Memory Care with Teresa Youngstrom
End of Life Doula with Stacy Hannah
(upbeat music) - Hey, Care Partners, Teresa Youngstrom with Memory Care with Teresa Youngstrom. So great to see you. Hey, we have a great day planned for you today. A new guest speaker. I just want to again remind you that my company is a better approached in memory care. We try and do what we can to educate people on what it's like to have dementia or different types of brain failures. And then how do we come alongside and join these individuals on the journey? So every week we do our best to seek out different types of speakers, different types of parts of the pieces that come into play when we're caring for someone long-term on this journey. And it's not a quick journey, it is a long journey. And so today I am so excited to tell you about Stacey Soquel Hannah. And she's here, her company is called Graceful Journey. Let me tell you a little bit about Stacey. So she's the founder of Graceful Journey in Atlanta. All right, she's a certified aging navigator, independent consultant with Tiva Snow, certified positive approach to care trainer, mentor, coach and a consultant. She's a graduate of Roslyn Carter Institute of Caregiving as well as trained end-of-life coach. Her goal is to educate and advocate for clients and families. She empowers care partners with skills and knowledge to create meaningful relationships and engagement opportunities. And she makes sure her clients' voices are heard and their needs are met and safely and securely are her number one priority, right? Safety and security. So it sounds like someone I would be friends with, right? She does care planning. She does care partner education and training. She does end-of-life coaching. And we're gonna talk about that today and what it means to be an end-of-life doula, right? So new terminology, maybe this is a new topic for you. It sort of was for me when I met Stacey and some of her colleagues. But she's also a sister, a mom, an aunt, a new grandmother. But she's been a caregiver and knows firsthand the challenges of the aging process, right? Her professional expertise from working in memory care facilities and with hospice organizations makes her uniquely qualified to provide training, education, give advice and guidance and support to centers, organizations, families, and individuals. You can see why I needed to have her on today. So please help me welcome Stacey. - Hi, Theresa, who's that person you are talking about? I have no idea who that was. - Yeah, I know exactly who it is and it's my friend Stacey and I'm so glad you're here with us today. And it's such a great topic because I don't think a lot of people are familiar with it. You know, I'm in Cincinnati, you're down there in Atlanta. But to me, a doula was associated with maternity and giving birth and here you are helping folks at the other end of the spectrum. And I think that's so cool. How long have you been doing this? - I have been doing this work about seven years. - Wow. And what made you want to become an end-of-life doula? - When I was looking, changing careers from secondary education, I knew I wanted to work with individuals with dementia and honestly, I was Googling and end-of-life doula came up and I started reading all about it. And I was like, that's me because I don't have a social work or a nursing background. I needed something that I could add value to. - Right. Well, I think that's amazing. Like, give us an experience. Tell us a little bit more about what it is you do. So maybe if you could explain an experience on how you joined someone on that journey. - Okay. There's so many people, but I'll just tell you, my first end-of-client had ALS and I had known him before in his family. And what interested me about the ALS was, here was a person whose body was not able to move, but his mind was. And most people I talked with, it was the reverse. The mind is gone and the body is there. So I was able to share and be part of an experience where someone could tell me what was going on until the very end. And the day he did pass, I was standing in his living room, holding his brand new granddaughter that was born just a few months before he passed away. And that was a beautiful experience. And then when he passed away, unfortunately, the hospice came in and pronounced him deceased. However, they did not clean him up and make him look presentable when the funeral home came. So I helped the daughters clean him up and make him look special because he was leaving home. And I helped families navigate that part. Like what do you do when someone dies? You either call hospice or you have to call the coroner or the police to come pronounce. And then you have to wait on the funeral home. Hopefully you have picked one. And in my practice, I usually call the funeral home when I'm calling hospice because many times it takes the funeral home a long time to get to where you are. And I don't think that families should be waiting with someone who's just passed away in their home if they don't have to. - Right, and if they don't want to. So it is different probably for different families and their different experiences. I know when my mom passed and it was in our home, having been a hospice nurse in my career, you know when you're as old as I am and I've worked as many places as I have, you've got some experience, but it was interesting that I didn't go into the grieving mode and not really it didn't take her that long. She started feeling bad within a week, you know, she had passed, but really it was the crisis was 24 hours, you know, that we were, had to actually start giving her something for discomfort. I mean, it was amazing and it was, could have been so much worse, honestly, it was amazing. We were so thankful that the suffering, you know, was not long at all, but I went right into nurse mode stays and immediately start cleaning her up and immediately start putting on the outfit I wanted her to be in because I knew my family members were gonna be coming to kind of see her at the home and it was gonna be the last picture in their mind, right? She was gonna be cremated, it was gonna be the last they saw with my sweet mama. And so for me, I probably didn't grieve well, I didn't have a death doula, because, and so I just, as a matter of fact, when the hospice gal got there, she was kind of like, "Oh, well, we'll do this." And I said, "Oh, well, let's do it together." You know, 'cause I was already in boom, boom, boom, boom, next thing, next thing, next thing, next thing. And I wanted her to look beautiful for everyone to come see. I wanted her makeup on, I wanted her to pair fixed and I wanted to wear in the dress that I bought for her. So, and honestly, we cut that dress up the back and put it on her and it was so great. So, tell me more, so I'm putting some pieces together, but I think there's probably a lot more that you guys do. So, let's back up. Tell me more about what all do you do, what all the services that you provide someone as an end of life doula. - Good question. - Yeah. - As an end of life doula, I do a variety of things and everyone practices differently. So, this is my practice as an end of life doula. First, I would love the opportunity to have established a relationship with that person. But a lot of times I don't, which is fine. So, when a family calls me, which is usually in crisis, if they have not picked a hospice, I encourage them to pick a hospice. And how do I differ from hospice? Because that's a lot of questions. Unfortunately, today hospice doesn't have the opportunity to handhold and to guide you through this process. They are able to provide equipment. They are able to provide comfort medication. They can send out a social worker and a chaplain. But many times people die and hospice is not there. And families are not aware of that. So, I help educate them, what is going to happen? And when hospice gives you that emergency e-kit, what are you supposed to do with it? No one, not many people are in the medical profession. So, what does this look like? How do I keep them comfortable? You know, I teach them nonverbal signs of end of life. So, they can be aware of it. I educate them on what will happen after the person passes away, what the next steps are. But there are many times during the transition that I will lay next to the person transitioning. Or I will talk to them or play music, try to keep them relaxed. And I tell families, there's a few things people want to hear at the end of life, and sometimes they're waiting on you or another person to say it. So, let's get those phone calls rolling. Yeah. Yeah, I think you're absolutely right that having worked hospice and having walked several people to those pearly gates, I can tell you that they sometimes are hanging on because there's that one relative or that one person who hasn't said it's okay to go. And so, I think that's what I'm hearing you say is that if we got to tell them it's okay to go, it will be okay. You did a good job, Mom. You did a good job. And they hear it because hearing is the last sensation to go. And they process it when they want to, is I have noticed. You can tell them it's time to go weeks before time, but they're not, they're leaving on their own accord. There is no anything. When they're ready to go, then they will go. That's right, I just feel like, yeah, we're not God. And that's between them. So tell me, if there's a separation between an end of life doula and hospice, I can see how they overlap it. Tell me, what would you say the differences are? I would say the end of life doula is able to provide additional support emotionally, mentally, physically for the family, as well as the person that's dying. Because hospice is not there all the time. And an aid may come three times a week to bathe your loved one for 45 minutes. And those are all your hospice touches. It's not that you can't call a nurse on the phone. They will answer. It's not they won't answer in 24, you know, in the middle of the night. But I'm able to do the education and emotional support. That hospice just doesn't have the time to do right now on a large scale. I can be there all the time. Whether that's through the phone or that's in person. You know, every end of life is different. But that's what I add. - Absolutely. So why would it be important to call Stacy instead of someone else? Because I'm from the sale and we have great hospitality down here. - That's true. - Why call me because of my hands on education that I provide, the compassion and empathy that I have, the way that I advocate for a person who is transitioning, the way I'll get in the bed with them. You know, I add those personal things 'cause they're important to me. It's how I would love one to be treated. I give you a concierge service towards the end of life. - That's awesome. And is the family usually receptive to those things? Do you ever had a family that's like, oh, I don't know about this or I don't know about that? Or I mean, I would think it's, it can be for people that are completely, have never been exposed to this process. I would think it can be frightening. - Yes, definitely. A lot of people don't want me. And then when I get into their house and show them what I do, they're grateful that they had me. But many times there is conflict between the adult children and the parent, the adult children and the parent that is well, conflict between outside family members. My goal is to keep that loved one as comfortable as you will allow them to be. I do role playing for them, what it's like to be at the end of life. Are they comfortable like that? Would they want their loved ones to be like that? - Yeah, I think helping them understand not all conversations should be done in earshot. - Of the person. - Absolutely. - Yeah, just 'cause their eyes are closed doesn't mean they're not listening. - And they do. - 'Cause they are listening. I agree 100%. Even working in the emergency room and having folks that were near-death experiences, it's amazing what they are still able to hear. And sometimes come back and tell you afterwards, it's interesting too that they maybe aren't even feeling pain even though they should be, but they're hearing what's going on around them. Even with their eyes closed. So I've talked to people about that and have those experiences. So I concur 100%. Are there certifications for end-of-life doula or is there a national organization? What do you need to do to be what you are? - Right now because it's a new field in America, there are several places in which you can become a certified end-of-life doula. There is not a national certification. In countries like England and Italy, end-of-life doulas are the thing people know about them, they want them to come. So there is higher standards that you have to meet. So right now you can pick any program that you want. I do see that this will fall under a national organization. - Okay, all right. You're so passionate about this. Is there life experience that you had that makes you more passionate? I know my experience with my mom and the whole dementia experience certainly is what lights the fire under me to go out and be able to educate people. How about you when it comes to end-of-life doula? What is it that fires up your passion? - I think it's the experience that I had with my dad. He was diagnosed with AML and he was gone in 10 days and he chose not to have any treatment. And my sister and I were all about it because he could make that decision. And I wasn't even in the position I am now. And we got a lot of pushback about it. And abiding by his wishes and letting him make the decisions and the experiences that we had as a family during the times when he was at inpatient hospice weren't just beautiful. I didn't even know this position existed at this time. But when I found it, I'm like, that's it because when my dad was in the hospital, the grandchildren came to visit and they were crying. And one of the nurses had the audacity to come in the room and tell them to calm down, not to cry so loud. They would disturb other people. And I was like, right, these are grandchildren. Showing emotion. - Yeah, real emotion that is healthier to show. We certainly know that. Stifling emotion has not gone well for us in the long run. - No, leads to all kinds of other problems. - Because, so I think because my dad did practice those things that I believe in and we let him make those decisions against everyone's wishes. - Right. - That was really fast. That was really fast though. He passed very quickly. - When he found out what the treatment would entail, he was like, no, I'm not doing that. Okay, you get to make that choice. And they should get to make the choice. They should. And that's what's sad, I guess, with a lot of our folks with dementia. If they haven't, they don't have a will or an end of life plan. It's so much better if it's their plan and we can work their plan. 'Cause with our folks, they typically can't tell us what they want to do there at the end. And it's certainly a journey. It's not 10 days. It's not a quick, you know, take your cancer kind of situation. So it's such a long journey. - So I do talk about how important end of life planning is. It is huge. And it's a gift that you can give your family, actually. Like there's no contest when you get to heaven that said, oh, I left this for my children to decide. There's not, it's just not there. So give them this gift of letting them know what you want. And giving them my mom for a long time. What do you want? What do you want it to look like? - Yeah, so important. I know, you know, being an old nurse and working in the ER, I always wanted to know what were the wishes, you know, someone comes in under life support. It was like, was there, you know, was there a DNR? Or did they want everything done? Do you know if they want everything done? And it was so hard when families hadn't had that. It was conversations. And I think in this area, wow, having, well, everyone should have their will and their powers of attorney all signed up. If you haven't done that yet, you guys need to do that. Have that all done and documented, notarized and copies to the important people. But to have this stuff written down and paid for, how nice that is on the family members, what a gift. You're so right, that is such a gift. It is a gift and really, if all you do is tell your wishes and write a will, that is a gift. - Yep, 100% agree. - There are other things that you could do, but I did have one case where the attorney had to come to the bedside because there was nothing. He had nothing. And so I called an elder care attorney and they came, but I mean, it had to be just like this. - Right, so that person still had the ability to, were they still able to communicate? - Yes, at that time, they were. At that day, they were. But soon after that, they weren't. Time was of the essence. - Yeah, you know, births and weddings and deaths and those are huge emotional times for us. And so in a position like what you do, how do you separate it so you can clean them up so that they look great to present to their family members? I mean, you really have to, I would think on a repeated basis. I've done it a couple of times, but this is what you do for a living. And so how do you, how do you take those emotions and set them aside? Is it knowing that you're fulfilling the desires of that person? What is it that drives that? - It drives it because I feel like being an intellect doula is a gift that someone is allowing you in their home during the most vulnerable state. And if I don't wanna go out like that, you don't wanna go out like that. - No, and how do you disconnect with the grief? - Really, because I'm not, I am connected to every person, but I'm not, for me, there's a lot of celebration. There's usually a lot of thank yous for my part. Thank you for letting me be part of this. Thank you for teaching me. It's a gratitude. I'm not saying I don't get upset, but I'm just able to compartmentalize it. This is the gift I've been given to be with someone on their journey. I wanna make sure they look good before they go. - I can see that. And like I said, that last look of what's gonna, what's gonna stick in your mind of what they look like. It's very important. - It is, and I don't know what it's like in other parts of the country, but here when the funeral home comes in and they go into the room to get the individual who has passed, I'm always in that room because I wanna make sure that it's done gently. The other thing I do is I go and get the family and say, "Hey, would you like to come in and say your last goodbyes?" It's very unsettling when funeral homes will bring the person out that is deceased with their head open uncovered and their body's still there. So this allows them to have that private moment and then for them to be covered fully on their way out the door. - Yeah, and different strokes or different folks on that, I'm sure. We were able that, our funeral home actually said, "When do you want us to come?" Since she had died at home and I had more family members coming, have a big family. So it was a celebration too because my mom, it was a decade of decline with dementia. And so I agree with you that it can be a celebration. Not that we were glad she was gone, but we were just glad she wasn't suffering anymore. She was at peace and she was on to something better. And we actually were able to join in her bedroom and sing songs and pray. And that might sound so foreign to some people, but I gotta tell ya, when it comes to the healing process of that, to share that moment with your family members, that last moment with her, someone so special, like the mom, we had eight kids and all the extended family and my dad there, I think it was healing for all of us to stay. So I love that you, that you do that, you encourage them to come in and say their goodbyes. And you know, if they need to hug and kiss that person, they still can. - Absolutely. Without that person losing its dignity as they're leaving their house. - Yes. - Yeah, we're not gonna have that. - Yeah, I will tell you that the funeral home we used also had a beautiful patchwork quilt that they put over her. And so it was still something beautiful. They were, I would say, conscientious of making this as pleasant of an experience. And that, like I said, they did allow us to tell them when we wanted them to come. And of course, I have a feeling that there were some family members that would have never wanted them to come. So I just plain made a decision after a certain amount of time that this would be it and this would be enough, and then it would be time to let go. - Right, in my end of life training, I do know how to keep a body at home, I do know where you get the dry eyes. I do know how to do that. I mean, it's not, I would recommend it, but I was trained in how to do that. - Wow. - It's just fascinating. - That's incredible. Yeah, I know nothing about that, but I can see why, just like you need a birthing doula, why an end of life doula would be so important in someone's life. Stacy, how do people get ahold of you? If they need a consultation on what they're going through right now, or, you know, if they're in Atlanta, Georgia, if they're in the south, - If they're in the south, - I would love for them to go to my website, gracewilljourneyatl.com. And there is a page where you can go and send me a request to meet, send me some information. I'll be happy to talk to you. I offer a 45-minute complimentary consultation. So I'm just happy to talk to you. And maybe that's all you need, and that's okay. - That's awesome. Well, I love it. I so appreciate you being here and sharing your gifts with us today. Like I said, we've never talked about this today's, but I think it's important to get this information out there and just let folks know that, you know, in this journey, there are other people out there that can help you with different pieces of the puzzle that can help families along the way with what's coming down the pike. It doesn't all have to be so foreign and so difficult. But yet there's people like Stacey out there who can make this a celebration as your person, you know, as rounding third and headed for home. That's what I like to say. - I love that. I love that. - I love that. - Okay. - And I don't want your audience to think it's not sad, there are many emotional sad times. - Yes. - You also have to make space for that too. - Yes. - And every family member grieves differently and that's okay. Grief doesn't look the same for everybody. - Yeah. In a long time, I'm sure you provide a loan time for certain individuals too. - Yes. - They need to go in there by themselves and make their piece. - Definitely. And I do that at one person at a time at the very end. - Yeah. - I would just like to say in closing that the end of life process is a journey. Just because you're ready for someone to go does not mean they are ready to go. And you can ask me, you could ask anyone. No one has a timeframe. Sure, I can look at the body and say, "Huh, this, this, and this." But they're in control of when they want to go. - Yep, you're absolutely right. Well, Stacey, this has been a pleasure and I just so appreciate your time. And I'm glad we're friends and colleagues and I can call on you if I need more information about this. So everybody out there, this is Stacey Hannah and she provides an incredible service, a service that not a lot of people like me, even this old nurse know a lot about. So we wanted to bring her here today so you can learn more about what it means to be an end of life doula. And so you can contact Stacey for more information. And her information will be scrolling across the screen just for you. Well, that's a wrap. I'm looking at the time and another, it goes so fast. We want to share so much information with you. But I hope you found this interesting and enjoyable and you can share it with someone else. Again, I'm Teresa Youngstrom. My company is a better approach to memory care. We do consultations, whether it's, you know, on the phone, on Zoom or around the kitchen table. You know, we do staff training. We have staff training videos available for your organization that you can stream in an unlimited way for just $49.99. Okay, you can find that on our website. We're putting together staff training for first responders. How cool is that? But as you always know, there's gonna be a bonus page in the show notes. So those of you who have stayed till the end, way to go, go to the show notes and find the bonus page for this month. We put a new one in every month with more information to give you the tools to manage this journey with someone going through life, going through dementia or maybe going through end of life like Stacey helps people do. Thanks again for being here, everybody. Thanks to Griffo Productions for broadcasting this podcast and keep in mind everybody, you got this. (upbeat music) (upbeat music) (upbeat music) (upbeat music) (upbeat music) (dramatic music)