home. I think the goal for this podcast is to really help people understand what it’s like to be able to have anyone at any time come into your home and feel comfortable. And I think it’s really interesting to talk to you today about palliative care, what it is and really about what it’s like at the end of life to age in place and specific things we may need.
Janet Porter: 02:42 Okay.
Debi Lynes: 02:43 So let’s get started and talk a little bit first about what palliative care is.
Janet Porter: 02:48 Sure. Palliative care is a specialty in medicine, just like becoming a radiologist or an emergency room physician. And you actually get board certified in palliative medicine and it’s really physicians who oftentimes have all different types of backgrounds. They might be a pediatrician, they might be an internist, they might be a radiologist, they might be a nephrologist, but they’re often dealing with complicated patients and end of life patients. So palliative care doctors learn the process of really symptom management and managing the complex illness of patients and they’re often brought in as a referral at end of life because they’re usually very expert at also having the tough conversations.
Debi Lynes: 03:30 It’s really interesting when you’re talking about it. When I think of palliative care, I think of end of life, no more active treatment interventions and it’s more about quality and comfort. What was interesting about what you said is also complex cases, so not just end of life.
Janet Porter: 03:49 Right. So we have patients who get referred because of complex medical problems. They might have GI problems, they might have, you know, serious arthritis. They might have lots of different complicated problems. A lot of contraindication with medicine, met various prescriptions. Sure. And they’ll get referred to a palliative care physician to help them manage the complex care and all their symptom management and may be with that patient for years. It is true that a lot of doctors who specialize in end of life care had been trained in palliative medicine. I’m a faculty member in Harvard’s leadership program in palliative medicine and those physicians in that program and nurses and others come from a whole variety of backgrounds, but at their heart really want to help people die with dignity at end of life.
Debi Lynes: 04:37 So let’s bring that back to the aging in place in your home. Why is that so important to remain at home?
Janet Porter: 04:45 Well, you know, one of the things that surprised me because my parents were not like this when I joined the board of AARP, is how, what, how many people want to age in place, aging in place and dying in place is the strong preference. 85 90 95% of people do not want to leave their home. And so this is a really relevant topic because people not only live a fully.
Debi Lynes: 05:11 Correct.
Janet Porter: 05:11 In their home as long as possible, but oftentimes, I mean, mostly patients want to die at home. Also.
Debi Lynes: 05:17 Let me ask you a question. Is this a United States thing where we want to stay? Well, where we typically have older people go to facilities or nursing homes as opposed to multi generational living?
Janet Porter: 05:31 Well as you know, other cultures are in other countries are often much more respectful of elderly elders and honor them and want to honor their wishes and do have multi generational support with families living.
Debi Lynes: 05:46 Yeah exactly.
Janet Porter: 05:46 Close to each other. United States is so large and people are so young. People are so scattered now.
Debi Lynes: 05:52 True.
Janet Porter: 05:52 That it’s very unlikely they’re living close to their elderly parents.
Debi Lynes: 05:56 But with that mind, I think as a baby boomer, someone who’s over 50, I’m not so gracious about being transported to a facility. I think I’m going to really, I want to know more about this. I want to know how to age in place. I want to know today at 60 or 66 how to create a home that I can age gracefully and, or die with quality. And I want my kids to create a home for me that I can visit.
Janet Porter: 06:26 Yes.
Debi Lynes: 06:26 And stay engaged and involved. So it’s really back to everything you’re talking about.
Janet Porter: 06:32 Yes you know, it takes me back to my grandfather who was about 70 years old and in, in a little town called Verona, Pennsylvania. And he said he was having heart trouble and I, when the ambulance came, he was like, I’m not leaving my home. You know, I am fine here. I’m out. And he handed the car tech and died in the ambulance, but he was, he didn’t want it. He was walking down those stairs and he wasn’t going on a gurney, you know, and so many of us, that’s, that’s, that’s what place we found safe. And hospitals are, you know, oftentimes challenging places in terms of infection rates and errors. And so say home is a safe, safer place a lot of times.
Debi Lynes: 07:10 it is a safer place. One of the things we talk about on the podcast a lot is how to create that safer place from a being on the board of AARP, number one and number two, just having an end of life interest, passion and specialty. What are some things that you can think about that are just easy ways to make your home more visitable?
Janet Porter: 07:32 Well, the first thing of course, is to live on one story. I mean that’s the most surprising thing to me is the number of people that I know who choose to live in homes that have many stairs to.
Debi Lynes: 07:44 Show up.
Janet Porter: 07:44 Which is very difficult. So either being on a one story house or a one story house that has a bedroom so that you can be on one floor is the major thing because it’s the biggest obstacle to people being able to stay in their homes is stairs.
Debi Lynes: 07:59 Okay.
Janet Porter: 07:59 Either stairs coming into the house or a second or third story.
Debi Lynes: 08:02 Let me ask you a question about going back to palliative care for just a moment and ask at what point do do palliative care physicians or even the process of palliative care come into play? In other words, as a patient who has a chronic disease, at what point would I perhaps call in a palliative care physician.
Janet Porter: 08:25 At any point you can ask your physician, your primary care physician, just like you could ask to go to see an orthopod or an ophthalmologist.
Debi Lynes: 08:35 Sure, sure.
Janet Porter: 08:36 Or you can say, my symptoms are so complex and require such management, I’d like to be a referral to a palliative care physician. Unfortunately, we don’t have a lot of them around the United States. The big cities have them, but it’s tough to find outpatient palliative care. We’re getting in terms of producing more people who have this interest, but it’s tough to get them when you’re an inpatient. It usually happens because the family insists we’d really like to talk to a palliative care doctor. And that oftentimes then leads to the tough conversations about what really mom or daughter or sister wants at end of life.
Debi Lynes: 09:14 And I think that those are the two questions I want is what does palliative care really look like, number one. And then we’ll take a break. What does it look like and then come back. And I think during the second segment, I’d love to talk about, having tough conversations.
Janet Porter: 09:30 Okay.
Debi Lynes: 09:30 So let’s talk first about what palliative care looks like to the patient.
Janet Porter: 09:34 To the patient who let’s say a patient is an inpatient and the family says we’d really like a palliative care consult that involves a physician who’s understanding the full scope of illness of the patient and what the treatment plan has been, but is also really focused on symptom management and what symptoms are they trying to get under control, whether it’s end of life or not. It’s oftentimes the symptom management that’s critical to get the patient home, which is where they want to be. So palliative care can be helpful with the symptom management so that the patient can go home and then home care or if it’s end of life, hospice care can care for them, but have palliative care. Also good at having the conversation.
Debi Lynes: 10:14 Exactly.
Janet Porter: 10:14 Tough conversation with the family at end of life.
Debi Lynes: 10:19 We’re going to have a take a quick break. We’re going to come back and I’d like to talk about what those tough conversations look like, how we begin to have them. And then I’m also very interested in the component pieces of those conversations. What just popped into my mind was what about do not resuscitate? What about who is the executor of my estate? I’m thinking all at once. Things that my mind is like too much to comprehend. So stay with this. We’ll be right back here on aging in place.
Debi Lynes: 10:50 Hi, I’m Dr. Debi Lynes design elements are psychologically and physically supportive and conducive to health and wellness. To learn more about what Lynes on Design can do for you, for more information on certified aging in place and facilitative and supportive design, look for us at lynesondesign.com. That’s L-Y-N-E-S on design dot com.
Debi Lynes: 11:16 We are back here on the Aging in Place Podcast for any stage in life. I’m here again with Janet Porter and we’re talking, we’re somewhat all over the board, but the focus is on palliative care and that has sort of morphed in and something that you’ve taught me in preparing you and I talked about this at lunch one day about asking the tough questions, having to tough conversations. So I’m going to turn this over to you. This is pretty interesting.
Janet Porter: 11:42 Well, in the United States…
Debi Lynes: 11:47 Okay.
Janet Porter: 11:47 The legal field has legalized dying, which is then you really declaring where want your assets to go. People understanding where to where do your assets go through a will through other documents. But the other thing that’s happened is the medical establishment has medicalized dying has made it about what procedures you do or do not want. Do you want to feed into it? Do you want to be put on a ventilator. What do you want to do if you’re in a vegetative state. And while those things are important, and we’ll talk about the documents you need for both of those, that’s important. The truth of the matter is what we want when a loved one is dying is we want to honor their wishes. And that is, that does not just mean whether they want a feeding tube or where they want their, you know, precious, you know, figurines. But instead is knowing not what’s the matter with you grandma, but what matters to you.
Debi Lynes: 12:42 Wow.
Janet Porter: 12:42 And it’s about having that conversation about what matters to a 19 year old and 89 year old. That is really important because what we want to do is honor what matters and.
Debi Lynes: 12:54 How do you even begin that conversation.
Janet Porter: 12:55 Well actually there’s a great resource. It’s called the conversation project conversation project.org very easy to find.
Debi Lynes: 13:05 Perfect.
Janet Porter: 13:05 On the web. And Debi, they have toolkits that are little, little forms that you can go through where you reflect on the conversation you want to have with your spouse or your 19 year old son is not road riding around without a motorcycle helmet on.
Debi Lynes: 13:20 Right exactly.
Janet Porter: 13:20 Yeah and that document, that little toolkit kind of walks you through how to prepare for that conversation. When do you want to have it? Who do you want to be there? What questions do you wanna ask, etcetera. You know, the conversation project has done a lot of research on this and 92% of people say if they were seriously ill, they would want to have a conversation with their doctor about their wishes. 32% have chosen to do that. But more importantly, 80% of people say that if they were seriously ill, they would want their loved ones to know what their wishes were. 18% of people who’ve seriously ill have done that. I mean the statistics are overwhelming. The 21% of people say they’d like to talk to a loved one about what they want, whether they’re healthy or what, and yet they haven’t done it.
Debi Lynes: 14:05 Is it fear, blame, shame, embarrassment, fear?
Janet Porter: 14:08 You know what you remember Dr. Ruth?
Debi Lynes: 14:11 Okay, Oh my goodness.
Janet Porter: 14:12 Yeah, yeah.
Debi Lynes: 14:14 I like her.
Janet Porter: 14:14 Yes exactly. So you know, we couldn’t say the word orgasm on television until.
Debi Lynes: 14:18 Exactly.
Janet Porter: 14:18 Dr. Ruth came along.
Debi Lynes: 14:19 I still remember that.
Janet Porter: 14:22 Little German woman saying that she, you know, talking about words that we’d never used before on television. Well, I kinda think we need a Dr. Ruth of death. You know, because talking about sex was a taboo subject.
Debi Lynes: 14:36 Correct.
Janet Porter: 14:36 It’s much less taboo now because of her and others. And death is a taboo subject. It’s not something people feel comfortable talking about.
Debi Lynes: 14:45 Which is ironic that you say that because I’ve got nine grandchildren. I was 10 and my little five and six year. When they’re in the back seat, they’re always talking, what does heaven look like?
Janet Porter: 14:55 Are they?
Debi Lynes: 14:55 What is it they feel like, well they lost a dog. What does that feel like? And it’s really interesting to listen to them be so open to the circle of life kind of.
Janet Porter: 15:06 Yes.
Debi Lynes: 15:06 Where we as adults are like, Oh my gosh, we’re trying to protect you. We don’t want to talk about things that aren’t wonderful and you know, rainbows and butterflies.
Janet Porter: 15:14 Exactly, exactly. When I do, when I do presentations on this, I say to sometimes to college audiences, I’ll say, I’m going to talk to you about my sex life, and they all like sit up and feel uncomfortable and have butterflies in their stomach. I said, okay, I’m not really going to talk to about my sex life, but I’m going to talk about personal financial planning. And they’re like, they’re like, what? I said, you know what? You would feel equally uncomfortable if I talked about sex.
Debi Lynes: 15:37 That’s right.
Janet Porter: 15:38 If I talked about dying or if I talked about personal finance, how much I was net worth because we have these cultural taboos against topics that it’s okay, I don’t know about you but I don’t have any idea what my best friend makes or what.
Debi Lynes: 15:50 I don’t neither.
Janet Porter: 15:50 Not. A, we don’t talk about it and we don’t talk about death. We don’t talk about end of life and what’s important to us. And, and you know, what’s important to people in terms of their wishes is things like I want to reconcile with my brother. I want to know what’s gonna happen to my cats, who’s going to take care of my garden. I mean knowing those things about what’s really what matters to people and what would give them solace if they could resolve before the end of life is really important gift. We want to give those we love.
Debi Lynes: 16:21 And it is a gift. When my mom died last August, we found in one of her calendars from 2004 every year she had written, we had no idea she had written, if she died, you know what she wanted. And to your point, not her assets, but what song she wanted played. She did not want a picture in her just over and every year she’d cross it out and change it or adapt it and then initial it.
Janet Porter: 16:53 Yeah, Yeah, you don’t want my mom, my mom’s was what the color of the tablecloths were going to be.
Debi Lynes: 16:59 Love her. I like that, I get that. And the colors change year to year, but at least we knew it. End of life, which color she wanted. So we’re talking about a taboo subject. Do you and I right now with humor.
Janet Porter: 17:13 Okay.
Debi Lynes: 17:13 With serious subject. But there’s a lot of beauty to it.
Janet Porter: 17:18 There is, you know the, the thing I read a recent, [inaudible] article written by BJ Miller, who’s a national expert tie to palliative care doctors, a national expert in essence, the interviewer asked him, you know, what the experience was like at end of life. And he talked about how many people that he’d gone through the death process with who were really relieved and felt solace that issues had been resolved, that were, that were bothersome to them. So, it’s really an important thing for us to make sure that people live fully the end of life and then die at peace. And I would think of it.
Debi Lynes: 17:52 And what does that mean? I hear that a lot die. The quality of life and death with dignity. I hear that from hospice a lot. What does that look like? Is it just encompassing everything that we’re talking about? And then what?
Janet Porter: 18:04 I would say the number one thing is it looks like a lot of listening. It looks like really listening to the patient and the family in terms of what matters to them and honoring that. And hospices across the country are expert at that. They’re expert at really going in and helping not just the patient, but the patient and family deal with this major life transition. You know, Debi, that we’re all gonna face. And what I say to people is giving the gift of the conversation to people is a wonderful thing. When my mother passed away, she had had a serious stroke and I had three sisters and she was in the hospital and my mother had been very clear about what her wishes were and we got on the phone one day, they were doing all this stuff in the hospital and I knew she was really in bad shape and we got up one phone call on the with a palliative care physician and in an hour the palliative care physician said to us, are you clear about what your mom wants? We said, absolutely. And they said, then you need to honor her wishes, whatever. That if we took her off all medication, we took her out of the hospital, we put in our hospice care. She ended up living in other full year, which was big surprising to us.
Debi Lynes: 19:16 But alongside of that and kind of the underlying CMI here is four girls, right?
Janet Porter: 19:23 Three girls,
Debi Lynes: 19:24 Three girls. There were three girls and it was less about individual points of view about how to manage your mother. But the doctor basically said, you will take you and put you here. This is about your mom’s wishes.
Janet Porter: 19:37 Yes.
Debi Lynes: 19:37 So in some ways that helped avoid a lot of potential because we all, we all see through our own lens and have ideas of the way things should be for the people we love.
Janet Porter: 19:49 You can’t ask anyone, what do you want an end of life and have the person to answer. I want my children to be fighting over what should be done.
Debi Lynes: 19:57 Right.
Janet Porter: 19:57 No one wants that. Right? And so how can your children do what you want if you don’t tell them and tell them together. Not just Susie, the oldest daughter, right. And leaving the boys out of the conversation, which happens, but in fact being clear about it both verbally with them and in writing so that they can then have unanimity about what’s the best thing for mom.
Debi Lynes: 20:21 It’s so funny. Bernay Brown who is a psychologist and she’s really an inspiration. I was like clear is kind and I.
Janet Porter: 20:29 Exactly.
Debi Lynes: 20:29 Say, yeah, and this is the perfect place to do that. I know we’re going to take a quick break. We’ve got a couple of things to come back and talk about. We’re going to talk about some of the tools within those toolkits, paperwork, documents, things like that that will be helpful and I also would love to have you share an anecdote about your favorite book. I’ve been looking forward to this and I thought it would be a great way to exit the interview.
Janet Porter: 20:50 Okay yes.
Debi Lynes: 20:50 So stay with this will be right back here on aging in place.
Henrik de Gyor: 20:55 For more podcast episodes, links, information and media inquiries, please visit our website at aginginplacepodcast.com as we transition through life with the comfort and ease you deserve. Discover how you can create a home that will adapt to you as you journey through life and the changes it will bring. Please follow us on Facebook, Twitter, and Instagram as our host Debi Lynes and her expert guests discuss relevant topics to creating a home for all decades in life. Don’t miss our weekly episodes of Aging in Place Podcast for every stage in life.
Debi Lynes: 21:32 We are back here on aging in place. Again, we’re here with Janet Porter and we are talking about aging in place. We are talking about palliative care. We are talking about having an end of life discussion. And what resonated with me was what I think you probably see all the time. You’ve got the emotional one, you’ve got the stoic matter of fact buttoned up. Here’s my list, here’s what you want to do. And everyone is so different. How do you guide someone through this process?
Janet Porter: 22:01 Well, that’s one of the reasons that hospice care and palliative care physicians are so important because it’s all about listening, but it’s about helping those disparate opinions come together and reach consensus and it’s very tough. And you know, it’s emotional for people. Some people are more pragmatic and thinkers. Some people are in denial. What’s sad is the number of people who report that they brought it up a couple of times with their children or their spouse. This is what, I don’t want to talk about it. I don’t want to talk about it. Oh my goodness. There’s nothing worse you can do when somebody is ready to talk about what they want an end of life than to shut them down. It’s been, they’ve probably thought about it a lot before they’ve come to you. Right? And so being open, emotionally open to recognizing and you might not be the first time and then you’ll go back and think about it. But when a loved one is ready to have the conversation, the gift you could give them is to be there and really listen with an open heart. Some of the data is that 53% of people say they would be incredibly relieved to be able to have the conversation but have been blocked from doing so. 95% of people at end of life say they’re willing to have the conversation that maybe somebody else has to bring it up. So you know, if mom or dad doesn’t bring it up and you think it’s time, you need to figure out a way to bring it up. And that’s why the conversation project again, conversation project.org is such a great tool. They have tools, they have tool kits for dealing with people with dementia. Because imagine how complicated it is when you, not only a degree, but you really can’t. It’s too late to have the conversation with mom. I mean imagine how tough that is.
Debi Lynes: 23:39 Yeah, I never thought about that.
Janet Porter: 23:41 Oh yeah, they have a car, they have a tool kit for dealing with children, walking children through about what they want and, and they have one for adults so they have different toolkits based on the situation.
Debi Lynes: 23:51 If you could just give us an overview of documents or people that you would like to see involved in the team. Okay. As we have a chronic illness that we need to manage or where at the end of life is there a team you would put together?
Janet Porter: 24:07 Well let’s, let’s say, let me ask you answer the question about documents cause you mentioned documents. There’s another resource I’d like the audience to have. It’s called a Five Wishes, five wishes.org. And it walks you through the five wishes as to what my mom and dad or brother or sister or anybody would want. and prepares you for that conversation. And it’s a document that’s legally accepted as a will in for something like 42 States. So five wishes. It’s downloadable right from the internet. It’s not complicated and expensive and so people say, well, what prohibits them as, they don’t want to go to a lawyer and spend $500 or a thousand.
Debi Lynes: 24:45 Right.
Janet Porter: 24:46 It’s right there available on the web for you to clarify your wit, your medical wishes, your legal wishes and other wishes that you would have an end of life.
Debi Lynes: 24:54 Oh, that’s huge. Five Wishes. I think we’re all going to be on that immediately. What stage? Let’s, let’s go back to the, the palliative piece for chronic illness. Okay. Is that really more about how to keep a person safe and healthy at home with symptom management and what does that look like?
Janet Porter: 25:13 Mmm. Yes. I would say that’s a good description. It’s about helping them to manage their symptoms so that they can live life as fully as possible. Because after all, what we want people is to live fully until they die. And we have incredible stories of people who in their last year of life or six months of life have done incredible things. I think I’ve mentioned to you that my favorite book is this book Driving Miss Norma.
Debi Lynes: 25:38 This is what I’m dying to hear.
Janet Porter: 25:40 And I give it to everybody. I should’ve brought it today. I gave it to you that right.
Debi Lynes: 25:46 I loved it. I read it.
Janet Porter: 25:47 So Driving Ms Norma is a memoir and it’s by Tim and Ramy who are a couple who went to Michigan one year. They were living in the Airstream trailer kind of nomads and they go to Michigan and Tim’s father dies and mom is diagnosed right away with cancer. Mom is 90 years old and they say, mom, you can can’t stay in the house by yourself. We can put you in skilled nursing here, here in Pennsylvania with, or you could hit the road with us. And the next day when they go to the doctor, that doctor outlines the whole treatment plan for cancers, all these drugs and radiation and Miss Norma, what do you want? She said, hell, I’m 90 years old. I’m hitting in the road. And she wanted to go see Mount Rushmore and she wanted to go to New Mexico. They took her all over the United States. She had all kinds of adventures. I recently, I’ve done a lot of speaking on this and I had a physician that group, right. Not everybody’s going to have a big adventure at end of life. And I thought the messages in the book, I’m not about.
Debi Lynes: 26:45 What are the themes?
Janet Porter: 26:46 Well, the first theme I think is too is that people have a lot of life in them at every age and, and that you should honor their people’s wishes in terms of what they want. And she wanted to hit the road. So they had supported her hitting the road. There’s a lot of messages in there about how kind and open Americans were as they traveled around the country in terms of, because of the social media buzz she got, they opened their hearts. We’re here in Hilton Head and you know, when she, they ended up coming here, they ended up making her and putting her in the parade. She was in a car on the parade.
Debi Lynes: 27:19 Oh, I love it.
Janet Porter: 27:21 So, so that’s one of the major themes. And the major theme is about having the conversation with people about what you want. Major theme about hospice care. So the book is really a powerful testimony, I think. And I think also sparks the conversation. So if you want to have a conversation with somebody about end of life, give them the book, let them read it. It’s only a couple hundred pages. It’s a great story. And you can say, and what would be important to you, let’s say it’s your best friend who you’re worried about. What would be important to you and what can I do to help make that possible? There’s a, another book called being mortal, highly recommend.
Debi Lynes: 27:56 I read that about three or four years ago and I thought that was one of the most powerful books and I was resistant to it. And even being a psychologist, I don’t know why, I just didn’t really want, I don’t know. It was one of the best books I’ve ever read.
Janet Porter: 28:09 Yes.
Debi Lynes: 28:09 And how would you describe the theme of that?
Janet Porter: 28:12 Well, a tool. Gawande is a Harvard physician.
Debi Lynes: 28:14 Right.
Janet Porter: 28:14 I know him. He practiced at the hospital where I worked really good. He’s a thyroid cancer surgeon and he basically tells the book through this, through the story of his father who was a physician in Athens, Ohio and he comes home and realizes that his father really has terminal medical conditions and he then goes on to describe in the book what that was like for him personally and also shares a lot of story of his own patients. The PBS special about that, which I thought was terrific, an hour long special. What I thought was tragic and that at one point they had a woman who they were having the conversation with her about that this was the ad and she was sitting up in bed and she said, doc, all I want before I die is to take my children to Disneyland. And she died five days later. You know, and you think about if they had had that conversation with her about six months earlier, maybe she’d been able to do that. And think about what lasting memories that would have given to those grandchildren of their grandmother.
Debi Lynes: 29:12 Who typically in today’s culture and society brings up the, the death or dying, end of life conversation based on your experience?
Janet Porter: 29:23 Well, surprisingly it’s oftentimes not the patient, you know, patients, I worked at a cancer hospital for years and the vast majority of patients listen to what the doctor recommends and don’t really ask and what will be the quality of my life, what the, what’s my prognosis? And oftentimes take patients on a cancer journey a long time because the doctors very much want to keep them alive and are very hopeful about the treatments and you don’t want to take away people’s hope. And so people are often reluctant, both patients and family members are reluctant to say, tell me really what the prognosis is.
Debi Lynes: 29:56 And that’s not saying you have three months to live. That’s just simply being realistic.
Janet Porter: 30:01 Right, right.
Debi Lynes: 30:01 When you talk about a prognosis.
Janet Porter: 30:04 Right, right. I had a friend who came to Dana Farber cancer Institute and they’d been told, they’d been told at another cancer center that they couldn’t do anything else and they wouldn’t give them any prognosis. And he said, I want you to know I have grandchildren.
Debi Lynes: 30:18 That’s right.
Janet Porter: 30:18 I want you to know. And they said, if you stop all treatment, you’ll live six months. If you stay on standard chemo and we think you’ll live a year, but we’ve got a clinical trial for you that we think will extend your life beyond that. And when I went to dinner with them, they were so relieved and they had decided to do the clinical trial. He lived two and a half years and what he wanted was his grandchildren to remember him and he was so pleased with, by the time someone says, I want to know my prognosis he wants to know.
Debi Lynes: 30:48 What exactly. That’s not the first thing you ask when you’re diagnosed. That’s when you’ve run through a lot of the treatment options.
Janet Porter: 30:53 That’s right.
Debi Lynes: 30:54 I think it’s absolutely fascinating. You don’t realize how interesting the hell in the whole conversation is. And I think bringing it up, demystifying it, and having an open dialogue like this. Oh, I’d like to invite everyone who’s listening to, talk to one of your loved ones. I think it’s a pretty powerful discussion.
Janet Porter: 31:12 Unfortunately, we sort of have a myth that we think doctors are really good at this and doctors are taught to save your life. And so the training that doctors get to really have these tough conversations is modest at best. And it’s not something they’re human beings.
Debi Lynes: 31:31 Sure.
Janet Porter: 31:31 People feel confident, uncomfortable talking about it. Doctors are human beings. They feel uncomfortable too. That’s why you need to ask the right questions for your loved ones and B, get potentially access to these resources and really think about what you can do to honor your loved one’s wishes at end of life. I also want to tell you that my mother was in hospice care and her mother-in-law had died on Christmas day when my dad was 16. And my mother felt really passionate about the fact that you should not die on Christmas day. So we had a minister who was coming to sing with her cams Oh irregularly. And he came to see her on December 22nd and said, Myrna, what do you want to sing? And for the first time ever she said, I want to sing. I’ll be home for Christmas. And they sang the last song they sang together was I’ll be home for Christmas. And she went into a comment and she died on Christmas Eve. And what I said to people is my mother was very religious and so she wanted to sing. I’ll be home for Christmas. And she was and hospice care and Joe rock, the pastor who was caring for him gave her that final moment. And I’m so grateful.
Debi Lynes: 32:42 It has been an amazing conversation and we thank you all for participating with us in that Janet, especially you. Thank you all for joining us here on aging in place at any stage in life.
Debi Lynes: 32:53 I’d like to introduce you to a friend of mine, Tracy. Tracy is naturally curious and always creative. And when we were doing the Aging in Place Podcast, she said, there are so many quick tips that I can think of off-hand. My response? Who knew! She’s going to be with us every week, giving us a quick tip and a hint. That is a practical application.
Tracy Snelling: 33:23 Thanks, Debi. Surround yourself with needs and not one. Sometimes our areas can get a little messy and organization goes a long way. An organized space helps you move more freely. We tell our children to pick up their toys, but yet we keep a stack of magazines next to the couch. Play a game along with your kids. Have them walk around the house with you and let them tell you what you need to pick up or even better. Get rid of it. We get so comfortable with our things be nearby that we actually lose sight of them. I only need one pencil sitting on my desk so the other nine can go in a drawer. Who knew our children can be great organizers of our things.
Debi Lynes: 34:08 Hi, I’m Dr. Debi Lynes and thank you for listening to aging in place for any stage in life. We would like to ask you all to give us a review. Of course, preferably five stars. Thank you again and we hope you enjoyed aging in place for any stage in life. Janet Porter, what an amazing interview and talk about takeaway that you actually can take away and use. First of all, the most important thing I think that Janet taught us today was open a dialogue and invite a conversation about aging in place, end of life. It may be difficult to open that conversation but it sounds to me like the rewards are exponential. Additionally, what I learned and I think many of you also learned is what palliative care and how death with dignity and having a quality of life is the most important thing. Thank you all for joining us here on aging in place for any stage in life.
Henrik de Gyor: 35:09 Aging in Place Podcast is hosted by Debi Lynes and produced by Henrik de Gyor. If you have any comments or questions, send an email to debi@aginginplacepodcast.com we would love to hear from you if you’re interested in advertising or sponsoring this podcast, email us at pr@aginginplacepodcast.com thank you for listening to aging in place podcast.
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