Life with Lewy Body Dementia with Tonya Hersha

In this episode, the guest shares her journey of living with Lewy body dementia, exploring how grief, acceptance, and conscious planning shape her approach to life and death. She reflects on the challenges of diagnosis, the impact on her independence, and the ways she finds healing while preparing her legacy for her family.

Growing up in Texas, she experienced loss early when her mother passed away right after high school, which eventually led her to move across the country before settling in Indiana. With a background in mental health and years as an EMT, she recognized the early signs of her condition and understood what the future might hold. For her, grief was not about having the disease but mourning the life she had imagined for herself, including the cultural and familial roles she hoped to embrace.

Her symptoms began subtly, with coordination and balance issues that affected walking, stairs, and driving. Initial medical visits were dismissive, attributing her symptoms to menopause or depression, until she finally found a neurologist who listened. Physical and occupational therapy helped her maintain mobility at home, while support from a Facebook community of women facing similar diagnoses provided vital emotional connection and guidance.

Therapy played a critical role in helping her re-accept her diagnosis as symptoms changed her daily life, from losing the ability to drive to needing a shower chair. Her past experiences with loss informed her approach to end-of-life planning: she has prepared documents and arrangements to reduce stress for her family. She even planned a joyful, personalized living funeral. Through this, she embraces death with humor, love, and intentionality, seeking to create healing, connection, and a lasting legacy while living consciously to the fullest.

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Transcript

Tonya: [00:00:00] I had to laugh at my boyfriend when this first started happening, and I told him, I said, you know, this doesn't end well. This, this ends with me dying, like this is not gonna end well. And he goes, well, we all die. You just found a way to do it. 

JIll: Welcome back to Seeing Death Clearly, I'm your host. Jill McClennen, a death doula and end of life coach.

Here on my show, I have conversations with guests that explore the topics of death, dying, grief, and life itself. My goal is to create a space where you can challenge the ideas you might already have about these subjects. I want to encourage you to open your mind and consider perspectives beyond what you may currently believe to be true.

In this episode, my guest is Tanya Hersha, who shares her journey of living with Lewy body dementia and how she's choosing to face both life and death with honesty, humor, and grace. She talks about the challenges of getting a diagnosis. From being dismissed by doctors to finally finding answers and how the disease has reshaped her [00:01:00] independence, her routines, and her sense of identity, we explore how therapy community and conscious planning support her in preparing for the end of her life, while still finding moments of joy from practical tools like end of life documents to imagining a living funeral filled with loved ones.

Her story is one of resilience, connection, and living with intention. Thank you for joining us for this conversation. Welcome Tanya to the podcast. Thank you for coming on today. I know we connected on Facebook when I had put out a post looking for guests. Tanya, start us off. Tell us a little bit about who you are.

If you wanna share where you came from, grew up, anything like that, you're welcome to. 

Tonya: Well, I actually am an Indianapolis right now. I grew up in Texas. And then. My mom passed away right after I graduated high school. I moved to Seattle and then I ended up in Missouri and then I ended up in Indiana. I recently was diagnosed with Lewy body dementia and so been faced with a lot in the last two and a [00:02:00] half, three years.

JIll: Yeah, that is a lot to. Work with and deal with, not just the symptoms, but also emotionally processing. You know, what potentially will be coming even if you feel okay right now. 

Tonya: Yeah, and I, my background is in mental health. I was an EMT for several years and then I worked in mental health. I had my education and background in psychology, so I knew early on those little symptoms and what it was right.

Was way more aware and accepting of where this was gonna head and what the answer was gonna be from the doctors than some other people, because I was trained to look for it in my clients. 

JIll: And do you mind sharing how old you are? Or at least give us a range of how old you are? I recently turned 50. Oh wow.

Tonya: I have one daughter, she's 24, she'll be 25 in July. In my mind, still a very young child. She's working on her master slash PhD right now, so I'm [00:03:00] super proud of that. But she has so much life that she's gonna have that I'm gonna miss out on. That's a real tough realization for me and for her. Yeah, there's 

JIll: a lot of grief that comes with that, you know, loss of.

What we expect when we have children. We have those thoughts. I get to see them graduate high school, maybe get married, maybe have children, and do all these things. So that's a lot of grief to acknowledge that you may not be aware of some of those things. For her, 

Tonya: I've had to learn that it's a lot about grieving the life I thought I would have.

It's not grieving that I have this disease, it's grieving the life I thought I was gonna have. And for her, the life she thought she was gonna have with her mom and mom be grandmother to, I was gonna actually be babushka. That's for us a cultural thing. Grieving that life you thought you were gonna have is the tough part.

JIll: Are you Ukrainian, Polish, somewhere in that right? Polish. Polish, yeah. My grandmother was Ukrainian and the thing she would wear on her head, she would call it [00:04:00] a babushka, I think. Mm-hmm. Because grandmas wear it, so I know that word. I love that word. Yeah, it looks so cute. When you first started to notice symptoms, was it little things that you were just like, something's not right, or did somebody else maybe point things out?

What was that experience like for you? 

Tonya: For me, the big one that I noticed was I started missing steps. I started missing the stairs. I would stand at the bottom of the stairs and kind of shuffle. And then if there was like a small lip in the road or a small little step from the garage into the house, I would catch it and tumble and fall.

And I started having a lot of coordination issues and balance issues. And then the other one that got me was I was driving. And three days in a row, I did not have a wreck. I was making a left hand turn and I completely missed the car outta the right side of my vision. To me, there was nothing there, and I've always been an excellent driver.

I was an EMT for [00:05:00] 15 years, so my driving abilities were large and those two things combined, I was like, oh, this isn't right. And I started kind of just tracking things a little bit more of those, what the heck moments? What the heck was that? And I started. Cataloging them the best that I could. It entered in my mind, okay, I am almost 50.

This could be menopause, this could be some brain fog with menopause. But then more things started happening. I had more falls, and then I started a new job and I couldn't follow the computer system. 

JIll: Hmm. 

Tonya: And I used to be a super user on all computer systems. I was on it. I just knew we would get a new computer system at the hospital and I would become a trainer because I was the one that picked it up and I could not get their computer system at this new job, even though it was what I had used before.

And I'm like, something is wrong with my processing skills. [00:06:00] And that's when I started looking for an answer and it took three years. To get an answer. Oh, 

JIll: wow. Yeah. Was it just like you were going to doctors and they weren't taking it seriously, or were they kind of looking in the wrong directions? What was that experience?

Tonya: The first neurologist I went to told me that I had conversion disorder due to my inability to handle menopause. Totally negated all education that I had. Any training that I had completely ignored me, didn't do a full neuro exam, just said I was menopausal. And I said, no, I've already been to the gynecologist.

They've already tested me. This is not menopausal. Oh, well you had a, a suicide attempt back in 2005, so you know, you're probably just depressed. Depressed. No, I work in mental health. I know these signs. This is not what's going on. I am not depressed. I see a psychologist. They just, they didn't listen to me.

They put me in this bubble. And I was so angry when he said conversion disorder because I looked at him and said, [00:07:00] you know, that's not in the DSM five anymore. And he asked me how I knew that. I just told you I worked in mental health. He didn't listen. So in the DSM five, it's labeled as functional neurological disorder.

That's a catchall term doctors use in neurology if they don't have some sort of concrete. I see a brain tumor. Your MRI is abnormal. It kind of leads it to more of a psychological disorder. Mm-hmm. And they just didn't listen to me. I went to Cleveland Clinic, I went through a couple neuros there. I had one that finally listened to me, but then I lost my job and I lost my insurance.

When I got Medicaid, I couldn't go back 'cause Indiana Medicaid. I can only see an Indiana doctor. 

JIll: Hmm. 

Tonya: And it took me almost a year to get in to see somebody again. The clinician associated trauma was huge, and actually my journey is shorter than most women have. Mm-hmm. Most women, it's anywhere between [00:08:00] five to 10 years and they have to be completely incapacitated before the doctors will listen to them.

It's that assumption that women are hysterical and we're just moody and with just menopause. So a lot of women are not. Diagnosed early on with Lewy body where they could have some of the same treatments that male counterparts have and some medications. There's some medications that help and they're just kind of hung out to dry.

JIll: That is unfortunate that women are not taken seriously in any area of life. Right, exactly. I Exactly. We're getting better moving in the right direction. It's debatable now whether we're sliding back a little bit. It does seem like, especially in healthcare. Women, especially women of color, they're just not taken seriously.

You did find a doctor that was able to properly diagnose you and were they able to help you with treatments that have been able to help with some of [00:09:00] your symptoms? Mm-hmm. 

Tonya: They actually, one of the first and most beneficial things they did for me was, got me physical therapy and occupational therapy in home, so I don't have to drive because I.

I was getting to the point where I wasn't able to drive anymore as an ex EMT, it was not safe for me to be driving. I felt I would drive within a mile of the house and that was about it. That was all the further I would let myself venture out, and so them getting me pt, OT in home was a huge change for me to be able to keep my mobility and keep going and doing things.

Dig mean is the med that they usually put people on for cognition. But I won't find out until next week whether or not I can go on that. I go back and see my neuro then. But once I found a doctor that was willing to listen to me, it changed a lot of things and it gave me some hope. I didn't feel like I was going crazy because they make you question yourself and the gaslight you to think, [00:10:00] is this not what's going on?

I'm pretty sure this is what's going on without a Facebook support group and specifically. A female subgroup. I don't know where I would be. The group has supported me and the girls in my smaller group. It's just, it's meant a lot to me. They do a Zoom three days a week, so everybody has a different timeframe that they can come.

They do a Zoom three different days a week, and on Saturdays they do a Zoom just for caregivers as well. So those that are caregivers can have a place to vent and share what's going on in their life. So without those groups, I don't know where I'd be. 

JIll: That is the positive side of Facebook. There's some negative sides to social media for sure.

Yeah. But it really is a great way to. Find people going through similar situations and be able to connect and learn from each other. And if nothing else, have somebody that you can vent to that isn't necessarily gonna get to the point where it's like, oh, I don't wanna hear this anymore. [00:11:00] Sometimes family and friends, I don't think they mean to get to that point, but when they're not going through it themselves, it can be overwhelming to hear about it a lot.

And you need somebody you could talk to. 

Tonya: Yeah, because that's been a thing with my daughters. It seems to be like the only thing we talk about is my disease. I get that from her standpoint. You know, her life's moving forward and she's doing things, so I have to be mindful of how much I talk about myself and the disease and being mindful of how it's impacting them.

I always say that death, you only get one shot at it, and so everybody in this process is a first timer. None of us know what to do. For me, my only thing is I'm the one who completes the journey alone. I'll be the one completing the journey. We have two very different paths because they're dealing with me being alive and grieving me after I'm gone.

They're gonna have an entire life. They're gonna [00:12:00] continue on. My boyfriend might find somebody else. My daughter's gonna continue on. My journey stops. I think that's what people don't really see is that I wanna be there for them, but they also need to understand that my journey stops. Y'all are gonna have each other after I'm gone.

And I know how hard it is for somebody to watch me be sick, but also I'm alone at the end. So it's so weird to be on a similar journey, but completely different journeys at the same time. 

JIll: Yeah, that's a really good point that. All three of you. 'cause you said it's your boyfriend and your daughter, and yeah, you're all on the same journey, but having very different experiences, you're gonna process things differently.

As things change, it's gonna be different for all of you. 

Tonya: Yeah. My boyfriend is on the spectrum and so he experiences things differently and doesn't process emotions the way that. People would consider typical. I have to be mindful of the way he's [00:13:00] processing things, but he's also working full-time and taking care of me.

My daughter lives 45 minutes away, so she sees me once every three months. Her experience is, yeah, mom, I talk to you every day, but I don't see you and I change drastically in three months. Sometimes when I see her, she's freaked out 'cause. I'm way worse than I was and I have to be mindful of she's gonna hurt and she's gonna be upset and I need to let her be upset.

So I have, I have to be mindful for everybody else, but sometimes I'm kind of left alone and that's where the support group comes in handy. 

JIll: How about with your doctors? Is there any type of in-person support therapist or social workers or somebody that you could. Maybe talk with and find some support that is not your family.

Tonya: So that's where it's a little weird because there's plenty of support groups for Alzheimer's, but there's none for Lewy body or other forms of dementia. And I have come to realize that [00:14:00] a lot of people don't realize that just 'cause I say I have dementia doesn't mean I have the 80-year-old in the nursing home, can't remember anybody dementia, that if I live that long, that will happen to me eventually.

But in the beginning it's very much about processing. I just can't process things the same. Like I can't process driving, I can't process cooking sometimes those types of things. Mm-hmm. My, my, my speech sometimes gets kind of walky, but there's all these groups, support groups, walks, and fundraisers for one type of dementia.

'cause that's the popular one. That's the one most people are diagnosed with. I didn't realize there's Lewy body, vascular frontotemporal, or a mixture of dementias. I've tried to find local groups, but even Facebook groups, they're few and far between. There's a lot of caregiver groups, but there's not a lot of groups, especially for Lewy body, [00:15:00] and I think it's because a lot of people don't get diagnosed until they're way further down the path.

And a lot of us in that group were early on. Yeah. 

JIll: So I do wonder how many people are having some of these same symptoms, but they don't really realize what it is. Again, maybe just in their head they're like, oh, I don't know. Maybe I'm just really tired. I started a, a new job, or the kids had me running around more.

We write it off as, I'm just this, whatever. And there might be, you know, signs and symptoms, but it doesn't seem like it gets taken seriously often. Even when there are ones and you're like, maybe this isn't normal, this doesn't feel normal, doesn't mean anybody's really gonna listen though, either. 

Tonya: Yeah, either way.

I mean, it's so tough and in my support groups, there's several times when they'll mention, you know, my loved one doesn't want to refuses to gimme the keys, but the doctor says they can't drive anymore. There's a lot [00:16:00] of that and there's. A lot of not wanting to accept what's happening to them. I think I have found that the more you downplay your intelligence with doctors, the more they're gonna listen.

And that's what I had to do. I had to downplay every part of my intelligence in order to get them to listen to me. It's just sad that that's the point that we have to get to, even though we know what's going on. And acceptance was a big part of it for me. Because I knew the symptoms. Getting other people to see it was different, but I accepted it a lot sooner, I think, than other people do.

There was no getting around it. And I do have a psychologist. I see her once a week and I think without her, I don't even know if I would still be living at this point. She's helped me so much, but she sees me pro bono, amazing woman. I saw her at the very beginning of this. I thought, okay, I have extensive [00:17:00] trauma.

Maybe I need to get back into seeing a therapist again. And I started seeing her and then my insurance changed and I wasn't gonna be able to see her anymore. And she said, Nope. I see one or two clients pro bono at a time. I don't have any right now. You have far too much trauma. You need somebody right now.

She's seen me since I don't know where I would be without her. She's helped me accept this and helped me see this. There are still times I go to many therapy sessions and I'm like, maybe this isn't what I have. Maybe if we get me on the right med, I'll be fine. She has to put me in check and be like, no, this is what's going on.

You have to accept this. This is what's happening to you, and I have to. Re accept being sick. Mm-hmm. And I think that's the hard part too, is that those of us faced with any kind of terminal illness, you have to continuously accept it. 

JIll: Hmm. 

Tonya: As much as you think, okay, I know this is what I [00:18:00] have, I've accepted this, this is what's gonna happen to me.

You're going along and then you lose a bit of independence. I remember the first time I got a shower chair because I wasn't strong enough to stand in the shower anymore. I cried for two days because I had to have a shower chair. It was a part of my independence that was gone, and that was one of those times where as much as I thought I had accepted what was coming, something was thrown at me and I, I had to re-accept the whole diagnosis all over again.

And that stinks. 

JIll: Yeah. That is so difficult to. Have those little losses and then like you said, talk yourself through it and be like, no, this is really what's happening. You know, I can't be in denial. And a lot of people, it is easier to be in denial than to face the things that scare us. It doesn't keep us safe though, you know?

It doesn't help us in any way. And if anything, like you mentioned about not being safe to drive anymore, it's not safe for other people. [00:19:00] On the road, if you're realizing that you don't see a car, like it's just not there, you're, you're, you're just not registering it. So it's not safe for other people. And that's so compassionate and kind of you to think of other people in that way, Eva, when it's facing your own fear of maybe there's something really wrong.

I think a lot of people, it's very selfish. They just are like, Nope, I'm fine. Everything's fine. I'm gonna keep driving. Even if the doctors say, take away the keys, I'm gonna keep driving. I try not to judge. They're just human. We're all human. We're all afraid of losing parts of ourselves, parts of our identity.

But it's really difficult sometimes to witness things like that and be like, you do realize that you're putting everybody else's life in danger though, too, right? Like it's not just about you. There's other people involved. 

Tonya: Definitely we used to off-road quite a bit, Jeeps and stuff like that. You always go home.

Nothing broke and [00:20:00] nobody broke, and that's always the goal. And I worked far too many wrecks that people should not have been driving and they were driving and they were past their cognitive level to be driving. I'm not even talking about DUIs, just cognitively not there. I didn't wanna be that person and have somebody work a wreck where I shouldn't have been out on the road.

JIll: When we face things like that, it makes us more aware. Thankfully, I've never been an EMT. I've never been like a nurse or anything like that, but I have been in hospitals and volunteered as a death doula. I've seen some of the aftermath of what happens. I worked with a young man that was young in his thirties.

He was dying in his thirties from alcohol abuse, and I know so many of us when we're young, it's like, oh, whatever. I'm young. I could drink as much as I want to until you can't stop. And now it becomes a problem and you're dying way younger than you need to. The more that I see [00:21:00] these things, yes, it makes me uncomfortable.

Even if I'm really tired, I'm like, I don't think I should drive if I'm really tired, because I know that it only takes that one second where you fall asleep. And swerve and hit a car and kill somebody. That would be terrible. Yes, I am much more aware of things like that and more willing to say, maybe I should not do these things.

But sometimes you gotta face the worst to be able to really say that. 

Tonya: Yeah, and I think that's part of why I face death the way that I do now. I grew up with a sick mom. She passed away when I was 19. I saw death. I went through it with her. The aftermath of funeral and the paperwork, sorting through stuff.

I did all that. I don't want any of that for my kid. I've tried to take care of as much stuff as I can prior. The awareness I have from when I was younger has led me to this point now where I'm like, okay, death is a part of life. This is what's gonna happen. [00:22:00] I want the least amount of stress on my family as possible.

JIll: I can tell that you're. Better with death than other people. You are the first person that has ever reached out to me when I've been like, Hey, I wanna have people on my podcast. That is like, I'm actually facing my own death and I wanna come on and talk to you about it. That is very unusual. Most people are not willing to talk about it with me.

They'll talk about it if it was their loved one afterwards. I tend to talk to a lot of people that maybe have a parent or a spouse or a child, somebody that's died or they work in the industry. Most of the time it's not somebody that's like, no, I am actively facing my own death and I want to talk to you about it.

So I knew you were gonna be a little special. There was something a little unusual, but I didn't know that about your mother. And in some ways that makes a lot of sense. So you were 19 when she died? 

Tonya: Yeah, she died Christmas day of 93. 

JIll: Oh my. 

Tonya: She had a artificial aortic [00:23:00] valve and that was put in in 1980.

They told her she would live seven years max, and she lived 13. We were opening presents and she turned to my dad and said, I don't feel good. And then that was it. I think the big reason why I have so many things in place too is because we were in a different town, and this is 93, so this is prior to the internet, very early ages of faxes and things like that.

There was no way to get, she had a DNR on file at our home hospital. Mm-hmm. And we were two counties over. And we had to keep her on life support for two days until they could receive the DNR from the other hospital. I absolutely don't want that for my family, so I made sure that every DNR situation that I could cover with Indiana the way that they're goofy system works and have my.

I also have a separate sheet of paper from the state that stays here at the house, which is an OUTTA hospital. DNRI am A [00:24:00] DNR and I recently was in the hospital with pneumonia for five days. Well, when I had the, the last time. Yeah. But they, I was a DNR when I was in the hospital. 'cause when you come through the er they ask you, and I'm like, I already have it on file here.

I'm A DNR. Oh my god. You're 50. I had so many people try to talk me out of it. Finally, I told the third doctor, this is not your body, so it does not get to be your choice. I know what I'm facing. I know what age I am. I don't wanna be kept alive knowing what's coming for me. Why put my family through that?

Well, you're not thinking of your family. That one really pissed me off 'cause I told 'em, I said, I absolutely am thinking of my family. What's why I'm doing this? My family knows. My family is okay with that. Don't attempt to assume how my family feels about this, but I thought that was really rude to try to talk me out of my choice of what I wanted for myself just because of my age and you didn't agree with it.[00:25:00] 

You don't get a say, I complete the journey alone, therefore I get to make the decision. 

JIll: Yeah. I've been in the hospitals when they've been discussing somebody's request for A DNR and yeah, the age thing definitely. Where if they're younger, like they call in the ethics board and go through this whole thing because there's this, I don't know if they feel like maybe when you're young you might change your mind, but with the diagnosis you have.

It's not like you're ever gonna get better. Less medical advancements get a lot better in the next year or two. Any type of dementia, there's no getting better from it. There's managing it. Hopefully there will be better ways to manage it, but it's not like there's a cure for it. It's not like they'll one day be like, we figured it out.

We can totally correct it. So if you know what's coming, why would you not want to be a DNR? 

Tonya: No 

JIll: matter what age [00:26:00] you are. 

Tonya: Yeah. I was floored by how many of 'em were trying to talk me out of it. I couldn't believe that. That is kind of 

JIll: frustrating. 

Tonya: Yeah. 

JIll: And when you were younger, did you and your mother especially, did you talk about death and dying or, you know, did you, I mean, I'm assuming you knew that she had this, you said it was a aortic valve something?

Mm-hmm. Yeah, she 

Tonya: had an artificial aortic valve. All of us kids knew growing up that mom was a DNR. I was six when she had that surgery done, and I knew what A DNR was at six and what that meant. It was the reality of our family that you just didn't know when mom was gonna go because mom had a bad heart.

I remember being 14 and she had a heart attack. Ed and I brought her back with CPR. She was in the hospital for a few weeks after that, but. She was actually mad at him because he did CPR. She's like, I told you, just let me go. So death has always been very present in my life and I [00:27:00] didn't know death doula was a thing until about six years ago.

I met a woman here that runs a metaphysical shop and she was a death doula, and I'm like, oh really? I had a birth doula when I had my baby. I had her at home with a midwife. I knew how important that doula was to me. So then when I got sick, her and I had become friends and I told her, I want you to be my death doula.

If that's what you want, could you please be my death doula? And she is 

JIll: actually, I don't think I knew that you were working with a death doula. How's that experience been like? Because I've been talking to a lot of death doulas, especially recently. I've been wanting to talk to more, 'cause we all do things a little different.

So what's that experience been like for you on the other end of the death doula work than actually providing that service? 

Tonya: It's taken a lot of stress off of me. Because I'm the one that cares for everybody. I'm the one that takes care of everybody. I probably would've been a death doula if had not been for all this, 'cause I had started looking into schools and wanting to try it out.

JIll: Mm-hmm. So 

Tonya: I [00:28:00] probably would've been one. But for me, taking care of everybody is important. So after she helped me get my paperwork together, I already had my funeral paid for and taken care of. Well, not funeral, but cremation. 

JIll: Paid. 

Tonya: I want to make sure that my family is cared for those last days because I'm not gonna be able to do it.

And I don't wanna have to, I feel like I'm gonna worry about them, and I'm not gonna be able to pass peacefully if I'm worrying about did they drink, did they eat? You know, those. But that's just kind of where my mind went. And so this way she's gonna care for them. 

JIll: Yeah. 

Tonya: And I can focus on. As much as I'm probably gonna be out of it, my mind at least will be at peace that I can go when I need to go.

Maybe it can bring me some peace just knowing that she is there. And then another part of it was, I am Norris Pagan. That's my religion. I can't have a Viking funeral, but I am [00:29:00] gonna do the cremation. I have a service dog, so it's important to me that the service dog comes to the cremation location before my body and sniffs to, so she knows that I'm gone.

Yeah. There were certain things that I wanted in my cremation. There's a certain gown that I want and certain pagan things that I want done. Mm-hmm. And her running a metaphysical shop, she understood that. So I know that all of my wishes are gonna be. Considered. I don't want a funeral. I'm gonna have the cremation.

That's it. I don't want anything after that. I'm gonna have a living funeral prior to that. But when I'm gone, I'm gone. Just move forward with your life and don't be sad. They're gonna have their grieving time, but. I don't want a whole funeral home with sad people crying and walking by my casket. That's not me.

That's not who I am. I'm this weird, positive person, and that's just not what I want. So my death dilemma for me has been [00:30:00] mainly peace of mind and knowing that I have the opportunity now to just go in peace. That was important to me. I joke and say, and I make terminal fun. Because that's what I want people to do.

I want people to have fun. And I know that's counterintuitive to death, but I've lived my life. It hasn't been great, but I have my daughter, I mean, I have my boyfriend now and. I'm gonna end on a happy note to an extent 

JIll: because you said you're gonna do a living funeral, you know, do you have plans already?

What do you want that to look like? That could be really anything, right? That is up to your creative imagination. I want it to be a combo of every birthday party 

Tonya: I ever wanted. We weren't allowed birthday parties growing up, so I wanted this fun party, something representative of me. I wanna see everybody before I'm gone.

It's not a time to be sad. I'm sure we're gonna have moments of crying, but I'm gonna have a bounce house, karaoke and pinatas [00:31:00] filled with little bitty liquor, airline bottles. Mm-hmm. Stuff like that. And you know, 'cause it's gonna be adults, there'll be kids here too. So I'll have kids stuff too. But after the kids are gone, I wanna do kind of like the adult section too.

I am very pro green medicine. Mm-hmm. Yeah. That's fine. Mm-hmm. Okay. So I want a cannabis bar. Nice. I'm gonna have some edibles and for those that partake, they can partake. I'm gonna have a makeup station or like face painting, but it's gonna be done by drag queens. Oh gosh, I love it. I just wanna have fun.

I just wanna have this huge party and lots of food and I don't wanna cook at it, which everybody keeps asking me, are you gonna cook? No, I'm not cooking. I used to have a cafe, so that's why everybody was like, are you gonna, oh, nice. 

JIll: Yeah, no, 

Tonya: we're gonna order pizza, so I might do some barbecue, but you know, we're gonna do bonfire and stuff like that.

I just want everybody to come and have a good time and celebrate with me. We plan on doing a small thing. Towards the [00:32:00] end of the bonfire and maybe a couple of songs and stuff like that. And then that's it. 

JIll: Mm-hmm. 

Tonya: All my friends, they're like, of course you would have a party. This is so you. 

JIll: Mm-hmm. 

Tonya: And so that's what makes sense for me.

Funerals are gonna change a lot over the next, well, they're already changing, but I'd say definitely the next five to 10 years, you're gonna see a lot more people that have open bar at their funeral and stuff like that. 

JIll: They are starting to change already. I mean, why not add some flare to it? I've seen people outside of Philadelphia.

My cousin, when her father died, he was a huge Phillies fan. People in Philly take their sports super seriously, right? So he had everybody wear their Philly shirts. That was his request for at his funeral. Why do we have to dress up in all black, put on our suits? I got to a point where I jokingly was like, it's my funeral dress.

'cause the only time I wear it is at these funerals. Why do we have to [00:33:00] do it that way? We don't have to do it that way, we just do it that way. 'cause we don't know any different. But people are starting to do that and the living funerals, you know, having the funeral while you're still here to enjoy it and hear the things that they're all gonna say potentially at your funeral and you don't get to hear it.

So I love living funerals. I think they're amazing. I don't think personally we should even wait until we have a diagnosis. 'cause none of us know, right? Any of us could die tomorrow. So why wait? Do them now. Have your fun party with the bouncy house and the liquor filled pinatas and like do whatever it is you wanna do because we never know.

We only have now, that's the only moment we're guaranteed. 

Tonya: I had to laugh my boyfriend. When this first started happening, I told him, I said, you know, this doesn't end well. This, this ends with me dying, like this is not gonna end well. And he goes, well, we all die. You just found a way to do it. Yeah. I love [00:34:00] his support.

Like I couldn't have picked a better person to do this journey with than him because he's very straightforward and very logical about things. Like with my hallucinations, if I start to have an hallucination, I'll tell him I'm like. Hey, is there a skull in the wall? Because that's what I'm seeing. And he's like, really?

What does it look like? Does it got color to it? And they'll just start asking me questions. And that was something I wanted to make sure that I shared too, is that as caregivers, people with dementia, towards the end, there's three things that we always look at. For me, what is my temperature? Have I eaten and am I in pain?

And temperature, because we don't regulate our own temperature anymore. Dementia patients have a very difficult time 'cause the neuro pathways in the brain gets all kind of 

JIll: Oh, interesting. Uh, so if 

Tonya: it's really cold, it takes me a lot to get warm. And if it's warm, I can't cool off. I can't go one way or the other.

So [00:35:00] finding out whether or not their temperature is good is a key thing. You know, are they too cold or are they too hot food? Because I don't eat a lot. I forget to eat. And so we all get a little hangry at times. 

JIll: Yeah. So, 

Tonya: and sometimes it's with the food, for me, sweets, I only want sweets. And I didn't know that was a dimension thing too.

Especially with Lewy body, you want sweetss 'cause that's the only thing you can taste. Everything else to us tastes like metal. Or I'll take two bites and get completely nauseous and not be able to eat. So. Food is a big part for me. And then pain, there's a lot of pain with dementia and a lot of people don't realize that there's a lot of spasticity.

Spasticity of your anti-gravity muscles. I feel like my chest is being crushed a lot, but there's nothing wrong with me. There's nothing wrong with my lungs. Nothing wrong with my heart, but the muscles in my chest [00:36:00] are pulling me to the ground, especially when I'm standing. There's a lot of pain.

Associated with Lewy body. A lot of people, when you think of dementia, you think of just the brain. 

JIll: Yeah. 

Tonya: It's the pain. It's a lot of incontinence. It's a lot of mobility issues, walking issues, balance issues, coordination issues. It's everything Your brain does, all of those little mechanics that your brain just does automatically, they can't do that anymore.

Little pockets of dementia. Yeah. 

JIll: I didn't actually know that. I know. Enough about dementia to know that there's different kinds, that they all have different symptoms. It's not just memory loss, which is what most people think of, but I didn't know about the foods and about there being pain, but it makes sense.

I just didn't know all that. 

Tonya: I have an immense amount of pain, which is why I use cannabis a lot, because I don't wanna do pain pills until I absolutely have to. I'm [00:37:00] on gabapentin twice a day, but low dose. And pretty much that's it. The only way I can navigate my pain is using cannabis. Mm-hmm. It's the only thing I can do.

Otherwise, there's many days I probably wouldn't be able to get out of the recliner 'cause I couldn't move 'cause the pain was so bad. 

JIll: Oh no. I'm sorry to hear that. It's definitely a lot that you're dealing with mentally, emotionally, and physically. 

Tonya: Yeah. 

JIll: Well, we are coming up towards the end of our time. I really appreciate you coming on and sharing all of this with us.

I know this is emotional for you. How you feeling now? You feel okay? You really stressed 

Tonya: out or pretty? No, I'm good. My goal is to write a book. That's my goal. 

JIll: Yeah. 

Tonya: Write a book about this experience, because a lot of people write books about what it's like to die with cancer. It's told from the point of the person that's left behind.

Yeah. I wanna do a nitty gritty book. [00:38:00] About death and about the pain and about what it's like to have incontinence when you're 47 years old and now 50. Losing your independence, losing the ability to drive those moments where you're like, this is not fair, and you're angry about it. I really haven't been able to find that nitty gritty, but still fun book.

So that's my goal is to write a book before I lose too much of my brain. 

JIll: You definitely should do that. And you could always write, and then you could auto record too, right? If it's sometimes easier to like speak it and then sometimes it might be easier to type it. You could do a combination and give it to somebody else to put together in the book floor.

So yeah, I think you should do that. 

Tonya: That's what I've been doing is writing bits and pieces of it. I told my daughter, I said, if it ends up being after I'm gone, here's all my stuff. Go have somebody put it together. I think 

JIll: you should. It is helpful for people. Are experiencing it themselves or going through it with a loved one to [00:39:00] be able to read other people's stories.

I love to talk about death and dying and grief. It makes it easier for us to have the conversation with our loved ones, to hear other people talking about it. You coming on today and sharing your story with us. Who is gonna help people, because I know other people that are navigating this with loved ones, and so I'm sure it can help them.

'cause some people are not as comfortable talking about what they're experiencing. So as the caregiver, you might feel that you're not understanding because your person's just not capable of sharing it as easily. 'cause it's hard. It is hard to do. Yeah. Well when you have your party, I wanna see pictures.

Make sure you send me photos and videos 'cause I wanna see this party. It sounds like it's amazing. And really, Tanya, thank you so much. Sending you lots and lots of love. 'cause this is definitely difficult to navigate and like I said, most [00:40:00] people would not come on and share this with us and I appreciate that.

Tonya: I wanted to put a voice to death. I know that sounds weird to say, but I still have a voice. I'm still here. 

JIll: And this is legacy work, right? You're leaving this behind for everybody else, for your family. I'm sure at some point, maybe not now, but at some point your daughter will wanna listen to this and will want to see a video of it to hear you and.

Know what it is that you're going through. So this is part of your legacy that you're leaving behind. Yeah. And if anybody wants to reach out to you, wants to find you, wants to hear about your book, when it does come out, what would be the best way for people to find you? 

Tonya: So a couple different ways. One is I'm in the group on Facebook.

It is a private book group, but you can request to join. It is our journey with Lewy body dementia. I am in that group. I actually have a TikTok with my service dog, hella, HELA, hella the service dog. I post stuff about her, but also [00:41:00] a lot about dementia and being that voice for others. I am open to questions and concerns from people that may be experiencing it or seeking diagnosis.

Those are two good ways that people can find me. 

JIll: Yeah, and I'll put a link to both of those in the show notes so that people can easily find it. Thank you so much Tanya, and I hope you have a wonderful rest of your day. In my next episode, end of life doula, Casey March opens up about her path into death work and the lessons she's learned supporting families through some of life's hardest moments.

Casey shares how her grandmother's death in the ICU left her with deep grief and unanswered questions, and how later working with a birth doula showed her the power of compassionate guidance during life's. Major transitions now, she helps individuals and families prepare for the end of life with thoughtful planning, legacy projects and honest conversations about medical decisions, hospice and even medical aid, and dying.

Together we [00:42:00] explore what it means to have a well supported death and how planning ahead. Eases confusion and guilt and why education and presence matter so much at the end of life. If you enjoyed this episode, please share it with a friend or family member who might find it interesting. Your support in spreading the podcast is greatly appreciated.

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Thank you and I look forward to seeing you in next week's episode of Seeing Death. Clearly.