Season Two: Episode Four

Transcript

Mariko Sakamoto 0:04

This is Call to Mind, audio diaries of love and memory loss. I'm Mariko Sakamoto, assistant professor of nursing at the University of Victoria, and host of Call to Mind. This podcast series is a deep dive into the experiences of caregivers. It's about the importance of being heard and being listened to. Here we bring you intimate audio diaries recorded by caregivers of family members living with Alzheimer's and other forms of dementia.

Marjorie 0:36

This is Marjorie on a beautiful spring day in Campbell River, BC, and I've just got off the phone talking to my mother, who's in long term care. Mom is 88 years old and has vascular dementia, and she just moved into the long term care home a month or so ago. And every time I talk to her, I just cry after we hang up. Our conversations are super short. She always tells me she's in a special meeting or she has to go. Then I tell her I love her, and sometimes she says it back, and sometimes she doesn't. It's about a 45 minute drive to where she's staying, and I get to see her tomorrow. It's like she's a toddler off into school, only this is at the end of her life, not at the beginning of her life. And when I call and I hear she's having lunch, I just want to be there with her, and I can't. I miss my mom. I miss who my mom was.

Marjorie 1:53

It's a long road ahead, or maybe it isn't. I don't know. I always talk to other people who have loved ones who have dementia compare notes, but I guess I don't know what we're comparing our sadness and our loss.

Mariko Sakamoto 2:13

Sometimes, for a myriad of reasons, we just can't take care of our loved ones in their own home... or ours. But caregiving doesn't end if a family member moves into long term care. Marjorie's story shows us that we can continue to support our loved ones, to advocate for them, and journey alongside them wherever they are. Marjorie recorded this audio diary over a period of about six weeks, mostly in her car driving to her mom's care home on Vancouver Island. This episode is about a daughter's love for her mother, right to her last breath.

Marjorie 2:54

Okay, so I'm driving down the highway. I'm the leaving Campbell River on my way to Courtenay for a surprise visit with my mom. Surprised me because I didn't think I was gonna have time to visit her today on the way to Victoria. I'm actually on my way to Victoria to go start taking care of things in her house, going through her papers, going through her worldly belongings, to pack up that part of her life. Her birthday is coming up. She's going to be 88 and I've got a beautiful bouquet of lilacs, and those have always been our special flowers with each other. Our birthdays are one day apart, and we always thought that lilacs came to bloom, especially just for our birthdays. So and I'll be getting there in time for lunch, and I haven't had a lunch with my mom in a long time. So I'll bring my knitting she can eat, and I'll just have a nice little cozy little visit with her. I'm really excited.It's different between anticipating a visit and actually having a visit. I haven't quite put my finger on what that means just yet, but all I know is that my heart is singing because I get to see my mummy today.

Marjorie 4:03

I've just gone to see mom at the care home. I brought a thermos of tea and a couple of muffins, and we had a little impromptu tea party in the garden. Then we were joined by a couple of other residents, and, you know, it was kind of nice to sit in the garden. I notice a real, a real decline in my mom in the short time she's been here. She's looping around quicker. She doesn't really talk about her stories anymore. Her voice is kind of thin and weak, and she's kind of like a shell of who she was really. And I was just thinking, as I was just about to drive out, that if she could have looked in the mirror 15 years ago to see this is where she would be, I don't think she'dvery happy with that. There's not a lot going on, activity wise, in her mind, it would seem. And she's somebody who always really admired her intellect. She had an amazing vocabulary and was quite proud of herbrain power, and now it's just a different story. She's very sweet and all that, but I don't know how she would feel, and I guess there's no point in that, because this is where she's at today. I love her, whether she's ...however she is, but it makes it hard to visit her for long periods of time, because there's not much to talk about. And I guess it doesn't matter what we talk about. I just want her to know that our time together is fun and nice. So I try to do that, and then off I go. I don't bother calling mom anymore because she doesn't hear that well on the phone, so there's no point, and she usually just hangs up on me anyway, so there's no point in that. So I guess for now, our visits are twice a week, and I just pop in and see her and and then I leave, and she's kind of indifferent whether I'm there or not. But I'll keep visiting.

Marjorie 5:59

What am I really thinking about my mom? Here's what I'm really thinking about my mom today. I'm off to see her, and I have no idea who she's going to be today. You know, is she, is she participating in the morning activities, or did she go to bed and have a nap? She seems to be spending a lot more time napping and less time participating. And I wonder if she's going to be one of those people eventually that they just wheel into the hallway and put in a reclining chair, and then they just sleep all day in the hallway while everybody walks around them. And I guess I haven't really prepared myself for that to be my mom one day. But if she lives long enough, and as the Alzheimer's ravages her brain, I guess that's what's going to happen. So, one day at a time, today, she's able to get up out of her bed and do things. I have no idea what her her purpose is on a daily basis.Her purpose for the last couple years, well, she spent a great deal of time just getting the shopping done, because it required taking a bus, doing the shopping, and then getting home in time for the the groceries delivered, and that took it all out of her. That was her whole sense of being. That and cleaning. She prided herself on a clean house, but now she's doesn't have a house to clean, nor does she have anything to cook, and she doesn't knit. So I just wonder what she thinks her purpose is. She asked me, am I in an okay place? And I say, Yes, you are, mom. You're in a very good place. But do I believe it? I have no idea. Yeah. I wish that I were in a position where she could live in my house and shell peas for the family dinner. But that's not the case. I don't even have a house. I don't have a home. I'm pretty transient myself, so and my brothers and I weren't able to provide that with her. So she's in an institution. She's living her life in an institution. I have no idea what her daily purpose is, but the truth of the matter is, she's disappearing right before my very eyes, those stories that used to drive me absolutely batty. Do we have to hear that one more time? I would give anything to hear one more time

Marjorie 8:08

I'm sitting in my car. I just had a visit with my mom. I was here for a couple of hours at her long term care home,and I watched her have her lunch, and then I took her out shopping. She just sat in the car, really, and then she didn't want to get out of the car when it came time to take her home, she just wanted to stay in the car. And so I cajoled her to coming back into the lodge. And then I walked her to her room, and she didn't want to stay in her room. She wanted to come back to the car. And then she said, "pleeease" like a little child. And that's when I realized that I had needed help to leave today. I just couldn't say goodbye to mom, so the care aides, they distracted my mom and told my mom that they were going to show me where the bathroom was, and off I went. I kissed her on the forehead and said, "love you, Mom." Every time I see her, there's a big change lately. She acts like a little girl. She doesn't talk about the past, she doesn't talk about the future. Her birthday is coming up. She's going to be 88 in a couple of days. My birthday is right the day before. And it's always been her story that our birthdays were together. But this year, I think it will be the first year where she's not aware it's my birthday. I'm going to be 61 and, yeah, it's the first year that no card, no happy birthday from mom. But we're gonna go celebrate her birthday, because she's 88 and that's a big deal. So I thought I was gonna leave her really happy, just because we were having such a good day. But then that little whimpery voice when she said "pleeease" that she really wanted to come back to my car. It does made me sad, because that's not possible today. She lives here. I live somewhere else.

Marjorie 10:11

My 61st birthday has come and gone, and this was the first year that mom didn't remember my birthday, and for all the other birthdays, for as long far back as I can remember, she would always tell me the story about the day I was born and how thrilled she was to have a daughter after giving birth to two sons. And this was the first year that I didn't hear that story, and I used to get kind of annoyed. I'd think not that story again. But you know what? I would give anything to hear that story out of my mom's lips one more time. And it's not going to happen. My brother and I went to celebrate my mom's birthday at the care home, and we had a really nice time. Mom was, I don't even know if she was really aware it was her birthday. She kind of went along with the flow. But what warmed my heart My mom, she stretches out her arm and she goes, "these are all my friends,"pointing to all the residents of the care home, and that just warmed my heart, knowing that well, just for that moment, she felt like she was part of something bigger. And I guess that's what I hope for my mom, that in the care home, is that she feels connected and part of something bigger.

Marjorie 11:21

It's July 11, and it's a beautiful day, and I'm walking on the Kennedy trail. It's a loop around the Campbell River that I try and do most days. It's just gorgeous. And so today I'm walking solo, and I'm thinking about my mom, how's she doing? Sort of been thinking about her life. And you know, for as long as I can remember, at least in the last 25, 30 years, Mom has been deathly afraid of getting dementia. She thought that she could kind of control it so that she would never get it. And then, ironically, that's what's going on in my mom's life, and now she has dementia, and she is in an institution, all the things that she didn't want is happening. Yeah, and that part makes me really sad. I don't know. I don't see in any other way around it. I just want her to feel connected. I can't be there every day. I go there as much as I can. And what happens is that she's had a really good day. when I'm seeing her, and I think, oh good, she's she's settled and she's happy. The thing is, the last time I saw her and she wasn't happy, she was having a bad day. She was in a wheelchair, and she was confused. She couldn't hear, she couldn't see, and she was kind of having a miserable day that day. So ever since then, I think, oh, maybe she's not doing so well. So I hope when I see her tomorrow that she's having a good day, so I can have some nice memories of her having a good day, rather than not having a good day. I wish I could take this away from my mom, but I can't. It's her, it's her path, and I just wonder how long it'll be like right now she knows who I am, pretty much, with the exception of last time, she lights up when she sees me. I hope that we can continue to lift each other up and light each other up. It's not an easy path we're on.

Marjorie 13:49

So, I spent the last two afternoons for hours at a time with my mom. She's really gone downhill. I got a call from her nurse practitioner saying that mom was, you know, losing lots of energy, and she was on a downward slope. And so the nurse practitioner, pragmatically told me that we're looking at weeks and maybe months left for mom. So I took my knitting and I hung out at my mom's bed yesterday. And then I went again today in the afternoon and just sat with her, and just the decline from yesterday to today was just incredible. So yesterday, mum could at least sit up, and I would call her, oh, you're just a tired little pussy cat. And she would just giggle like a little girl. She really liked being called a tired little pussy cat. And today, when I called her a tired little pussycat, she just whimpered, and then she grabbed my hand and held it really tight, but she didn't say a single word, really. I kissed her goodbye and and had a long talk with the nurse. And she's not quite palliative, but she's getting close. So the end is closer than we thought, though without knowing how long the end is. So, but on the weekend, I'm gonna have a sleepover with mom and sleep beside her, and hopefully I can do that. We don't know. It's hard to say she's just going downhill so quickly. Will she be around on the weekend? I don't know. Yeah, but I would like to have a little sleep over, wear my pajamas and sleep with her and listen to her do her little, cute little snores that she does. So it's coming close to saying goodbye to my mom. It's been the long goodbye. Yeah, I don't know what to think about that. I call it the long goodbye, and it's, it's just been such a rapid change in the last three or four months. All downhill, all what she could do last week, which didn't seem like very much, seems like amazing compared to what she can do today. Yeah, I love my mom, and I'm grateful that she was my mom and made all the sacrifices for me. And I wasn't always the best daughter, but I'm trying to be the best daughter I know how to be. And had I've been trying to be the best daughter for the last 14 years, since I got sober, yeah, living amends. Well, my little pussycat, hopefully I can see you tomorrow.

Marjorie 16:35

I don't know if I can do this or not, but I'll try. It's about 10 o'clock at night on June 18, and I'm having a sleepover with my mom at the care home. Mom's in palliative care. She's not eating or drinking anymore. She's just sleeping like a little pussy cat at peace. And I get to spend the night in a couch beside her bed and listen to her sleep. And I've got to go to work. I won't be here till ...for a few more days, so I don't know if she'll be here when I can get back again on Saturday. We'll see. She's got a deep, steep decline. So the time up is up with my mom, and I'm just overwhelmed with gratitude.

Marjorie 17:51

To top it off, on the day that I officially find out my mom's in palliative care, I got a lung cancer diagnosis, and I'll be having surgery in four weeks. Mom won't be there for that, that's for sure. So her journey ends. Mine begins. Her journey ends here. Who knows what she's on to next. I hope it's beautiful things ahead for her. Who am I caring for now?

Mariko Sakamoto 19:05

Since her last recording, Marjorie has recovered from her surgery and is planning a celebration of life at a place her mom, Alexandria, loved. Her ashes will be spread on a beach, accompanied by family and bagpipes.

Mariko Sakamoto 19:25

Family caregivers are the lifeblood of the healthcare system for people with dementia. By 2030, it's expected the number of people living with dementia in Canada will be close to a million. This journey is different for everyone, whether you're a caregiver or know someone living with dementia, we hope this podcast series gives you a deeper understanding of the family caregiving experience.

Mariko Sakamoto 19:47

This series is part of a research project that explores storytelling, different ways of listening and the power of being heard. It's made possible by the University of Victoria, with funding from the Social Sciences and Humanities Research Council to see storyteller photos, access episode transcriptions and learn more about our research project, go to our website, at call to mindpodcast.com. And for caregiver resources and to find local supports and services, go to alzheimer.ca.

Mariko Sakamoto 20:20

This podcast series was produced by Jenny Schine. Sound Design by David Parfit. Executive Producer, Suzanne Ahearne. And I'm Mariko Sakamoto, assistant professor of nursing and a research affiliate with the Institute on Aging and Lifelong Health at the University of Victoria. Thanks to other members of our podcast team, including research coordinator Paulina Santaella, and our research assistants Cole Tamburri and Cynthia McDowell. Technical support, Bruce Devereux and Mendel Skulski. The founder of the Call to Mind podcast is Debra Sheets, professor emerita of nursing at UVic. And of course, I want to thank all the research participants who generously shared their time, stories and experiences as part of this project.