Making Peace with the End: 5 Tips for a Supported End-of-Life Journey

Ever Wonder What Happens When the Curtain Closes? (But Not in a Scary Way!)

Life is beautiful, chaotic, and...well, it ends eventually. But hear me out, what if we could make that ending a little more peaceful, a little more supported for ourselves and our loved ones? ️

That's where the amazing folks called end-of-life doulas come in! They're not doctors (although they work closely with them), they're more like guides on this final journey. Think of them as doulas for your soul's transition. ✨

In this episode of "Connect-Empower," we meet Janice Lombardo, a real-life end-of-life doula with a heart of gold. She'll share some incredible stories about the compassionate care she provides during this sensitive time. (Get ready for some serious inspiration!)

Plus, we'll uncover 5 key tips to help you navigate end-of-life care with an end-of-life doula by your side. These are the things NO ONE tells you, but can make a world of difference:

• How to start those tough conversations (without freaking everyone out!)
• Finding the perfect end-of-life doula (because the right fit matters!)
• Creating a rock-solid plan (so everyone knows what to expect)
• Dealing with all the feels (grief, fear, it's all valid!)
• Having a backup plan B (because life, uh, finds a way!)

Listen, this isn't always an easy topic, but it's an IMPORTANT one. By being proactive, we can ensure a smoother transition for ourselves and those we love. ❤️

So, hit that play button, grab a tissue (or two!), and let's talk about making the end a little less scary and a whole lot more empowered!

P.S. Feeling lost? Don't be! We've got resources galore to help you find the support you need. Reach out, explore your options, and remember: you're not alone!

Transcript

Janice: 0:01

The journey of being with your loved one when they are being told by medical professionals that there is nothing more that they can do for you. Medically and that comfort care and, make sure your affairs are in order. you hear those words come out of another human being's mouth to the person that you love the most. And it's devastating, absolutely devastating.

John: 0:38

Hi, I'm John,

Erin: 0:40

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

John: 0:47

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 today we'd love to welcome our guests, Janice Lombardo. Welcome, Janice. Thanks so much for being here.

Erin: 1:05

Hi. Janice.

Janice: 1:06

Well, thank you. Thank you, Erin. John, thank you for having me. I can't wait to have a discussion about end of life.

Erin: 1:13

You know, I didn't know there was such a thing as end of life or death doula until we were watching crim crim Chris Hemsworth. I'm mixing it together his show and it was a very last episode of the Disney documentary that he did. And they brought in a death doula and I was like, Oh my gosh, this is fascinating. What is This person, what did they do? And so I'm so excited to have you here to share more about what it is and the comforts that you can bring and the care and the extra support that you provide for families going through a hard time. So I'm so excited again, like I said, to have you here, but if you could go in and share your journey and what led you to do what you do for others.

Janice: 1:55

Oh, well, this has been a journey of about 30 years in the making actually. right after my son was born, I woke up in the middle of the night with a stabbing pain in the right side of my neck and it was a little tiny pea sized lump. And. I'm 30 years old at that point, don't know really what's going on, went to my six week checkup, told the doctor about it, he said, well, your hormones are out of whack, you're going to have issues coming up, go home and enjoy your baby. That was the beginning of the, the medical gaslighting that I experienced for the next eight years. So December of 1999, go to a dermatologist for an unrelated issue. And at that point in time, I had my daughter. And the lump still kept growing. And so when I went to this dermatologist, you could not miss it. It was visibly there. Every doctor I had been to within that 8 year period told me that, Oh yeah, we see it. We took blood. Your thyroid levels are fine. You need to just stop eating so much and lose weight. And so when I went to this dermatologist, he had also taken blood. And he told me, your thyroid levels are really off and I'm sending you to an endocrinologist. Didn't know what that was. Didn't really still know what a thyroid was. Went to see this person a week before Christmas and he's feeling my neck and he makes this low guttural sound that sent my heart into my feet. Now, I have a 2 year old and an 8 year old at home at this point in time. Don't really know what's going on. And he tells me to come back in three months. if it's still there, we'll biopsy it. Go back three months, biopsied, stage three plus, at that point, that they could verify papillary thyroid cancer. Had surgery, had a complete thyroidectomy. April 11th of this year will be my 24th anniversary of survivorship

Erin: 3:55

Congratulations.

Janice: 3:56

from having what they determined was stage four papillary thyroid cancer that had mono metastasized. How that was, uh, is a miracle to me Still today. That was my cancer journey. Two and a half years later, my mom is diagnosed with non-Hodgkin's lymphoma, stage two, small B cell. And so for the next 8 years of her cancer journey, I am her primary caregiver. I'm her medical advocate. I became a medical advocate because of my own experience, with asking doctors questions and not being given any answers and with her. In order to have any kind of understanding, I really didn't have time. My primary focus was keeping her alive, raising my two school aged children. I became a substitute teacher cause I needed a flexible part time job so that I wasn't completely out of the workforce, even though I still have under earned what I should have during my lifetime. And now I'm getting closer to retirement age. And. All of the trials by fire, my mother's cancer journey, the first five years, all the different regimens of chemo did not work. So what happened was, In that period of time, I never thought about dying. I never thought about death. That was not in my purview. My, my goal, like I said, was to keep her alive. And so we never had end of life discussions. They did update their will a year before she passed, but I didn't know anything at that point about end of life. And it came back to bite me hard. So when her health took a nosedive on Easter Sunday in 2011, and I drove her and my father to the ER, she never came home. the journey of being with your loved one when they are being told by medical professionals that there is nothing more that they can do for you. Medically and that comfort care and, make sure your affairs are in order. you hear those words come out of another human being's mouth to the person that you love the most. And it's devastating, absolutely devastating. Now, growing up, death was a part of life, you know, you lost friends, you lost loved ones, you lost, whatever, you went to funerals, you did the whole traditional whatever, but nobody ever really talked about dying. No one ever said. You know that you should be preparing for this, you know, you should be having discussions about this, you know, there's more to, body disposal than cremation or burial. We have so many more options today, but it starts with those conversations and when you don't have those conversations chaos. And it's, it's a shit show, just plain and simple. So with my mom, I did not know that she wanted to die at home, but I was afraid to let her because we weren't prepared. We never had any discussions about it. I didn't know how my father would take it. And I was given one day to find someplace to bring her to die. And I told the doctor, what if it takes me more than a day? He's like, oh, you should be able to do it. Well, it took 2 days and he just had to get over it, but when we got to the nursing home that we had found. She was so angry and it just tore my heart out and it did not have to be that way. If we had only had those conversations, if I had only had a glimpse of an idea of what her final wishes were, When we got to the nursing home, she was fine for the first couple of days. My parents celebrated their 51st wedding anniversary that Saturday. by Monday, she was in a coma. And she passed away the following Sunday, which was actually Mother's Day. I learned all about hospice in that time. And they are an amazing institution and I highly recommend that folks use them because it It will enhance your loved one's last time on this earth. It will enhance your ability to function, so that we had to make funeral arrangements while she was actively dying. I don't recommend that. And if you can pre plan something, great. If you change your mind after you've pre planned it, so you change your mind. Nothing is set in stone, but when you have no direction, it's heartbreaking and devastating all at the same time. And that's just that one little piece. So for me, as an end of life doula, I am non medical because I'm not a nurse. I am not a PRN, LPN, any of that. But what I do have is life experience. What I do have is the ability to talk to any medical professional almost at their level. I go ahead and I ask them to spell words. I ask them for definitions. I don't have a problem going toe to toe with anyone and no one ever should. You should never be intimidated by the person that is supposed to be helping you. And if you are, then it's time to find someone else. That being said, my cancer journey from a patient's perspective, my mother's cancer journey from the primary caregiver and medical advocate perspective is what led me to become an end of life doula. during the beginning of the pandemic, just before it hit, I was actually going to drive from Ohio to Michigan to take a, four day late, course. From someone that was offering it, so it would have been a certification course to help me to understand today's, medical field and what as an individual who is helping guide and educate others through this process would know what to do, because every day there's new things that change new protocols and all of that. So being, Aware and being able to ask questions when you don't know is really so important. because when the pandemic hit, I was not able to do that. I found out that there was a college in Canada Online course that was self directed, but there were, professors that you could ask questions of and work with to make sure that you were learning everything that you could possibly learn in order to really be able to help another individual now. I work with individuals, I work with families, and I am always very aware of where they're at in the process because I've lived it. If you're in the very beginning stages because of a new diagnosis or a chronic or serious illness, I understand where you're at. If you're in the middle phase, where things are kind of moving along and everything is good, and, If you haven't had those final wishes talks, I might try to help you to navigate through that so that you're not caught off guard when everything goes south really quick because it can and it has and it does. So that's how I became an end of life doula because this is the third stage of life for me. I'm a baby boomer. But I'm also a very loving, caring, holistic, heart centered person. I want to help you so that you don't have to go through what I went through. Because there's no reason for it. I've actually had people physically back away from me in fear when they find out what I do. And I just meet them where they're at. If that's where they're at, then that's where they're at.

Erin: 13:04

Well, your story is so powerful, right? Because a lot of times people don't understand until they go through it. I wish I would have known. Why didn't somebody tell me?

Janice: 13:14

Yes.

Erin: 13:15

And you're preaching what we've been preaching, right? You need to be proactive. You've got to have yourself ready so that your loved one Is not having to go through, I'm about ready to lose a loved one, but yet I don't understand. And like you said, with your mom, I didn't know she wanted to die at home.

Janice: 13:35

Yes.

Erin: 13:35

We could have made that happen had we known and made arrangements and it would have made life easier on all of us. Right.

Janice: 13:42

Yes, absolutely. it was a gut punch, and it just tore my heart out when she was so upset.

John: 13:50

Yeah, I feel, you know, I served in the hospice arena for a whole bunch of years and I've worked with doulas in the past and I know what a integral part of the whole care system at end of life, how that serves. and How it really enriches the experience, not only for the person that's going through end of life, but their family to have that added, support. So thank you for what you do and your investment Yeah. And other people and helping them navigate that. So if you can share a little bit about your role and how it kind of differs from traditional medical professionals. because I know that they have their way of doing them and doulas is a little bit of a different approach. And so if you can share the differences, that'd be great.

Janice: 14:35

okay, from a medical approach, they have protocols. You have these symptoms, this is what we do. Boom, boom, boom. There's no varying from it. They don't have, patient centered treatment options at all times. as an end of life doula, or a medical advocate, I'm there to say, Okay. let's look at all of the facts here. Let's see what other options are available to you. If that is not something that you're willing to go through with. like I said, I worked with hospice. they are very limited in the amount of time that they can spend with a person or their family. And because of that, my role actually bridges the gap in time. So, you need 3 or 4 hours. You might need to go take a nap because you're the primary caregiver, or you have to run to an appointment yourself and you're afraid to leave your loved one at home or wherever they're at by themselves. That's caregiver respite. I'm happy to fill in for you so that you don't have to worry what's going on when you're not there. I also have other resources that are local, depending on where you're at, that, you need, handrails in your house. Do you have an organization within your community that works and helps with seniors in that capacity? Do you need a sounding board? You have three siblings and you're all fighting. You're either fighting over the inheritance that you shouldn't be worried about because that money isn't yours. That money needs to be spent on your loved one's care. And I don't get me started in how many times I've seen families implode just because of finances. one of the really integral parts of being an end of life doula is helping Individuals, if nobody wants to talk with them because they want to talk about death, they want to talk about what they're feeling and they don't have a family member that can sit there and listen. I'm that person that will sit there and listen. I'm happy to let you process that whole thing when you're not in an imminent death situation, all those thoughts go through your head. I know for me, those thoughts went through my head and who's going to take care of my kids and how is things going to work out? And, I don't have any support and, all of the different worries and things that you don't necessarily think about because you didn't have to deal with them before when they're right in your face. Where do you go for support? That's where an end of life doula comes in. We are your support, your daughter or your son or your cousin or your mom or your dad, whoever you need. Us to be, we can be that for you in that capacity to be open hearted and holistic and share. So being able to, trust another individual in that role. Sometimes it's easier with a stranger than it is with your own family members, because everybody knows how to push everybody's buttons and. I don't have that. You can't push my buttons and I'm not going to be able to push yours. I'm just going to sit here and let you talk, or I'm going to, share with you some, possibilities of courses of action that you can take that maybe you hadn't thought of. in a way, as an end of life doula, we are not governed by any kind of government regulation. So I'm not a nurse. I don't have to take a state mandated test for anything. But what I do do is provide you with what experiences I've had. I know how to do research. I know where to find answers that maybe you don't know where to go because you're just so overwhelmed. So. In a way, bridging the gap between palliative care hospice care, or just, being that extra support in the background and that's what we do. We provide the services on a pay per. The schedule, some folks do it by the hour. Some do it by the, the day or whatever you need, we are flexible enough to handle that. And because we are not governed by, say, a hospice or a hospital system, we can give you as much time as you need. And that was really often so important because there's always going to be questions.

John: 19:22

Yeah, I love that, and fear is an interesting thing, right? What we don't understand and we fear sometimes causes us to close up and, and I think that is, Death and dying is something that's very misunderstood. and I think that some of these roles, like hospice or a hospice doula, some people get so fearful because they don't want to lose their loved one or they don't want to, they don't want to pass away. They don't want to die. And so it's great that you're sharing all this information because being proactive is going to give you a much better experience through that transition than not being prepared. So thank you for that.

Janice: 20:04

thank you. And it's so important because people don't understand that.

Erin: 20:08

I would say you've got like this little black book in your pocket and you're like, Oh, what do you got? I got it for you. What do you need? Check, check.

Janice: 20:18

Oh, I know just who to call. So, yeah, um, And we've all heard that it takes a village to raise a child. It also takes a village to care for our loved ones, especially at end of life.

Erin: 20:30

Agree.

Janice: 20:32

Nobody should have to do it alone. I had to do it alone because 2 of my middle siblings decided they couldn't be part of the care plan. So I didn't have any choice and I didn't have any support and I don't recommend that. Because it's so unnecessary, and fear and procrastination are huge. And in, as an adult, looking back at what I've already lived and looking forward to what I am living, I think this whole, we have a finite time on this And what are you going to do with it? Are you going to let that stop you from doing things? Are you going to embrace it? Are you going to say, okay. I've got all my plans in place, or at least three quarters of them, and depending on what happens next will determine where I decide to go, but I'm going to live. This is about really living, and enjoying what time you have, and making it count, and feeling good about yourself, and learning and growing, rather than shrinking back in fear. Or procrastination, it's, living and embracing mortality rather than, trying to distance yourself from it because you're not going to outrun it.

John: 21:57

Yeah.

Janice: 21:57

just not going to happen. So

Erin: 21:59

That's what I was going to say. We all die. Right? We are all going to go through it.

Janice: 22:04

Yes, and so how are you going to go through it or is it going to be an easy process in a journey or is it going to be that you're going to make it kicking and screaming, which isn't going to be good for anybody, especially

John: 22:18

Yeah. And I feel to what I'd love the listeners to really understand, because I think we're both discussing, talking about the same point here is it's better to be prepared because at end of life when you're trying to support your mom or your dad or even yourself in trying to get that support, it's better if you've already put a plan in place, right? then try to do it at that time because that's when emotion It's so much more heightened and that's when bad decisions are made. that's when fear really exposes itself. But when you're prepared, For end of life and you have everything lined out that you want to use a doula such as yourself and you want to Work with a hospice team and this is where you want to be you want to be at home or you want to be somewhere Else, it makes that process that we're all going to face so much easier and then you can concentrate on loving on each other and having those discussions. So,

Erin: 23:13

Well, and we have these conversations not to scare our listeners. We have guests such as yourself to really open their perspective of why they need to be proactive. What are the resources such as yourself can help you ease you through that process, help you get organized. These are the people you talk to make things easier, right? So yeah, I just, I don't want our listeners to be scared. I want you to just listen and absorb and really know that there's lots of people here and lots of resources to support you. But as far as your role goes, I know there are some misconceptions. Like you said earlier, people hear what you do and they run away. What are some of the common misconceptions that you have heard?

Janice: 23:58

Oh, well, besides the fact that they don't need me right now, Oh, this one. I just, it just kills me. I have people who have said, I don't care what happens because I'm gone deal with it, and it's like, okay. Yes. Love your family much. Okay. there are issues with folks who are just single and have no family, have very few friends, do not understand or know what any kind of options are for them, who is going to take care of their final wishes. Making sure that they're, things are taken care of either having a traditional funeral or a celebration of life. There's a new thing now where you have a living funeral. So you actually go to a funeral home and it's a big party and you get to listen to your friends and family talk about you in a loving way. Hopefully, I know that there have been times where family members have just used it as a platform to spew all kinds of things that you really don't need to hear, but they feel they have to get it off their chest and they do that anyways. So, Misconceptions about what an end of life doula is, because we are non medical, there are those who are like, there's no real need for what you do, but for those who are looking for extra support, those who want to not be alone, those who have questions, I don't have all of the answers, but I'm pretty good at quite a number of them and if I don't know, I'm happy to look up and find out. It's the community, you know, as an end of life doula, we want to be part of your families, your community. if you are in a situation where you are the parent of a special needs child, I can't even tell you how many folks are in this. Position and they are fearful about what's going to happen to their child because they either don't have enough funds to be able to make sure that their child ends up in a group home somewhere. All of that is a process, but it's not insurmountable if you have some guidance. So, to all the folks out there who are. parents of special needs children, there are things that you can do now. And make sure that you have that peace of mind for yourself and, once you're a parent, you're always a parent. Doesn't matter how old your child is and it's just like being an individual. If you don't have that support of a community or a family, there are other options. We'll make sure that we find them for you, but you've got to start the process and reach out. We can't help you if we don't know

John: 27:01

That's so great. such an amazing resource. You know, I know that the medical world, I know that, with hospice, they have the nurses, the, CNAs, the chaplains and all of that, but this is just another amazing part of all those services. That they're looking at the clinical side of things and they're helping navigate some of that, but I feel like, just like you said earlier in the discussion, a team, a whole group of people, to help support you. And so, one of the things, I want to go a little bit deeper in this too, and, this is something that I've been a little bit curious about, but how do, how do you help families navigate, the emotional side of a loved one's passing. How do you help people navigate that?

Erin: 27:46

And this is where I'll try not to cry.

John: 27:49

Yeah.

Janice: 27:50

you and me, both you and me both, because we're human. We cry with our families at times. the first thing is shut your mouth and open your ears and read body language and don't force anything. When someone is ready to share, they will. But if you try to put time limits on their grief, oh, no, no, no, no, absolutely not. That is the wrong approach to take. Making sure that You build trust and, I'm here for you in whatever capacity you There is no formula. Every single family, every single individual has different needs, has a different perspective. And we just have to be open and caring enough to let them express that. Once they feel that they are in a safe space, they will. But until then, because we both, we all know that grief is just. It's like a vice grip, and then it also can be in waves, you'll have a good couple of minutes here, and then something will trigger you that you see, and you're a blabbering, slobbering mess. It happens. It's completely normal, natural, and if you fight it and try to stuff that down, it is not going to work. And well for you, because those, emotions need to be released before I had surgery to have my thyroid removed. I went and saw my surgeon and at that point in time, we didn't have the Internet like we have now. So finding information was a real and. I was talking with him. We were talking about, what to expect. They still weren't sure if I was going to need to chemotherapy or anything like that. So they're throwing everything at me. And I was asking questions because I had prepared ahead of time and I'm writing the answers down. And this surgeon who was the same age as me and had five kids, I only had two. he looked at me and he said, I am so worried about you. And I said, why? He said, because I can read your writing. And I said, okay, right now I have my research hat on. I have my non emotional hat on. I need to know what's coming. I need to be able to share this with my loved ones. And if I'm a slobbering, blobbering mess, that's not going to happen. So for right now, I am present. I am focused. I am not emotional. I want the facts. And I said, besides, you are not with me when I'm alone. That is when I have my time to process what is really happening and let the fear and any other emotion that I have wash over me. And that was what I had done. Nobody taught me how to do that, but because of, having kids and my parents and, you know, all my other loved ones, I needed to do that for me. You never know how strong you are until things happen in your life. Everyone has these epiphany moments or aha moments or whatever you want to call them. so being able to disconnect, like John said, from the emotional part of it when you have to make decisions will make it easier down the line. And then going back to having a safe space, having the time to process what you're actually feeling, it's really important because you're not going to feel whole again until you do that.

John: 31:39

Yeah. so on the part of the loved ones, do you also support them as they're transitioning through this emotional loss? And I'm sorry if you answered that question. I'm just trying to understand, do you do follow up? Will you help them if they call in and want to process stuff as well?

Janice: 31:59

Absolutely. this is not a one and done situation. Grief, like I said, has no time limit. It gets a little bit easier as time goes on, but if you don't really know that, and you can't understand why you can't stop crying or why you can't get out of bed, we need just to have a little chat. I'm there to listen to what you're feeling and how you're feeling and to reinforce or to help you just to, you're not losing your mind. You're not unusual. This is a process, just like a lot of things in life, and in order for you to be able to make sense of it and to feel whole, okay, and whole again, unfortunately, you've got to step through it. You can't go around it. You can't go under. It can't go over it. You've got to go through it. And that way. You are going to be able to be that support person for someone else down the line, because you have lived this and you're going to know, yeah, there is a light at the end of the tunnel and it isn't the end of the world. and it's a learning process for everyone, but being able to recognize it and to go through it is really, really empowering.

Erin: 33:15

I think what I've noticed a lot too is In a relationship as someone's parent has passed or a brother or a sister, and you have not gone through it yourself kind of navigating and telling people, Hey, that your significant other, or maybe your friend, they need this space and this is part of their healing, but this is how you navigate it. Right? I'm sure you've seen that a lot too, is I don't know what to do. I've never gone through death myself personally, so I'm not really sure how to support. My person that I should be supporting.

Janice: 33:49

Absolutely, but it's always good to listen because oftentimes they will explain to you what they need in whatever words that they use.

John: 34:00

Yeah, We went through a loss together and it was interesting because I haven't gone through a very deep loss and the way Erin has, and really understanding, even though I had worked in hospice and I had worked with doulas and I thought I was so educated and knew so much, I had some challenges knowing how to show compassion and show empathy and really support her the way she needed to be supported because that doesn't come from, something you may see a hospice team doing or other people. it's very personal, that approach is very important. personal with the different individuals.

Erin: 34:36

and everybody's different to how they react. I'm a very silent person. And then in the shower, you might see me crying, you know, I think it's being the oldest child. Just be like, okay, we're good. Kind of similar to you. let me compose it and just keep track to make sure everyone's taken care of and their feelings are okay. And then deal with my own behind the scenes. Right.

Janice: 34:54

absolutely, but you have to deal with it,

Erin: 34:57

Oh, for sure. Yeah. We sure.

Janice: 34:59

but I've seen too many people try not to, and it doesn't usually end well.

Erin: 35:05

Well, and being able to communicate too, like me being able to tell John, Hey, I'm just not feeling all together today. Or whoever your partner is when you're going through something saying, I'm having a bad day. So if I'm a little snappy or if I cry out of nowhere, it's not you, it's just an emotion out of nowhere. When you've come across some families or individuals and they're having a hard time talking about death and the dying process, how do you help engage them or have families engage in a conversation? Are there specific games to ask? Are there shows to watch? Certain conversation triggers you can start to really get people to engage even if they're, they don't want to.

Janice: 35:47

like I said, every situation is unique because every family is Sometimes it's through music. If they have, song or songs that was their loved one's favorite, my mom's was the Andrea Bocelli song, one of his songs, and, that was something that was, important to our family. Some families are very religious, and so we look at their religious beliefs and practices and try and approach it from that standpoint. Because. if that's something that's very strong within their family, that might be the only way that they can start that process of looking at it from their religious perspective. Sometimes there is no talking. Sometimes it's just being in the same room with someone. Sometimes it's poetry. sometimes it could be a book, a story that they're, connected with. So there are a plethora of ways to start that process to help those folks engage, but it's not something that you have to do now. It's a process that when you're feeling it, when it's, sometimes it can be planned for and sometimes it can't.

Erin: 37:18

It's when you're ready, right? And every individual is definitely different.

John: 37:22

yeah. I do find that, as people get older too, they start realizing their mortality and fear even becomes stronger and they want to avoid those discussions even more. my grandfather had told me something humorous one time. his, A Close friend of his died, and I said, grandpa, why aren't you going to the funeral? And he goes, at my age, I can't get that close to holes in the ground, and so, I love that he used that humor, but that was his way to process probably some of his fear, right? Of Knowing that, he was, not too far From the end of his life, and that's the way he processes. So we all process it differently and Yeah, I just wanted to share that so are, Are there resources for people out there that you recommend? that they could learn more about your specific role or the doulas role to, have a better, deeper understanding of it, the whole process of it and so forth. this podcast is going to be great for people to hear and listen to and, of course,

Erin: 38:29

like ways for them to research to find out if it's a fit for

John: 38:32

them Yeah. more information Yeah. Do you have anything you recommend?

Janice: 38:36

well, the first thing is Google.

Erin: 38:39

Hey,

Janice: 38:40

seriously. every state has their own list of end of life doulas, depending on the state. there are some organizations like NIDA, National Alliance for Death Doulas, and Enelda, and some other things that you can click on, and they have websites of, tons of information. If you Google my name, my angel Janice will come up. And, the reason I built this company of my angel Janice is that it's to honor my mom. She always told everyone I wouldn't still be here if it weren't for my angel Janice and her favorite flowers were Lily of the Valley. So that's why I created my logo with that. So, yeah, Google is the 1st place to start if you want to just start diving in, depending on what state you live in. there could be, a number of doulas within your state. There aren't that many of us. Around the country yet we are growing. I did not get my certification through Nita or an elder. And so I am not listed in their directories because they only wanted people who went through their training process to be included in those. Some hospices actually have end of life doulas that are volunteers with them, and it just, depends. It's just starting, the search. We're not in the phone book, but there aren't really any phone books anymore anyway. that's why I think that, Google is your best place to start to find out what doula. Are there any in your area? Uh, social media, we have a number of people all over the world who are doing this, so I can't give you a more direct answer than that, but everybody, because of where you live, will either have resources or not. And because we are a global community, and we do have internet and everything else. You can get in touch with anybody in another state. It's not a problem. You were either, websites or through other means. I am a willow end of life educator, so I do presentations either virtually or in person and because of my affiliation with them, I am on another educational platform called pick. My brain dot world. And if you go there and you look me up, we can have a 20 minute conversation about what you're looking for. If you need some help, I might be able to direct you in the state that you live in. Otherwise, we can do things online. So it is not just a matter of having someone physically in your presence. Thankfully, we have other resources online that you can take advantage of.

Erin: 41:39

Are there questions that they should ask when they're looking for an end of life doula? Just to know, because it is such a smaller community just to make sure that they're guiding them in the correct direction.

Janice: 41:52

usually conversations like that are the assessments. What is it that you need? are you taking care of a sick loved 1 or do you, have, terminal illness? Have you, You just looking for guidance. Are that's where those conversations come in about figuring out what is best for you. I had a woman last year. Call me. She was in her 70s. Her kids had moved away. She was alone, but she wanted to know what. Kind of resources might be available in her area. So, um, we did a little bit of brainstorming and I came up with a couple of things for her to look into and it worked out for her. She was thrilled. I didn't mean to physically be there to do that research, but having that initial conversation of. What is it that you're looking for, because I'm not going to just ask you specific questions until I hear from you what it is that you might be looking for, because I'm not. That's not part of my protocol, okay? I am not a healthcare provider with, you know, you have these symptoms and this is what we do. Everything is customized. And we listen.

Erin: 43:05

I would say, so our listeners, when they are looking and asking questions, it's very important to know if someone says they have a license on this, there are no licenses. There's only certificates.

Janice: 43:17

There are no licenses. like I said, I got certified through IEP college. It's a certificate program. So that's why I say that I am certified because I have taken actual coursework in it.

Erin: 43:29

So that might be a good question to ask too is we know there are certificates out there. Where did you grab your certificate or your education come from? know, that'd be great. And then when it comes to pay, is it private pay? Is it insurance pay?

Janice: 43:47

Yeah, we are not covered by any insurance. But like I said, that also gives us more flexibility to be able to give you the time that you need in order to be able to fulfill the needs that you have. I don't have to see 50 people in a day. If I'm working with 2 families or individuals, I have. 20 hours a week for you, whatever you might need. I have that flexibility to give to you so that you are not feeling rushed and that you are embracing the reality of what's happening to you.

Erin: 44:25

Is it okay to ask the doula how many clients they have?

Janice: 44:30

It's okay. to ask. I'm not giving any personal information. Yeah. I have three clients today. There isn't anything, that would prohibit me from saying, you need 10 hours within the next 3 days and I might be able to swing in 8. So, you've got to have a little bit of flexibility and it goes both ways. But, more often than not, it is definitely doable and workable. because it is my business, because it is my, way of doing things, I will not overbook. And if I have a client who is nearing the transition process, I will make sure that I have enough time available so that I can be there when the family

Erin: 45:16

That might be another great question for them to ask is, as we're transitioning to the death process, what's your availability to us? Or how do you handle that? Your flexibility? So I love that you said that.

Janice: 45:28

Yeah, go ahead. John.

John: 45:30

I was just going to say, also depending on the, hours of the day, right? Because we go to bed at 10, and then we wake up, early in the morning. However, some people may work at night, may, Work during the day and so there's so many different varying things that happen and so when somebody's actively transitioning through end of life, they need to know that they have somebody there to support them. And I know hospice is 24 hour, availability. That doesn't mean 24 hour care. That means they're available 24 hours for a phone call. Maybe a visit or whatever, but you have a lot more flexibility to help support a family if they need That care during hours when maybe hospice isn't there.

Erin: 46:15

So that would be another question to ask. What is your availability? Is it morning? Is it evening? 24 7 you can call and I will be there

John: 46:22

Yeah. Yeah Because those are.

Janice: 46:25

the clients.

John: 46:26

Yeah, those are such important things for anybody to know because if I'm working two jobs, and say I'm a single father of a young boy and then, I'm helping my mother who's transitioning through end of life and I. I can't always be there to really be able to create a plan of care with my doula as well as my hospice team to help support my mom she's going through that transition. So

Erin: 46:52

I know you mentioned you have some resources available to that our listeners can go to if you wouldn't mind sharing that with us as well.

Janice: 47:01

So, um, I put together and anybody could do this, a before and after someone dies checklist. And if you are looking to start this process, because you have not done so yet, this is something that. You can use for yourself as well as for your loved one. And if you were to email me at my angel, janice111@gmail.com, put in the subject line Connect Empower gift, I will be happy to send that to you. Now, I created it and it is based for people who live in Ohio, but everything that is in this document can be. customized so that you can find out in your own state what it is that you might be looking at, whether or not it's with the Veterans Administration. And there's things that each state's veterans groups have, if you're an organ donor, if you have final wishes that, you really want to incorporate into your plan. If you've got a really stubborn family member, who's like, well, have you started this yourself? I heard that from my own dad. You could say yes, I have this document. I have started doing this And why don't we talk about this for you this way? You aren't just coming out of the blue Saying, you know We need to talk about this and they're going to fight you tooth and nail and it's just not going to get anybody anywhere I have had clients whose parents or loved ones have refused to do any planning at all because they're dead and they don't care. So if you are the primary caregiver, you have every right, especially if your power of attorney, and I really highly recommend that if you have those responsibilities, that you have a backup. And if you are the executor or executrix of someone's estate or will, you have a backup person. Do not just have one person because you do not know what could possibly happen. And I have seen some things that I would have never ever been able to in my wildest imagination. Happen so having backups is so important having documentation having a plan in place for yourself. So you can say, yeah, I've decided that this and this and this and this is what I want. What would you like to do? Let's have at least maybe talk about 3 things get it started slowly. And if they still fight, you want it. And you're the one who's going to be responsible. Do it yourself, do the plan yourself because you do not want to have a situation where a catastrophic event happens and then you are scrambling because you have nothing. It's so much easier to do a little bit of planning ahead. And it can be as easy or as difficult as you want it to be. So really the choices are yours and you have every, tool available to you. There are different websites now that are doing pre planning so that it is an electronic document. Some of them are creating videos. as far as, your final wishes. If you are terminal or if you have something that's a debilitating illness, there are other things that you can do with your physician where you would have documentation in place, a physician's order of life sustaining treatments or medical order of life sustaining treatments. Those documents are filled out by your physician as to whether or not you want to have a do not resuscitate. Whether or not you want any kind of extraneous, things done to keep you alive. These things are things you need to think about. Because we don't know what's going to happen. Are we going to be lucky enough to just die in our sleep? Or are we going to go through a whole long, lengthy process? And if you don't have anything in place, things are going to happen that you're not going to be happy with.

Erin: 51:27

That's what I tell John. I said, I hope I don't wake up. I hope I just, I fall asleep

John: 51:32

one of the things that keeps coming up during this discussion and most of our podcast discussions is being proactive instead of reactive. And I think that we are giving our family's a gift by helping prepare. What we could possibly go through at end of life and also the nice thing about it is it is when you do things like there's a thing called five wishes that you can fill out and it helps people determine what they want and then they can share that with their families And, It's amazing at end of life how Families can start to argue. Oh, no mom wants this. No mom doesn't want that and it can create so much turmoil And the loved one that's transitioning can feel that right. We want everybody on the same page. And so I love that we've had this discussion today that you've been here and you've given our listeners another thing to think about when it comes to end of life, end of life shouldn't be feared. It's something that we're all going to go through. the most important part of in end of life is, is having a better understanding and being better prepared. so thank you for, for sharing all this information with us. I appreciate that.

Erin: 52:46

I have a final question that I'd love to ask and it has to do with travel. definitely opposite of where our topic is, so maybe lighten the mood a little bit. But where have you been or where would you like to go that, maybe we haven't been or you'd like to share because you had an amazing experience there or you're looking forward to going to?

Janice: 53:07

I have not had the opportunity to really travel that much in my lifetime because I was always busy taking care of everyone. at this point, I really have thought about possibly going to Australia. Just to see what it was like over there, I love birds and they've got so many different tropical birds over there that just are all over. we have, pigeons here or, blue Jays or whatever. So it just and to see another country. And to experience that Thailand is also someplace that is intriguing to me. I have friends who have, sponsored daughters to, be here in the States for a year. And so now they have daughters in Thailand and it's they're my nieces now because I got to know them as well. So going there would be really fascinating, journey just to see another country and how they live and. It's just, 1 of my bucket list things.

John: 54:09

I hope you get to do it. We both been to Australia and, it's an amazing country. The, there is one flying thing in Australia that you won't look forward to encountering and that's, they have these bats that you will see hanging up in the tree. And these bats are not like our American bats over here. They're like B1 bombers. they're massive, huge wingspan, they'll cruise around, and sometimes they even launch off a tree in the middle of the daytime. And yeah, so if you're terrified of That's

Erin: 54:38

excites her though. So you just got her going that lit her

John: 54:41

fire Oh, yeah, yeah. yeah. yeah. So thanks for sharing that we, we're sorry, That's a little bit off the subject. but it's one thing that Erin and I are passionate about. We went to, I think close to five different countries this year, so we love to hear wherever some, somebody else would love to travel to.

Erin: 54:58

thank you again. We appreciate you being on our show today and sharing all your amazing resources and your knowledge with all of our listeners.

Janice: 55:06

Thank you so much for having me. I've enjoyed this very much, and I really do hope that your listeners take advantage of working with an end of life doula because you don't need to work with us just because you're dying. You can do it while you're still around and healthy, and then that way you're pre planned and you review it every five to ten years and make changes as necessary, but. You've got that one thing out of the way, and then you go and you live and you have fun and do your best life.

John: 55:39

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: 55:53

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: 56:14

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: 56:29

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John: 56:50

I'm John.

Erin: 56:50

I'm Erin. Until next Wednesday.