Discovering the Beauty of End-of-Life Care: Insights from Barbara Karnes

Are you curious about end-of-life care and the importance of hospice services? In this episode, you'll hear from a seasoned professional, Barbara Karnes, who found her calling in supporting individuals and families during their final journey. From her unique journey into the field to valuable insights on hospice care, this episode is filled with heartfelt stories and practical advice.

Tips:

1. Start Researching Early: From the moment of diagnosis, begin researching hospice services to make an informed decision.
2. Utilize Hospice Services: Hospice care provides comprehensive support, including nursing visits, home health aid, social workers, and chaplains, all covered by Medicare or insurance. Take advantage of these services to enhance the quality of life for the patient and their family.
3. Communicate Your Needs: If you're unhappy with your current hospice provider, don't hesitate to voice your concerns and explore other options.
4. Embrace the Moment: Focus on making each day special for your loved one, bringing joy and love into their final moments.

If you or a loved one are facing end-of-life decisions, listen to this episode for valuable insights and guidance from Barbara Karnes wealth of experience in hospice care. Gain a deeper understanding of the dying process, learn about the role of hospice, and discover how to provide compassionate support during this challenging time.

Transcript

John: 0:10

Hi, I'm John.

Erin: 0:12

And I'm Aaron. You're listening to connect and power the podcast that proves age is no barrier to growth and enlightenment.

John: 0:19

Tune in each week as we break down complex subjects into bite sized, enjoyable episodes that will leave you feeling informed, entertained, and ready to conquer the world.

Erin: 0:33

If it has to do with death and dying, Barbara Karnes, a registered nurse, is talking about it. Her articles have been featured in the New York Times, USA Today, the Huffington Post, Thrive Global, and the Washington Post, among others. Awarded the NHPCO Innovator Award for her decades as an end of life educator and for her iconic booklet, Gone From My Sight, The Dying Experience, AKA, also known as the Little Blue Hospice Book. Barbara's career spans four decades and began as an early hospice pioneer during the AIDS crisis. In addition to many years she has spent at the bedsides caring for patients and their families as a nurse. Barbara has also served as Executive Director of Hospice and various home health agencies.

John: 1:29

Let's warmly welcome our guests, Barbara Carnes. Thank you so much for being here.

Barbara Karnes: 1:34

Well, thank you for inviting me.

Erin: 1:36

We're excited to have you, and I've always been curious when people go into a certain job or certain profession, really what is it that drew them? So I was wondering if you could share your story. Did hospice call to you? Did you have an experience? What was it?

Barbara Karnes: 1:52

let's start with, I graduated from nursing school. And. Do I dare say 1962 and thought I'd made a huge mistake. It's like I should have never been a nurse, should have been a social worker. Um, but because of that, I never worked in the medical arena. I got married. I raised a family. And in the early to mid 70s, Elizabeth Kubler Ross came forward and said, Americans are not treating their dying appropriately. And I spent a week with her, uh, in a workshop in California, and I thought, this I identify with. This is something I could do. So I studied. Every self help group and book and, and. There wasn't anything about end of life, uh, but I thought, I want to do this. So, we moved to Kansas City, and I wanted to make friends, so I went to a Unitarian Church study group on world religions. And you know, you go around the corner and introduce yourself, and I said, I'm interested in hospice. Sitting next to me, the was the volunteer coordinator of a hospice.

John: 3:27

Wow.

Barbara Karnes: 3:28

And talk about synchronicity. So he said, we are hiring an RN. I want you to come interview. And I had done a refresher course in nursing. So I said, well, no, um, but I will, and I interviewed and I said, no, but whoever you hire, I will volunteer 20 hours a week to work with her. I would have paid them. I just didn't tell them that so for four months. I volunteered and then I was brought on, um, as a staff hospice nurse in hindsight, as I look back. My never having worked in the medical arena was the gift that I brought because I had no preconceived ideas on what dying was like. And so my patients and their families, they taught me what dying was like and what to do. that's my story.

Erin: 4:41

my gosh, I'm a little teary eyed. I'm gonna start crying. Wow. That's

John: 4:45

That's an incredible

Erin: 4:46

story.

John: 4:46

And in so many times, you know, I, I've been in, in healthcare for gosh, over 10 years and, and I've worked with a lot of nurses, both in home health and hospice coming from the hospitals and skilled facilities and so forth. And um, yeah. Sometimes we get tainted from the experiences of being, doing whatever we did in the different atmospheres, whether it was a hospital or skilled facility. So coming in with this excitement, this passion, but being so fresh and an open for the enrichment of your clientele must have been an incredible experience and made you one of a kind. Who you really are and, and brought out that passion, even, even more.

Barbara Karnes: 5:34

It did, you know, for five years, I did direct patient care. Um, and then I got into administration and I ended up being the director of a couple different home health care agencies and hospices, but of the big things I learned. Is that our medical model treats diseases that people have and what end of life model is, it treats people. that have diseases. And that's the appeal for me. That's what, to me, end of life work, whether it's an end of life doula or a hospice arena, um, is that we're dealing with, we're supporting and guiding the person and their family, but the energy isn't on the disease. Where the energy is on the person, and to me, that's what I think it's all about.

John: 6:48

Oh, you couldn't, you couldn't say it even better. I mean, that is, that is so true. Um, so much of the healthcare world is focused on symptoms and so forth, but when it comes to hospice, it's about meeting that person where they are and, and not only supporting them as they transition through this. incredible part of their life, but being there to support the families, to give them an understanding and to help guide them and support them because it's such a, such an emotional time, such an emotional time. And there's so many different. Things in the moment that, that people are going through this experience, you know, and it can change from person to person in a family. Not everybody experiences it the same way. And uh, you know, one of the things that when I've been involved in hospice that I've sometimes been frustrated with a misunderstanding of hospice is when to bring somebody. On for hospice and I've always told people, gosh, when they can qualify, get them on it because it's such an amazing support system and so many people wait until last minute. Right? They think we got to wait until mom or dad or whoever is gasping their last breaths. Then that's when you bring them on hospice. And so if you could just share a look. With our audience, um, what you feel is best for each patient.

Barbara Karnes: 8:21

Well, in regards to a hospice referral, um, I believe from the moment of diagnosis, from the moment that a physician says, I can't fix you, That that's the time that you start researching hospices. Um, if I was going to buy a new car, I would test drive all kinds of different cars and I would. Google all about these cars before I made my decision of which car I wanted. Our medical society and environment today is we take what we get and we don't really question very much in regards to our medical care. I believe that the moment from the moment of diagnosis, you start doing your research, there are hospices there in more than one in most areas where people live. And so. Call them up on the phone, uh, talk to them if you like what they say and there's various questions you ask them and then make your decision from, based from knowledge, not from fear, dad is dying and I don't know what to do. So once you've made that decision. Depending upon the diagnosis, depending upon the amount of time your physician is guesstimating, and no numbers, never listen to the numbers, you want, are we talking years, are we talking months, you know, but no numbers. if they're talking months, and you've been diagnosed with a life threatening illness and you're not receiving treatment anymore, that's the time to do your research and get on hospice. People associate hospice with dying and what I want people to see is that hospice can help people live. The very best that they can within the confines that their body and disease has put them in. But you want to be able to live until you're not. And the fear and the lack of knowing, uh, what to expect, you need some support. And hospice or end of life doulas can give you that support and guidance.

Erin: 11:08

Are there specific questions a family should ask?

Barbara Karnes: 11:11

The one that I, yes, I, this is according to Barbara. This is just Barbara. I would ask if there is primary care nursing. You want the same. You want you want the same social worker, you want the same home health aide, and you want the same chaplain. And that's how you develop a relationship. That's how you develop a trust. And more and more hospices, I'm sorry to say, are not using primary care nursing. They're sending in whoever happens, that they happen to put on the schedule. And you can't develop a relationship. like that. I also think you need to ask about, do they have a hospice house? And how does your hospice house work? Is it just for inpatient Medicare reimbursement? Or can I do private pay? Um, that I think is an important misunderstood question that you need to know. Um, if dementia, Ah, that's a whole nother topic. If dementia is part of the diagnosis, then you want to ask and have them, the hospice explain, um, the possibility of them coming off service if they don't decline fast enough. And to know that their social worker will help you find additional care. If you have to come off because so often, you know, it's, gee, I'm sorry, dad hasn't declined fast enough, so we have to take you off and this family is left now paying for their medications, having to get a hospital. Middle bed, you know, doing home health aide, most people can't afford it. Um, so have that social worker help plug the family into community resources until the patient, it's time to go back on

John: 13:34

Yeah, I'm so glad you brought that up because another thing that I think the family should be aware of is when you bring a loved one on the hospice, please don't dismantle their room and just give away and get rid of all of their stuff like their bed and everything, because sometimes, like you said, somebody does graduate off hospice or they come off hospice and if all you have is a hospital bed and you know, the different things The different supportive systems for that person. If suddenly, you know, that's all they have left. They're going to be paying for those if they come off hospice because hospice, um, and I'd like to you to share a little bit about the hospice benefit and what it covers as far as cost and stuff

Erin: 14:21

Barbara, when you were talking about, hospice house, I don't think some listeners may know what that is. If you could briefly Kind of explain what that is

Barbara Karnes: 14:30

A lot of hospices now have what they call a hospice house, and It can be in a nursing facility. Generally, it's freestanding. And you have around the clock shift work. It would be like being in a nursing facility, only they're generally smaller. and, You have 24 hour nursing care, home health for bathing, um, and they accommodate the family where they generally have a kitchen, kitchen and a dining room and a TV room and a get together, you can bring your dog and cat, you know, it, a hospice house tries to Create a home like environment in which a person can live until they're not, that they can die there. Our hospital system is, our medical system is, a hospital really isn't a place to die. nursing facilities, are a place where you can go to die and there's often, a relationship with a hospice, but a hospice house is specifically for those people who are facing the end of their life. The question is, How is it reimbursed and will you, they let you stay there under private pay? Those are your two major questions because oftentimes Medicare says what, seven to 10 days, I believe. and families don't know that. And so the, their loved one has been in this hospice house for. five, six days and the hospice says, you know, we're going to have to move dad. You can either move him to a facility or nursing facility or take So you need to ask that question. Some houses will let you stay under private pay, but others won't.

John: 16:46

Thank you. Yeah. Thanks. And then a hospice house also just so that our listeners know that's not an individual house for just one person. There are other people that live in the hospice house as well. Um, it's usually a smaller home. It's not like a large assisted living. It's more of a, a a small or intimate environment with maybe 5 to 10 rooms or something, uh, where there's a lot of oversight, a lot more staff than say an assisted living where they have that round, round the clock, um, supervision and help, correct?

Barbara Karnes: 17:21

Yes, absolutely.

John: 17:22

Okay. when it comes to hospice, a lot of our listeners are unaware of, you know, how hospice works as far as, okay, what's the out of pocket expense. And a lot of people fear that and there's a delay on getting their loved one on hospice because they think there's going to be a big expense attached to that. So can you share a little bit about how that works?

Barbara Karnes: 17:46

One of the great assets of hospice is that they're, they pay for a lot. Let me put it that way. You come on to hospice in your home, um, or you can go into a hospice in a nursing facility, but the nursing facility you're paying for. All right. So, but let's talk about in your home. And, Nursing visits, home health for bathing, home health aid comes in to do the bathing. You have access to a social worker and a chaplain. Your medications are paid for as they relate to the life threatening illness that you have. That would be pain management. To really. To begin hospice, you have to say, I recognize that treatment is not in my future. That future is not what we're working with here. Death is going to be the end result, but I want to live the best I can until I am dead. And hospice will help me do that. So the expense, really, for the patient and the family is nothing. Medicare pays, if you're on Medicare, Medicare pays for the visits, it pays for the medicine, it pays for everything. And that's the plus. Um, A lot of insurance companies. Also have hospice benefits, you have to if you're not Medicare age, then you would check your insurance to see if they indeed have hospice coverage, and a lot of them do. So it's during a time when medical expenses are just overwhelming. To have an end of life service where everything is paid for is, can I use the word, a relief?

Erin: 20:05

hmm.

John: 20:06

hmm. Uh huh.

Barbara Karnes: 20:06

it's a very big benefit.

John: 20:09

Yeah, that's wonderful. Now also, as far as like,

Barbara Karnes: 20:13

Wait, can I say one thing? Hospice does not provide shift work. You will not have an eight hour. or a home health aide in your home. They make visits and those visits will last 45 minutes to an hour routine for a routine visit and it can be longer if you need more. Um, if death is very, very close, they'll often stay and support the family during that immediate dying time. But you can't hire them. And that can be a misconception, so I want to make that clear.

John: 21:03

I'm so glad you had that you, it was like you read my mind. Cause that was my next question. I know that with home health, the big difference with home health and hospice is intermittent visits. And so with, with, there are still intermittent visits. However, you can increase those visits if needed be based on the progression. Okay. of the disease or illness. So if somebody gets worse, they can increase those visit times and, um, and it's also, um, 24 hours. So it 365 days a year. So they're your emergency button. So is that correct?

Barbara Karnes: 21:44

There, there is someone on call 24 seven. Um, and if they can't answer your question or your concern, they are to make a home visit, even if it's three o'clock in the morning. and I think that home health, or at least the agency I ran, you couldn't hire. Nurses either for home health. there's a lot of similarities between home health and hospice from a medical standpoint. It's just that hospice goes a step further and provides more emotional, guidance volunteers. Which is a whole nother area to talk about is Volunteers will come maybe Weekly for a few hours so that the caregiver can go to the grocery store, maybe just take a nap So that's also a part of hospice services

Erin: 22:52

I was going to ask, um, as you're taking care of your family member and then you switch over to hospice and now you're caregiving for the person that is passing. How does that care? How do you, does it change? What's the difference, right? How do I care for them differently now?

Barbara Karnes: 23:10

Well, you have more as a caregiver, you have more support because now you've got a home health aide coming in to do the bathing. you have, a social worker who will come in and you can say, you know, I'm having a real hard time today. I think that I'm going to scream, you know, and that social worker will support and guide you. You have, uh, the nurse that understands pain management. Not all, people dying, have a disease that causes pain. But if they do, then hospice is expert in pain management. So you've got that support as well. I think that The comfort for the caregiver that really isn't found in our medical model is that hospice looks after and supports the caregiver, the family, as much as they do the patient. And in our medical model, we take care of a person, a patient. In hospice, We take care of the whole family in addition to the

John: 24:28

you were talking a little bit about volunteers, I know there's different disciplines that work to, you know, in hospice, there's your nurse, there's your certified nurses assistant that helps with bathing and so forth, your home health aid, there's a chaplain, there's volunteers and so forth, and it's great to have that team as your consistent team that's always in there. Taking care of the patient, but is, are you required to have any of those services? Or can you say, you know what? We don't want, a chaplain or we don't want this part of the hospice benefit. You can choose what you want, correct?

Barbara Karnes: 25:05

Absolutely. I don't want any volunteers. I don't want someone strange coming into my house even though they are trained extensively in end of life. I'm a big proponent of having your volunteer to become your best friend and someone you can talk to. but no, you can say. I'm going to bathe mom every day. I don't want, I don't need a home health aide.

John: 25:35

Yeah,

Barbara Karnes: 25:37

Or, you know, I don't want to talk to a social worker. Social workers have a bad rap and I'm really sorry about that because social workers are amazing. They have incredible listening skills and guidance But you can say other than one. Medicare requires you have one social work visit. but after that, no, you can say, no, I don't want to. I strongly recommend that you do use those services because they're a great listener. And so, no, you can say no, um, the key I think to hospice is that you have to be at a place where you recognize that treatment is not part of what your life is going to be about now. If you're still getting chemo, radiation, any of that, then you're not eligible for hospice. It has to be when you've said, okay, there's no more treatment. I'm going to live until I'm not.

John: 26:52

So when it comes to, um, volunteers, I want to touch base a little bit on, because there's so many different hospices that have volunteers that have different talents that they can offer these special clients that are at end of life. And can you share some of the knowledge that you have on volunteers and what they can bring and how they add to the whole dynamic of the team at end of life.

Barbara Karnes: 27:17

Volunteers go through, first let's say, remind me to say training, but um, volunteers are just everyday, ordinary people in the community that Want to be of service and it may be retired nurses. It may be retired chaplains or Retired attorneys, you know, it's like okay. I want to give something to my community and So I'm gonna volunteer to be work in hospice extensive training, not just a one hour in service, there's going to be extensive end of life communication skills, listening skills, all of those are part of the volunteer training, then you can say, well, I want to Direct patient care. I want to be, uh, an 11th hour volunteer, which is that I will sit when you think death is imminent within hours. I'll go and I'll sit there with the patient and the family. I, that's a beautiful, beautiful, Part of being a hospice volunteer, or you can say, um, I don't think so. I, I'm not comfortable having direct patient contact. I'll work in your office. I'll help you file. You know, I'll do commute. I'll go out and talk about hospice. I'll talk to church groups or senior citizen groups. So there's all different jobs. For the volunteer, the key thing is they are trained first to do those jobs,

Erin: 29:22

That's good to know too, because sometimes you don't know, is it just someone that decided to show up today and be like, Hey, I'm here. And then something happens and the family's panicked and they're relying on the volunteer and they're like, I don't know. And then everybody's panicking. Right. Yeah.

John: 29:37

volunteers can be so amazing. I know I've worked with volunteers that do things like pet therapy or music therapy or massage therapy. And it is amazing because we all You know, all of us love pets and animals, but these are specialized trained animals that are very, very gentle, very, very calm, and they bring a different dynamic to, to that piece of end of life. You know, music is very calming, soft touch, gentle massage. I'm not talking deep massage, but some of those things are, uh, part of the volunteer. Process that, that I've been part of, you know, uh, and seen with different companies that, that I've been affiliated with. So, um, I love that.

Erin: 30:26

I'm curious cause you've mentioned it a couple of times now. You've called it the afterlife doula. Is that, I've heard that come up more and more. Could you explain a little bit?

Barbara Karnes: 30:37

end of life doulas are outside of the medical system. There are a variety of. schools, courses that you can go through to learn end of life and there, it is not a medical component. It is a communal supportive component. You can hire, A man or a woman, who has gone through a training program. Now, when I say training programs, I will say that there are many, many, many courses and training programs. So you want to research, just don't Google and take the first one that comes up. You want to research to see that it. Thinks the way you think and offers you what you want to do in relationship to end of life. And then, uh, the key thing is, end of life doulas are not regulated. There's no Course or test that you have to take, um, you could call yourself an end of life doula, I suppose, and hang out a shingle and have nothing. Um, but those you research, just like you're buying your car, you research end of life doulas, you want a, a reputable and Then, if your heart says, you know, I want to work and end of life, I want to help and support people, then an end of life doula, you don't have the constraints of six months. You can, and there's dementia doulas also remind me to talk about that, but, you can. From the moment of diagnosis, you can have an end of life doula who becomes your best friend for the family, for the patient, who will guide and support you and has more knowledge than your neighbor, has in supporting you. And They haven't worked out fees yet, some have, some haven't. so it's new, it reminds me of when I started in hospice. in what, 1980? Um, because we weren't, we were seated the pants, here's what I think I ought to do. And. That's kind of where end of life doulas are, and I identify as an end of life doula because that was the end of life care that I gave. And over the years, hospice has become more and more medicalized, and more of a business. And in my mind, that's affected some of the quality hospice care.

John: 34:00

now talking about the quality of hospice care, I totally agree with everything you're saying, but there's no do overs when it comes to hospice care, and so once a team signs the agreement to utilize a certain company, are they forced to carry through that agreement all the way to end of life, or if they're unhappy with the type of treatment that's being provided to their loved one, can they Fire that hospice and utilize a different company.

Barbara Karnes: 34:29

Absolutely. What I recommend is if you're unhappy, you first, you tell your primary hospice nurse, I'm unhappy. Here's what I don't like. And here's what I want. And if that goes nowhere, and it doesn't change anything, you go to the primary clinical director and you say, I've talked to the nurse. I'm unhappy. Here's what I want. Here's what I'm not getting that doesn't work. Then go to the director of the hospice, the CEO of the hospice and say, I've done these steps. Nothing's happening. And that's where you say, if you can't fix this, I'm going someplace else.

Erin: 35:14

Yes.

Barbara Karnes: 35:15

then you, um, Find your new hospice, call several, interview, say, I'm in the hospice program, at such and such, and I'm unhappy, and what can you do for me? Here's my needs, what can you do for me? And if you find a hospice that meets your needs, and I hope you do, then you say to that hospice, I'm going to switch, how do I do it? And they will help you. Switch.

John: 35:47

But don't fire the hospice company without finding another one beforehand because you don't want to, you know, a space of no support that could, that could create a lot of stress.

Erin: 35:59

You told us to bring up, I believe you said train earlier and also dementia doula.

Barbara Karnes: 36:05

Dementia doula. This is new. That's beginning out there. And Dementia doulas are men or women that are being trained not only in end of life, but in dementia. And they don't have the six month prognosis. Dementia doesn't play by the rules. I mean, you can be at death's door for years, if you have dementia. So, the Dementia Doulas support the patient and the family and help everyone live in the moment because that's the key to Living with and supporting someone who has dementia. The only thing that really matters in dementia is any given moment. And those doulas can support and guide the family. It's a long haul. the disease doesn't play by the rules. And at this point in time, we don't have a lot of support for the caregiver. that's why I am really excited about this new, dementia doula.

John: 37:27

Yeah. Well, I haven't heard of that. We definitely want to research that and find more information.

Barbara Karnes: 37:33

All right, Oh, Teepa Snow has a website. She's, a pioneer in dementia and that would be a good place to do a little research.

Erin: 37:44

Now I know, um, my father passed away almost three years ago and I used to own a caregiving company and I've seen it from other perspectives and been by the bedside, but to do my own was different. So it was. It's interesting to experience that, but the steps of, that a family should recognize, like how do you know somebody is going through death? What are some of the tell signs of, oh, this is starting?

Barbara Karnes: 38:08

Okay, two, I'm going to start at the very beginning. There's only two ways to die. You either die fast, heart attack, hit by a truck, suicide, you're alive one minute and dead the next, or gradual death. And gradual death is either old age or disease. Gradual death has a process to it. Two, three, four months before death from disease, three things start happening. Eating habits change, sleeping habits change, socialization habits change, and it's all on a continuum. So, months before death, a person gradually stops eating. Starts with meat, and, oh, that just tastes awful, I can't eat this meat. Then pretty soon, on this continuum, it's fruits and vegetables. Then it's soft foods. Then you're doing good to get a protein supplement down. Ice cream, ice cream goes a long way, but you can get ice cream almost to the end. And then in the, I would say days before death, you're probably not getting anything down them. In the weeks before death, you're doing good to get water in them. mean. Food is the gas we put in our car to make it run. And so it's perfectly normal and natural that we will gradually stop eating. We start withdrawing socialization wise from the world, not interested in the favorite football team. And then pretty soon it's, ah, don't have the neighbor ladies come over. And then it's, ah, don't have the grandkids come over. And the person gradually withdraws into themselves. And the third thing is sleep. Months before death, afternoon nap. Pretty soon it's a morning and an afternoon nap. And one day they don't get out of bed. And then they're asleep more than they're awake. Those are the things you look for that say, Months before death, then there are changes that occur one to three weeks before death, which I call labor, and we go through labor to get into this world, and we go through labor to leave it, and there's a lot of similarities, and we can relate and understand those similarities. One to three weeks, a person to start sleeping with their eyes partially open. They've got random hand movements. You just agitate it, can't get them settled. they're picking at their clothes. Sometimes they're, they'll talk to you very, very clear, other times not so much. Those are kind of the key labors begun. And then for the delivery, which is days to hours, the person is generally non responsive. They start breathing like a little fish breathes when you take it out of water, that open, closed. Their breathing gets slower and slower. Their hands and feet get purpley. Their body's cold. Um, their eyes are still at half mask. And their breathing gets slower. And slower until they're not breathing. Now I'm going to tell you one thing that most, I get letters with a lot and so people need to understand. I equate the delivery as Like birth, you know, some women can sneeze and out pops the baby and other women, 36 hours later, they're still trying to push this little guy out. Some of us can get out of our body easier than others. And that final push to get out of this body isn't always pretty. You know, there's. stuff running out of their mouth. There's body awkward movements and gasps and facial expressions that you go, Oh, what is this? You know, sometimes their sound, just like pushing that baby out isn't necessarily pretty. So it is to get out of this body. that's dying.

John: 42:57

Yeah. Wow. And that's, you know, I was thinking as you're talking about that, I was thinking about some of the hospice experiences I've been through with the word terminal agitation, right? Where, where, um, There's such a misunderstanding, and if you don't have a really great support system, meaning a wonderful nurse that can walk people through and help them through that process, it can become very, very traumatic for the loved ones that are going, what's, what's happening? So thank you for explaining that.

Barbara Karnes: 43:28

Well, and that's why I have written Gone From My Sight, which explains, um, the dying process, starting months before death and right up to the moment. Because we don't have any role models. You can look at this little 14 page, large print, 5th grade level booklet and go, oh, yeah. Mom's doing this. Oh, it must not be pathological because it's here in the book. And then the companion is, here's what you can do while mom is leaving her body. So one is, here's what's happening. The other one is, here's what you do while it's happening.

Erin: 44:14

Will you say the name of the book again and its nickname?

Barbara Karnes: 44:17

Ah, gone from my sight, and it's called The Little Blue Book, or The Little Hospice Blue

John: 44:24

Yeah, every hospice company should have boxes of them in their company that they give to the patient. Um, when they come on service, it should be something that's bedside that that helps them through that process. And so, yeah, I know that I'm going to tell any hospice company I communicate with, you know. You need to connect with Barbara and you need to get at some of her copies of books because I think it'd be so helpful. It'd be so incredible to have that.

Erin: 44:51

But what's neat too is if you get a chance to go to her website and it'll be linked to the bottom of the blog for this, um, you also have a bunch of other books too, right? There's a bunch of other, if you want to share that cause it's just fascinating.

Barbara Karnes: 45:06

Well, what I've done is, whenever I've seen a need, then I've addressed it. I saw a need that families need to understand the normal dying process. That was gone from my sight. Families need to know what to do during that time. That's the 11th hour. But I also wrote a book on dementia. because dementia doesn't play by the rules. I wrote a booklet on pain management, because pain management at end of life is different than pain management for people who are going to get better. And I also wrote a booklet on grieving. A lot of people use it as a sympathy card, write your condolences on the inside cover, and it just touches on the normal grieving process. So that you can look at it and go, Oh, I'm not crazy after all. It's right here in the book. All my materials, fifth grade level, short, large print, short, simple, direct, but gentle.

Erin: 46:21

Well, and I think that's been one of our big missions is really to get people to be proactive instead of reactive. So I say now, if you have aging parents, if you're older, it can't hurt you to start reading and researching and know what's in your future, your possible future that that's just my opinion.

John: 46:41

And educating, educating children and stuff too, because a big part of the dying process is the grandchildren are saying goodbye to grandma or grandpa. And if you have copies of your books to help them understand the process, it's not as scary or traumatic for them. Right. And so, um. I think what you're doing is amazing. I'm I'm excited to get a copy of these books

Erin: 47:05

well, I wish I had the grief one because when my dad died, I'm the oldest of seven. My mom was of course grieving and then each of us children were grieving in our own ways. And, and as having a partner who hasn't gone through it, trying to understand our grieving process, I feel like if we'd had those books and had read them before, it It would have been easier for everybody to kind of communicate and go. Oh, you're mad right now, and and it's okay It's not me. It's just that's your grieving right now, and you know those different processes

Barbara Karnes: 47:36

Yep, knowledge reduces fear and fear is a huge part of our life when you're dealing with end of life. We don't have any role models. Grandma used to live at home, and she died at home, and the family was there, and we understood this is a normal, natural process. But over the years, Grandma moved from being at home dying into the hospital dying. And there she died at the end of the hall, with no one there. And then we went from grandma dying in the hospital to grandma dying in a nursing facility. And again, often the family is not there. Uh, and when the family is there, they don't understand. They think something pathological is happening. We're coming full circle. We're now coming back to Grandma at home. With end of life doulas, with hospice. We're back with Grandma in her bed, with the cat on the end of the bed, and the grandkids. there and their support. So we're learning again how people die naturally and my hope is that that in itself will reduce a lot of the fear that we bring. The more that have this connection with end of life, then the more we can help others and provide comfort and direction and support and compassion.

John: 49:30

Another question I was curious about from my dad and I always thought If they're up in the middle of the night and they wanted to go outside or they couldn't sleep, some people are like, no, you have to stay in bed. Don't come out. Stay here. Whereas I doubt if you want to walk outside at three or four o'clock in the morning, let's go for a walk somewhere. And I wanted to get your take the pros or cons of what to not to, should someone do?

Barbara Karnes: 49:58

I think as caregivers, and that's family, a big wide range there of who I'm talking about. Our goal, I would like it to be To make each moment of our special person's day, life, until they don't have it anymore, every day special. Bring joy, bring love every day. It's, you know, most of us live either in the past, which is a memory, or in the future, which is a possibility. Very few of us live in the moment, which is the only real, real thing. So if we can. support and love our person in the moment. I think that's the gift we can give our special person.

Erin: 51:15

Well, I'm like, I've been trying not to cry this whole

John: 51:18

episode. I'm like, I'm like, it's coming. And then she gets emotional and I wind up getting emotional. It's like same thing. She eats something. I wind up eating something. It's like, I don't know. How we're attached here,

Erin: 51:30

but almost like we're

John: 51:32

so so I'm going to, I'm going to ask a quick question that cause I know she has a question at the end of this, that she wants to share that she asked everybody. And I love her question as well. But mine is, is how do you keep the passion going? Right? So there's so many people that get in different minds of work and you've been in this. And this for decades, you've been doing this for many, many years, giving to so many people, enriching so many people's lives and sharing your passion for, for what you do through education, through your books, your experiences, which I feel is just phenomenal. And there's so many people that get into career fields, you know, and they, they stop because they're bored or they're agitated or not enough money. What keeps you excited about hospice and your passion for writing these books and supporting people?

Barbara Karnes: 52:22

Well, is it going to sound funny if I say I think that's what I'm on this planet for? I, I think that that's, that's my work is to educate, about end of life. Uh, I look back at my life and everything seemed to fall into place without me doing anything. And so it's kind of like, yeah, this is my purpose. This is what I'm here for. I take care of myself. I watch movies. I laugh. I recognize, that I must take care of myself as anyone who works in end of life. Anyone who works in anything needs to take care of themselves. That's really important. And that life is special. Uh, life is, can be beautiful. You know, I will say, this will explain me. Every night, after I turn my light out, I ask myself, what did I trade a day of my life for? What did I do that brought me joy? That fulfilled me? Those are the things that I think we're on this planet for. Or at least I'm on this planet for. And that kind of keeps me on track.

John: 53:51

Wow. You know, knowing your purpose. There's so many, so many people in this world that don't, right. And they're always questioning, why am I here? What am I, what is my objective? But it's so beautiful that you found that and, and you're living it because I know there's going to be a lot of listeners that listen to this and get excited about it. But it's so true. It's knowing your purpose, feeling your purpose. It's no longer hard work. It's no longer like a job. Like a lot of people have, right? It's, it's passionate. It's exciting. It's fulfilling. So yeah, thank you for that. Oh,

Erin: 54:30

I feel like we might have missed something, not miss something. If we've covered it off, there's something you feel like, Oh, I, I really want to share this. Let us know if there's

John: 54:40

something.

Barbara Karnes: 54:41

always do another one.

Erin: 54:43

Oh, that's awesome. We'll just come up there and visit you next time. Yeah. So my favorite thing to know, I'm an avid traveler. I love travel and culture and meeting people and John, it feels the same way. And so we'd like to ask what is on your bucket list? Where would you love to go and explore or where have you been that you love and would like to share?

Barbara Karnes: 55:06

My husband and I have been avid travelers. And we've been almost everywhere. You name it, we've probably been there. And great memories, great experience, to, uh, get a broader picture of people and how they live, and how they think. travel broadens our world and our perception and we loved it. We loved it. someone was asking me just recently, where do you want to go? I've been almost every place that I can think of.

Erin: 55:52

Did you have a favorite?

Barbara Karnes: 55:54

Oh, Thailand, love Thailand, Iceland, as we talked about, Iceland is, is great, Germany,

Erin: 56:06

you sound like you sound like me When john always asked my favorite thing. I'm like, I can't pick

Barbara Karnes: 56:13

I know,

John: 56:14

Whether it's food or travel, she's like, don't ask me that.

Barbara Karnes: 56:19

because each place is unique and different and there's beauty. In every place, you just have to look for it, and, reach out for it, and it's there. Um, what's the saying? Beauty is in the eyes of the beholder. That's true.

Erin: 56:38

Yeah.

John: 56:39

Yeah. that's great. Well, I just want to thank you personally. It's been such an incredible experience of being able to connect with you and. We feel so honored that you're on our podcast today and we're really trying to create, well, I shouldn't say we're trying to create. She always gets mad when I say that we are creating a movement, a movement of awareness and it, it, it comes from people that have an incredible story to share and a ton of experience and in certain fields as, as we get older. And so thank you. Thank you for everything you've shared. Thank you.

Erin: 57:18

I'm just grateful I made it without crying through the whole thing. Yeah, that would

John: 57:23

Yeah. That would have been a little

Erin: 57:24

little awkward,

John: 57:25

in tears as we're talking to you.

Erin: 57:27

tears as we're talking. Excuse

Barbara Karnes: 57:30

Well, thank you for inviting me. I think we've had a really interesting, helpful conversation. Conversation and when I say helpful to all those that are going to hear this, I think the three of us have done a good

Erin: 57:47

Oh, no, thank you. I appreciate it.

John: 57:52

Thank you for tuning in to another episode of Connect Empower. We want to express our gratitude to you for being part of our community, and we hope today's episode has provided you with valuable insights and inspiration to enhance your life and that of a loved one.

Erin: 58:07

We are more than just a podcast. We are a community dedicated to enhancing the lives of our aging adults and their support system. We encourage you to visit our website now at www. connect empower. com. Explore more information about our guests from today's episode and to access our free resources.

John: 58:28

resources. Our mission doesn't end at the conclusion of this episode. We invite you to take action now by sharing the knowledge you've gained today with someone who may benefit from it. Whether it's a family member, friend, or colleague, your influence can spark positive change.

Erin: 58:43

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John: 59:03

I'm John.

Erin: 59:04

I'm Erin. Until next Wednesday.