Shownotes
Dorothy—or “Dot” as most people call her—was living in long-term care in Victoria when the COVID-19 pandemic hit. Her daughter, Brenda, visited every day...until lockdown. Dot had her 100th birthday pretty much alone. After six months of isolation, Dot was declining fast—losing weight and becoming more confused. Brenda wasn’t allowed to visit, so she brought her mom home to live with her. This episode is about the tenderness, love and laughter that fill most of their days, and the emotional challenges Brenda encounters when Dot becomes lost in the 1950s, long before her daughter was born.
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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 podcast uses the following third-party services for analysis:
Chartable - https://chartable.com/privacy
Transcripts
This is "Call to Mind," a podcast series from the University of Victoria, audio stories of love and memory loss.
Brenda:My mom is a hundred and she has dementia. She lives with me now. It's been quite a journey to get her here. Never thought that this was a role that I was going to take on. While some days it feels like the tasks and the work and sort of the grind of it all is too much and I want to just crawl into the covers and cry, most days are filled with amazing tenderness and creating memories we would never ever have otherwise. It's an enormous sacrifice to be honest, to give up your life, but I wasn't left with any choice.
Debra Sheets: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.
Brenda:Now open up your blinds.
Dot:Oh, with a beautiful morning.
Lovely. Isn't it?
Dot:Oh, what a beautiful day, I had a wonderful feeling. Everything going my way. [Singing]
Debra Sheets:We're waking up with Brenda and her mom Dorothy, or Dot, as most people call her. Dot was in long-term care in Victoria, and Brenda used to visit her every day, until lockdown. She had her hundredth birthday pretty much alone. Brenda saw her mom losing weight, becoming more confused and she wasn't allowed to visit. So, she brought her mom home to live with her.
Brenda:So, one of the best parts of my day as a caregiver is seeing my mom when she wakes up, 'cause she always wakes up happy. She has her tea and her chair with her heating pad on.
Dot:Lovely. Thank you.
Brenda:Nothing like a nice cup of tea.
Dot:Nothing like a nice cup of tea!
Brenda:...watches the birds at the birdfeeder that my husband put up. And we have her playlist installed and she sings her little heart out.
Dot:There's a clown to make, ....let me down.
I think we were more like best friends from the start because we were very, very close. It was just her and I always. And she was just the mom, everybody loved and turned to. She rolled up, her sleeves got to work and she always sat down on the ground and played. She had never cared about her housework. She was the one that just wanted to play and enjoy life and live in the moment. And that's how she lived her life. And it's how she lives it now with dementia. 'Cause she knows at the moment she doesn't necessarily know yesterday or process what the future might be, but she lives in the moment.
Dot:Now you used to tell me that your mom was homesick after you moved. And that song used to make her sad.
Dot:Yeah.
Brenda:And you told me she used to go sit in the Bush every day and have a cry when nobody could see. Do you remember that?
Dot:I don't remember that. I could see it.
Brenda:Yeah. You said that she had never been away from her family before when you went homesteading. Oh, and she was desperately homesick and missed her parents.
Dot:Yeah. Yeah.
Brenda:And that song, I guess, used to make her cry.
Dot:Yeah.
Dot:Red River Valley ...and the cowboy who loved you so true!
It's interesting for me some days to see the memories that disappear, 'cause they kind of come and go. It's like this weird brain ebb and flow. Once In a while, she spontaneously remembers something that she's told me, you know, the stories my whole life. Like her mother sitting in the bush alone, crying where no one could see her from her being homesick. And then, just now, she says she doesn't remember, but it sounds familiar. But you know, tomorrow that story might pop out of her. The consistent part through everything is always the music. That part of her memory never disappears and it keeps her so incredibly happy and engaged and focused. I just, it's amazing to watch. I never get get tired of it, but it's fascinating to see, you know, how the memories can fade, come back, fade and come back. It's really something. Just another interesting part of being on this caregiver journey with her. I wouldn't get to see all of this if it wasn't for having her home with us. So we're pretty grateful for that. So you never fell in love with a cowboy?
Dot:Not that I can remember.
Brenda:Can you remember boyfriends? Cause you had a lot of boyfriends.
Dot:Oh I had a lot of boyfriends. Yeah.
Brenda:And then you fell for a farm boy named John.
Dot:That's right.
Brenda:Yeah, my daddy. Do you remember how you met?
Dot:I'd have to put a lot of thought into it.
Brenda:Or what about your time skating? You told me that you knew he liked you because he asked if he could walk you home and carry your skates for you.
Dot:Oh!
Brenda:...and you told me how he proposed. Do you remember how he proposed? He asked your parents' permission and then he was over for dinner and he took you outside and you sat on a garden bench that your mom made. He told you, "I love you." And you said, "I love you too." And he said, "do you love me enough to marry me?" And he had a little ring for you.
Dot:Oh God!
Brenda:I'm glad you told me that while you still remembered.
Brenda:It's quite the journey though. Some days I brace and wonder if it's gonna be a good day. Will she remember me? Most days are like that now, but then she gets tired or confused and things kind of crumble and fall apart. But then as hard as that is, and as down as it can lead me to feel, she'll wake up the next day singing "Oh, what a beautiful morning," and everything's great again. So I do a sort of daily reminder that immortality is not the end game. She is going to deteriorate. She is going to leave me someday. But in the current situation, in this moment in time, it's the best option for all of us. And we take one day at a time, one hour at a time. For her, all that matters to me is creating those little moments of joy that I know she doesn't remember, but at the same time on some, some level of her subconscious they're there because we sing together. Even when I introduce new little words or mannerisms, she remembers them. So I know. I know I'm making a difference and I know she's happy.
Brenda:Yeah. You just won two games of solitaire in a row. You'd be ready for a nap pretty soon.
Dot:Pretty soon. Yeah.
Brenda:That's good though. Seems like you like living here with us.
Dot:Oh yeah. I like it here.
Brenda:Good.
Dot:Yep.
Brenda:Yeah. You never have to move again.
Dot:I could lay down, go sleep.
Brenda:Oh, that's that's about an old lady's nap time. It's two o'clock.
Dot:It's two o'clock?
Brenda:Yeah. You can have a nap. Maybe when I'm a hundred, I'll have time to nap.
Dot:A hundred? Oh dear.
Brenda:That's how old you are. You're a hundred.
Dot:Am I? Really a hundred.
Brenda:Yeah. Edna's 102.
Dot:Oh yeah. God, I haven't see us too many times since we were school kids.
Brenda:Oh. That's true, hey. I bet it seems like just the other day.
Dot:Yep. That was way back in Saskatchewan?
Brenda:Yeah. You guys were like twins back then. Oh yeah. Do you remember playing and playing games with her and stuff you used to play? Make believe in the bush. You told me. So Edna was the fancy city lady and you've had imaginary husbands, too. Oh yeah. Ernie. And isn't it Ernie and somebody? Bill maybe?
Brenda:And she would pick leaves and pretend to give you money. Cause you were poor and she was rich. Yeah.
Dot:Well I was always the poor one. Yeah. Oh dear time marches on.
Brenda:Yeah it does. You made a mess.
Dot:Made a mess?
Dot:No, I guess I'll clean it up. You used to clean up after me. You used to clean up after me a fair bit. Now I clean up after you, after me.
Dot:Will I be happy? Will I be rich? .... Que Sera, Sera
So I thought I should get your hair done cause it's gonna be your birthday tomorrow.
Dot:Is it my birthday tomorrow?
Brenda:Yeah.
Dot:Oh yeah. That's right.
Brenda:Yeah.
Dot:And how old am I gonna be?
Brenda:Ooh. How old do you think you are?
Dot:I'm just trying to think.
Brenda:Got any idea?
Dot:Oh golly. How old am I?
Brenda:Well I'm 56.
Dot:You're 56. Yeah.
Brenda:And you're my mom. Your sister's going to turn 103 this summer.
Dot:103?
Brenda:Yeah. So Edna's gonna be 103.
Dot:Oh good Lord.
Brenda:So you're a hundred right now.
Dot:I'm a hundred. Oh.
Brenda:You're a hundred right now. So you're gonna be 101 tomorrow.
Dot:101.
Brenda:Yeah.
Dot:God that's getting up there. Isn't it?
Brenda:Well it's getting up there. Most people don't make it that far.
Dot:Yeah. Lots of people don't. That's pretty, pretty old. I don't feel that old.
Brenda:What do you think? You maybe feel like you're 80? 90?
Dot:Yeah. Maybe in the late seventies or eighties.
Brenda:Oh, well that's pretty good.
Brenda:Oh yeah. Yeah. Cause they say you're only as old as you feel. That's right.
Group Speaks:[Sings Happy Birthday] And many more! Blow your candle. Make a wish of blow your candles. Make a wish of candles. Big breath, big breath. That's cute. Yay! Hold that. Hold your cake. And I'll get your picture. There. Gorgeous.
Brenda:So you had a big birthday today.
Dot:Oh, big wonderful birthday was a big day. I felt really important.
Brenda:Did you? Well you are really important.
Dot:I was the most important one though.
Brenda:Yes you are.
Dot:That's my birthday.
Brenda:That's right. It was your birthday all day long. We could keep you up till midnight. If you wanted to keep the party going.
Dot:Oh no, no, no, no.
Brenda:So where are we at here? I guess it's a good sign. I'm starting to lose track of how many weeks mom's been here with us. I mainly wanted to do this reflection today because I started... So much of my days. I end up with this weird sense of dejavu and I realize it's because it is so much like having a newborn, a small child. You're so torn in so many directions. And I started having this weird sense of dejavu a few days ago. And I realized that I'm in that same mode again. I do tasks and I race around. I get mom occupied and I race around to get my house clean. You know, I wanna, I gotta cook dinner and clean up and then... Oh, there's a load of laundry. Oh my God, my floors are disgusting and I've bathed her and now I need to clean the bathtub. And I realize, no, no, this is just the same cycle all over again. I need to spend time with her because I don't wanna have regrets that I didn't just let my d*mn house fall apart and be messy and play a game of crib or sit with her and look at pictures and sing songs. So I had her in the bath last night and I was in that mode of leave her in the tub with music on the baby monitors on and I'll race around and get laundry done. And then I thought, no, I used to spend three hours every Monday night. I would sit beside her while she soaked in a lavender bubble bath and we would sing songs and we had so much fun and I'm not doing that now. I'm sticking her in the lavender bubbles. Then I'm racing around cleaning my house thinking, "oh, I'll do that next time." So I had a good chat with myself, not to let it be next time just in case.
Brenda:So yeah, you're liking your bath.
Dot:Oh, love it.
Brenda:Yeah.
Dot:Could I stay here forever?
Brenda:No, you stay as long as you wanna soak in that beautiful lavender bubble bath.
Dot:Oh lovely. Yeah.
Brenda:Yeah. I got that chair for you once we knew we were gonna move you with us. Oh yeah. So you can have a soak anytime you want. Yeah. It's a better birthday this year. Last year. We couldn't even see you. You were locked away cause of the virus. It was very sad.
Dot:Yeah.
Brenda:It was a very sad time for me. So yeah. This is much better having you home with us.
Dot:Yes that's for sure.
Brenda:Yeah. Yeah. You sure like soaking.
Brenda:The doctor decided a while back that we would try taking her off of her Alzheimer's medication not knowing if it actually does any good. So, he said, you know, just quit giving it to her. You'll know if it was doing any good, she'll have a sudden, probably onslaught of confusion and it'll take a couple of weeks. But when it does happen, it'll be quite significant. So don't worry. Just put her back on the medication maybe at a half dose. So we've gotten to day 13 and I was busy telling everybody this is great. She never needed to be on that crap in the first place. It's probably just making pharmaceuticals rich. And she was brighter and some of the side effects of that medication had disappeared. And then she looked at me on Sunday evening and said, "oh dear, I didn't tell my mom and dad, I wouldn't be home tonight."
Brenda:And she was quite distressed cause she just doesn't have delusions like that. So I think it was only about 6:30 in the evening. So I just looked at her and said, "well, that's okay. I'll make sure that they know don't worry about anything and let's get you to bed." Tuesday, I had to go out to an appointment and my husband was just gonna watch her on the baby monitor and make sure things were fine if she woke up from her nap. She actually got up, and three times was trying to walk through the house without her walker, which she hasn't done once in the seven weeks she's been here. So, at that point, we realized it was a safety risk. So, she now gets a pill every other day. It was kind of funny to watch your hundred year-old mother genuinely believe that she needed to let her parents know her whereabouts. In some ways it's kind of beautiful. You know, like at that moment in time, she actually gets to be a young girl who needs to talk to her parents and she thinks they're still there. Sometimes when she'll lay in bed, she'll tell me how good her dad was with the animals. If she's thinking about her dogs and her cats and her horses and cows, pigs. You can tell when she goes backwards in time like that, it's actually very lovely for her.
Brenda:Being a caregiver to someone who no longer remembers who you are. It shouldn't matter. But holy crap, it does. Like, I was so tortured and I would feel... I don't even know what the word is. Like it felt thankless. Then I feel selfish and guilty, but it kind of becomes like some days it feels like you're caring for a stranger. Probably one of my biggest emotional challenges was dealing with my feelings around that. I also started to have a bit more empathy for people who put a parent in care whose got the Alzheimer's where it's so full blown that they don't know anybody. And I thought, well, it's kind of easy to see. Maybe, maybe how people might justify that or walk away. I would never do it to her, but I know how hard it is and how it feels.
Brenda:Sorry? What, mom?
Dot:Where did my truck go?
Brenda:Your truck?
Dot:How'd I get here?
Brenda:In my car.
Dot:Oh your car?
Brenda:Yeah. You don't have a truck. I don't think you've driven for a little while. What truck were you thinking of? You said where's your truck? What truck were you thinking of?
Dot:I don't know how I got here.
Brenda:Oh, you came with me.
Dot:And I figured how I'm gonna get back home now.
Brenda:Your home? This is your home.
Dot:Hmm?
Brenda:This is your home.
Dot:Oh, is it?
Brenda:Yeah. Your bedroom's right inside. Do you know? I am.
Dot:No.
Brenda:Not at all?
Dot:Not really.
Brenda:Oh, okay. I'm Brenda, your daughter.
Dot:Oh, oh Brenda.
Brenda:Do you know who? Do you know who that is?
Dot:Oh yeah.
Brenda:Who's that?
Dot:Oh, that's Peter.
Brenda:Yeah. So that's my husband cause I'm Brenda. Oh no, those are the dogs. You live here with me and Peter and the puppies.
Dot:I live here?
Brenda:Yeah.
Dot:Oh.
Brenda:Do you recognize me now?
Dot:Yeah. I recognize your face.
Brenda:Yeah. Brenda.
Dot:You're Brenda.
Brenda:Your daughter.
Dot:Oh my daughter.
Brenda:Brenda Lee.
Dot:Brenda Lee.
Brenda:Yeah. And you know that guy? That's my husband. Peter.
Dot:Oh, Peetah.
Brenda:That's right. Peteah. Yeah.
Some supper.
Brenda:Yeah. Making you some mashed potatoes.
Dot:Wow.
Brenda:You like those. So we'll go back into your room and you can sit and watch some shows and have some supper when it's ready.
Dot:How am I gonna get home though?
Brenda:This is your home. This is where your bedroom is. Well, this is yeah. You live with me and Peter and I'm Brenda.
Dot:I'm all mixed up.
Brenda:Yeah. Sometimes happens. And I'm Brenda.
Dot:You're Brenda.
Brenda:Yeah. And there's Peter. You live here with us. Hmm. Sometimes you forget.
Dot:Oh yeah. The older you getss, the more you forget.
Brenda:That's right. Sometimes that is in fact true. Sometimes it happens.
Brenda:So I managed to catch that. That was a pretty typical incident of sundowning that started around five o'clock. And the part that I missed where I knew it was coming on was that she looked at me and said, "um, when is my husband coming to pick me up?" And she rarely ever mentions my dad. Then as I started this, she asked about her truck, which is kind of funny, cause my mom never drove my dad's truck. But the only truck that would've been in her life would've been my dad's truck and camper.
Brenda:So, somehow my dad came up into her brain and that's what came out. Interestingly, and this time I got it on tape, she always knows my husband, which kind of annoys the crap to me because you know, I am the 24/7 caregiver and he's only been in her life about 18 years. So anyways, he calls it his Aussie charm. So whatever! She knows my husband. Yeah, so that was a pretty good example of how things can go in the evening. So kinda learned to roll with it, even though probably telling her I'm her daughter isn't helpful cause it confuses her. I'm not really sure. I don't know what the best response is, but that's what I tell her. Even though I know it doesn't sink in. So I'm finishing getting her dinner ready and then I will put her in a room with some funny cat videos to eat dinner. And I'm actually surprised it came on like this today because she slept last night and had a pretty good nap, but better than she has in recent days. But hey, every day is a new experience.
Dot:I feel so cozy.
Brenda:You feel cozy. Well, that's a nice way to feel. You look so happy.
Dot:Oh yeah.
Brenda:Happy and healthy and cozy.
Dot:I should get home.
Brenda:Well now you are home.
Dot:Oh Yeah?
Brenda:This is your new bedroom cause you live with me now, right?
Dot:Yeah.
Brenda:Yeah. A long way from the farm.
Dot:I had enough farm.
Brenda:You had enough farm. That's right. And now you're just a lady of leisure, lazy old lady.
Dot:It's kinda hard to not have them.
Brenda:Oh I think you're getting pretty good at it.
Dot:Okay. I asked that!
Brenda:Oh, you told me tonight that I- You told me tonight that I had to get old before I could have a rest. Cause I said I was tired cause I'd done cook two meals, done three loads of laundry, clean the kitchen. And you said, "well you gotta get old to get away from all that."
Dot:Oh dear.
Brenda:Oh, you're funny.
Dot:Oh I am so comfortable.
Brenda:Oh that's good. Well I'm glad and I'm sure. Glad you live here with me now. Yeah.
Dot:Well I am too.
Brenda:Yeah. Good.
Dot:No more working on the farm.
Brenda:Yeah. No more working on the farm. No, no, no. You live with me now and you just can relax and be a...
Dot and Brenda:Lazy old lady, lady.
Brenda:That's what you tell me every day.
Dot:Yup just gonna learn to be real lady. Old lady.
Brenda:Yeah. As long as you're comfortable and you're happy.
Dot:Oh I am good.
Brenda:That's exactly what you deserve.
Dot:I think I earned it.
Brenda:I think you earned it too.
Dot:You are my sunshine. My only sunshine. You make me happy when skies are grey... [Singing You are My Sunshine].
Dot:I got you.
Brenda:You got me. You're hanging onto me. It's right.
Brenda:I said I would share the good days and the bad days. This is a bad day. Mom has what the doctor thinks is REM sleep disorder. So we've tried new meds and the new meds they're just making things worse. Last night, she barely slept at all. But, of course, she thinks she slept. I don't even know the last time I really thought she knew who I was. So I guess that she's somewhere in the maybe mid 1950s, long before I was born. So of course I don't exist and that's really, really hard. So my caregiver came and I just sat parked at the ocean to cry and I wrote a poem.
Brenda:I'm gonna share it because it's really what I'm feeling right now.
Brenda:I miss you, mom. You and. I it's always been my best friend. My rock, my beacon, my home always. I miss you mom. Late night chats talking till you fell asleep. Baby ducks. Butter tarts at midnight memories. You can't remember. I miss you. Mom. Babies. Grandma's house hockey. Nuts pie for breakfast. Our rock. I miss you mom. Didn't my hair used to be dark? Lost names. Unfamiliar faces. Blank stares. My heartbreaks. I miss you mom. Longing for glimpses to hear you say my name. Ask if I'm okay. I'm not okay. I miss you mom. Your smile. Laughter. One liners songs from long ago. You are in there. I see you. Still you, but not. I miss you, Mom. Bracing, gasping, waiting, fearing, losing grieving. Always grieving. I miss you mom. My best friend. My rock, my beacon, my home, my joy, my sorrow, my one and only, I love you mom
Dot:You're funny. You look like you're ready for sleep.
Dot:Yep. I think I am.
Brenda:Good. And now you remember that me and Peter and the puppies are right in the bedroom beside you.
Dot:Okay here?
Brenda:Yep. Right here. So right in the bedroom room beside you. So you're not alone. We're right beside you in the room next door.
Dot:Okay.
Brenda:So if you need anything, you just yell.
Dot:That! You can do that and I'll come running. You just remember you're at Brenda's house and I'm right next door.
Dot:Okay.
Brenda:Okay. I'm here for everything that you need. You don't have to worry and you don't have to think about anything.
Dot:No.
Brenda:How does that song go? What- pack up your troubles in your old kit bag.
Dot and Brenda:Smile. Smile... while you a Lucifer to light your fag. Small boys. That's the style. What's the use of worrying? It's never worth your while. So, pack up up your troubles in your old kitbag and smile, smile, smile...
So you don't have to worry about a thing.
Dot:Sounds good. It sounds good.
Brenda:Okay. I love you.
Dot:Love you.
Dot and Brenda:A whole big bunch!
Brenda:That's what you always told me when I was a little girl. Okay. Goodnight mom.
Dot:Good night.
Brenda:I love you so much.
Dot:I love you a whole big bunch.
Brenda:A whole big bunch. Night night.
Dot:Night night.
Debra Sheets:In August of 2020, a few months after this last recording, Dot passed away with Brenda at her side. The last year of her life was filled with laughter and love in contrast to the previous year of loneliness,
Debra Sheets: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.
