Sometimes, for a myriad of reasons, we just can’t take care of our aging loved ones in their 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, Alexandria’s care home on Vancouver Island. This episode is about a daughter’s love for her mother, right to her last breath.

This 2025 podcast series is made possible by the generosity and creativity of the participants in Mariko Sakamoto's research project, and by the University of Victoria, with support from the Social Sciences and Humanities Research Council, and with Scholar Award funding from Michael Smith Health Research BC/Alzheimer Society of BC.

Go to CalltoMindPodcast.com to see storyteller photos, read episode transcriptions and learn more about our research project.

Host: Mariko Sakamoto, assistant professor of nursing, University of Victoria

Producer: Jenni Schine

Sound designer: David Parfit

Executive producer: Suzanne Ahearne

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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?

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.

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.

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.

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.