Tarron Estes is no stranger to death. Raised by a mother who sat vigil with the dying, Tarron understood from a young age the power and possibility of liminal spaces. With her mother now 94 years old and living with dementia, Tarron and her siblings grapple with mom’s dementia and the complexities of the family system. How do these dynamics affect all involved? What are some resources that offer support? A vulnerable, personal story.

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Transcript:

Diane Hullet: Hi, I’m Diane Hullet and you’re listening to the Best Life, Best Death podcast. And this week I’m talking to an old friend and I’m so happy to see her, Taryn Estes. Hi Taryn. Hi Diane. So sweet. 

Tarron Estes: This is great. It’s 

Diane Hullet: just 

Tarron Estes: great. Taryn and I 

Diane Hullet: kind of circled around each other in Boulder, Colorado for a bunch of years.

And then of course I signed up for the. Conscious Dying Institute doula course, which was the very first doula course that they had to spin and go on to zoom back in March, 2020, right? 

Tarron Estes: Oh, that’s right. That’s right. I mean, I often don’t hold that in my consciousness that we actually did that like on the fly.

It was so fast. 

Diane Hullet: On the fast. We were planning on meeting in person in Boulder that March and the world shut down and we’ve. We flipped it. You all flipped it to zoom and it’s just, it’s just a real treat to be here with you. So it’s got a long, long history in working in the death and dying field. And I thought, you know, Taryn, just to get us started, tell us about how you got into this work.

Tarron Estes: You, you can imagine how many times that question comes to me, right? So before we started this interview, I was thinking about, you know, like, see if I want to find like, if there was something fresh and new for me to say about that. And whether this sounds like corny or mysterious or not, it’s like I truly believe that I came into this world with a purpose.

to explore death. I, I think that was in my spiritual DNA and I think I was honestly guided and directed and and given information about what to do at the times that, you know, more and more when I started realizing that this is what I want to do and need to do and am given to do. And the thing, you know, how life, You know, I mean, life gives us the things that support what we’ve come in to do.

I mean, I just happen to have a mission, I guess, that was strong enough for me to collect all this stuff. And some of the stuff that I collected is a mother. She collected me. And her work was bedside sitting. You know, she’s 94 years now, and this is a long time ago. And then I was with her as a child, and then, you know, bump it up, up, up, up, up, up, I was a consultant and a facilitator, and had been a therapist, and I started facilitating with an organization who was working with a long term care company.

And discovered after that 18 months of being with this company that they, they were nursing homes, but they didn’t, they didn’t have anything on their vision and change mapping for end of life. And. That was the moment when I felt my heart was pierced with the arrow of, you know, this is it. This. This is it.

Yeah. Yeah. 

Diane Hullet: Well, Taryn founded the Conscious Dying Institute, which is. Gone on to become the conscious dying collective. And it’s so powerful to see that work in the world. I always think of it as being, you know, kind of like the grandmother of the doula training movement. I mean, you started that along many, many years ago, long before doula trainings became as popular as they are today.

And, you know, I just want to honor that legacy. I think it’s so. Beautiful that your mom really got you started on this path that her role was sitting with people. And you saw that and you saw that, you know, we could do this better. We could do death better. We could bring it more forward and you could teach people how to do that.

It’s just remarkable. 

Tarron Estes: And that it was just so simple, you know, to see her do what she did was just like, it was beyond teaching. 

Diane Hullet: Yeah, we were talking about, you know, Taryn and I were kind of like, okay, there’s a lot of these end of life topics that have been hashed over and over again. But we really wanted to jump in today kind of to this, this topic of dementia and family structures and how the.

Wellness of the family structure impacts that relationship to the dementia patient to the caregivers to the extended family and just that that whole piece. And, you know, I think dementia plays such a huge role in so many families as does mental illness. And when those 2 things combine. You really get a lot that a family system has to hold and manage.

And, you know, someone has to steer the ship through these very turbulent waters. So I don’t know where, where do you want to pick up on that with families or dementia or your own experience? 

Tarron Estes: Well, they’re all connected, so I think I can dive in here, which is to say that my mother’s 94 and has moderate to severe dementia, depending on what’s going on.

 I will say that I do have a younger brother who has mental illness, and she is more or less, Level and her dementia expression, given her connections with him, her communications with him, her relationship with him, which for her, even though my younger, my first brother and I know that she loves all of us equally.

He just has one of those special, absolutely, you know, you cannot separate my mother’s. from my brother’s health, and it makes for a very complex caring, caring for caregiving situation. Does that make sense? 

Diane Hullet: It makes so much sense because I mean if you take say you take the healthiest of families where there are some adult grown children who can really step into the role and maybe there’s even a living partner still who’s doing a tremendous amount and then the person with dementia.

That, in and of itself, stretches a family incredibly thin. And then if you add something on top of it, whether it’s an addiction or a mental illness or a inability to do the adulting necessary for that dementia situation, I think the whole thing just really can spiral. You 

Tarron Estes: know, I thought you were going to say conspires.

Diane Hullet: Yeah, 

Tarron Estes: I think it does both. Yeah spiraled and then it it’s like all of them can’t help but just kind of Conspire, you know, I there’s another word, but I can’t think of it right now conflu, Collude 

Diane Hullet: collude. Yeah Collide 

Tarron Estes: collude conspire Conflate, you know And that, that conflation, you know, whatever that moment, that expressed moment of conflation is, has a beginning and an end.

And with both, I’ll just say, from my experience with this, with my mother having dementia and my brother having a mental illness, That one of them, my brother usually instigates it, the mental illness instigates my mother’s dementia more fully and, and then they, they have a beginning, a distinct beginning and an end in terms of the incident.

Diane Hullet: Wow. And how does it play out for your mom? So something is said or something, there’s some interaction and then she. She worries. 

Tarron Estes: Yeah. You know, and it’s beyond me to have any capacity, really, to understand how much a mother, you know, my mom, is tied to my brother’s well being and health. Now, regardless of how she explains it or if she doesn’t understand it in her mind, it’s in the heart of her as a mother that she knows.

You know that as she’s 94 years old, she has a, her, a child of old, you know, an older aged child who hasn’t made it yet. Yeah. 

Diane Hullet: And she worries. And she worries. And she 

Tarron Estes: worries, but 

Diane Hullet: she’s worrying in a mind that can’t take action with the worries or can’t get support Absolutely. With the worries. So it just goes a little loopy.

And then how does it move for her? Does it take 24 hours or two weeks? So what’s the. 

Tarron Estes: movement. 24 hours is about it. Usually after that, you know, she gets really anxious and, and she then her dementia has an aspect of hallucinatory, you know, expression. You know, that it, it, she just, and then we have to, you know, we just have to let her have that because there’s no entering into that.

So what I want to say about my experience with dementia right here, even though I knew this, I didn’t get it. And I still don’t do it all the time. And I feel horrible when I don’t. I mean, it’s just like, oh, gosh, why did I do that? But as long as I let my mother have her story. Yes. 

Diane Hullet: So if you, if you try to jump in the middle of that and, and, and write it or correct it, or bring it back to your reality, nobody gets anything out of it.

Tarron Estes: You just have to let it 

Diane Hullet: play out. You 

Tarron Estes: know, like, like there’s the, the fixer in me and the mother who has her reality, which is what it is. And that reality is hers. That’s it. No matter what I know around it and as long as I just come into that reality with her and ask more questions about it without shaming her or saying, you know, Mom, you know, that’s not true.

And I’m, you know, I have done that, you know, and it just, you know, it’s like the, I don’t know what part of my consciousness awareness or, you know, my mind thinks that, you know, You know, if I can just say it in the right way, she’s going to get it and come out of it. And it is so, so aggressive and it’s so harmful and hurtful and it doesn’t help anybody.

Diane Hullet: And part of what you’re saying is even with all your knowledge as the caregiver, You have a hard time remembering what’s the quote unquote best thing to do for her, you know, that really will support her calming back down and being stable and relaxed again. It’s so hard to remember what helps the situation because we’re What really helps it.

We’re so oriented to our reality that it’s very difficult to let an expression keep going that, you know, is just mindless worrying and they shouldn’t bother, but we just have to go with it. We were talking about resources for people and, and you mentioned that a huge one is alzheimers. org and that that’s just been a real source of information for you as a caregiver.

Tarron Estes: It has. They have so many videos. On, you know, dementia is the umbrella. Right. And then there are different versions of dementia and, and we hear Alzheimer’s more than anything. And it’s still a little confusing for me. You know, like, I say, my mom has dementia because Alzheimer’s has. the aspects of not knowing your people anymore.

Let’s just say that’s one big one. My mom doesn’t have that. So it has information on those distinctions and it has telephone numbers for contact with real people who answer the phone to help you describe your story well enough that they can put you in touch with people that know, you know, how to help that your particular thing.

You know, the intersection of mental illness and dementia is, it’s not, it’s not that unique. Now, I’m talking about, you know, one person having dementia and another person in the family having mental illness. So I just want to say that’s what I’m talking about. But they can, they can help with that kind of family system dynamic.

And and then as you mentioned earlier, too, TIPA Snow, TIPA Snow. Has a really awesome training and a really awesome site that gives you information about kind of how to be with the stages identify the stages that your person is in, and how to be with that person in that stage. 

Diane Hullet: And Teepa is T E E P A, Teepa Snow, S N O W, and that’s the founder’s name, teepasnow.

com. Really good resource with videos and books, and again, just getting information. I think, you know, I think sometimes dementia is such a scary word that we don’t even know that we could get some basic information that might be helpful. And I remember like one of the examples in one of Teepa’s books, she gives an example of how.

Maybe we used to talk to our beloved person and we’d say, Hey, from the other room. Hey, what do you want for dinner? and kind of expect a response. And she says, you know, in the new world of dementia, when your person is beginning to have these symptoms, it takes a different kind of conversation. So now you need to go to them and say hello and connect first and make sure they’re with you.

And then say, Hey, I’ve got two things in the refrigerator for dinner. What about soup or a quiche and kind of. Let that play out a little bit more directly and a little bit more slowly. Well, wow. As a caregiver to be reminded of that and given that tool is really, really helpful. And I’m talking about a very minor early on kind of dementia thing, but these are the kinds of things that I think TIPA snow and the Alzheimer’s website can give.

People, but you have to first kind of get over your fear of even ordering that book or watching that video and just being willing to step in and say, this might be what’s happening for my partner or my beloved or my friend or my. Sibling. 

Tarron Estes: Right. And I remember seeing you on Instagram or somewhere the other day, Diane, where you were holding up the book in love.

Diane Hullet: Yes. Oh gosh. Such an interest. Oh 

Tarron Estes: gosh. This is such a good book to read by Amy Bloom. It’s interesting and relevant on so many levels. You know, it’s, it’s like, of course, this is about Alzheimer’s, but it’s about the way that a couple decided together to be with that through. The his end of life. 

Diane Hullet: Yes, I 

Tarron Estes: definitely recommend that as a resource.

Yeah, 

Diane Hullet: in love by Amy Bloom and she talks about how when they realized his early Alzheimer’s was setting in, he really looked at her and said, You’re going to have to figure this out because I can’t figure it out anymore. And she was kind of, you know, heartbroken and horrified, just begin to touch the surface of what it meant to have to be the one to explore all the options for him of how he might end his life.

And ultimately they went to Dignitas in Switzerland. And that’s, that’s where the book begins. They’re on the plane headed to Dignitas legally to end his life with assisted medical suicide. 

Tarron Estes: Yes. 

Diane Hullet: Very, very powerful book. And she and I did a podcast, gosh, about maybe two years ago now, I wish I could remember off the top of my head, which number, I think it’s 40 something.

And she was just a lovely person to talk to and so direct. And the pain of that, of having to be the one who had the, the mind that could sort through all the resources is, is really part of the heartbreak of caregiving. 

Tarron Estes: Oh, oh, so, so poignant. You know, the heartbreak of caregiving, I love that because at a certain point, they, our loved ones, are our responsibility, you know, until as, until that person we love can really not do it anymore.

Yeah. Yeah. Yeah. 

Diane Hullet: And I think, I think that you are correct that there are probably more families that have this complex dynamic of throw in a mental illness or an addiction that impacts the whole way that that plays out. Are there three siblings in your family? . Yes. And so does it play out that two of you are the caretakers and the other one is the odd man out?

Yes. And how many times does that play out as well? Right. 

Tarron Estes: Well, my brother who’s helping me c take is, you know, we’re on the phone twice a day. Yep. And we are it, you know, and then my mother’s only living sister is the third, you know, Roundout on that. And then her grandson, who knows? My brother, you know, kind of comes over here and helps us out with understanding what’s really going on.

And so that when we say family systems and how the family systems are affected or connected, we’re all in a interconnected web of information giving. What are you going to do? What are we going to do? How can we help? You know, and. And for my particular family system, it’s up to my brother and I, who live close to my mom, to, you know, to make the decision about what exactly we’re going to do.

And I’ll have to say that the thing that, one thing I know for sure, is that you don’t, I do not ever want to give my mother any information, a choice. Until my brother and I have agreed to what the choices are in terms 

Diane Hullet: of medication or a treatment or a move or 

Tarron Estes: a, you know, like, okay, we’re going to go see, we’re going to go to the home homestead this weekend, you know, do we tell her or not?

You know, and then if we do, what’s the parameters and that has to be right, really tight with her right now with us, you know, we have to come into union, you know, it’s an intimate, intense partnership that he and I have, he has his family, his whole life, you know, I have mine and we’re right there. 

Diane Hullet: You come together to figure out what’s the, what’s the story to tell her that makes it sound like you’re being deceptive, but not in that way, but just so that you’re on the same page and it’s not confusing to her.

Right. And I’m going to guess brother number two throws some wrinkles in that fabric. 

Tarron Estes: Well, I’m more, you know, if you, I don’t know what the design scheme and us as character organization, but when it comes to things like this, I’m much more precise, you know, like this, you know, and less vague and wobbly, you know, I don’t, there’s, I don’t leave things like that.

I don’t like to leave it open and he’s more open, you know, and so at the end of the day, you know, I, I’m okay with just coming down and saying, okay, this is what we’re going to say. And that’s okay for us. For the two of you. For the two of 

Diane Hullet: us. But then the third 

Tarron Estes: one comes into play. It’s just. Then we go, we don’t know how that’s going to, what’s going to happen after this.

We can’t go any further than that. We can’t predict out any further than that, you know, and I tell you, trying to predict out further than you can, you know, in a situation where you just don’t know how it’s going to go and never have and never will, it’s just, you just know, like, let’s just let that go because it’s all, you know, we, we, it’s always like this.

Diane Hullet: I think that’s one of the hardest things. I, I watch people with their older parents or with siblings who are struggling in some way and the unknown, you just, you, you don’t know what’s going to happen down the road. It’s very hard to predict and plan for financially, emotionally, for your time. This, this is a great piece of caregiving, a big, big piece.

I saw a wonderful cartoon yesterday, a friend sent to me, which said wait, wait, wait, let me find it real quick. I think it’s in the Current New Yorker. It says, The complete book of caregiving. It’s a little book and it’s one page.

Too tired to write it. The end. So there you go. The complete book of caregiving is one page too tired to write it. The end, the end, summarized caregiving pretty well. It does. And especially in the dementia field. The end. Yeah. 

Tarron Estes: I mean, I just, I want to do the last thing I want to say about this is to add to the people who are listening that fortune beyond fortune.

My mother is in a place that she is so well cared for. It’s an assisted living, not a nursing home, not a dementia place. And she’s going to be able to stay there the rest of her life. And if we, the fact that we have that for her and that she has that given also the amount of work that we have to do, it’s just like, you know, like, thank you.

God, you know, I don’t know how we would be able to do it. 

Diane Hullet: Was it, was it easy to come to the decision to move her there? 

Tarron Estes: Once my brother and I decided that we were going to move here, where I live now in Chattanooga, Tennessee it, it was much easier for her, all of us. Yeah, 

Diane Hullet: you would be there. Yes, she wouldn’t be in her own home, but she was at a place where you could come and see her a lot.

Tarron Estes: Yes. Yeah. 

Diane Hullet: Yeah. Yeah. Well, yeah, you’ve got a really fantastic workshop coming up. If we were we are talking in September of 2024. If you’re listening later. And Taryn’s got a workshop coming up with Aditi Sethi and Carolyn Mace. And do you want to just say a little bit about that? Tell us the title, because I think it just sounds like an amazing group of women.

Tarron Estes: Oh, you’re so great. 

So the, the title it’s, it’s actually offered through the sophiainstitute. org. So if you’re interested in this, that’s where you go to register for it. It’s 60 for three events. Three different, pretty great people and the title of it is End of Life, Life After Life. Great. 

Diane Hullet: So, End of Life, Life After Life.

After 

Tarron Estes: Life. The 11th, the 18th, and the 25th for a nominal fee and it’ll, it will be live. They’ll be viewing all three of us and it will be recorded. And you can, you know, if you can’t make it that day, you can go back to it. It’s so honored, you know, the Sophia Institute is like, it just, it’s just such a caring, really, truly devoted.

To transformation, especially, you know, looking through the lens of women and that that kind of elderhood and archetype of Sophia as love, you know, universal love. So it’s it’s a good really good. Organization to tap into. 

Diane Hullet: It’s so good. Well, they’ve put three really interesting people together. And so, you know, you each bring something so unique to this conversation about end of life, about life, about afterlife.

I mean, what is Carolyn Mace going to say? She’s like the mother of life near death experiences. How I think of it. I mean, the spiritual piece will really come into play. 

Tarron Estes: It will. It will. I mean, I’m very, I’m very excited to hear what we all have to say too. 

Diane Hullet: Oh, thank you, Taryn. Yeah. Yeah. I’m listening to the Best Life, Best Death podcast with Taryn Estes.

And if you want to find out more about Taryn and her work and what classes she’s teaching now, you can follow her on Instagram and Facebook and all the good places. And her website is ConsciousDyingInstitute. org. Is it hot? Oh. Dot. com. Dot. com. Dot. com. Dot. com. Awesome. Thanks so much for 

Tarron Estes: listening. Oh, This is so wonderful.

Bye, Diane. Thanks, Terry. Bye, everyone. You can 

Diane Hullet: find out about the work I do at bestlifebestdeath. 

com. See you next week.