Three years ago, Wendy closed her commercial cake business in Vancouver to move back to the Cowichan Valley on Vancouver Island to live with her mom, Judith, who had also been a baker. In this episode she and her brother make sourdough bread and cinnamon buns to sell locally as they care for their mother and try to help her cope with growing confusion and sadness. This episode is about the need for self-care, digging in the garden, and digging up old family secrets. They unearth the meaning of home and how our memories shape us.

--------

To see photos, episode transcripts and caregiver resources, go to CalltoMindPodcast.com

Call to Mind is hosted by Debra Sheets, nursing professor and researcher with the Institute on Aging and Lifelong Health at the University of Victoria.

Produced by Jenni Schine (jennischine.com); sound design by David Parfit (davidparfit.com); executive producer, Suzanne Ahearne (UVic.ca).

This four-part podcast series was made possible by the University of Victoria, with funding from the Social Sciences and Humanities Research Council, The Alzheimer’s Society of Canada, The Alzheimer’s Society of BC, Michael Smith Health Research BC, and BC SUPPORT Unit Island Centre.

This is "Call to Mind," a podcast series from the University of Victoria, audio stories of love and memory loss.

I'd love to get into the world of coaching people who look after people with dementia cause there's certain things that you learn along the way. And one of them is you take every minute of respite.

Hello. I'm Debra Sheets, a professor of nursing and host of Call to Mind. In this series, people living with dementia record audio diaries and conversations about their lives during the pandemic.

We're here with Wendy and her mom, Judith, in a rural area on Vancouver Island. This episode is about the need for self-care, digging in the garden, and digging up family secrets. They unearth the meaning of home and how our memories shape us. There's some difficult content here. So, take care while listening

Are you really my daughter?

Mm-hmm I am. I am your daughter.

Oh, that's nice. .

Yeah, it is nice.

So I'm your mother?

That's right. You're my mother.

How did you find me?

That's hard. How did I get here?

Yeah, get here.

Well, this is your home, and it's my home now, too. I've lived here for almost three years.

Mm-hmm. What's that thing for?

It's recording our conversation.

My name is Wendy. I'm 61, moved over here from Vancouver after shutting my business down and laying off employees and leaving my kids. Now I live with my mom to look after her. It wasn't totally what I wanted to do, but somebody had to do it. I'm the only girl on both sides and that's what happened. Right? So I had ended up coming over here. When I left Vancouver, I had a custom cake business. So I was like the cake boss. So I did all that kind of stuff. Mom was a baker and made sourdough, breads and cookies and stuff and sold them all through here, around the Cowichan Valley. So I knew coming over here that I had a commercial kitchen that I could use.

Well, life does that. Right? You just open a door and then you do whatever's behind that door and sometimes you don't know what's behind that door, and you still have to keep doing it. You know, you can't go, "Uh, actually, I changed my mind now." You can't do that, right? Well, you could, I guess. Mom's dementia has been progressing and progressing. She also has a bad back, so she's pretty limited with her mobility. So that's been, three years of the most unbelievable eye-through-the-needle part of my life.

Yeah. I'm ready for bed, but I was ready for food too, yeah.

When you went to bed, you weren't hungry. So I didn't give you a snack, but then you got hungry and then you thought didn't know what time it was. So you thought it would be a good idea to get dressed and make your bed.

Did I make my bed?

Yeah, you got dressed and made your bed. It's midnight. So now you got back in your pajamas and you're having a snack .

Hope you don't get too frustrated with me.

No mama. Well, I mean, sometimes I do sure. Especially when it's bedtime for me .

Is it bedtime for you?

Well, yeah, it's midnight. I prefer to be in bed before midnight.

I'm sorry.

That's okay.

I've always had a piano and, yeah, that's been part of my - I don't know. The thing that saved me in a way is being able to sit down and play the piano for her, too. So, I play every day and, sometimes, I play songs that she sings along with and I sing with. Other times I play my music, which is pretty much classical music.

I think she always wanted to take piano lessons, but she never. We didn't have much money. So, she put my brother into some piano. He didn't stay too long, but I was in piano. So that piano - that's there is when I bought for her a number of years ago, and then she took piano lessons. It was kind of cute at her recitals, because she'd be the oldest and she'd play duets with the youngest. It was pretty cute. She used to be a school teacher. She taught first for some time. So, one of her favorite things to do is to sing songs with the kids. So she's always loved, yeah, loved singing.

My dad had Alzheimer's and my mom has vascular dementia. I knew something was up when they stopped playing piano. My dad played every day and, one day, I mean we knew something was wrong with him. But, one day, I went over to his place and I saw his piano keys were dusty. That's when I burst into tears because I knew something was really wrong.

Well I do have a home, but I'm not in it.

Well, look around. Well, look at around this room.

Yeah, yeah. I know what it's like.

Okay. So, whose room is this?

That's mine.

And where is, where is it?

I don't know.

That's your home.

I wish I was home.

You are home. This is your home.

Yeah, but I'm not home.

Well, what's home to you?

Well I'm certainly not at home in this.

But this doesn't feel like your home?

No, it isn't my home.

Does it look like your home?

No.

Whose desk is this?

Well I know whose it is. It's mine.

Okay. Yeah.

I want to go home.

Yeah, but where do you think your home is?

Where it should be.

Okay. If you come outside to the living room area and you look, you'll see that it's your home. Right outside, there is your copper beach tree.

I don't. I don't understand this.

I don't know how to help you mom. I don't know how to explain it to you, but this is your home. You know, you look that's your bedspread right there. This is granny's desk and this is your own home.

Well, I'm lucky to have this stuff here to keep me from being sad. But this is not the home I want to be in. Which is...

Do you think the home that you want to be in is the one that you were in when you were a child?

No.

No?

No, no.

It's just a feeling. Isn't it?

I want to be where I was living. And why aren't I now?

This is where you are living.

No.

Yeah. Do you want to come out down the hallway and look in your living room and look?

Okay.

Okay. Get your Walker.

But it won't be what I want.

Okay. Well let's have a look. Just let's have a look and see if it is what you want.

She's terrified at times. Terrified. Why am I like this? What's wrong with me? What's gonna happen to me? You can't stay here forever. At night, she's terrified. You know, I give her comfort and let her cry. And it becomes circular. It just goes around and around and around. Yeah, but music's great. If she's really upset about something, sometimes I'll just drop everything. Go sit down, play the piano. And before you know it, she's reading the paper.

New singles face pressure. Find love in the pandemic. What? What's the pandemic again? What does it come from?

The pandemic?

Yeah.

Well, do you know what the word pandemic means?

Well, it means something around the world.

Yeah. So there's this virus that's going around the world called COVID 19. Do you remember? We talked about it.

No.

No? Okay. Well it's a virus. We are waiting for the immunization for it. It's called COVID 19.

Uhhuh. So do we have to go to the doctor to get a needle then?

Yeah. Or they'll come here.

Have they started doing that?

Yep. Millions of people have been immunized already all over the world.

Seems so strange.

So that's all we're doing now is waiting for the immunization and we're also hunkered down because it's winter. It's freezing cold outside.

So I could die anytime then.

Yeah, well you're 85.

Am I that old?

Yep.

I don't even think about my age. .

No.

I don't even know that it exists.

Yeah. So you're not gonna die from the virus. You're not near the virus and we make sure that we take all the necessary protocols. So COVID hasn't affected us much.

What's COVID again?

COVID is that virus. The pandemic we're talking about. It hasn't affected us very much. I mean, it certainly has. That's what has had Chris come here. So Chris and I have been able to be here together to look after you and the house and the property and run our little bakery.

My brother and I look after mom. I'm the primary caregiver. You know, we left home when we were teenagers. He went one way and I went the other. We've connected throughout the years, but over the years it's been very little contact.

This is my son.

That is your son. That it's your son, Chris. Uhhuh.

I sort of realized that you guys are working hard here.

We are working hard here. We're selling our wares, our baked goods and our flower boxes.

Get your boxes.

Get your boxes here.

Get your boxes over here.

It's so good.

Get your boxes and your cinnamon buns.

Stop it. Oh, I need a laugh.

Pizza box. Box of Pizza.

I don't know what I've been doing or what...

Sourdough. Pizza in the box. Pizza in the box...

So that's been interesting, too - getting to know each other more. It's brought up a whole bunch of stuff to deal with us from our childhood. It's interesting when there's things to go through and the person who you could talk to about it, you can't talk to anymore. That makes it very difficult. Mom had a horrific accident when we were teenagers. A couple of months ago, Chris and I were talking about that because it's not something that really has ever come up since. We realize that's where our family took a tumble and never really recovered from that. So we haven't been able to talk to her about her suffering. I've spoken to her about it in the past, but before dementia, but very little. We used to wonder why she was the way she was. But now as adults looking back, the damage that accident did to our family was bad. And I kind of wanted to talk to her about that, which I can't do. Right?

Well, how do you feel? What would you like to do?

I'm alright. Just I need - you need to tell me what to do.

Okay. Well then let's take the ends off the asparagus.

We just take the ends off. Right?

Mm-hmm

Like that?

Well, can you snap it there? Cause that's where you kind of take the ends off is where you snap.

Just snap it rather than oh.

Just see where it snaps. There.

Perfectly.

You're okay doing that?

Yeah. Okay.

I'm so glad you're here. Well, I don't know.

I live here.

Yeah. Oh dear.

Oh dear? Are you okay?

It's my back.

Oh mama. Why don't you go sit down though?

Might go sit in the chair.

Yeah. Yeah. That's your chair. Are you winded? Are you out of breath?

Yeah. I don't know why I feel so sad or so.

Yeah. I don't know. You seem to be extra sad.

Well, I'm so glad you're here. And you've been here all along. Haven't you?

Mm-hmm.

I mean, do you want to hear this story? I mean, I don't care sharing it. So what happened was I'm at high school waiting to get on the school bus and we saw the ambulance come to the hospital because it was just a half a block from school. We're all, you know, craning our necks to see what's going on. And the school bus driver, when he opened the door, I could see something was wrong with him. And I said, "what's wrong Don? "And he said, "oh, I'm so sorry, but there's been an accident. But your mom's fine. Your mom was in the accident. Your mom's okay. It's just somebody else was hurt." But he knew what one had died and another child who was severely injured. What had happened is he stopped the bus to let the kids off and the kids waved my mom to go and she's driving a big farm truck. A crew-cab, huge, huge crew-cab truck.

She was a school teacher. She told the kids to go and they said, "no, no, you go." And she said, "you go." And they said, "you go." So she thought, okay, I'm gonna go cause you're not going. And they went and she went. So then the bus came around the corner and you could see down the hill. I could see the police cars and the truck was sideways. When I got home, mom was in bed, she was all tranquilized. I had to cook dinner that night and I remember burning the pork chops I could just, you know, the seared memory of - I couldn't even cook the pork chops right. Right? And that was the beginning of the unraveling of our family.

Poor you.

Okay. You can't. You have, you have to lay.

I want to read.

Are you sure?

It's midnight. Okay. You cannot get back out of bed.

I won't cause I don't need to pee. I'll just read.

Where'd your newspapers go? I brought you your newspapers in.

I didn't see. Oh, you didn't see it?

Oh good Lord. Okay. You gonna read that book then that's besides you?

Yeah.

Okay.

Yeah. But I didn't do anything.

That's okay. I'm not gonna worry about that. I'm going to turn this light out.

I'm sorry. I feel like I'm ruining your life.

No, you're not ruining my life. I've got a good life. Sometimes a bit stressful and okay. Do not get out of bed again.

Yeah.

Thank you.

You're welcome.

Nightie night.

Good night, dear.

I think I've learned from my mom. It's not a good lesson. I'm not saying this is a good thing. I tolerate a lot and that hasn't been a good thing in my life. So I've learned how to persevere. Maybe that's what it is. I've learned perseverance and that's not actually - I don't know that perseverance is a trait to be all that proud of actually. In some ways it is, but I certainly did learn a bit of martyrdom from my mom. And I'm working hard at not being a martyr here. So yeah, perseverance, absolutely a good thing in some ways and really not so good in others.

I just forget things. There's nothing to forget around here. Really.

Not really.

Well for me anyway. Yeah. Get dressed and do what?

Read the paper.

Mm-hmm.

Eat your meals. Write bike, dig in the garden as much as you can. The weather's getting nicer and nicer.

What garden is there?

I'll show you tomorrow. We have huge gardens here.

I can't, can't.

Don't worry about it. Don't please. Don't get yourself all stressed out. Just eat your banana and I'll show you in the morning. You'll see.

I'll be able to do some gardening?

Yeah. It's gonna be bit chilly tomorrow, but yeah.

I like gardening.

I know. That's why I've built up the garden. So you'd have gardens to garden in. But now your back is so stinking bad that you can hardly do anything.

Well, where is the garden?

It's all around the house. So tomorrow I'll show you. Now you need to get it into bed.

Yeah. But we'll be outside in the ground?

To dig in the ground?

Yeah.

Yes.

Before COVID, we had care coming in four times a week. So I had four groups, four blocks of four hours of respite, which is a lot. I was able to get that. One of the problems with that is that it's always somebody different, which isn't good for someone with dementia. Right? Because I'm getting paid to care for her, we're burning through her money really fast. Cause I need to earn an income. I'm not giving up my earning years cause I can't. If I could, I would, but I can't.

So now, you're going to stand up and I'm going to help you out of the shower.

Okay.

Okay?

Yep. This bar here and then this half on this bar that gives you stability to step out. Okay?

Yep.

All right. So hang on. Keep hanging onto the bar.

Oh I'm alright.

No, no. Keep hanging onto the bar so I can draw you off.

Okay. Yeah.

Keep turning around until you can hang onto the bar.

Okay.

There you go. This is so silly.

You know that pandemic?

I don't know much about the pandemic. I see the word, but I haven't seen anything. What it's about?

There's this virus called COVID-19. You had your vaccine.

Did I?

You were the first person who was scheduled for their vaccine in the Cowichan Valley. The first public person.

How come?

Well it just turned out that way. But then you got bumped by this woman who works for VIHA. She works in a care home, but I almost pushed her out of the way because I wanted you to be first in the door.

But you were not a happy camper when we went. No, cause you didn't want a needle.

No, I didn't.

So you demanded that I get you a treat.

Oh really?

Yeah. So I said if you were a good girl, I would get you chocolate.

Yeah?

Right. And you weren't a good girl. You cried.

Did I why?

Because you didn't want a needle, but I got you the treat anyway.

I don't know. I don't think it's right for people to not look after themselves. There are days when I don't get out of here, especially when COVID started and my brother wasn't here. You know, I know what that's like. I know what it's like after my mom had her knee surgery and couldn't walk for weeks and I had to change her diapers and I had to feed her with a spoon and you know, I know what that's like. Self care. So important. Yeah. People with dementia, they say stuff that is cruel and awful, and you gotta take a breath. You gotta turn around and walk away.

Like we still have good moments. So in those moments, I love those moments. And you know, the other day we were laughing and playing a game. And I said here she is! Here's my mom. And then she disappeared. So she shows up every once in a while, and I love that. It sounds cold and harsh. But if I was emotional around her and grieving the loss of my mom all the time, I couldn't care for her. I couldn't, I couldn't care for me. Right? So yeah, you lose your person before you want to.

You're my mother?

No, you're my mother.

What do you mean?

You just said you're my mother. And I said, no, you're my mother.

Oh are you my mother?

No, you're my mother.

This is a radio show. Who's on first?! You're my mother. No, she's your mother.

Who is my mother?

Your mother was Helen.

How did you know that?

You know it's a lot to remember.

Every relationship is a relationship and it doesn't matter whether you're a spouse or a daughter, you have incompletions and you have wishes and frustrations. It's just like having kids. It's even more difficult with a parent because, with a child, they're in the world of learning and it's our job to raise them and teach them. But that's not when you're dealing with an adult who knows what they want and knows what they like, and they're losing their mind. I was thinking about this the other day, is there anything I'd say? There's nothing I haven't said to her. I guess I would tell her, I wish that she wasn't going through this, but I can't tell her that now because she doesn't know what I'm talking about. Right? Yeah. I wish that she wasn't going through this. She knows that I love her, and she knows that I'm grateful. But I wish she wasn't going through this

I guess what I would want to tell her is that I forgive her because she was really unhappy a lot of her life and I could never, we could never figure it out. No, she didn't want to do things like take us tobogganing, she didn't want to help us make our Halloween costumes or she didn't like Christmas. I could never figure out why. When I was raising my kids, I was always doing those things. She used to say to me, "I wish I was a better mom," but I could see why snuffing out somebody's life, even by accident, like what do you do with that?

I mean, what you do with that, right? And how can you without therapy? How could you bring joy to your kids when you've taken another kid? Right? Another child. I mean, we had a great life. We lived together after she left my dad, we shared an apartment. We shared a house. We've traveled, we talked everyday on the phone. There was one point where I said to her, "Okay, we have to talk every other day on the phone cause I have to start getting used to not talking to you every day. Because one day I'm not going to be able to talk to you. Right?" So we've always been like sisters actually, yeah. We were very, very close. It's not like we've had estranged life at all. We've been very, very close.

I guess that's what I would do is I would let her know that she did the best she could with what she had. Sometimes she'll sit in her chair and she'll say, "I think I've been a bad mom. What did I do?" Oh, we just say, "No, you are a great mom." She goes "No, no. Oh something I did wasn't right." So it's interesting. A thing I've learned about dementia is the emotions stay and the memories leave. Even now, if she starts crying about something, when she finishes crying later, she'll go, "Was I crying? Why? I feel sad? Why was I sad?" Yeah, she can remember that, but just not the memory.

All right, mother. How you feeling? You feeling a little better?

Well, sad but I don't know why I'm sad.

Oh, let's see. We'll do this one? .

What's that? Who's here?

Chris.

He's my son. And you're his brother?

I'm his sister. He's my brother.

You read your paper, eat your grapes. I'll stoke the fire.

I'm so glad you're here, but you've been here all along.

Mm-hmm yeah.

Yeah.

So I picked up a bunch of sweet pea seeds today and -

That's a nice.

And meadow flowers.

Yeah.

In the fall of 2021 circumstances changed and Judith is now living in a care home close by.

This podcast series was produced by Jenny Schine. Sound design by David Parfit. Executive producer, Suzanne Ahearne. And I'm Debra Sheets, professor of nursing and research affiliate with the Institute on Aging and Lifelong Health at the University of Victoria.

Caregiving is hard, even though it brings joy and meaning. We hope this podcast gives you a deeper appreciation for family caregivers. Thanks to other members of the podcast team: our research assistants, Ruth Kampen, Cynthia McDowell, Matt Cervantes, and Chanel Mandap. And thanks to the Voices in Motion choir in Victoria. To see photos, read storyteller bios, and access episode transcriptions, go to our website at calltomindpodcast.com. And for more resources and supports go to alzheimer.ca. This podcast series was made possible by the University of Victoria with funding from the Social Sciences and Humanities Research Council, the Alzheimer's Society of Canada, the Alzheimer's society of BC, and Michael Smith Health Research BC.