Talking about death and dying is a natural part of life. And that hiring someone that you trust and develop a relationship with is going to be really important to celebrate the legacy of your loved one. And Jim shared today that one of the most important things to remember is that developing a relationship with your funeral director can really be helpful to make a tough time easier.
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Debi Lynes 1:03 – Hi and welcome to Aging in Place Podcast. I’m Dr. Debi Lynes. I am here today with my friend Jim Keith. And where, you know, it’s really interesting that we’re talking about dying today we’re talking not just about the process, we had hospice come on, and it was really amazing. We talked about palliative care and options about quality of life when you’re through the dying process. And now what I think what we’re going to talk about today is, is the next step from the point of view of both the family, children and really what needs to happen. So again, Jim owns Keith Funeral Home here in Hilton Head, South Carolina. But as you know, we’re kind of talking to everyone nationally, and it was interesting and even preparing for this. Talking about I didn’t realize that there were other options available other than going through traditional funeral homes. And it’s, you know, being an old school girl, it’s just caught me off guard.
Jim Keith 2:12 – Well, it’s interesting that because, you know, you talked about this being national, but when you think about the makeup of Hilton Head and look at where Hilton Head draws from, and we have people here from probably all 50 states.
Debi Lynes 2:25 – Yeah, I think you’re right.
Jim Keith 2:26 – And so a lot of the stuff that we talked about, maybe they’re here for six months, maybe they’re here for 12 months. Maybe they’re just here as snowbirds for three months. But it reaches out and you know, we can talk to them and they can understand what we’re doing.
Debi Lynes 2:38 – Can I ask you a broad spectrum question? First, I’m 66 years old. My mom died three years ago, my dad’s 91 years old and looks good.
Jim Keith 2:45 – for now.
Debi Lynes 2:46 – Pretty good. Dang, talk about irreverent and whoa. Anyway. At what point do you think a family should begin to consider what their wishes are for when they die?
Jim Keith 3:00 – Well, I mean, that’s a tough question. If you look at traditional stuff you say maybe in your 70s. Okay, but you see people just have a guy today who’s 60. Last week, I had a lady that was 47. And while those people had existing conditions that the family knew, sure, that’s the worst thing when someone has an existing condition, then you have to say, oh, my goodness, this isn’t gonna be very long, we have to go make arrangements. Well, that’s a tough position to put people in, because, you know, it’s so premature. It’s 20 years, supposed to do that. But in the 70s, I think it’s a fair amount. I get people that come in and say, Hey, you know, mom’s not doing so good. Well, How old’s your mom? Well, 94 and…
Debi Lynes 3:45 – you’re like, she’s had a good life.
Jim Keith 3:47 – She’s lived a good life. But, you know, maybe that’s something we should have thought about 10 or 12 years ago, but people don’t want to make that commitment because they feel that as soon as they say, I’m going to make pre-arrangements for mom or dad. That’s signing the warrant that they’re going to go ahead and go
Debi Lynes 4:03 – Do kids typically do it for their parents or do at 66? I think because you’ve educated me. I know, you know me, I went to Keith Funeral Home, and I fell in love with it because it has a retail section, which of course, we always have to take advantage of. There are amazing things in there. And I think rather than being afraid to be honest with you, you know, we talked about it. I looked at beautiful urns, I looked at lots of different opportunities and ways to be creative ways to really, to honor the way I live.
Jim Keith 4:40 – You know, that’s exactly right. You want to honor the way the person lived and, and some people, you know, you’ll get these people that will say, just throw me out with the trash because they’re afraid to spend money, but when you look at that person, nobody’s going to throw a loved one out the trash. No one’s gonna do that. But when they say follow my mother’s or grandfather’s wishes or something like that. And he maybe he was a veteran. And so we did a nice little Veteran Service. Maybe he was a carpenter and we can bring some stuff maybe that he made or woodworker or something like that and just display. It doesn’t have to be expensive, but it can be classy. And I’m a big fan of saying if you spend a bunch of money on a funeral, you’re mad at your money or mad at your kids. You know, like that? Yeah, it was just a casket, for instance, a casket. Your casket that is $1,600 does exactly the same thing as the casket that’s $5,000. Okay, it’s just not as fancy and doesn’t have all the decorations. Now, the casket companies don’t want you to know that. Okay, but when you put it in a concrete vault, it’s gonna last the same amount of time theoretically and who is gonna be around a couple hundred years to check, see if it’s right. Cremation has taken over.
Debi Lynes 5:55 – Okay. How is it evolved over the past 10-20 years and where do you see these services in the future
Jim Keith 6:00 – Well, when I got into the business… this is my 30th year of funeral service. We were about nationally we were probably 7% or 8% cremation. Now we’re over 50%. And if you go into states like Florida, Arizona, maybe California it’s really into the 60s or 70s [percent cremation]. Here on Hilton Head, we’re almost at 85%. And the more money you have and more education, you have more likely you are to cremate.
Debi Lynes 6:28 – And why is that?
Jim Keith 6:30 – Just I don’t know. It’s just that as our families change the old days know people who graduate high school, go to work at the factory, marry their high school sweetheart, move down the street and live in the same hometown. Well, they go around your families are spread out all over the country. They have different venues that they do. They go to college in different places here. And so here in Hilton Head, well, we might be sitting here in Hilton Head but someone might have family 200 miles away, 2000 miles away. And so to have a burial where you’re going to bring those people together in a finite amount of time, okay? I mean.
Debi Lynes 7:11 – That’s true.
Jim Keith 7:10 – Yeah. But when you’re cremate, you can say, okay, we’re not gonna do that this week. We can do it next week or next month.
Debi Lynes 7:15 – Ah, so it’s more convenient,
Jim Keith 7:17 – More convenient. It’s a lot less expensive.
Debi Lynes 7:19 – Are there typical services? Or is there a typical protocol for the way things happen? if let’s say for example, someone’s in hospice, or there’s an accident or I don’t even know what the protocol is. If there is one.
Jim Keith 7:32 – Well, usually when someone is in hospice, you know, that that’s gonna be a limited amount of time. And the hospices here are so good. Oh, my gosh, yeah. They’re so good. And they will come in and they’ll say, look, maybe your mom has six months, maybe my mother was on hospice a day and a half. And so we thought it’s gonna be longer, but it wasn’t. But when you get to that point, then you know, it’s probably time to maybe make a phone call. Get the family together. And agree on what’s going to happen. The worst thing that can happen if someone dies, you come into the funeral home and you have three kids or four kids and two people say we’re going to bury and two people say we’re going to cremate. And now, you know now that’s just not good. Is it important to have a relationship with the person who is managing and handling the funeral? I think I do, too. I think so too. And that’s what we try to do is we try to go old school. I think I did something after the hurricane. When hurricane was there. We had a lady in our cooler. There’s a whole story written and I didn’t evacuate because I couldn’t leave her. You know, and it turned out if the son called me on Saturday, the hurricane hit Saturday morning, he called Saturday and said, Hi, mom make it through the storm. And what am I gonna say? I don’t know.
Debi Lynes 8:48 – Yes, right, right. Oh, yeah. I never thought about that. Yeah.
Jim Keith 8:51 – So I have an obligation to that person. And what anyhow, we said that our differences were the same was Same as that old school funeral director that you meet and play golf with. He goes to your rotary, he goes to your PTA meetings, you meet them in the grocery store and you know you stop and talk. And that’s just something that…
Debi Lynes 9:13 – It is trusted professional for lack of a better word.
Jim Keith 9:15 – Well, why not? Be it your doctor if you know someone like that, you’d stop and talk to them, you wouldn’t just walk past them in, in the grocery store or at church and you know, we get a lot. We do a lot of stuff with the church, we do a lot of stuff to community, we do a lot of stuff the veterans, and that’s important because I think it’s it’s not just giving back, but it’s being part of recognizing and honoring people for who they are while they’re alive.
Debi Lynes 9:39 – What’s really interesting to me is when my mom was dying, it was gonna brothers, sisters, grandkids, the whole family. It was like you became part of the family you a couple of months. Literally, we would drive by and run in and just to say hello, and I think what’s up surprised me the most and everyone was how you made the whole process seamless. And you weren’t and grieving was wonderful. You allowed all of that. But there was also an element of I don’t want to say fun, but just celebration of life. And
Jim Keith 10:19 – I think a lot like in your case, familiarity. I mean, your, your husband, Mike and I were out to throw knives at a tree
Debi Lynes 10:24 – So funny.
Jim Keith 10:28 – Stuff like that. So that’s developing relationships that you don’t get when you get online.
Debi Lynes 10:35 – Stay with us. Hang on. We’re going to come right back in 30 seconds just to chat a little bit more with Jim Keith.
Debi Lynes 10:40 – 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 11:07 – We are back with my friend Jim Keith. And we are talking in this session or in this segment I should say about the pre-needs of people. And why is that so important? And what does that mean?
Jim Keith 11:20 – Well, you know, pre-needs basically encompasses pre-planning your funeral. Or your parents or someone like that. Now what happens is perhaps you have an idea, but what you want to be done, but you haven’t communicated that to your kids. So you don’t talk about it isn’t something that Sunday dinner you say, Hey, man, I’m gonna be tossed off the back here, right?
Debi Lynes 11:47 – Viking Funeral
Jim Keith 11:48 – Yeah, that’s but you don’t talk like that. But it’s so important that you sit down and just talk to your kids and let them know what you want.
Debi Lynes 12:00 – It was really interesting, Jim. About a month ago, I went to my financial advisor. And she says, you know, you’re 66 I’m wondering if you want to consider. Hmm, you know, when you die What do you want that to look like, you know? And I’m like, “No, thank you”. And she’s like, “well, let’s revisit this again.” And it was funny because your voice to me was resonating.
Jim Keith 12:19 – Well you can, if you want to talk to a financial planner, okay, you know, people come to me all the time. Some people prepay and some people don’t and I will tell them there are advantages and disadvantages to both. Okay, the advantages to prepaying for instance, let’s say you come into me And you give me $2,000. Okay, and that’s gonna be for cremation, okay. prepay. Well, I don’t take control that money. It goes into irrevocable insurance policy. That means that I guarantee that no matter how long you live or what happens to my prices, that I will never come back to your family and say, give me more money. No, cremation rates or prices went up $200 and death certificates went up $300. And, you know, give me some more money? Well, I don’t do that. I hope that the interest in that insurance policy stays current with inflation rates. And usually it does. It’s very close. Now, the good thing about that also is if you prepay and you know, people are living longer, and they can go through their money faster,
Debi Lynes 13:22 – yes. Oh, one less thing to worry about.
Jim Keith 13:25 – Yeah. Because once you get into the Medicaid situation, or you have to go into assisted living and you’re out of money, then they start looking at your assets. Anything that you have put away for a burial is not touchable. Okay. So, yeah. So that’s good to know. That’s good to know. And we do a lot of that, too. Now, I get a lot of people who call him saying, Hey, you know, Mom’s going to go on Medicaid. On Tuesday. I have to come get rid of her money. That’s a great problem with your business. Yeah, yeah. Yeah. But that’s just something now the disadvantages of prepaid If you can’t get that money back, okay? Let’s say not every family’s The Brady Bunch, okay, so you put away say $10,000 for burial. You die. Maybe one of your kids who is less than stellar decides that he wants to take that $10,000 cremate you and take the other $8,000. If you prepay and do it in advance, they can’t do that, okay. You make it a irrevocable. You can’t do that. And it happens, you know, not everybody’s a Brady Bunch, like, exactly, but they do that now. If you don’t prepay, okay, and say my costs go up, all right when the price goes up over 10-15 years, and you have to pay the price that they’re going right? So if you have money if you have a good amount of money in the bank, if you have life insurance, then maybe you don’t necessarily need to prepay at all. Always pre-arranged. You should always write something down and say this is what I want.
Debi Lynes – 15:00
What does that look like? What are some things that you should say? I mean, is it that I want music?
Jim Keith 15:04 -It well, if you’re gonna have a song a chef, okay, the main things are going to be cremated or buried two biggest things. And then are we going to have a service somewhere? What are we going to do with the ashes? No, the technical term now as cremated remains, but what are we going to do with the cremated remains? you have three basic things you can do, you can keep them, you can scatter them, or you can bury them. Now they have funny things. You can put them into shotgun shells, you can put them into firework, you can make them into diamonds, you can put them on a reef and make artificial reefs with them if that’s what really. But all that stuff stems from the cremation rate because the people who were making all the money in the 80s and early 90s by selling caskets don’t sell as many caskets anymore. So they’re trying to create product because there’s another need out there. It all stems from the cremation rate.
Debi Lynes 15:59 – Which is really interesting. One of the things that you were so good with us about is you really acted as sort of a point person, and also as a resource guiding us to wherever we needed to be. Do you find that you do that quite often?
Jim Keith 16:20
Yeah. I mean, my title is funeral director. I’m a funeral director. Not really a mortician or an undertaker. But they do the same thing. But a funeral director does that they direct the family. You try to take charge, put them in the right direction. And it’s not like herding cats. Sometimes can be. You want to keep them going. You already know where they want to get to. You just try to get them to that point in a way that they get there on their own. And they get there without undue stress. And they don’t have to make extra decisions. And you don’t want them calling their sisters or brothers and saying “What should we do? What should we do? What should we do?” Pretty much you just say this is what’s going to get done. If anyone has an issue, then we’ll address it.
Debi Lynes 17:09 – How many what percentage you think of folks are living here now who when they die want to go home or live out of town or?
Jim Keith 17:21 – A lot of people will go out of town. If they’re going to be cremated, they’ll be cremated here and then maybe buried in Michigan or Ohio or Kentucky or Pennsylvania or somewhere like that. If they’re going to be buried, then most of the time, we would bomb here and then ship them up to whatever. Like last year I went to Mississippi, Alabama, Virginia, Tennessee, and Georgia, all within about a three-month stretch. Now I do that because if I drive that person, for instance, an airfare tentative states probably gonna be about $650. Okay, and then you have to hire a funeral home on the other end, that’s probably they’re gonna charge $2,500. Okay, I can do it for, let’s say $1,200 dollars, okay? And I save you the airfare and I save you the price, you know, half the price. So the other place, and I make money that I wouldn’t normally make, and you save money that you’re going to spend. And so it’s able to really help the family when saving not just taking money that way you have continuity of service too.
Debi Lynes 18:27 – I don’t know if this is interesting. And again, oftentimes, I think this is a subject that for many people is pretty difficult, but I think we all have the same question. When your loved one dies, and they’re at home because we’re talking about aging in place. So my father, mother, sister, brother is here at home. And what is the protocol? What do you do? Not you , but any of us. Well, if there are any of us, what do we do? Do we call 911?
Jim Keith 18:50 – Well see, that’s the thing. If you’re under hospice care, then you call the hospice, okay. And the hospice will pronounce [the death], if they’re not already here, they will come here and pronounces [the death], then they will call me or you can call me or give me a heads up but I can’t do a thing until someone comes and pronounces. Okay? If the person is not under hospice care, okay, say just dies without any warning, then you call 911. The advantages or the disadvantages of that are the fire trucks and ambulances and the police are going to come in the coroner is going to come and you know, it’s just a big production. And that’s the disadvantage to that, but you have to do it.
Debi Lynes 19:33 – Do people call him rely on you went and asked you about things like their will or law or probate or I mean…
Jim Keith 19:43 – They ask me, but I don’t answer those questions because I’m not an attorney. Okay. And I don’t want to give advice. That’s not correct. Laws a little different. I came down from Delaware and Pennsylvania, And the South Carolina laws are going to be a little bit different on certain things and I don’t want to get into that. So I have a couple attorneys that I really like that are very fair and I give them the notice and the number and they call.
Debi Lynes 20:09 – Well, we’re gonna take another quick break, we’re gonna come back and we talk about some trending that’s going on in this field. Terrific.
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Debi Lynes 20:54 – We are back here with Jim Keith and we’re going to talk about what really happened to the body after death.
Jim Keith 21:02 – Well, ultimately you have to decide the end process in this position is it gonna be cremated or buried? So if it’s, it’s gonna be buried and you’re gonna have a view and then we embalm. Okay, and then you have a casket viewing if you want, if you’re going to be buried without that viewing and then you don’t necessarily have to embalm. Now in the old days in the prior to about 1985 anytime someone died, the funeral director showed up, and he took him back and he embalmed them and then you came in, you picked out a casket, whether you wanted it or not, okay, and all that kind of stuff changed when the FTC got involved…Federal Trade Commission. They got involved with regulating some things that funeral directors did, and a lot of it was bad. It was just arbitrarily charging outrageous amounts of money without giving the family of choice. Now we’re very regulated we have to disclose in writing at the time of arrangements, what your options are what are required by law and what are not required by law. And I think it’s good for everybody. So if you’re going to be buried, then we go to the cemetery, we get a vault. A vault is the concrete case that the casket goes in a cemetery. They’re required by just about every Cemetery in every state now. And the reason for that is because if you were to put a casket in the ground without evolved over a period of time, not very long, maybe just a few days or a few weeks, that ground really settled down, then you can collapse the casket and, you know, you don’t want to go to the cemetery. See all these now? Yeah, if it’s a cremation, here in South Carolina, we can’t cremate with a death certificate. So we have to get a death certificate filed first. And the way that evolves is, when you come and make arrangements with me, I get all the vital statistics for the deceased. Parents names, mother’s maiden name, place of birth, Social Security, highest-level of education, occupation, that kind of stuff. And then I put it on the computer, and depending on who’s going to sign that death certificate, it could be a doctor, it could be the coroner. I hit the little send button and it goes to that person. Then they review it. They pull the medical file and say, okay, she had COPD or heart disease or stroke or something like that. Then they’ll fill in their little part hit the send button again and notifies me and we go pick up a death certificate, take that with the paperwork we need for cremation, the coroner signs off and gives us a cremation authorization.
Debi Lynes 23:42 – A little personal anecdote part of the reason I chose you not only because you’re so articulate and you know this nationally, but also because when my mom was dying, we spent quite a bit of time together and, and I must say, I was not thrilled to meet you. But then when I did it, it really took a shift the whole process of my mom dying took a shift for my entire family. For these reasons, you handheld us through the entire process from taking my dad to different areas where my mom could live after she died, whether it was, you know, the National Cemetery and something you taught me there was about a National Cemetery
Jim Keith 24:24 – All the national cemeteries. What a great deal for people if you are a veteran. Listen to this. If you are a veteran, you can… an honorably discharged veteran… you can go into any National Cemetery and be buried for free along with your spouse. Now, that’s a big deal because you still buy a grave and just about any cemetery it’s going to be at least $2,000. It’s going to be $1,500 dollars open that grave. If you get one of these big corporate cemeteries, they’re going to be $2,500 or $3,000 can be anywhere from $1,500 to $2,500. And then your marker. And you get all that for free at a Veteran Cemetery.
Debi Lynes 25:03 – And I think for my dad, it was such a gift. Because it gives them a place to go. And the other thing that was interesting, Jim is my parents lived in Ohio all their lives. And so the big consideration what my dad was like, we would have taken my mom home, and you sat and talked with him for hours about the kids coming here? Everyone comes here. You want to continue to visit your wife here. So I think that what people don’t realize is that there’s a whole process to really what you do.
Jim Keith 25:36 -. There is a process and but it’s not cookie cutter. It’s tailored to individual families. So you were really easy to get I knew you before your mom, right? And so I kind of knew where you were coming and then can I hear in your house and your whole place here so welcoming, you know, I haven’t come over here where there hasn’t been six cars. 20 people around.
Debi Lynes 26:00
Livestock. Yeah, chickens.
Jim Keith 26:05 – Yeah, exactly. And, and that’s cool. And that’s so welcoming. And, but there are also people that are very standoffish, they always have been wary of dealing with anyone, they don’t know that they feel like someone’s going to try to take advantage of them or maybe pull one over on something like that. And, unfortunately, they’re out there. But you have to deal with those people differently than I did with you.
Debi Lynes 26:27 – But your gift was helping my dad and my brothers and sisters who… my brothers and sisters who didn’t really know you sort of helping them understand the process in ways that we all could understand because it was different for everyone. Yeah. So I think for many of us, we’re very grateful, at least for my family, and I think it was such a learning process. It demystified it. I’m not so scared now of the whole process. You know, and I think that’s amazing. And I know…Go ahead.
Jim Keith 26:57 – No, I was gonna say one of the things that you just said Stop. That’s what I feel a director does. Now, if you go into your little, little funeral homes up in your little towns where you grew up and stuff like that, that’s what a funeral director does. Unfortunately, trains in field service have been consolidated. Got it. These corporations show up. So you call me I have some phone 24 hours a day. Someone dies. I’m here. Correct. I’ve make the funeral arrangements. I handle the funeral. I go to the cemetery. I’m there 24 hours, seven days a week …forever. When you have a question, you have my cell phone number that you can text me what we have. And then that’s, that’s being a funeral director. But the corporation’s come in and all they are they want to buy up places. It’s all volume. You know, you’re just, you know, your 2020 01 64 you know, the 64th person who died in January of 20. That’s who you are.
Debi Lynes 27:58 – So there are companies that are coming in to do that Gotta pay attention.
Jim Keith 28:02 – Gotta pay attention, you got to say, “Are you locally owned,” if they’re not locally owned, then I’m just going to say beware because you’re going to pay way, way, way more. Just, for example, I know the local funeral home, it was just purchased, really just purchased by a corporation and one of the employees came to me and he said, Man, we had these urns that we were selling for $200. They marked him up after the acquisition to $600.
Debi Lynes 28:29 – Okay, it’s taking advantage of vulnerable people. I hate that.
Jim Keith 28:32 – but you know, so for instance, to call corporate and it’s not just here in Hilton Head, it can be anywhere, you’re going to get an answering service after hours, then they’re going to pay an on-call person, then they’re going to dispatch a removal team or transfer team to come to your house. So now you’ve spoken to an answering service have spoken to a funeral director, maybe you’ve spoken to two people that who are …who knows who they are. They just happen to be on that night, then you go in the next day and make arrangements, probably meeting somebody else. Now three or four days down the road, you’re going to go to church and they’re going to meet someone else. And there’s no way that continuity is not good for developing relationships or you having a warm, fuzzy, you know in a really tough time.
Debi Lynes 29:16 – Yeah. And here, I thought you were going to talk about trends like putting ashes in golf balls. Well, we did that.
Jim Keith 29:25 – We did that. So I don’t know when you brought that up. We I had a very good friend who, while she was alive and before she was sick, said you know, whenever I die, I want to be in a golf ball. And then Good. I’m glad I don’t have to worry about that. She got pancreatic cancer and died. So I found a golf ball company that would cut the golf balls and half all of them at print her name on it, and they shipped them to me and we put her ashes in the golf balls and then glue them shut. And then the next one had a little sleeve, a little cardboard box with it. And then we went out and we had a service at Haig Point over the ocean, which is where we threw the golf balls in the water.
Debi Lynes 30:02 – Well, and I told you that when I would go to the funeral home, it would actually be a lot of fun because there was so much cool stuff to see. Yeah. And a lot of people love to sprinkle or spread ashes some of the share some of the things that people do, because it’s really cool.
Jim Keith 30:15 – Yeah, we some of this stuff is cool and not so cool. I’ve had people put cell phones in the casket not tell me and then that had a service and ring, ring, ring, ring. You can put anything you want in the casket. You just got to tell me. Yeah, they’ll put golf balls, whiskey bottles, mini bottles, and then not tell you, you know, they’re up there to sort of see the slide and stuff under the blank. And you go up the chairs up the stairs at the church and it says clang, clang, clang, and you just go. “Okay guys, what did you put in there?”
Debi Lynes 30:49 – Yeah, what’s in there? Oh, that has to be fun. I picked you got some fun stories.
Jim Keith 30:53 – Yeah, there are some stories but you know, a lot of it is just trying to go with the flow and and Let people put in I buried my grandfather with his favorite putter. Yeah, I wish I had that putter back now because valuable probably was
Debi Lynes 31:10 – I saw something. Was it a fish? No, it’s a turtle the turtle. I love this.
Jim Keith 31:16 – Yeah, this turtle is a biodegradable turtle. And these people painted it and this guy who died was a waterman around here in Hilton Head. And so they came in and they got this turtle and they painted it really looks cool. And then we put the ashes and they went out to the beach and they took the turtle out on a paddleboard. Yeah. And, and we put it in water and a real sea turtle came up and nudged it.
Debi Lynes 31:40 – So cool. Yeah. So how to bring beauty to someone’s life.
Jim Keith 31:46 – You have to remember, and I’m gonna say this is Christian realized that, you know, if someone dies, they’re in heaven, and they’re in a better place. And when we grieve, we grieve for ourselves. Because if you really want to grieve We agree for you shouldn’t agree for someone that’s in heaven or in a better place. And sometimes you see people that have just suffered so long. And you know, death, although it’s tough to deal with, is best.
Debi Lynes 32:12 – It is part of life.
Jim Keith 32:15 – Yeah, it is part of life, but so many people cling on and you know, they fight it. And those are the most difficult people to deal with. But when you have someone that’s, you know, in a good place, and we can make a celebration of life and we can say, look what great things this person did look at all the people she or he touched.
Debi Lynes 32:32 – When you come when someone comes in, do you consider culture do you ask for cultural mores or, or norms for exam, for example, if it is a Jewish funeral, or if it’s a Buddist or whatever it is,
Jim Keith 32:45 – All those I’ve done. I’ve done Jewish, I’ve done Buddhists. I’ve done Muslim, and you have to be cognizant of what that’s like. But one of the best ways to do that is just ask them. You can say, “Hey, I haven’t done a Jewish service in five or six years. Are you orthodox or reformed?” Interesting, you know, so what do we have to do? And maybe you just touch base with the Rabbi, you know that the Muslims are going to bury the next day or that day if they possibly can, and that person who’s deceased gets your best effort, no matter what. And, and that’s just something that that’s what a professional will do.
Debi Lynes 33:28 – Do you find that people want to put ashes in urns? Is that what most people choose?
Jim Keith 33:39 – Oh, they put it in. They put it in urns of scatter. We have those little mini urns. She talked Yeah, I love those. We had a friend who died my wife took her to Aruba and scattered some of her ashes in Aruba. We have people that she’s you know, the shotgun shells. I’ve done the shotgun shells, the jewelry ..put making them into diamonds, right? That’s cool. It is cool, but it is so expensive. It is just spending that kind of money.
Debi Lynes 34:04 – Well, who knew that talking about a subject like death could be entertaining, as well as engaging and educational?
Jim Keith 34:13 -You did because we’ve done this for a while.
Debi Lynes 34:14 – This is true, and I’m very grateful for you. Yeah. Jim Keith, thank you so much. Before we go, can you give us your name and phone number, how we can reach you and perhaps your website?
Jim Keith 34:25 – That’s Jim Keith. Keith Funeral Services. 63 Arrow Road on the Hilton Head Island. And my website is keithfuneral.com. My personal email is firstname.lastname@example.org. And our phone number is 843-715-4584. Thank you. I answer the phone all the time.
Debi Lynes 34:44 – And I can attest to that. Thank you so much for joining us and thank all of you for joining us here on Aging in Place Podcast. Have a wonderful week.
Debi Lynes 34:54 – 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 35:22 – Thanks, Debi. simplify, simplify, simplify. Again, when aging in place, it is all about your needs and not your wants. Read that magazine and then donate it to your hairdresser. Stacks of magazines on the floor can be a little slippery when stepped on. Give your adult children your parents China you have buried in the closet. The pleasure of them using the China while preparing you a dinner will bring back stories for you to share. And don’t cringe if a plate gets broken. Remember the story Beauty and the Beast? Chip the teacup? That cup had plenty of character then the cup that didn’t. My mother service Thanksgiving on a platter that had so many chips and cracks. We all wondered how it could hold the turkey. The good part. For each crack and chip, my mother could tell you how it happened, how my dad jumped and tried to scare as she was reaching into the cabinet to retrieve the platter. The crack from my older brother dropped the gravy bowl on it and splattered everyone on the table. So give it away. Simplify what’s around you. Who knew the way that simplicity can be so missy.
Debi Lynes 36:34 – Jim Keith from Keith Funeral Home was absolutely amazing to talk to and one of the things I learned in the takeaway I want for all of you is to really know that talking about death and dying is a natural part of life. And that hiring someone that you trust and develop a relationship with is going to be really important to celebrate the legacy of your loved one. And Jim shared today that one of the most important things to remember is that developing a relationship with your funeral director can really be helpful to make a tough time easier. I want to thank all of you for joining us here today. on aging in place. Have a wonderful week. Bye-bye.
Henrik de Gyor 37:14 – 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 email@example.com We would love to hear from you. If you’re interested in advertising or sponsoring this podcast, email us at firstname.lastname@example.org 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.
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 email@example.com we would love to hear from you if you’re interested in advertising or sponsoring this podcast, email us at firstname.lastname@example.org thank you for listening to aging in place podcast.