Participant ID: P17
Pseudonym: Jacob
Age: 71
Gender: Man
Occupation: Retired truck driver
Living situation: Lives with his 41-year-old son (who has a developmental disability) in a 2-bedroom apartment in Maple Ridge
Relevant context: Widowed 8 years ago; sole carer for adult son with Down syndrome
Interview date: 2025-12-08
Interview length: 32 minutes
Interviewer: R1
Location: Jacob's apartment

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I: Thanks for inviting me, Jacob. Tell me about yourself.

P: Yeah, sure. I'm 71, I drove truck for 45 years, retired in 2018. My wife Pearl passed in 2017. My son Greg lives with me — Greg has Down syndrome, he's 41, he works two mornings a week at the bottle depot and the rest of the time he's home with me. So it's me and Greg, has been since Pearl died.

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

P: This is a funny question for me to be answering, because I'm never alone. Greg is always here. So you'd think I wouldn't be lonely. But — okay, here's the thing. Greg is my son and I love him to death, but I cannot — I can't have a conversation with him the way I had with Pearl. Greg is sweet, he's funny, he tells me about his day at the bottle depot. But there are things I want to talk about — the news, money, what my prostate's doing, whether I should sell the apartment — that I cannot talk to Greg about. So I am, in a way, very alone in those things, even though I'm in a small apartment with another adult all day.

I: That's a striking way to put it. How does it feel?

P: It feels like having my mouth taped shut sometimes. I have things in my head and nowhere to put them. I'll call my brother in Calgary maybe once a month and let it all out for an hour. He's a good guy. But it's a long time between calls.

I: Is it different from being alone?

P: Yes. I think it's loneliness inside companionship. Which is its own thing. People talk about it for marriages but they don't talk about it for parents and adult kids with disabilities. The form is the same. There's another person right there and you can't reach them in the way you need to be reached.

I: Tell me about a recent moment.

P: Last week. The Canucks were playing a big game, and I wanted to watch it with another adult who cared about hockey. Greg watches with me, but he doesn't really track the game, he just gets excited when I get excited. So I'm trying to follow a tight third period and Greg is asking me if the man with the orange hair is the same as the man with the brown hair, and I'm trying to be a good dad and answer him, and I missed a goal. And I just — I just felt so lonely in that moment. Like, I will not, in my lifetime, watch hockey with another man who follows hockey. Not regularly. That's just the math of my life now.

I: Have you found things that help?

P: The neighbour across the hall, Bill. He's 78. We sit out on the balcony together some afternoons, drink a beer. We talk about — anything. Politics, the news, our wives. His wife is alive but she's in a care home. So we're in similar boats. Bill is — Bill is my main social life.

I: What about your son's programs?

P: Greg goes to a respite program every other Saturday, eight hours. Those Saturdays are gold for me. I go for a long walk. I'll go to the library. I'll go sit in a coffee shop and read the paper. The freedom of being a single person for one Saturday in two weeks is — yeah. That's how I survive.

I: What didn't work?

P: There was a — they have these groups for caregivers, parents of adult kids with disabilities. I went once. They were all moms. I was the only dad. They were all very nice but I felt like I was in the wrong room. I haven't been back. Maybe I should try again. I don't know.

I: Have you sought any help?

P: My GP knows the situation. He's offered me, you know, the antidepressant prescription. I've turned it down. I don't think it's depression I have. I think it's a situation. And the situation isn't going to be fixed by Cipralex. I'd rather just feel what I feel.

I: What does your loneliness tell you?

P: That when I die, Greg will go to a group home, and that's the only future. That weighs on me a lot. I want to live as long as I can to delay that. But I'm 71 and my heart isn't great. So the loneliness is also fear, I think. Fear about what happens to him when I'm gone.

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

P: I think of myself as a man with a particular kind of loneliness that comes with the deal of loving my son. I would not undo any of it. I love my boy. But the deal includes this. I don't know that I'd call myself a lonely person. I'd call myself a father.

I: Anything that helped that surprised you?

P: Greg, sometimes. Like — sometimes Greg surprises me. The other week he could tell I was sad and he came and sat next to me on the couch and held my hand. He didn't ask why. He just held my hand for like twenty minutes. He's not — people underestimate Greg. He knows more than they think.

I: If you could change one thing?

P: I'd want more respite programs. Like, way more. The system has, what, an evening here, a Saturday there. Parents like me need way more. We need actual support. Not just for Greg. For us.

I: Anything I haven't asked?

P: Just — I think a lot of older men like me are quietly going through stuff and not talking about it because we were raised not to. So when I say I have only Bill to talk to, I mean that's actually a lot more than most of the men my age I know. Most of them have nobody. Just their wives if they have them, and after the wife is gone they have nobody. That's a real thing happening to a lot of old guys.
