Participant ID: P07
Pseudonym: Diana
Age: 52
Gender: Woman
Occupation: Part-time bookkeeper; full-time caregiver
Living situation: Lives with her mother (age 84, moderate dementia) in a single-family home in Richmond
Relevant context: Sole caregiver for her mother for 3 years; one brother lives in Edmonton and is not involved
Interview date: 2025-11-12
Interview length: 36 minutes
Interviewer: R1
Location: Diana's home, kitchen table; mother in the next room watching TV

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I: Thanks for making the time, Diana. Tell me a little about yourself.

P: Sure. Um. I'm Diana, I'm 52, I've been a bookkeeper for 25 years, now I do it part time from home. I'm the primary caregiver for my mother, who has dementia. She — she's not at end-stage but she's progressing. I've been doing this for three years now. And, um, I have a brother but he's not — he's in Alberta and he's not really involved. So it's me.

I: When you hear the word loneliness, what comes to mind?

P: [pause] You know what comes to mind? Cooking dinner for two and only one person remembering it the next day. That's my loneliness. I made my mother lasagna last night, which she used to love, she always used to love my lasagna. And she ate it and said it was nice. And then this morning she asked me when I was going to make her some real food, because I never cook for her. So I — yeah. That's a kind of loneliness I never knew existed before. The loneliness of being forgotten by the person who's right in front of you.

I: That's a very particular kind. How does it feel in your body?

P: Exhausted. I'm — I'm just exhausted. I don't have the energy for much. My back hurts from helping her up and down. I haven't been to the gym in two years. I've gained twenty pounds. I drink too much wine at night because that's when I get my one hour of being a person and the wine is part of how I do it. I know it's bad. I'm not in denial about it. I just don't have a better tool right now.

I: Is loneliness different from being alone for you?

P: I'm never alone. I'm never lonely in the sense of being alone. My mother is right there, all the time. I sleep with the baby monitor on. I have a Life Alert on her in case she wanders, and I get pinged. So the kind of loneliness I have is the kind where you are companied by someone who is no longer — they're not who they used to be. The mother I grew up with is gone, gradually, and the woman in the next room is a stranger I love. So I miss someone who's still alive. That's what I'm dealing with.

I: When did you start feeling this way?

P: It crept up. The diagnosis was four years ago, but the early stages weren't so bad, we'd have real conversations, she'd remember things, she'd ask about my work. Around year two it shifted. Now she — she's pleasant, she's not aggressive thank God, she's just — present without being there. So the loneliness has gradually intensified over three years.

I: What's a recent example?

P: Saturday. So we went to her sister's 80th birthday. My aunt. Everyone was there. And my mother was, you know, gracious, she smiled, she nodded. But she didn't know who anyone was. And I had to spend the whole time managing her — telling her quietly who people were, redirecting her when she repeated questions. And meanwhile my aunts and uncles, they're all there having an actual party, and I'm — I'm doing this caregiving work at a family party. So everyone got to have a party except me. And nobody noticed. They thanked me for bringing my mom. Which is — yes, fine, but. Nobody asked me how I am.

I: Have you found anything that helps?

P: Adult daycare. There's a program at the local seniors centre, three days a week she goes from 9 to 3. Those days are my oxygen. I work, I see a friend for lunch sometimes, I sit in silence in a coffee shop. I don't waste those days. The other days, the days she's home, those are when I struggle.

I: Have you sought any help for yourself?

P: I joined an online dementia caregivers support group. It's on Facebook, there's about a hundred women in it, all over BC. We post about — like, "she hid her dentures in the planter again" or "she called me Mom yesterday and forgot she was my mom and it broke me". And we just witness each other. That's been life-saving. Honestly. Those women on Facebook know me better than my own brother.

I: Have you tried things that didn't work?

P: I tried antidepressants briefly. They didn't agree with me. I tried a therapist but I couldn't sustain the appointments because of caregiving, and also, I'm sorry, but $180 an hour is not something I can do consistently. I tried respite care once, paying someone to come in for a weekend, but it was $1,200 and Mom was upset the whole time and didn't recognise the woman, so I felt guilty and I haven't done it again.

I: What do you think your loneliness is telling you?

P: That I'm doing this without enough support and that I'm going to break if it goes on much longer like this. I think — I love my mother and I will do this for her until I can't. But the system has set me up to do this alone. I am one person trying to do the work of three. And nobody is checking on me. The system checks on her, the home care nurses come twice a week to check her, but nobody checks on me. So the loneliness is partly the structural absence of any concern for the caregiver.

I: Do you think of yourself as a lonely person?

P: I think of myself as a person who is doing a lonely job. The job is making me lonely. When this is over — and it will be over, my mother will die, probably in the next two or three years, and I will be devastated, but also I will be free — I think I will not be a lonely person anymore. I'm holding on for the second half of my life.

I: Anything that helped that surprised you?

P: I started knitting. About a year in. I had never knit anything in my life. My grandmother had tried to teach me when I was 12 and I refused. Now I knit while my mother watches TV in the evenings. We sit in the same room and I knit and she watches her shows and we are — we are companioned in a way that doesn't require words. That has helped me. I have made eleven scarves. Most are not very good. But the act of it. The act of it helps.

I: If you could change one thing?

P: Pay caregivers. Pay us. The amount of money the government saves by not putting my mother in a care home is enormous, and they are saving it on my body. So either pay caregivers, or build more care homes, or — something. The current system is built on women like me silently sacrificing our careers and our health and our marriages and being thanked for it occasionally. It's not okay.

I: Anything I haven't asked about?

P: Yeah. I'd say — when this is over, when my mother is gone, I'm going to need a different kind of help. The kind of help to rebuild a life that's been on hold for five or six years. Nobody talks about that. The post-caregiving cliff. I think that's its own loneliness waiting for me. And I'm trying not to think about it but I think about it.
