A Death Doula's Guide to Dementia Support with Lori Rizzo

In this episode of Seeing Death Clearly, I speak with Lori Rizzo, a death doula in the Philadelphia area, about her transition from corporate leadership and training into end-of-life care. Lori shares how her personal experiences led her to this work and why she has become especially passionate about supporting individuals living with dementia and the people who care for them.

We discuss the challenges many families face after a dementia diagnosis, including stigma, isolation, and the overwhelming amount of information that can be difficult to navigate. Lori explains why education, community support, and early planning can make a meaningful difference for both the person living with dementia and their care partners.

Our conversation also explores common misconceptions about hospice care, including the belief that hospice provides around-the-clock caregiving. Lori emphasizes the importance of having conversations about end-of-life wishes long before a crisis occurs and shares her approach of "hope for the best, plan for the rest" when discussing advance care planning.

We talk about the role of death doulas in supporting individuals and families through serious illness, the dying process, and grief. Lori shares how doulas can help create comforting bedside environments through music, reading, ritual, and meaningful connection, while also offering a calm and steady presence when circumstances don't unfold as expected.

In addition, Lori highlights valuable community resources, including Dementia Friendly Pennsylvania, memory cafés, and support groups that help reduce isolation and build connection for families affected by dementia.

Whether you are caring for someone with dementia, planning ahead for the future, or simply curious about the role of a death doula, this conversation offers practical insights, compassionate guidance, and a reminder that no one has to navigate these experiences alone.

In This Episode We Discuss:

• Lori's journey from corporate leadership to death doula work
• Dementia, stigma, and caregiver isolation
• The importance of early end-of-life conversations
• Common misconceptions about hospice care
• Advance directives and end-of-life planning
• Vigil planning and creating meaningful bedside experiences
• The role of death doulas during serious illness and dying
• Dementia Friendly Pennsylvania, memory cafés, and support groups
• Supporting families through uncertainty, grief, and change

www.compassionatecrossingsdoula.com

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https://www.dementiafriendlypa.org/

Transcript

Lori: [00:00:00] Let's start telling more fuller human stories, right? Ones that include connection and identity and meaning, so we can change the narrative around how all of us think about it. 

Jill: Welcome back to Seeing Death Clearly. I'm your host, Jill McClennen, a death doula and funeral celebrant. I created this podcast to have honest conversations about death, dying, grief, and life itself.

My hope is that each episode offers a space to explore these topics with curiosity and compassion, challenge old assumptions, and consider new perspectives along the way. Today, I'm joined by Lori Rizzo, a death doula in the Philadelphia area. Laurie shares her journey from a career in corporate leadership and training into the world of end of life care.

We talk about her passion for supporting people living with dementia and their care partners, and the stigma, isolation, and lack of understanding that so many families face after a diagnosis. Our conversation also explores why discussions about hospice and end of [00:01:00] life wishes often happen much later than they should, common misconceptions about what hospice does and doesn't provide, and the importance of planning ahead while still holding on to hope.

We also talk about community resources, including memory cafes, support groups, and the work being done through Dementia Friendly Pennsylvania to create more understanding and support for those affected by dementia. Thank you for joining us for this conversation. 

Lori: Welcome, Laurie, to the podcast. I'm excited 

Jill: to have you on today.

I feel like we've been in each other's death doula sphere for years now, but this is actually our first time officially meeting, and I know you're local-ish, at least to me, Philly area. Mm-hmm. So I'm excited about this, to learn about you and the work that you do. 

Lori: Yeah. Thanks for having me. Yes, I'm on the other side of the river.

Jill: I'm right on the other side of the river from Philly, so sometimes I feel like I live in Philly. Yeah. But I have a yard, and I have parking, all of that. Me, 

Lori: me too. I'm out in the suburbs. 

Jill: And are you originally from this area or is this a new area for you? 

Lori: Yeah, I'm [00:02:00] not. I hail from New York. I've been here for about 20 years, but there's, after a short stint in your neighborhood, in South Jersey, in Maple Shade.

We moved here about 20 years ago, so I'm here with my spouse, Kitty, and our k- kitten. My family's all on Long Island, but I've been here since 2001 now in the area. 

Jill: Yeah, so then not local growing up, but even New York, we are definitely a different breed, this area. It's Philly, Jersey, New York-ish. We are our own people, for sure.

Lori: I just don't mention that I'm a Mets fan. Yeah. That's not always safe around here. 

Jill: No. Philly, we like our sports teams. We do not like others. 

Lori: Especially the New York teams. 

Jill: Yeah, exactly. Awesome. And what did you do before you became a doula? Did you start off in healthcare at all? What led you to being a doula?

Lori: No, I come from the corporate world. I spent most of my career, until about six, five or six years ago, in various leadership roles in learning and [00:03:00] development, training, corporate training, some internet marketing, some event planning. Very happy not being in that world anymore. 

Jill: I understand that. Sometimes it's funny, people will say to me, "I don't know how you can work with people that are dying.

That must be so hard, and it must be so sad," and all these things. And I'm like, "I don't think there's anybody that you talk to," right? I come from food service. You come from the corporate world. All worlds, when it comes to your career, have really bad points to them that are exhausting, and draining, and really difficult to deal with.

So I'm like, I don't know, I feel like this work at least, I feel like I'm helping people. 

Lori: Yeah. 

Jill: And yeah, sure, maybe it's during a really difficult time in their life. But it's part of reality that we're all gonna die- Yeah ... and that this is the time when somebody needs this kind, compassionate, non-judgmental, just show up and tell me what you need, what you want, and we'll figure out how to make it happen.

So like you said, a party planner, [00:04:00] right? Or like an event planner. Yeah. In some ways, that's what we do, I think, as death doulas, is help people plan for this event that is gonna happen to them. 

Lori: It's going to happen anyway. So that's what I tell people. Yes, it's a hard time. It's a sad time for families. And it is sad.

I get sad along with them. We get close to people. But it's going to happen anyway, so I love that I can provide that support, comfort, presence, connection to help them through that difficult time. It's rewarding. Mm. Yeah, for sure. 

Jill: It is very rewarding work. And what do you do with your clients? 'Cause I know every death doula I talk to, and at this point- Mm-hmm

I've talked to quite a few, either on the podcast or outside of the podcast, and we all do things a little different. And so what are the main types of work that you do with your clients? 

Lori: Oh, that's a good question. I'm, a lot of my focus is on dementia, because I- Felt early on that, [00:05:00] okay, this is something that I feel people need more support with, and I need more education and more training and more experience with because inevitably I continue to run into early on as a hospice volunteer and my very first clients all living with dementia.

And I just realized how much stigma, misunderstanding, and how isolated families are. So I don't say that I specialize in it, but I definitely gravitate toward those are the families that I tend to be more involved in. But as a doula, I meet them where they are, right? Whatever their needs are. If it's very close to end of life, then I'm helping them prepare for that.

Vigil, thinking about what's needed, what's coming, a lot of education. I know we do a lot of that. Hospice does as well, but it's hard to remember all of that in the middle of the emotions that people are going through. Or if it's earlier in the disease, like I recently had a client where I was involved very [00:06:00] early from the diagnosis.

And that was nice because I was able to help that family while they still had some hope and were seeking treatment, also walk two paths. There's a book, I don't know, you may have read it. It's written by a couple palliative care doctors in Canada called Hope for the Best, Plan for the Rest. 

Jill: Ooh, I don't actually know that one.

Lori: Yeah. 

Jill: That's a new one. 

Lori: Yeah. And it's, as an... Early on as a doula, I always worried about helping people be realistic and stripping away the hope. What I've learned along the way is it's okay to walk those two paths, especially if it's early on and you are seeking treatment, even if the goal is to buy some time, right?

But where does that overlap into this treatment is now making me sicker, right? Mm-hmm. And the quality of life is not what it should be, what we all deserve. So walking this, this dual path of hoping that this treatment will buy some [00:07:00] time, extend the life a little, go into remission if it's cancer, or be cured.

If it goes that way, great, but what if it doesn't? And how can we talk about that early on? What are the things to prepare for, keeping in mind and thinking about later as if the disease progresses, and if the decision is to stop treatment, then what? What is that going to look like? And who do we need to have in place early conversations about hospice?

Educating early about hospice when I can because there's so much misunderstanding and stigma around that. People think it's giving up. Yeah. And I had them, too. When my mother was sick and diagnosed, we never talked about what if. She was in her early 80s and wanted to fight. I don't even like that word anymore, right?

Fighting the battle. 'Cause what does that mean if- It doesn't work out. You didn't try hard enough. You didn't fight hard enough. When someone else went through the same disease process and they came out on the [00:08:00] other end healthier, did they fight harder, right? So we didn't even talk about what that means.

If the word hospice would've come up, we would've been like, "No, we're not there yet." But learning about it is important. Understanding the service that they provide is important because it, it is a benefit that we can all utilize, and as early as possible, right? Not the final days, not just the last two days.

That happens because sometimes there's a quick turn or a reason that the end of life is coming quickly. But many times we can start hospice earlier. So a lot of my doula work is educating as much as people are willing to listen and learn, gently, right, at their pace. Because depending on the person or the dynamics of the family, it can be hard to have those conversations.

So I do whatever they need in terms of- the services that I provide, it could be talking about advanced care directives all the way until to the end where we're sitting vigil or [00:09:00] preparing for that. 

Jill: Yeah, lots of good stuff in there. One of the things that I just was thinking about too when you mentioned about hospice, this misunderstanding of- Mm

what hospice is and when people should be called in. And this client that I'm working with right now, we're trying to have the hospice conversation, trying to bring hospice on, and then I said, also, "Do you have family and friends that can do caregiving?" And their reply was, "Hospice does 24 hours a day, right?"

Yeah. And I was like, "Ugh, no, they don't." They don't. But I was under that understanding as well when I took care of my grandmother and they said, "Your caregiver," and I was like, "I live with her. It's me." Mm-hmm. And they're like, "We're sending her home hospice." "Okay, wonderful." And then the reality- I'll just like

of what that meant. But that was like nobody in the medical community talked to me about it either. Yeah. They just sent me home from the hospital with this woman that, that nobody prepared me for the fact that she was gonna act differently, that it wasn't like in the [00:10:00] movies. She wasn't just gonna sleep and then peacefully die.

That's not how it goes. And so- 

Lori: Yeah ... 

Jill: yeah, how do we fix that? How do we, other than doing what we do, which is going out into our communities, getting on our soapboxes and being like- Mm-hmm ... "Please talk about hospice. Talk to hospice way earlier than you probably would." It's a bigger problem for sure than any of us will be able to fix ourselves, but it's widespread, that it's the same things that we hear of, "I don't wanna talk to hospice.

We're not ready yet. I'm not dying yet." Okay, maybe you're not dying yet, but again, you don't wanna wait till you are dying to talk about hospice or to talk to a hospice. And hospice can help people so much. If I could have gotten services for my grandmother earlier, she would've been so much more comfortable than she was for the last six months especially of her life.

But I didn't know. Nobody talked to me about it. Yeah. So yeah, that, that's a hard one. And [00:11:00] it also made me think too of how- One of the main questions I get asked is people say, "When should I hire a death doula? Do I just call when somebody's dying, when somebody's on hospice?" And really, I'm like, no. That's actually

Sure, yes, we can still help you. But at the same time, the best time to talk to a doula is right now. Yeah. Everybody could benefit from talking to a death doula. Yeah. Because I don't care how old you are, I don't care what shape you are in, you could get sick. Like, within the next week you could find out you have a terminal diagnosis.

A friend of mine, her mom, they found out on a Monday that she had stage four cancer. She had no symptoms, no signs, no nothing. Within a week she was dead. Mm-hmm. Everybody was, like, so thrown off guard because they weren't- Mm ... expecting this at all. And even, like, we're going on vacation next week. My mom, gotta love her because she's used to me now talking about death all the time.[00:12:00] 

She said to me, "What would happen if we got into an accident and all of us died?" That's my family. Yeah. And so if we were all to die, and if the kids were left behind or not, either way, what happens? Who has to deal with our stuff? Where does our stuff go? And so I hadn't even thought about that scenario, and so here we are having this long conversation about- Yeah

and to some people, that probably seems morbid, and like why would you wanna talk about that? I'm like, talking about it's not gonna make it happen. At least now I found out some answers, and it would not really be ideal because my father would get everything, and my mom was like, "Oh, no. That's not gonna happen."

Right. Like, "He's not getting my money. He's not getting your house." And also it was like you had to outlive each other a certain period of time, so if we were both in the accident and I lived long enough, I would inherit all of her things. [00:13:00] Even if I died, even if I never woke up, I would inherit everything from her, and then my dad being my next of kin, if my husband was gone and my kids were gone, he would inherit everything.

It was an interesting conversation. Yeah. That's what I didn't know. And so having these conversations are important, and I think that's part of what doulas can do, is we can just help families to have conversations. We can help people know what they should talk about, how they should talk about it. I've been on phone calls with families so that we can mediate the call.

Mediate And make sure that everybody understanding. So really, hire a death doula, like now, just to even say, "Hey, I'm 47. I'm healthy. What do I need to think about? What should I-" Right ... for? Because most people don't think about it at all until they're in crisis, and then that's the worst time. We can still help you, but it's not gonna be as effective than if we talked to you earlier on.

Lori: It doesn't hasten its arrival, like you said, to talk about it, [00:14:00] and we're talking about what matters, right? We're talking about how you wanna be cared for if you had an illness and were at end of life or even how you wanna be remembered. What are you doing today so that you are remembered that way? We don't think about those things.

We go through our lives, survive a lot of times because it's hard. Mm-hmm. But life throws us a lot of challenges, and to talk about these things is what matters, right? Who's going to take care of children if... We don't like to think about, but it's possible. This is, it's part of life. It's just part of life.

And to know that it matters. There are so many things I wished I asked my mom that she would've wanted toward the end. We were there, we were supportive. She died in the hospital, so we weren't dealing with the home stuff, but it's still hard. It just depends on the dynamics of the family. We're a close family, but I wished I would've asked her the simple things.

Do you like us to play some music? Or would you like [00:15:00] everyone to be around? There's a lot of us. It's noisy. Probably she would've said yes to that because that's what she loved. But I just wish that we had those conversations. They matter, so that when it was her time, it was as peaceful and as comfortable as she wanted, right?

Because we're all individuals. And was talking to, talking about asking people their wishes, and I was talking to a man who's a retired minister. And he said, "I don't want people reading scripture and singing hymns around my bed." And I was like, "U- oh. Okay. Does your wife know?" He said, "There's poetry and I love classical music, and there's poetry that's meaningful to me."

Yeah. He said, "I want that also." And I said, "Great. Now we know." Yep. Because we talked about it. So if somebody is in bed laying semi-conscious or whatever they're going through at end of life, they're still hearing, they're still aware of what's happening, and shouldn't we make that environment the way [00:16:00] they want it to be, right?

Mm-hmm. So we just ... And that's, those are extraneous things. We're not even talking about do you want a DNR, do you want a feeding tube? Those are extremely important as well. And sometimes people do that, and that's it, right? Maybe they even have a will, hopefully. Mm-hmm. Because that's a mess after a death when the estate is all over the place, right?

Mm. And we don't know what we're doing with that. We just don't know what we don't know. We don't know how to manage through that end of life because we don't talk. 

Jill: And we definitely don't know what we don't know. And that's why doulas are here, because we know- Yeah ... what you don't know and we're here to help.

The hospital always turns on the TV. It's for whatever reason, the first thing they do. Yeah. And when my aunt was in the hospital and she was dying, the first thing I did was I walked in the room, I turned off the television. She was not a TV person. Could imagine her laying in that bed listening to that noise and being like, "This is terrible."

Mm-hmm. So I found the classical music station. I put that on for her. And then [00:17:00] she was semi-verbal, like she was speaking a little bit. And so I brought three books with me that were ones that she had bought me when I was a child because she was a big reader. And so I knew that to me, like at the end of life especially, like children's books I think are gonna be things that are a little bit better than like pulling out like a big mystery novel.

Mm-hmm. Like we're gonna go with something a little lighter. So I brought three books and I asked her which one she wanted and she said, "Which one do you want?" Yeah. And I was like, "I know which one I want." So I read to her A Wrinkle in Time. Mm-hmm. And during the last few days of her life, every time I would come in I'd bring the book and I'd read to her.

And then while she was actively dying, that's what I did. I sat and I read the book. And I cried. Yeah. And I read the book through my tears. Yeah. Like it was important for me to have something to do, right? Like that I'm not just sitting there watching and waiting for the last breath. And the hospital, they were wonderful.[00:18:00] 

They set the room up really nice. They dimmed the lights. They brought in like snacks for me and drinks so that I was like not just sitting there. But it's a moment in time when you're not gonna wanna just sit and stare at somebody waiting for it to happen. And so that's where having things in place already, having that plan in place, a vigil plan is what some people would call it- Yeah

can just be so helpful, not just for the person that's dying, but also for those of us that are sitting and holding that space for them. Because it was a beautiful moment. I will forever remember that moment. And sometimes I'm like, I wish I could go back and whisper in her ear when she bought me that book when I was like seven, "One day Jill's gonna read this to you when you're dying."

I 

Lori: love that story because that was a moment of connection for you. And she bought you that book, and she knew you were there reading that book, and she even let you choose it because that's who she was, right? But it was still this moment of [00:19:00] connection, and I feel like a lot of times families, especially in the hospital, but even at home, it's this fear of what's happening to the person that kind of keeps them even away.

We always tell people the hearing is the last to go. Say what you want to say. Tell them it's okay to let go. Those are little things that mean so much. But then even to know, because they know the person, right? What is it that will help you and them connect right now? And it's different for everyone.

There's some things we can suggest, but it's also our role to help them determine that. What is it gonna make it... What can we do to make it peaceful for you and the person who's dying? And it doesn't always work out. My very recent situation, this man died so quickly. There wasn't time to set up what we had started talking about.

It was noisy, and it was not seemingly peaceful and comfortable. So there was a little bit of trauma in the moments [00:20:00] preceding, in the hours preceding his actual death. And being there, just a presence to just pay attention to everyone who was there because there was a few family members, a 14-year-old son.

Jill: Yeah. Yeah. That's the hard ones for me. 

Lori: Yeah. Yeah. This, we talk about how this work is hard, right? Yeah. When children are involved, and adult children too, but when it's into children, and just knowing that to be there to help through those moments where it didn't go as we hoped, not the fact that he died, but how he died, right?

How it felt to the family, to him, wasn't what any of us hoped. But being witness to that and being part of that, what a gift. And also knowing that we're a gift to them, right? To be present in that, in those moments. It's humbling, right? To be invited into such an intimate time in people's lives, and it really is being invited in.

They don't have to work with us. But when we can develop that relationship and [00:21:00] rapport with families that we serve, that they're okay with me being beside them through that- It just means the world. It means the world to me, and I think for them as well. I have experience... W- I didn't have a doula, but we, my sister and I had an experience when my father died with the hospice nurse.

Just seemingly arriving like an angel, right? And being in- interested in our dad, and listening to our stories, and she made him comfortable because he was in the hospital. And in New York, they have hospice home. They have inpatient units. Beautiful, very homey-like. The room is not, it's not clinical. That was a hospital bed, but the rest of the atmosphere is very homey, and families can sit.

And this was during COVID, so there was a lot of restrictions, but she and I were there, and he had been moved from the hospital to the hospice because he didn't die quick enough in the hospital. But in that move, he arrived there with some pain and discomfort, and she told us all about how she tended to him and took care of him.

He had a [00:22:00] wound, and then gave him some medication, and he was sleeping comfortably, and he died while we were standing there talking to her I believe hearing us, sorry

I get choked up, hearing us telling her the stories of him and my mom- Mm ... and our, our, our wonderful family. And so knowing if she wasn't there, we may have been just sitting, "Okay, what do we do?" Mm-hmm. Because we didn't know what to do, but we wanted to be there. A lot of people, and you probably encounter this when they hear what I do, I hear a lot of stories.

Jill: Oh, yeah. 

Lori: And some of them are beautiful, right? Some of them are beautiful, and others are just traumatic and devastating what people went through. And so many times those, that, that difficult death that was traumatic could have been avoided and much more peaceful if only they had known simple tips and techniques and ways to be, right?

Mm. Ways to be with their person. That's my little story of somebody who was there that I'll never forget, that helped us [00:23:00] through that. I don't really know what it would've been like if she wasn't, but I'm just, I picture that it wouldn't have been the same. We got to talk about him, and he heard us. 

Jill: And- That's so beautiful.

Lori: Yeah. And I'm not a hospice nurse, right? We're not hospice, but there's so much, there's so much needed at that time. A lot of it because we don't talk about it, and a lot of it because it's just extremely profound time in people's lives. What more support can we provide? That's a big part of my why, is to serve as many families as I can to get through that time.

Jill: One of the things that I was thinking about when you were talking about the death that happened that was not how anybody wanted it, right? That there was some traumatic experiences. There was some really intense things, and it actually made me think of two things. Within the death doula community, there's that conversation of the good death, right?

That we're all- Mm-hmm ... shooting for the good death, and that there's the [00:24:00] doulas that are like, "All right, y'all, come on, we're not gonna get a good death for everybody. It's just not possible. We should really stop even pushing for that good death." Yeah. 'Cause then again, sometimes people feel like it's a failure if they don't get the good death.

Right. There's that part of the conversation. But what I started to think about specifically while you were talking about it is we can try for the good death, right? Mm-hmm. We can try to set everything up so that they could have the best death possible. But maybe our role is just to be that rock, that comfort, that person that is not falling apart in the midst of things not going well, in the midst of everything being

It's just, it's not good, right? Yeah. There's definitely experiences where it is traumatic. It's overwhelming. It's loud. It's noisy. It doesn't smell good. It just can be so- Yeah ... overwhelming. So to have a person there- That is just holding that space for everybody to freak out if they need to freak out, to cry if they need to [00:25:00] cry, to shut down if they need to shut down.

But to be that person that's holding steady throughout all of that, that is, I think, almost more important than trying to make sure that everything happens by the plan, right? We wrote out the plan. We have to make the plan happen. I think it's more important to be like, "It's not going according to plan, but you know what?

We're gonna get through this, and we're gonna get through it together, and I'm gonna help you get through this." So I think you probably were perfect in that moment, exactly what was needed For the experience that it's not ideal, but it is what it is, and you were there to help them get through it so they weren't alone.

Lori: Yeah. Exactly. I can't control the outcome in any way. We can do a lot of planning and a lot of determining what people's wishes are, what they want. My mother wanted to go home. So did my dad. And neither one of them were able to, not because of any reason other than the physical limitations of being [00:26:00] able to leave where they were because of their disease process, not because we did anything wrong.

But even if the whole plan was about that, we still can't control it. But it's okay to talk about it. It's okay to shoot for it. It's just ... Maybe this is a bad analogy, but we plan for vacation. We just went to, recently we went to Germany and Austria. I would never get on a plane and just land, right? I had accommodations, I had some directions, and we had dates, but things don't always go according to plan because maybe the rental car breaks down or it rains, so that whole day is a washout.

The hope was, and our plan was, to do X, Y, and Z, and to go here and there, and to experience it the way we wanted to experience it, but it just doesn't always work out that way, and it's the same thing with end of life. I do believe wholeheartedly that it's important to plan it and talk about what to expect, right?

Talk about what we may see as somebody is declining in those final weeks, days, and hours. But they may not happen. And in some cases, [00:27:00] there's not even comfort or what seems like comfort because we are picturing it like it is in the movies, where the person is laying there, whether they're awake or asleep, and it's just they drift off like we all want to.

And that is how my dad died. Very last moments is he was comfortable and he was sleeping and his, not his whole family, but his daughters were there and he just drifted off. Lovely. And I think we all want that, right? People often say, "Oh, I just hope I die in my sleep." And I'm like, "Be careful what you hope for because that's gonna be hard on your family if it's sudden."

Right. But there's only so much that we have control over the outcome, but without any plan, then it's really chaotic, right? It can be without any plan, without any knowledge of what to expect or what the person wants in their final moments. So yeah, I know in that situation as a doula, I was like, "Oh man, this isn't how it was supposed to go."

And I realized I don't get to control that. I have no control over what actually happens other than [00:28:00] how I respond in the moment. And you're right. That steady presence is so important. If everyone else is chaotic- And their emotions are all over the place. If mine is steady, right, and that helps. That gives them a feeling of some calm and comfort.

That's the hope, right? 

Jill: That is the hope. I know for me, when I show up with my clients, I just want them to feel calmer and more at peace with what's happening, and if we can do that for people, then that's always my goal. And going back to dementia, because I feel like there's more and more people being diagnosed with it- For whatever that reason is, whether they're just getting better at diagnosing it.

My grandma used to just say people were senile. Maybe that was just their way of saying, "They actually have dementia. We just don't know what it is, so they're senile." Yeah. But either way, whether it's because you're a [00:29:00] professional death doula or you're just a person, we're probably all gonna have to deal with a loved one that's gonna end up with some form of dementia.

And there's so many different kinds, and they present so differently. I know somebody right now whose family member has it, and they're violent. At this point, they have no idea what's going on. But even the facility that they live in is, "We can't handle him. We need to put him somewhere else because he's hurting himself, he's hurting other people, he's hurting our staff."

Right? Mm-hmm. That's something that people don't think of when they think of dementia. We just think of the cute little old person that just doesn't remember things, and it's like, this guy's not even that old, right? Like, there's so much now that's coming out about dementia, and the work that you do, I don't know, what do you do with clients around dementia?

How do we even work with people with dementia, helping them prepare when the chance is that by the [00:30:00] time they need this information, they may not remember at all even the conversations that we had? 

Lori: I never like to compare things like diseases, but it is probably one of the most challenging, and it's really hard for families to navigate through.

I think for me, it's a lot about education and training and support around helping them to, both the individual living with dementia and the family or their care partners, their whole care circle, to find ways to connect and relate to that person because they're changing, right? Cognitively, when people are living with dementia, depending on the type, it's not all about memory, right?

Cognitive changes. Families are stepping into this without a map, right? There's no training. There's no support that they know of. But there are resources, there is support, and it takes [00:31:00] time and effort, because how do you care for somebody who is having aggressive outbursts or doesn't wanna shower, right?

Or doesn't even remember that you're their daughter- Mm-hmm ... and they think you're their sister. And it's heartbreaking, it really is. So how do you, as the care partner, if it's your parents or your spouse, how do you cope with that? So they need support, right? And they also need training on how to understand that, well, Mom's living in 1950.

You look like her sister, so that's where she is and that's where you are. And how does that feel, right? So my approach with families is all of that, whether it's me that's helping them learn or I give them resources of other professionals who can help them learn how to care for their loved one. There's online resources.

I don't know if you've ever heard of Teepa Snow, but a [00:32:00] wonderful educator, dementia expert, who provides a lot of training, and there's a lot of free videos. There's other, I like to call them dignity builders or stigma reducers people just don't know about. There's a lot that as doulas we can do. I actually am a dementia doula.

I took a specialized training for specifically dementia and end of life, because it's a little bit different at end of life than other diseases, primarily because of the cognitive changes. They can't speak for themselves and say if they're in pain. But even earlier on, it's a long road. So I am also a community lead.

It's a volunteer gig that I have on the side with an organization called Dementia Friendly PA, which is part of Dementia Friendly USA or Dementia Friendly America, in my community in Montgomery County, Pennsylvania, where we work to reduce stigma and spread awareness and education in the community to try to help people earlier on, earlier on so that they can live their life with [00:33:00] some quality even living with dementia.

There are years that people can still have a fulfilling life, and so can their family, but not as easy if it's just ignored and there's silence around it. Because the stigma is real, and it's really hard to even talk about it. I know a beautiful family, and the wife is showing cognitive changes, and the husband, he's not telling anyone- Mm

'cause he doesn't want to embarrass her. 

Jill: Yeah. 

Lori: So the stigma lives in silence also, and in assumptions about what it's like to be living with- dementia or Alzheimer's, whichever type of dementia. And so I wanna help change the narrative around that. Let's start talking about this, just like we talked about end-of-life topics, right?

This is a terminal illness, like cancer and other types of things we die from. It may take longer, but it's serious, and [00:34:00] if we ignore it, it's just going to make the road harder. And I don't blame families for not talking about it. It's the rest of us that need to change how we engage with talking about it.

Someone told me recently how sad she felt because her friend's husband has Alzheimer's, and quietly, like sheepishly, with maybe a touch of guilt I think I detected, that, "We don't really invite them anymore because- Mm ... it's so sad, and they probably don't wanna come. It's hard for her to go out with her husband," and we talked a little bit about that, and those are assumptions.

The stigma lives in assumptions too. These are your friends. We have to find a new way to relate to them because the wife needs support. She needs you as her friend to understand that what she's going through is hard, but that she also needs people, and her husband also needs some normalcy to be around people.

But you have to learn to engage differently with him because he's different, so we have to change. It's so complicated. There's [00:35:00] so many layers. The grief, the anticipatory grief, I experienced that with my mom. No cognitive changes, she was fully sharp until the end, but just knowing she was sick For two years, thinking, "Gosh, what if she dies?"

We didn't talk about it, of course. I wish we did. But anticipatory grief with dementia is huge because every time there's a change in how and what they can do or what they remember, there's another loss of the person that you knew. Now, they're still there, I believe that. But because they're different and they're changing, it's like a, it's a loss.

There's so many layers. And I think that as doulas, there's a big part we can play in this because there is so little support. Supporting the wife whose husband has Alzheimer's, because who's she talking to? Who's helping her? And maybe she has a good support system, but do they know what to say and how to support her?

We have that training in general. [00:36:00] And there's so much out there, too, for us. Like I said, I'm a dementia doula. But there's other trainings as well. There's even locally to us. I know you know of a couple of them that I know as well, that provides education for families, support that is really very needed.

It doesn't always come from the doctors. They don't even always know the resources that's out there- Yeah ... for people to help them along. The diagnosis is important. We have to know. It's a good idea to find out what type of dementia. Yeah. But beyond that, doctors are not always the right source for the ongoing support families need.

Jill: And that's, I feel like, a lot of the work as doulas is helping to find resources. At this point I have spreadsheet after spreadsheet. I have a new one on VCED, right? Yes. So I'm starting my new VCED spreadsheet where it's all the hospices that I'm calling, all of the paid caregivers that I'm calling.

Mm-hmm. Where they're located, who they service. Are they open to VCED or are they [00:37:00] on the fence about it? So that this way, if a family says something like dementia, we can help find the right resources. 'Cause I think that's part of it, is- You can go to the internet and Google, but it's so overwhelming. Yeah.

There's so much now that trying to filter through it and figure out what's good, what's not good, especially if you're starting from nothing, where at least for doulas, I wouldn't ever say I'm a dementia expert, but I do have multiple people that I've worked with that have dementia. I actually went to Penn's Memory Center.

So they did a whole day seminar. I went with them, with my clients, and I learned a lot. And I know of Teepa Snow, I know of the GEMs model. I'm not the expert in it, but at least I can go and I can look, and I can filter through the information- Yeah ... and send them the things that are helpful, and connect them with the right companies that could be helpful.

Because, yeah, if you want paid caregivers, which [00:38:00] honestly, if you have a loved one that has dementia, you're probably at some point gonna need paid caregivers. They're not gonna be able to be alone. Mm-hmm. And not every company is gonna be the right company for you. Right. Because some are gonna specialize in dementia, some are not, and even the ones that do, they will still need to find the right caregiver.

Right. So that's part of what we do, is help filter the information so that they get the things that are helpful, and they can just ignore the rest of the noise, 'cause there's a whole lot of noise out there right now. 

Lori: So much noise, absolutely. Even support groups, for example. We started a memory cafe as part of Dementia Friendly.

Oh. 

Jill: Like death cafe- Yeah ... but for dementia? 

Lori: A memory cafe is different than a death cafe. It's ... I have a little bit of problem with the fact that the word memory is included, because that's, like, stereotypical for dementia, and it's not always- Yeah ... about memory. But this is something that there's a lot around the country, and it's more of a social hour for the care partner, whether it's a [00:39:00] spouse or a family Or paid care partner, caregiver, to come with the person living with dementia to a place, we have it at a library, that's safe and friendly, dementia friendly, right?

Where the person, like again, example, a wife, doesn't have to worry about if the people she's around think her husband is a little off or something. It's hard to go out in the community living with dementia. People don't know how to engage. Going to a restaurant can be hard, right? Dementia Friendly has these little cards that say, uh, something to the effect of, "The person I'm with has dementia, so please be patient," or something like that.

You show the server, hey, because there's just things that happen out in public that can be hard because of the stigma, right? Yeah. Because of the stigma and people assumptions. So the Memory Cafe is a place for them to come once a month. We're just getting started, but we do simple activities like crafts, like conversation.

Maybe we'll have a [00:40:00] musician come sometime or... It's just a social hour. Mm-hmm. But what happened there was one of the wives was telling me how she really would love a support group, but when she goes to them, she feels out of place because her husband is very early stages. Mm-hmm. So they're aware of the disease, and they're taking steps to live his life with the best quality, but she doesn't relate to the people talking about the more severe situations that they're in.

She almost feels like she couldn't say anything, 'cause that's not what she's, needs support with right now. She felt, "I have it really good," because they're dealing with later stages, and toileting, and other behaviors that s- are sometimes more challenging. And so through my research and all of my resources, I was able to find this online.

It's in Georgia, but everybody's welcome, and this was important to her. Very specific, early stage support group. A big part of what I do and what we do with Dementia Friendly [00:41:00] is provide resources- Mm-hmm ... or look for them if we don't know about them yet.

There's even a group called Dementia Minds, and I love this organization because it's actually support groups for the person with the diagnosis. Wow. So they get to be on a Zoom with other people, 'cause we don't really know what the lived experience is of having dementia, and there's not a lot of research or information about that.

So here are the people who are living with it, and I suppose that has to be at certain stages, but again, if it's earlier on and you know that this is your diagnosis and you're feeling it still. At a certain point, people are not as aware that their dementia is dementia. Peer support is so important, right?

That's why caregiving groups are helpful, because in some way more than someone else knows what I'm living through. And so there's a resource that many people... Now, that wouldn't be for everyone. Not everybody would wanna go to a support group to talk to other people who are diagnosed with dementia. But if you [00:42:00] do, do you even know it's there?

These things can make a difference. It's a hard road, so whatever can help to provide a quality of life for that person and their family and their loved ones, because I think that- Part of the stigma is also that the stories that we hear are painful, and they're painful for a reason. Hearing that person you were referring to who's having violent tendencies, those are scary.

Th- they're painful for a very good reason, 'cause that is painful. When it's always framed as a tragedy, as loss, or as fear, "Oh my God, you have dementia," and then people turn away. How? Or now your family has a diagnosis, and it's just a death sentence. Now, earlier I said it is a terminal illness, but what about the time between now and then?

Let's start telling more sh- fuller human stories, right? Ones that include connection and identity and meaning, so we can change the narrative around how all of us think about it. It's not gonna be [00:43:00] easy. 

Jill: No. It is not. 

Lori: Something else with stigma, it's very embedded into our culture, and you said earlier that more and more people are being diagnosed 'cause we're living longer, because we're diagnosing it earlier.

Even if we don't personally have someone in our family, we have a friend. My very best friend went through Alzheimer's with her dad, and because of what I do, I know I was able to help support her through that emotionally, right? It was long distance, but ... So I tell people, "If you're not dealing with it personally, you are, because you know someone else, and they need you."

Mm-hmm. With grief, right, we need each other. We need each other to get through grief, and this is anticipatory grief. It's loss, and so we all need to know a little bit more about it so we can support each other. 

Jill: I agree, and we're coming up on the end of our time, and we actually talked for a half hour before this.

This was lovely. Yeah. Can you tell us where people can find you, website? I'll put links in the show notes- Yeah ... but where do you want people to find [00:44:00] you? 

Lori: Sure. My website is compassionatecrossingsdoula.com. My number's on there, so people can call or email, and I always tell people, "Let's just talk," even if I can provide resources, right?

Even if I can tell them about that organization, Dementia Minds, and that helps, or whatever, to talk and just to see how I can support them. Thank you. I'm also 

Jill: on 

Lori: Instagram and Facebook and LinkedIn, so my social media links are also on my website. 

Jill: Wonderful. I will put the link to the website in the show notes.

Thank you so much, Lori. This was such a pleasure getting to know you a little bit. 

Lori: So nice to finally meet you after I've been following you and your podcast, and yeah, lovely to spend time with you. Thank you. 

Jill: If you've been listening to my podcast for a while, and you hear me and my guests talk over and over about how important it is to create a plan for the end of life and to have the conversations with your loved ones about what's important to you, and you're thinking, "Okay, maybe it's time.

Maybe I should actually sit down and figure this out instead of [00:45:00] just hoping it all works out later," I get it. These conversations can feel overwhelming or scary or just like something you'll deal with another day, but you don't have to do it alone. If you want help creating an end of life care plan for yourself or for someone you love, maybe it's your aging parents, a spouse, whoever it is in your life, you can book a complimentary 30-minute call with me, and we'll just talk.

We'll get clear on what's going on for you and what the next right steps might be. There's no pressure, just support. The link's in the show notes whenever you're ready. And if this episode made you think of someone, a sibling, a friend, or another caregiver, feel free to share it with them. Sometimes these conversations are easier to start when someone else opens the door first.

Thank you for being here. The fact that you're even willing to listen to this kind of conversation means a lot.