Table 2.

Summary of Domains and Themes

Quality of Life Trajectory	Domain	Quote
Declined	Emotional (subtheme: emotional impact of patient’s illness on caregiver was negative)	“The responsibility is wearing. It’s a feeling that I’m responsible for this other human being in terms of all of these decisions. Are my decisions right? Who knows? Who knows?” “It was good up until the time that she was hospitalized and was in the – having the crises that basically led to her death. I was depressed, I was scared, I was overwhelmed. I didn’t want to deal with it. I had this feeling of kind of black hole-ness. It’s like I went to go and deal with her and if she was not completely compos mentis I was scared and felt like I wanted to run away. So it was hard, very hard.”
	Social (subtheme: less time for self)	“You don’t have time for your friends. You feel frustrated; you don’t feel like you ever get any rest and you never get a vacation from it. I don’t know, it just consumes your life basically. I get depressed because, you know, I have nothing to look forward to. I mean I can’t go to movie. I can’t sneak out occasionally. I think in eight years I think I saw about two movies.”
	Financial	“I’m single and my mother has no money so this is all my savings, right. I’m juggling. My life is not easy.” “I tried for years to try and get respite care. I called every agency I could think of. It was impossible; I could not get it. I could not afford it and I couldn’t get financial help with it.”
	Physical (subtheme: caregiver’s health declined)	“I tried to give him the best quality of life that I thought he should have, which was a superior quality of life, but in exchange I gave up a lot of my own health.” “I think it’s been a bad thing in that – physically it’s been a bad thing. It’s hard to tell exactly whether ten years going from 57 to 67 I would have deteriorated physically as much as I have and I think that the confinement and the repetitive lifting, moving, pushing her wheelchair, things like that are hard on the body. So I think there’s been definitely a decline in my physical health.”
No Change	Subtheme: feeling a filial duty to care for a loved one	“I think it’s my responsibility to care for them. You only have one mom and dad in your whole lifetime. So I want to do the best of my ability.” “I mean I know my priorities. I know what’s right and what’s wrong. I know what needs to get done and be done. So I go and do it cause I know that’s the right thing to do. She’s family.”
	Subtheme: Minimal responsibilities as a caregiver; having help	“I’ve been taking care of him at home with the help of the VA. They send in caregivers in the morning and caregivers at night.”
	Physical: (subtheme: QOL was consistently poor over time (i.e. never improved)	“It’s very hard to explain unless you’ve walked that road. It’s relentless. It is incredibly stressful and especially when you’re one person and you’re a sole caregiver.” “That’s really wearing because to get her up, get her dressed, get her fed, help her take a shower, get the wheelchair in the car, drive six miles to the doctor’s office in Los Angeles traffic, go up into a waiting room in a doctor’s office and no matter how much they love her have to wait because it’s termed a “nurse visit” so that she can have a finger stick and have them say, “Great, you can go home,” is really super wearing and then you have to do the whole process in reverse. It’s real wearing and it eats your whole day.”
Improved	Emotional (subtheme: caregiving was rewarding)	“When I give my mom a bath or rub her back I just am joyful to do it and it’s a blessing to me that I can do that for her. I think to be a receiver of a gift you have to be a giver and that’s probably improved my life a lot, made me a better person.” “I felt fortunate that I had the time and the independence to care for my dad and considered that a gift to be able to give to him because I chose to, not out of obligation but as he had always given to me and to our family. And so my quality of life was even better than it was before because of having the gift to give him such a gift.”
	Subtheme: caregiver became easier with time and experience	“Along the way when I learned more and just got used to it and got into a routine. I learned more about what worked and I learned more about myself and I learned more about how to – just basically to relax more myself and not be so tense. Just to go with it, go with the flow.” “And we had – we got along extremely well and we had our layout of things that, as I was explaining earlier, that we would do and the longer – the longer I provided care for him for me it became a lot easier in order to do it. And it became better as he became more adjusted to it and more accepting.”
	Subtheme: having institutionalized care/financial resources helped	“She’s safer with the support from living at the assisted facility whereas before when she was living on her own, I think she fell. I would worry about her eating properly, taking her medications because I wasn’t going to be there 24 hours around the clock with her. I never knew what was going on when I went over there. Now there are people that are kind of looking out for her. In terms of her safety and security, I think it’s safer where she is now. However, at the same time, she has to share her room with her roommate so she doesn’t have her own place and her own privacy” “Financially I can’t say that right now it’s been a problem. I mean my father does have good health insurance through his retiree pension so that has not been a major problem. As I said, I’m able to support him. It does not create a financial problem for me if I do need to help him out.”