Episode 4

Hosted by Debra Sheets, a 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).

Storyteller bios and episode transcripts to come

This 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.

Transcript

Debra Sheets, host 00:04:

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

Wendy 00:28:

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.

Debra Sheets, host 00:59:

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.

Debra Sheets, host 01:13:

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

Judith 01:37:

Are you really my daughter?

Wendy 01:39:

Mm-hmm <affirmative> I am. I am your daughter.

Judith 01:47:

Oh, that's nice. <laugh>.

Wendy 01:53:

Yeah, it is nice.

Judith 01:54:

So I'm your mother?

Wendy 01:55:

That's right. You're my mother.

Judith 01:57:

How did you find me?

Wendy 01:59:

That's hard. How did I get here?

Judith 02:04:

Yeah, get here.

Wendy 02:05:

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

Judith 02:10:

Mm-hmm. What's that thing for?

Wendy 02:14:

It's recording our conversation.

Wendy 02:21:

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.

Wendy 03:08:

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.

Judith 03:54:

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

Wendy 03:58:

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.

Judith 04:17:

Did I make my bed?

Wendy 04:18:

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 <laugh>.

Judith 04:32:

Hope you don't get too frustrated with me.

Wendy 04:36:

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

Judith 04:45:

Is it bedtime for you?

Wendy 04:47:

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

Judith 04:51:

I'm sorry.

Wendy 04:52:

That's okay.

Wendy 05:14:

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.

Wendy 05:43:

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.

Wendy 06:22:

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.

Judith 06:49:

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

Wendy 06:53:

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

Judith 06:59:

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

Wendy 07:01:

Okay. So, whose room is this?

Judith 07:05:

That's mine.

Wendy 07:06:

And where is, where is it?

Judith 07:09:

I don't know.

Wendy 07:10:

That's your home.

Judith 07:11:

I wish I was home.

Wendy 07:12:

You are home. This is your home.

Judith 07:14:

Yeah, but I'm not home.

Wendy 07:18:

Well, what's home to you?

Judith 07:21:

Well, I'm certainly not at home in this.

Wendy 07:26:

But this doesn't feel like your home?

Judith 07:27:

No, it isn't my home.

Wendy 07:29:

Does it look like your home?

Judith 07:31:

No.

Wendy 07:33:

Whose desk is this?

Judith 07:37:

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

Wendy 07:39:

Okay. Yeah.

Judith 07:41:

I want to go home.

Wendy 07:43:

Yeah, but where do you think your home is?

Judith 07:46:

Where it should be.

Wendy 07:48:

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.

Judith 07:59:

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

Wendy 08:03:

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.

Judith 08:16:

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...

Wendy 08:26:

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

Judith 08:35:

No.

Wendy 08:35:

No?

Judith 08:36:

No, no.

Wendy 08:37:

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

Judith 08:43:

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

Wendy 08:48:

This is where you are living.

Judith 08:51:

No.

Wendy 08:52:

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

Judith 08:55:

Okay.

Wendy 08:58:

Okay. Get your Walker.

Judith 09:00:

But it won't be what I want.

Wendy 09:02:

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

Wendy 09:15:

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.

Judith 09:48:

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

Wendy 09:57:

The pandemic?

Judith 09:58:

Yeah.

Wendy 09:59:

Well, do you know what the word pandemic means?

Judith 10:04:

Well, it means something around the world.

Wendy 10:06:

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

Judith 10:15:

No.

Wendy 10:16:

No? Okay. Well,

it's a virus. We are waiting for the immunization for it. It's called COVID 19.

Judith 10:25:

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

Wendy 10:29:

Yeah. Or they'll come here.

Judith 10:32:

Have they started doing that?

Wendy 10:35:

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

Judith 10:43:

Seems so strange.

Wendy 10:46:

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.

Judith 10:55:

So I could die anytime then.

Wendy 10:59:

Yeah, well you're 85.

Judith 11:02:

Am I that old?

Wendy 11:03:

Yep.

Judith 11:04:

I don't even think about my age. <laugh>.

Wendy 11:09:

No.

Judith 11:09:

I don't even know that it exists.

Wendy 11:13:

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.

Judith 11:25:

What's COVID again?

Wendy 11:26:

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.

Wendy 11:51:

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.

Judith 12:10:

This is my son.

Wendy 12:11:

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

Judith 12:14:

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

Wendy 12:18:

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

Chris 12:24:

Get your boxes.

Wendy 12:28:

Get your boxes here.

Chris 12:32:

Get your boxes over here.

Judith 12:32:

It's so good.

Chris 12:33:

Get your boxes and your cinnamon buns.

Judith 12:35:

Stop it. Oh, I need a laugh.

Chris 12:39:

Pizza box. Box of Pizza.

Judith 12:41:

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

Chris 12:43:

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

Wendy 12:49:

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?

Wendy 14:15:

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

Judith 14:19:

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

Wendy 14:21:

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

Judith 14:27:

We just take the ends off. Right?

Wendy 14:28:

Mm-hmm

Judith 14:29:

Like that?

Wendy 14:29:

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

Judith 14:35:

Just snap it rather than oh.

Wendy 14:35:

Just see where it snaps. There.

Judith 14:39:

Perfectly.

Wendy 14:41:

You're okay doing that?

Judith 14:42:

Yeah. Okay.

Judith 14:43:

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

Wendy 14:47:

I live here.

Judith 14:48:

Yeah. Oh dear.

Wendy 14:51:

Oh dear? Are you okay?

Judith 14:52:

It's my back.

Wendy 14:53:

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

Judith 14:56:

Might go sit in the chair.

Wendy 14:59:

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

Judith 15:06:

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

Wendy 15:10:

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

Judith 15:13:

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

Wendy 15:20:

Mm-hmm.

Wendy 15:37:

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.

Wendy 16:37:

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.

Judith 17:27:

Poor you.

Wendy 17:29:

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

Judith 17:30:

I want to read.

Wendy 17:30:

Are you sure?

Wendy 17:31:

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

Judith 17:35:

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

Wendy 17:40:

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

Judith 17:46:

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

Wendy 17:50:

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

Judith 17:52:

Yeah.

Wendy 17:53:

Okay.

Judith 17:53:

Yeah. But I didn't do anything.

Wendy 17:56:

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

Judith 18:03:

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

Wendy 18:07:

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.

Judith 18:15:

Yeah.

Wendy 18:16:

Thank you.

Judith 18:17:

You're welcome.

Wendy 18:20:

Nightie night.

Judith 18:20:

Good night, dear.

Wendy 18:26:

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.

Judith 19:14:

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

Wendy 19:20:

Not really.

Judith 19:21:

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

Wendy 19:27:

Read the paper.

Judith 19:29:

Mm-hmm.

Wendy 19:29:

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

Judith 19:35:

What garden is there?

Wendy 19:37:

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

Judith 19:40:

I can't, can't.

Wendy 19:42:

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.

Judith 19:49:

I'll be able to do some gardening?

Wendy 19:51:

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

Judith 19:55:

I like gardening.

Wendy 19:56:

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.

Judith 20:05:

Well, where is the garden?

Wendy 20:06:

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

Judith 20:12:

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

Wendy 20:14:

To dig in the ground?

Judith 20:15:

Yeah.

Wendy 20:16:

Yes.

Wendy 20:19:

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.

Wendy 21:01:

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

Judith 21:07:

Okay.

Wendy 21:08:

Okay?

Wendy 21:09:

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

Judith 21:15:

Yep.

Wendy 21:16:

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

Judith 21:18:

Oh, I'm alright.

Wendy 21:19:

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

Judith 21:22:

Okay. Yeah.

Judith 21:23:

Keep turning around until you can hang onto the bar.

Judith 21:26:

Okay.

Judith 21:26:

There you go. This is so silly.

Wendy 21:35:

You know that pandemic?

Judith 21:36:

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

Wendy 21:43:

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

Judith 21:51:

Did I?

Wendy 21:51:

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

Judith 21:59:

How come?

Wendy 22:01:

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.

Wendy 22:19:

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

Judith 22:25:

No, I didn't.

Wendy 22:27:

So you demanded that I get you a treat.

Judith 22:31:

Oh really?

Wendy 22:32:

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

Judith 22:38:

Yeah?

Wendy 22:39:

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

Judith 22:42:

Did I why?

Wendy 22:45:

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

Wendy 22:52:

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.

Wendy 23:38:

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.

Judith 24:27:

You're my mother?

Wendy 24:28:

No, you're my mother.

Judith 24:32:

What do you mean?

Wendy 24:33:

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

Judith 24:37:

Oh, are you my mother?

Wendy 24:41:

No, you're my mother.

Wendy 24:43:

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

Judith 24:50:

Who is my mother?

Wendy 24:51:

Your mother was Helen.

Judith 24:54:

How did you know that?

Wendy 24:56:

You know it's a lot to remember.

Wendy 25:00:

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.

Wendy 26:18:

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?

Wendy 27:18:

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.

Wendy 28:05:

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.

Wendy 28:54:

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

Judith 28:59:

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

Wendy 29:05:

Oh, let's see. We'll do this one? <plays "Let me call you sweetheart" on the piano>.

Judith 29:15:

What's that? Who's here?

Wendy 29:25:

Chris.

Judith 29:25:

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

Wendy 29:25:

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

Wendy 29:44:

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

Judith 29:53:

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

Wendy 29:56:

Mm-hmm yeah.

Judith 29:59:

Yeah.

Wendy 30:01:

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

Judith 30:07:

That's a nice.

Wendy 30:10:

And meadow flowers. <piano continues>

Judith 30:11:

Yeah.

Debra Sheets, host 30:26:

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

Debra Sheets, host 30:31:

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.

Debra Sheets 30:31:

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.