The One You Feed - Barbara Karnes

Episode Date: October 5, 2016

Join our new The One You Feed Facebook Discussion Group   This week we talk to Barbara Karnes about living and dying well Barbara Karnes, RN, is an internationally respected speaker, educator, author and thought leader on matters of death and dying. She is a renowned authority to explain the dying process to families, healthcare professionals and the community at large. Barbara has held both clinical and leadership positions, including staff nurse, clinical supervisor and executive director. She has won numerous awards including THE INTERNATIONAL HUMANITARIAN WOMAN OF THE YEAR 2015 from the World Humanitarian Awards.  In This Interview, Barbara Karnes and I Discuss... The One You Feed parable That knowledge reduces fear How her work with & knowledge of the dying process influences how she lives That as long as we're breathing it is an act of living What to do when one receives a terminal diagnosis The labor of dying The process of gradual death The significant changes that happen 1-3 weeks before death How to know if someone is minutes to hours away from their death That dying is not painful; disease causes pain The spiritual driver releasing its hold on the physical body The importance of telling the dying person that you understand that they  For more show notes visit our website   Join our new The One You Feed Facebook Discussion GroupSee omnystudio.com/listener for privacy information.

Life is a gift, and we have a gift of time, and how are we going to use that in our life? Welcome to The One You Feed. Throughout time, great thinkers have recognized the importance of the thoughts we have. Quotes like, garbage in, garbage out, or you are what you think ring true. And yet for many of us, our thoughts don't strengthen or empower us. We tend toward negativity, self-pity, jealousy, or fear. We see what we don't have instead of what we do. We think things that hold us back and dampen our spirit. But it's not just about thinking. Our actions matter.

It takes conscious, consistent, and creative effort to make a life worth living. This podcast is about how other people keep themselves moving in the right direction. How they feed their good wolf. I'm Jason Alexander. And I'm Peter Tilden. And together, our mission on the Really Know Really podcast is to get the true answers to life's baffling questions like why the bathroom door doesn't go all the way to the floor, what's in the museum of failure, and does your dog truly love you?

We have the answer. Go to reallynoreally.com and register to win $500, a guest spot on our podcast or a limited edition signed Jason bobblehead. The Really No Really podcast. Follow us on the iHeartRadio app, Apple podcasts, or wherever you get your podcasts. Thanks for joining us. Our guest on this episode is Barbara Carnes, RN. She's an internationally respected speaker, educator, author, and thought leader on matters of death and dying. Barbara is a renowned authority on the explanation of the dying process to families, healthcare professionals, and the community at large. She has held both clinical and leadership positions, including

staff nurse, clinical supervisor, and executive director. Barbara has also won numerous awards, including the International Humanitarian Woman of the Year 2015 from the World Humanitarian Awards. Here's the interview. Hi, Barbara. Welcome to the show. Hi, Eric. I'm excited to talk with you. This interview is a little bit different than a lot of them that we do because it's a very specialized topic. We will be talking about death and the dying process today, and so it'll be a little different than most of our interviews, which are very directed at everyone. What I'm hoping for listeners is that either A, you need this information now, I think you'll find it interesting regardless, and B, that you know that it's here for the time that comes when you need it, because we all will at some point or the other.

So, Barbara, let's start like we always do by reading the parable. There's a grandfather who's talking with his grandson. He says, In life, there are two wolves inside of us that are always at battle. One is a good wolf, which represents things like kindness and bravery and love, and the other is a bad wolf, which represents things like greed and hatred and fear. And the grandson stops, and he thinks about it for a second, and he looks up at his grandfather, and he says, Well, grandfather, which one wins? And the grandfather says, the one you feed. So I'd like to start off by asking you what that parable means to you in your life and in the work that you do.

Well, I think the key word for the bad wolf is fear. And there is so much fear surrounding end of life. You know, you mentioned everyone needs this material. And that's true. And that's where the good wolf comes in, because knowledge reduces fear. Knowledge contradicts the fear that the bad wolf is portraying or presenting to us. And so my work with end-of-life education is that knowledge reduces fear, and that because everybody dies, if we understand that there's a normal, natural process to dying, then it

isn't going to be so scary when someone close to us is dying or when we ourselves are in that position of having to deal with end of life. Right, right. Yeah, you do talk a lot about how knowledge neutralizes fear and how important that is. Before we get into specific questions about the death process, I want to ask you how the work that you've done with the dying all these years influences the way that you live. It shows me that life is a gift and that we have a gift of time. And how are we going to use that in our life? Because really, life is a terminal illness. From the moment we're born, we begin to die. And so it gives me a constant reminder to live each day as special. And literally, when I go to bed at

night, what I say before I go to sleep is, Barbara, what did you do today that you traded the day of your life for? And I look at that each day and say, what have I done that I feel good about, you know, because I'm never going to have this day back again. What have I done? Yeah, that's a great way to live. And I think there's certainly spiritual traditions that emphasize the idea of thinking and reflecting on your own death as a way to be more intentional in your life today. And it sounds like that's a pretty natural part of what you do. You're exposed to that reminder on a regular basis.

Every day, because that reminder on a regular basis. Every day, because that's the work I do. And so often when we've been told by a physician that we can't be fixed, you know, we go home, we sit down in our favorite recliner, and we might as well have died that moment, because oftentimes we stop living. And our life centers around the illness. It centers around the fact that I'm going to die. Instead of thinking that really there is no such thing as dying, you know, from the moment we're born, we begin to die. And so as long as we're breathing, And so as long as we're breathing, it is an act of living. And I think we tend to forget that when we've been told we can't be fixed. There's a line in one of your readings that I really liked where you said, Do we want the next months or years of our lives consumed with disease,

or can we find a balance between living and dying? Exactly. Exactly. So the way I thought we might structure this conversation is to start kind of where we are with, you get the news that perhaps you have a terminal illness. And then I thought we would then go from there, talk a little bit about the dying process itself, and then maybe talk a little bit about what's on the other end of it for the people who are remaining and surviving. Okay. So, you know, one of the things we're talking about here is, okay, I've received a terminal diagnosis, and I want to focus on living versus being obsessed or consumed with my disease. What are

some of the things that you recommend we be doing as part of that living in that time frame? Well, first off, you want to research your disease and you want to really be knowledgeable about the treatment or not treatment that your doctor is offering. We tend to accept what our physician says and don't question it. And I would say, first off, And I would say, first off, get to know your disease and the treatment and the goals and the expectations. Be really part of those decision-making times. Just don't leave it up to your physician. It's a partnership. That's number one. And then you're going to look at what you want to accomplish in your life and in your time.

Because none of us know really when we're going to die. It's that this person that's been told, I'm having trouble fixing you or I can't fix you has given you this gift. And so you look at, are there relationships that I want to fix, that I want to mend? You know, you learn to do and say that what you want to do and say every day. You know, so look at, what do I want to do today? And so often people who have an illness think to themselves, well, I'd really like to go visit my aunt, but I don't feel so good today, so maybe I'll feel better next week. What you want to do is remember that each day could be as good as it gets. And so you don't put off to next week. You do and say anything each day, each day. You're talking about for the person who's dying, you say, it will never be okay to die, so don't expect acceptance.

We can, however, reach an understanding. And that applies to family as well as the patient. You know, I also, don't let me forget to mention advanced directives. So, because that's important. But because all of us, whether we have an illness or not, need to have advanced directives in place, but it's even more important for someone whose doctors are having a difficult time fixing because if we don't tell our physician how we want to live until we die, then we will live the way our physician and the medical profession wants us to live until we die. And there comes a point where we aren't going to be able to be fixed because everybody dies. And so it's really important to have in writing how you want to spend the last weeks or days and even months of your life. Yes, I think that is something that we should all look at a little bit more, myself included. You know, most of us want to be home in our own bed with the cat in the bed with us.

And yet, if we don't have an advanced directive, where you're going to end up is in an ICU on a ventilator with probably some broken ribs because your heart stopped and they tried to start it again. And, you know, it's not what most people want. No, that does not sound good at all. You refer to the process of dying for the person as they go into labor as they die, similar in some ways to the labor of giving birth. Can you talk a little bit about maybe the process, you know, what we see in people from a couple months out to a couple weeks out to a couple hours out? Because you say there's a very clear process of dying that everybody goes through. Can we walk through that real quick?

Sure. First off, there are only two ways to die. You either die fast, where you get hit by a truck and you're dead, or heart attack or suicide, or you die gradually. And gradual death is either old age or disease. And gradual death has a process. If it didn't have a process, it would be fast death. So that process begins months before death comes, two to three to four months. And three things are going to start happening when you've entered that gradual dying process. You're going to stop eating gradually, starting with meats and fruits and vegetables, and then it progresses over these months to the point you're not eating at all. And it's really important to understand this concept

because most of us, you know, we associate food with living. If you don't eat, you don't live. Well, the body's preparing to die. And so it doesn't want the grounding or the energy that food brings. And so the natural process is it stops eating. It also stops drinking. It starts sleeping more and more, again, months before death, right up to the point where the person is asleep all the time. And then months before death, they start withdrawing from the world around them. They're not interested in the Olympics, and then they're not interested in the church ladies, and eventually they're not interested or interacting with family or those that they care the most about. Then one to three weeks before death, there are significant changes, and that's when what I call labor begins. And at this point, the person's eating almost nothing.

You're doing good if you can get some protein supplement down them and some water. And they're sleeping almost all the time. You can wake them up. You can talk to them. They're going to go back to sleep and not know if they dreamt your visit or if you were really there. They've gone totally within. They're not interested in anything that's going on in the world around them. The key thing that tells me labor has begun

is a person starts sleeping with their eyelids partially open. Their mouth is open, their eyelids are open partially, and they're sound asleep. They'll start picking at the air. There's a restlessness that goes with this time. You just can't get them settled. They're talking to and about things that don't make any sense because their world is a dream world. It's not this world anymore. Then there are other changes that say a person is minutes to hours from death. And there's really two things there. One is that a person's breathing changes. And I'm doing like an hour workshop here. Their breathing changes and it gets slower and slower and they start breathing

kind of like a fish breathes. Their mouth open and closes. That's in the minutes to hours before death and they're non-responsive. They can be moving. They can be moving, they can be talking, but they don't respond to the world around them. You can hold them, you can touch them, call them by name,

but they're not going to respond to you. I think that we have most of us sleep through, you know, it's almost like we have an anesthetic. We sleep through our change from this world to the next. Dying is not painful. Disease causes pain. But for us, the watchers, it looks like the labor hurts. It looks like the person's uncomfortable.

But what you need to know is they're so removed from their physical body that they aren't experiencing it in the same way as if that spirit were totally connected. They're like that little chicken trying to get out of a shell, and they're working really, really hard. But it's not painful. Disease causes pain. And so if a person has a disease history of pain, you're going to treat them with whatever it takes to keep them comfortable.

But if pain isn't part of their disease, then you don't have to bring in the narcotics or the big guns just because they look uncomfortable. You have to really assess that and have someone who understands end-of-life to make that assessment. I'm Jason Alexander. And I'm Peter Tilden. And together on the Really No Really podcast, our mission is to get the true answers to life's baffling questions like

why they refuse to make the bathroom door go all the way to the floor. We got the answer. Will space junk block your cell signal? The astronaut who almost drowned during a spacewalk gives us the answer. We talk with the scientist who figured out if your dog truly loves you and the one bringing back the woolly mammoth. Plus, does Tom Cruise really do his own stunts? His stuntman reveals the answer.

And you never know who's going to drop by. Mr. Bryan Cranston is with us today. How are you, too? Hello, my friend. Wayne Knight about Jurassic Park. Wayne Knight, welcome to Really No Really, sir. Bless you all. Hello, Newman.

And you never know when Howie Mandel might just stop by to talk about judging. Really? That's the opening? Really No Really. Yeah, really. No really. Go to reallynoreally.com. And register to win $500, a guest spot on our podcast, or a limited edition signed Jason

Bobblehead. It's called Really, No Really, and you can find it on the iHeartRadio app, on Apple Podcasts, or wherever you get your podcasts. How do we know dying people aren't uncomfortable in that phase? Is that just lots of observation? I'm just kind of curious how we know that. We know it from observation. I guess I've been at the bedside of so many people at the moment of death,

plus months to weeks before death, that I'm totally convinced that it is us, the watchers, that have that perception of discomfort because we're identifying with a healthy body. And from, I'm going to jump in here, from a spiritual perspective, there is a driver to this physical body. And that is, I call it a spiritual driver, but we'll call it driver. And that driver is releasing its hold on the physical body. And as it withdraws, the physical sensations that go with that body are different,

because they're not totally connected. So I guess I'm going to have to say I don't know about research, but I know I have taken this knowledge from all the world religions on spirituality and esoterics and ended up with the religion according to Barbara, but all of the wisdom that I've been able to pull has really made me believe that dying is not painful, that you're non-responsive, you sleep through it, and you wake up on the other side. And you say that as someone is dying, that it can be helpful to let them know that you understand that they have to go. You say not that it's okay, again, because it doesn't feel okay, but that you understand it's time for them to go. And that can be helpful.

And then the other thing you say is that the key to getting out of the body is to relax. Tension creates a tightness that locks us in our body and makes our labor longer. Right. There are dynamics to dying from disease or old age. We die the way we've lived. We die according to our personality. And we have limited control over the time that we die. And so if we talk to the person that's dying

and we say to them, I understand you have to leave. It's never going to be okay for someone we know and love to die. So we don't say it's okay, but we can understand that this is going to happen. And someone who's dying is going to, they're ambivalent. That driver is ambivalent. It's like they don't want to leave that which they know, and yet they know that they have to leave. So they're going to try and stay here for the people they care about.

And that's why telling them, I understand you have to go, why that's so helpful for the person that's dying. The physical pain creates a tension that locks us in our body and will make our labor longer. So the key is relaxing, and then you can slide out of your body. Well, if you've got unfinished business, something that you think needs to be addressed before you die, that's a tension and that's going to hold you here longer. If you're afraid, if you're really, really afraid, that creates a tension and that's going to lock you and make your labor longer also. And so we try to address unfinished business, we try to address pain, and we try to address fear within a person that's dying,

so that their labor and their transition from this world to the next will be gentle and easier for them. In your books, you talk a lot about ways to care for the dying person, for comfort, for different things. And so I think that we don't have time to go into all that there, but you definitely have very specific instructions and ideas for helping that person to relax and to be more comfortable. You know, I used to walk into a hospital room and I would see the family standing around the bed. They're literally holding on to their own hands and they're just standing there watching this person that's in bed,

non-responsive and is minutes to hours from death. and is minutes to hours from death. And their family, they don't know what they can do, and they don't want to hurt anyone, so they stand there and watch. When in reality, if you ask them, what would you really like to do? I would like to get in bed with mom and just hold her in my arms. You know, then let's do that. You get in bed with mom and you hold her, talk to her, love her, cry with her. You can do all of those things. It's just that people don't

know that it's okay to do it. So I tell them, it's okay. So let's transition now to the grieving process. So the death has happened and now we're standing on the other side of it and we're going through the grief. What things can you tell me about how to work through that? You know, I don't even know what word to use as to make it easier or better, but what are some things that we can be doing to help ourselves as we go through grief? Oh, that's such a huge question because each individual person is going to deal with their loss in their own unique way. I would say just some things off the top of my head is remember that there's no perfect relationship, that there are difficult times and there are great times.

And in our grieving, we tend to elevate the person that died to immediate sainthood and they were perfect. Well, that distorts and makes our grieving more difficult. We need to recognize the positive as well as the challenging times in a relationship. I also think it's very helpful to write a letter to the person that has died. Just, you know, if mom died 20 years ago, that has died. Just, you know, if mom died 20 years ago, you can still write her a letter or if she died two days ago. What I like to suggest is to write a letter, put whatever you want to say in that letter. No one else is going to see it and then put it in the coffin with mom. You know, put it in her hands, put it in her pocket, wherever you want, under the pillow. But say from your heart about the good and the challenging times and how you're

going to go on living. You know, if we think about it, grief is about us, the living. We believe that the person that has died is in a better place. Most religions teach that. And so our feelings aren't really for the person that's dead. Our feelings are about us and not having that person in our life. And so we have to figure out how to go on living. And I think what I hope people can do is show in their grief how well they can go on living. Let that be the testament of the love that they have for the person that died. It isn't how many tears you cry or how sad you look that says how much you love someone. You say that in the book. It says, Our inability to further enjoy life does not measure our loss.

The quality of our relationship with the person who has died is found in our strength, our resilience, and our ability to create a new and meaningful life. Yeah, that's what I believe about grief. There isn't any healing, you know, there isn't any magical 366th day that, okay, I'm over it now. You don't heal from grief. You don't recover from grief. You learn how to live with it. And the only thing that helps grief is time. You know, there aren't any words that are going to make someone feel better. There aren't any pills that are going to make them feel better. It's only time. Time fills in the space between the pain, but we have to learn how to live with grief. Thank you. I'm Jason Alexander. And I'm Peter Tilden.

And together on the Really No Really podcast, our mission is to get the true answers to life's baffling questions like why they refuse to make the bathroom door go all the way to the floor. We got the answer. Will space junk block your cell signal? The astronaut who almost drowned during a spacewalk gives us the answer. We talk with the scientist who figured out if your dog truly loves you. And the one bringing back the woolly mammoth.

Plus, does Tom Cruise really do his own stunts? His stuntman reveals the answer. And you never know who's going to drop by. Mr. Brian Cranston is with us today. How are you, too? Hello, my friend. Wayne Knight about Jurassic Park. Wayne Knight, welcome to Really, No Really, sir.

Bless you all. Hello, Newman. And you never know when Howie Mandel might just stop by to talk about judging. Really? That's the opening? Really, No Really. Yeah, Really. No Really.

Go to reallynoreally.com. And register to win $500, a guest spot on our podcast, or a limited edition signed Jason bobblehead. It's called Really No Really, and you can find it on the iHeartRadio app, on Apple Podcasts, or wherever you get your podcasts. One of the things you talk about is how when someone dies, we can go into a little bit of shock, which creates numbness. And, you know, there's a lot to do after somebody dies. There's funeral arrangements to make, and there's people to notify, and there's all that stuff. And we go through that process, and then we kind of get past all that, and everything quiets down, and people stop sending their condolences, and people stop bringing food. stop sending their condolences, and people stop bringing food.

And people have a tendency to really start to feel it then, but think that that's wrong because they're thinking that, well, I was better at the funeral than I am now, and sort of recognizing that this isn't really a linear thing. They often really think, I guess I better go to a counselor because there's something seriously wrong with me. I was better at the funeral than I am right now. And yet when that numbness wears off, that's when the grief really, really smacks you in the face and you figure everyone else has returned to their normal life and their activities, and you realize that you don't have a normal life anymore,

that you have to rebuild, restructure your life without this person that you love in it anymore. You're the one that has to change. And we all resist change. None of us want to change. This is what the death of someone close to us forces us to do. It forces us to change. And it's when that numbness wears off that that realization sinks in. And then we've got to figure it out. And we're hurting, we're lost. It can be a month after the death, it can be six weeks, it can be three months after the death. But at some point, that numbness wears off. I've heard you talk about hospice before. Obviously,

a lot of your career was in hospice. I'm interested in how does somebody go about finding the right hospice environment for themselves? What's that process look like and what should somebody be looking for? Oh, that's a big question, too. Hospice, you know, when I started out, there weren't very many. And so you didn't have to make choices. many. And so you didn't have to make choices. And today, almost every city has, well, depending upon the size of the city, you can have 20, 30 hospices to choose from. Oftentimes, you get referred to a hospice because of your physician, because of your palliative care team, because of the hospital you're involved in. Make some phone calls.

Don't just accept that which is recommended. You want to know if they have primary care nursing. I think that, to me, is the most important aspect of hospice care. And when I say primary care nursing, I mean that you will have the same nurse and the same social worker and the same home health aide for every visit. Now, that doesn't count on call because those people, you know, don't do on-call, but you don't want to have a different caregiver every time someone comes to visit. You want the same because then you can bond with them because then you're getting consistent education because those caregivers know and have built a relationship with you. So to me, that's the key thing.

Also know that if you have come on a hospice and you're dissatisfied, first call the hospice and talk to the director and say, I'm dissatisfied and here's why. Talk to the director and say, I'm dissatisfied and here's why. And if they give them a chance to fix it, but if they don't fix it, find another hospice. Call another hospice and ask. Tell them your situation and ask your questions. So I think primary caregiving is my key recommendation for a hospice. Okay.

And is hospice something that is paid for by insurance, or how does all that work? I mean, I know there's lots of variations, so I'm not saying like for everybody, but in general, is that usually something that's paid entirely by the person in the family, or is insurance help? that's paid entirely by the person in the family or is insurance help? If you're Medicare age, Medicare has a hospice benefit. And as long as you have a physician that says, I can't fix you, and I believe that you have six months or less to live, and no one can put a number on it, that's another thing. Beware of numbers. But Medicare asks the doctor to put their name on the dotted line saying they have six months or less to live

and that you will not have any treatment to try and fix this disease that the physician says, you know, we're beyond treatment. There's nothing more we can do but keep you comfortable and we can help you live the best you can within the confines that your body and disease has put you in. So that is the hospice criteria. Medicare will then pay for all of the medications that are related to the life-threatening illness. They will pay for all the medical equipment, hospital beds, wheelchairs, oxygen, everything that's needed in relationship

to the life-threatening illness. And for RNs, home health aides, social workers, chaplains, all to come and help the family as well as the patient. Most insurance policies for people that are not Medicare age will also have hospice benefits. Each individual insurance company may do it differently as far as reimbursement, where hospice on Medicare, it's not going to cost you anything at all. Insurance, they're also different with co-pays and all that. I don't know. Excellent. Well, I think we're near the end of wrapping up, but I would like to kind of go back to what I feel like was a core theme that was running through everything that you talked

about. And I thought it was really useful and important. And you talk about how the death, the process is a very sad process and there's no getting around that process. But you also talk about how normal and natural it is. And you actually say at one point, you know, there's nothing happening here that's bad. There's nothing pathological happening here. And I just found that a really useful way to look at it overall. Taking care of someone at end of life is different than taking care of someone who's going to get better.

But most people don't know there's a difference. And so when they're watching end of life, they think something pathological is happening. think that the care is not being as it should be because they're comparing it to someone who's going to get better. There is a normal, natural way that a person dies from disease or old age. And if you learn that process or are taught that process, you can see that it's normal and natural. Mom's doing what she's supposed to be doing. This is how we die. Nothing bad.

It's very, very sad. But what I hope I can get people to understand is that there is a normal, natural way that a person dies. And that's not bad. It's sad, but it's not bad. You talk about how we as a society view death as a failure. And so, you know, that ability to kind of give up and stop trying to make it better sounds like it's a very hard one. Very big decision.

It's very hard. And it takes honesty from the physician and the medical professionals to help us realize, you know, that we've given it our best shot. This is the best we can do. And it's not working. Everybody dies. And now, you know, it's dad's time. We can do, and it's not working. Everybody dies, and now it's Dad's time. We can't fix him. And then let's shift gears and look at how we can make Dad's time the best quality time ever. Not the suffering, painful, one unnecessary treatment after another.

So many of our people die in hospital ICUs because they haven't had the advance directive written, because no one recognizes that everybody dies. That is one thing we can be sure of. Right. Well, Barbara, thank you so much for taking the time to come on. Certainly a sort of sobering or somber subject, but I really think the information you're providing is so helpful in navigating this process that so many of us are unfamiliar with, but all of us will have encounters with.

So thank you so much for taking the time. Thanks for talking with me, Eric. Okay, take care. Okay, bye-bye. Bye. You can learn more about this podcast and Barbara Karnes at oneufeed.net slash Barbara.