Choosing The End-Interview with Author Theresa Evans

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Welcome

Welcome To Patty’s Place

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to Patty's Place, a place where we'll talk about grief, dementia, and caregiving. I'm your host, Lisa. I named this podcast in honor of my mom, Pat, who passed away from dementia a little over two years ago. So grab your cup of tea, your cup of coffee, if you're having a really bad day, a glass of wine, and come join us as we talk about things. And just so you know you're not alone. That's what we're here for. So today my guest is Teresa Evans. She is an author and also she was an ICU nurse as well. So welcome, Teresa, to Patty's Place.

SPEAKER_01
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Thank you. I'm happy to be here.

SPEAKER_00
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So um we're happy to have you too. Your book is called Choosing to Die: A Daughter's Story of Supporting Her Mother's End of Life Through Assisted Death. Is that correct? Yes. Okay.

Teresa’s Story Behind The Book

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0:54

So tell us a little bit about yourself and how the book came about.

SPEAKER_01
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Um, I'm Canadian, but I I've lived in the United States since I was uh 18, but all of my family lives in Canada. Okay. And um my mother um had a turkey childhood and um a lot of health issues that sort of plagued her, and then she had a heart attack when she was 60, and um her health just never really bounced back. She did have open heart surgery, but she had multiple health issues that were slowly but surely leading to uh a decline in her quality of life to the point where just before, I would say two years before her 80th birthday, she was really most of her days were spent in what I would call suffering, pushing for some relief from that. And we had tried every medical intervention known to man and um every non-medical intervention that we could come up with. And one day I just said, you know what, mom? You live in a country where you don't have to suffer. If this is intolerable for you and you want to explore MAID medical assistance in dying, I said, I'm not trying to off you, I don't think you think that by any means, right? But I said, I do want you to know that you do have a choice. I I personally I think the worst place is to feel backed up against the wall with no choice. Yes, and I didn't really know that she would explore it, but she did, and then she came back and said, Yep, I'm gonna do it. And um, that was a little bit shocking. I mean, of course, I supported her a hundred percent. So that's how this story started. And um, this was in 2020, so COVID was really raging at that point, and I I had lost my job, which was a travel job anyway. So I hopped in my car and I drove to Ontario and I spent three and a half months with her and my two sisters before she laid down and died on her 80th birthday.

SPEAKER_00
3:15

Oh, okay. Okay. So in

Where MAID Is Legal

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3:18

Canada, this is legal.

SPEAKER_01
3:20

It is, it's legal in Canada and it's legal in 14 states in the United States, and there are 12 states that have it on the dockhead trying to get some kind of legislation legislation through.

SPEAKER_00
3:32

So Okay. Yeah, my mom used to talk about that too, way before she got sick and stuff, because she just never she always looked at it as your quality of life, you know, what what's that quality uh with it? So I completely understand uh on that side of it. So, why did you want to write the book?

SPEAKER_01
3:51

I just it was such a remarkable experience for me to live that last three and a half months with mom and also as a critical care nurse, and uh I've just been around a lot of people when they're leaving their bodies, and I've seen how it can go if there have been thoughtful conversations beforehand between all of the family members and the person who's leaving, and I've seen how it can go when there hasn't been any thought given to the fact that we are all going to die one day. And I really wrote the book, first of all, just to honor my mother and share our story. Um, I am an advocate for maid, of course. I don't feel that everybody should choose maid, but I do feel that everybody should have that choice. And I want to more than anything, just get people talking about the fact that one day we will all die. And how do we show up for somebody who's getting ready to take that journey? I'm hoping that this book will spark those conversations. And from the feedback that I've gotten already, a lot of people have been, I wish I'd read this book before my mother died. I wish I'd read this, you know. So I'm I I think it's serving its purpose so far. Well, that's good. So, what is made? What what does that stand for?

How Medical Aid In Dying Works

SPEAKER_01
5:23

So, medical assistance in dying is um a program that was first legalized in Quebec in 2015 and now all over all over Canada in 2016, where you can ask for medication that will actually cause your death. Okay. And it is you have to be evaluated by two independent doctors. If there's any doubt about your mental capacity, you also have to be evaluated by a psychiatrist. Okay. Um you have to be a Canadian citizen. If you're doing this in Canada, you have to have a health card, a Canadian health card. You have to be of sound mind. So you have to be able to give consent right at the time of when you receive the medication, even. So there's never any um forcing involved. Uh, you can change your mind at any time. You're reminded constantly that this is totally fine to change your mind. Um, and so you have to uh be able to give consent, and you need to be suffering from um from a condition that is not going to get any better. It's clearly not going to improve. If anything, it's just gonna continue to get worse. I think initially they had a six months. I know in the United States there's a six months time period, sort of aligns with if somebody goes on to hospice, but I believe that that is not the case in Canada anymore. So my mom easily met all of that criteria. And um, so she received a cocktail of medications. She she chose what day she wanted to die. She said, When should I do this? And I'm like, do it on your birthday, mom. Why don't you do it on your birthday? Do it on the same day you came in. I mean, it was, you know, reasonably, it was within months of her birthday. And I mean, how do you choose? Right, right. I I don't think anybody really wants to die, but I think people become exhausted when the physical, mental, and emotional suffering just becomes so overwhelming. I

Dementia And The Consent Problem

SPEAKER_01
7:54

think it's a little bit different when you have dementia because you're not always aware. I've worked in a I actually helped open a dementia unit in a long-term care facility and Alzheimer's unit, and worked in that unit for two years. And um it's a different type of suffering. I think oftentimes it's more difficult for the family than it is for the person that has dementia.

SPEAKER_00
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I I would agree with that because they don't they don't know.

SPEAKER_01
8:25

Um there's that initial, I think that initial period where you you do know. You know that something's not right anymore, but you usually slip through that period, you know, you move through that period, and then you're just not aware anymore that yeah. So I think what makes what made MAID, I mean, actually a lot of people who who have dementia or have a history of dementia in their family really want to be able to access MAID. And this is one of the ongoing debates in Canada right now is because actually, if you have dementia, you can't access MAID because you can't give consent at the end.

SPEAKER_00
9:08

No, you can't. You really can't. You can't. And um, my mom and dad had done the powers of attorney years before, and that that's actually how we got my mom diagnosed. And it was kind of funny, not funny, but I don't know, lack of a better word. But my dad and I were trying to do some stuff with the bank, and the bank was like, No, she has to give her approval, and we're like, she has dementia. She, you know, I could sit right next to her on the phone and tell her what to say. I mean, I I appreciated that they were protecting her rights, but it was like, I don't think they understood. So my dad and I were like, all right, we're just gonna leave everything right now, you know. Yeah, yeah, it's like, no, she she'll say whatever I want her to say, and I don't want to do that to her, you know, like it's just crazy the lack of understanding with it. So

Family Support And Anticipatory Grief

SPEAKER_00
9:56

was your you said you had two sisters, were you were your family on board with your mom with this choice?

SPEAKER_01
10:01

They were. It was the three of us just uh they live close to mom in Ontario, and um the three of us just rallied. It wasn't easy, but it wasn't, I mean, we didn't spend mom's last months um crying and wishing it were different. We spent, we just decided to show up for her and make it as as joyful of a time as we could. I mean, of course, we were experiencing a heavy, heavy load of anticipatory grief. And that would seep through every once in a while, but rather than we knew that once mom left, we would have time to process our own grief. And again, I I've just being with families, members, I think, and I write about this in the book, I think that oftentimes we confuse our grief. We we think that our grief is the way the person who's leaving is what they're experiencing, also, and we sort of lay our grief on top of that person. And I think they're two separate um events, and it's completely different for the person that's leaving, and we really wanted mom to know that every good thing that she had ever done as a mother, and just literally love her out of her body without any judgment. And um, you know, we we dealt with our grief after mom left. I mean, mom was grieving too. She was grieving the fact that she didn't know if she would how she would see us again. That's true. Um, so you know, we we were we were actually helping her uh work with her own grief. I think um we all believed that death is really a transition. So none of us really thought of it as a real ending. And um just more of a transition, and we would have to access our communication with mom in a different way.

SPEAKER_00
12:18

I think that's really true because um well, my mom always believed in I, so then I kind of believe she taught me that like you you're you can the person's still with you just in a different form. And even like before she before she died, weeks, even almost a couple months before, she started seeing like family members, uh and that. And I just went along with her when she would talk about them like, oh, who's here, you know, and stuff. So yeah, it she wasn't scared, it brought her comfort, and it brought me comfort because I believe they were there with her, you know, yes, with it. And so I still believe she's she's with me, you know, uh in different in different ways with that. Well that uh that was good that your sisters and all you were on the same page, because sometimes families aren't right, yeah, with that.

SPEAKER_01
13:07

I think um we decided that even I think for all of us, even if we hadn't agreed with mum's decision for with made, we all could see how much she was suffering. And it was just about supporting her, not about whether we supported her decision, but whether we supported her.

SPEAKER_00
13:33

I think that's a good distinction to make that you are you're doing it for her. Uh yeah with that. And yeah, that anticipatory grief, I I can relate to that because I I always tell people I lost my mom years before I physically lost my mom. Uh and that's knowing like I there would be different things. Like my mom used to call sometimes, like literally one day, I think it was like 30 times. She called me, you know. And people and people would always say, you don't have to answer it all the time. And and I would say, I know. And and if I couldn't, if I was at work or something, you know, I wouldn't. But in the back of my mind, I always wanted to answer it because I knew there was gonna come that day where she wasn't gonna be able to do that anymore. And so it was like I knew that, and it did, it came that day where they called, and somehow my mom had dialed numbers that were, you know, we had one of those phone like landline, you know, and she just had to press a button to call me or call my dad, and somehow she dialed some other butt person's number. And luckily they figured out, you know, where she was calling from, and they called the the the facility to say, hey, you know, we just we could tell she has dementia or something, you know, you know, and then we took the phone out. But yeah, that whole anticipatory grief, I think in some ways, if you're able to recognize it, I think it helps a little bit as you're going through the process.

SPEAKER_01
14:53

I agree with you, and I think it um I I mean I can only speak for me, it made me very thoughtful about. I mean, when I would be with mom, when I was with mom, when I would look in her eyes, I would really look in her eyes. Like I knew I really wanted to see her because I knew that the time was limited, and I don't think that we're always um oh coffee delivery.

SPEAKER_00
15:18

Oh, that's even better.

SPEAKER_01
15:21

Yeah, I don't think, you know, I mean, our lives are our lives are full of distractions of ways to get distracted, and um this this what this did for me, I don't think I've ever been present for anything the way I was present for my mom for those last three months of her life.

SPEAKER_00
15:44

I would agree with that. Um I can relate to that because with dementia, they live in that present moment. So you're I was forced to be in that present moment with her, especially like the last the last week um when we knew it was coming. Uh yeah. You you are you're just that's all that exists for you with that. So what do you hope readers will take away from um your book?

SPEAKER_01
16:11

Well, uh

Advance Directives And Starting The Talk

SPEAKER_01
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like I said, I really hope that they this will this book will spark conversations around end-of-life issues. Um Compassion and Choices is the United States organization that is lobbying and helping educate people about assisted deaths here in the United States. And they say really anyone over the age of 18 should have advanced directives in place: a durable power of attorney for health care, a durable power of attorney for um business affairs for your bank account, etc. And so I plan on getting very involved in compassion and choices. I'm still working and getting the book out is a full-time job. Oh, yeah, yes. I was just at a writing workshop, and I I mean, I had no idea what I was getting into. Writing the book is one thing, but getting the book out there is a whole different animal. And they were saying, you know, when you have a book that's been published traditionally, you might have 30 to 50 people involved in getting that book out from you know the editors all the way through to the marketing. But if you're independently publishing a book, you are all 30 of those people. Yes. So it's been like a full-time um job. And I just feel like I feel so close to my mom because I just feel like we're doing this together. I know she would be so excited about this. And so it feels like this big journey that we're on together. And I didn't physically, I wasn't physically living close to my mom for most of my life. So while we talked all the time, I only saw her once, maybe twice a year in a good year, because I was over a thousand miles away from her. So to spend that last three months with her, and now I feel like we're together all the time, you know, working on getting this book out. So I do, I do hope that the book inspires families and individuals to reach out to their people, whoever their family is, right? And um start to have these conversations.

SPEAKER_00
18:29

And you said that you wrote this from the point of view because your mom was a master gardener.

Gardening As A Metaphor For Leaving

SPEAKER_00
18:34

So so you talk a lot about gardening and things like that within the books. So how does that is the garden is like a healing place? So can you describe that? Like how how is that written for you that way?

SPEAKER_01
18:47

Well, mom asked, she was she was such a wonderful gardener. She had huge vegetable gardens when we were growing up, and then for the later years of her life, a beautiful flower garden. And while I was there, she asked me for that last three months if I would put her garden to rest for the season. And so, of course, I was thrilled to do that. And as I was working in the garden, I started noticing that everything I was feeling, I was witnessing in nature. So nature just became a giant metaphor for what we were experiencing. And I realized that it's just all part of the cycle of life. I mean, you know, we can't really have life if we don't have, we have, I mean, death is part of life. And there's there's times where we're growing, and then there's times where we're decaying, and it's all a natural part of the cycle. And again, I'm hoping that my book, so mom, so what I did was I as I started writing the book, I I couldn't not talk about the garden. And all of a sudden, it just became that I was writing our story uh through the lens of what a plant would be going through. And so I just I made a list of all of the plants in mom's garden, and each chapter focuses on a different perennial. And as I'm telling the story of what's happening in the house with with my sisters and with mom, and our journey of saying goodbye, the plants are also getting ready to um, they're dropping their leaves or throwing their seeds. It's fall, right? So the same process was going on, and so I share a lot of botany in the book.

SPEAKER_00
20:36

Well, that's that's kind of neat because it is, it's very it is the cycle of life. We don't like to think about it, but it is really true with it. So we get gardening tips too, then a little guy.

SPEAKER_01
20:46

You do, you get gardening tips, you learn a lot of botany. There's actually a um, there's actually a glossary at the back of the book with all the botanical terms in it.

SPEAKER_00
20:56

Oh, that's cool. Yeah. So

The Countdown And A Peaceful Death

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21:00

what do you think was the hardest part of this journey for you and for your mom?

SPEAKER_01
21:07

Uh I think it was I thought it was gonna be, you know, that moment when we laid down with her and she received the medication, but that was, you know, I say in the book, um, I don't know if I can find it, but you know, she mom had asked us, she said, now girls, if you feel like you're gonna fall apart, don't just leave the room, you know, because she didn't want to have to take care of us. You know, she was leaving her body. And I say, we didn't fall apart. We fell into the the magic and the mystery of the moment. Um, we laid down with her like kittens, we just snuggled around her and um. And she just quietly and peacefully took her last breath and left her body. I I think again, anticipatory grief can be a heavy load. We all experience it in different ways. It's very, it's an odd kind of um knowing to know the exact day and time your mother is going to die. And so there's a little bit of a like a countdown of, you know, I say when I got there, we had 86 days, which felt like 86 days felt like it was going to be plenty. But as each day, as we got closer, it felt like the days were just flying by. Some days it felt like they wouldn't, they were never ending. And those were the days where maybe for me, I was more preoccupied with the reality that mom would be gone soon. Um, and again, I carried that. We tried to carry that. Not that we didn't talk about it, but it wasn't the major topic. Mom loved fossil hunting. I took her on a fossil hunt a couple weeks before she died. She loved um bingo. So we, you know, she couldn't, it wasn't, she wasn't vital enough to go out and play bingo in the bingo hall, but we we set up a bingo game. She loved, you know, she had a plant that her Christmas cactus that uh we ceremoniously split into three pieces and repotted. And we did really, she wanted to knit scarves and hats for all of her grandchildren and then all of her great-grandchildren, which was a lot of knitting. The four of us were doing a lot of knitting during those months, but to her, that was a tangible way, you know. I describe it as a tangible way of wrapping her love around, you know, each each one of her grandchildren and her great-grandchildren and her children. So we she taught me a lot about gardening during that time, too. So we really used the time to um we just we had a birthday party that was for all of us, you know, like the last birthday party with, you know, celebrating each other while mom was still here. So I think the hard I think the hard part is always just knowing that you're not gonna be able to call, I'm not gonna be able to call mom up and say, how what was the recipe for that pancake, mom?

SPEAKER_00
24:38

Exactly. Yeah, that kind of thing.

SPEAKER_01
24:40

Yeah, that's what I did you find yourself, did you find yourself sometimes I mean you I suppose because it was drawn out with your mom, but I even though I knew very much that mom was gone, I I would still months after I would think, Oh, I just need to, and I'm like, Oh yeah, no, mom's not I I can't do that anymore.

SPEAKER_00
25:01

Yeah, because my mom didn't know who I was, you know, but I could still physically go see her. And I went to go see her every day. And every once in a while, she would have a lucid moment. Like she'd look at me and she'd say, I know this is really hard on you. And I knew that was, you know. Um, but I always kind of just went with her after a while, like whatever she said. I was so glad I paid attention to all her stories about her family and everything. So when, because she thought she was back when she was little, she thought she thought that the memory care um was her grandma's house. And so uh we my dad and I just went with that. We're like, yeah, you're a grandma's house, you know, you know, so I was glad I paid attention. But that is what I missed the most now that you know she's physically gone. I miss just picking up the phone and calling her. You know, her and I used to watch TV together. She used to, uh, you know, she used to have all the gossip magazines and you know, things like that. Like she would call me, put this on. Did you hear about this? You know, I miss that kind of stuff. Or like, you know, she taught me how to bake and and cook and all that. And, you know, sometimes when I'd come over, she'd be like, okay, you you need to we're gonna make this recipe because you roll out stuff better. I don't use this rolling pin anymore, you know, and stuff like that. You know, and that's the stuff I you miss just being being able to call and talk to them about whatever, you know. And yeah, I mean, it it was hard because she didn't know, but then you know, I but she was still physically there. So I could still see her, I could still get something out of it. But you talk about like that knowing because hospice had told us when they knew she had like about a week left, and that was like that that in a way that was like a countdown because like I I knew, you know, she was only gonna be a few more days or a few, you know. Um, and I I was with her when it happened, but my mom being my mom and the caregiver, you know, people asked me what was the exact date, you know, time that she and I was like, I don't know because she went when I had closed my eyes for a little bit. And I knew she did that on purpose because she didn't want me to hear her last breath. I just knew it. And so I wasn't upset about that. But she I I know that she knew I was with her, you know, yeah, uh, with that, um, yes, with that part. So we learn about gardening and everything for that. It sounds like you you you know, you and your sisters had a very, I don't want to say a nice time, but a very special time with your mom then for those last three months.

SPEAKER_01
27:29

It was it was a remarkably special time. I mean,

Letting Go Of Belongings Without Guilt

SPEAKER_01
27:32

mom wanted all of her ducks in a row. We we we totally uh repainted and cleaned her house. She we sold everything that she wasn't using. We, you know, and of course, families, I I talk about this just like gardens, just like plants, families. Each plant has its own timing, each human being has its own timing. And um, I know uh like one of my sisters felt when mom was encouraging us to get rid of her stuff. She said, get rid of my stuff. I want all of this taken care of. And she wanted to, she had the realtor, got the realtor, and the house went up for sale literally five days after she died. Oh wow. Um, yeah, she wanted all of that stuff taken care of. She had given away the things that she wanted uh people to have, and we were kind of lucky because the guy had moved into town where mom lived, and we put our first ad up on marketplace for some of the kitchen stuff, and he bought it all. And he said, Well, he said, you know, he said he just moved into town and need he needed everything. And my sister's like, Well, well, Wesley, that was his name. If you can wait, say, like 18 more days, we might be able to help you out. So basically all of Mom's furniture and apartment went over to him. I said, if we ever really miss mom's stuff, we can go visit Wesley. Yeah, there you go. My, you know, my I I one of my sisters felt like I think she felt like we were sort of getting rid of mom faster by getting rid of her stuff, although we were just doing what mom wanted. And so those moments came up, of course, like they do in all families. But rather than get reactive about it, I was just like, I understand that. And, you know, have a conversation with mom and see what she wants. Because if if we should slow this up, we think we're just doing what mom wants, but just double check. And so as long as we kept coming back to not not what we need necessarily, still honoring that, but more what does mom need in this moment? What does she want? If she wants us to sell everything in the house tomorrow, then let's do it, you know, let's keep some sheets for her bed. And um, so yeah, it was, you know, and we sat the night before we created a beautiful altar and we hung fairy lights and we turned this space into this just sacred what we felt was a sacred space um for mom's actual leaving.

SPEAKER_00
30:11

That sounds beautiful. It really does. Um, I know a friend of mine uh had a similar feeling that your sister had after her mom had passed and they were cleaning out stuff, her and her family, and she just started crying because she felt like she was throwing her mother away, you know, just because it was her things and stuff, and I think that's just a normal reaction to know, like, yeah, okay, I can't I'm gonna keep this, but what do I do with this other thing? You know, it just because it's their things, you know. You just you feel like it.

SPEAKER_01
30:44

I think with my I have one daughter, um she's 40, she'll be 47 in June. Hard to believe. But I um I find myself now at the age of 66. I'm really being careful about what I bring into my house. And um after just going through this experience with mom and seeing how people struggle to um get rid of that the person who's left, to get rid of their belongings, you know, and that feeling that that's a piece of them. But uh I didn't have I'm not attached to things that way. I mean, I'm not saying I don't love beautiful things because I do, but I also um it was it it's not hard. I don't I'm more of a purger than a saver. Okay. And I am helping a gentleman right now go through his house after his wife died a couple years ago. And she they have a big house and they had a lot of stuff, and I don't want my daughter to have to go through boxes and boxes and boxes of stuff. Um I mean, when I leave, I want her to spend her time walking the beach and fossil hunting and being in the woods mourning me, not through getting rid of a lot of collections of things. So I'm trying to be, I mean, just for me personally, it made me very mindful about um what do I really need? And you know, it's funny um because I would say, as I've it's been five years for for me now with mom, and things of moms that she had given me that I thought I would always, I would never part with. Um, she had a beautiful medicine pouch that she was very close with the um the Native Americans in the that lived in that area with the Aboriginals, and they had made her a medicine pouch, and I and she gave that to me, but last year I just thought, I don't need this anymore. I'm done with it. My journey of needing to hold it to feel close to mom is over. And and I asked that I asked my daughter, I said, would you like this? And of course she was like, Oh, I would love to have it, mom. So it's hers now. And you know, and I said, and know that when you're finished with it, when if a time comes where it's not necessary to be in your space anymore, it's okay. Grandma would be fine with that. It's like you don't have to to have this for the rest of your life.

SPEAKER_00
33:27

Yeah, I always I kind of when we were going through my well, we had to do it twice because my dad sold their house at, you know, when she first went into memory care. And then again, it was all her things in her um in her room in memory care. But I always in my mind, I erred on the side of if I wasn't sure, I kept it because I thought, well, I can always go through it and get rid of it later. And I have done that, even with clothes and different things. I'm like, no, I this is okay. I can do this with it. So

Where To Find The Book

SPEAKER_00
33:56

where can someone purchase your book, choosing to die? A daughter's story.

SPEAKER_01
34:01

You can find the book on Amazon, Barnes and Noble, Tertullia. My own website is Teresa with an H, Teresaeevans.com, and you can purchase the Kindle version right off my website. Okay. Um, there you can purchase the audio version from Audible. Okay. It's a beautiful audio version of the book. So uh yeah, all the usual suspects you can find it and on my website.

SPEAKER_00
34:29

Okay. Well, we will definitely put all of that information on there. So thank you so much for joining us today. This has been a beautiful conversation.

SPEAKER_01
34:39

Thank you. I've enjoyed it immensely.

SPEAKER_00
34:42

So I hope everyone has enjoyed this conversation that we've had. So make sure you leave us a review or add us to your subscriptions on uh uh YouTube and hope you enjoyed your cup of coffee, your cup of tea, or your glass of wine, and join us again for another episode of Patty's Place.