Table 2.

Themes, major and minor categories with exemplars

Themes	Major categories	Minor categories	Exemplars
Caregiver experience	Negative feelings	Caregiver task and routines	“I communicate with her consistently. I go to the appointments, probably 90% of the time that she goes with her. I know I, I have, I have a record of what her last visit was like, what came up, where her tumor markings are at, what has changed from the last six months, when her next PET scan.” (#7)
		Illness details	“I would take her to the hospital and sit there with her while she had her treatments done. We realized pretty soon that it was terminal and she volunteered for tests. She became extremely dependent upon me. She didn’t want me to leave the room. She didn’t want to go out anywhere. She was afraid to fall asleep because she was afraid to wake up and I wouldn’t be there. It really became intense.” (#2)
		Impact on daily activity/self care	“It has a great impact on one’s life, in my case. I mean, if I want to go now on vacation, I won’t be able to go with her on vacation because she has that disease of the diarrhea because of the scleroderma, you know, and that we have to watch out when we go out and where we are going out.” (#9)
		Reciprocity	“And one more thing. Yeah. I think, you know, when you become a caregiver for all those years, whether it’s the spouse or a brother that you have to take care of or whoever it is in the family that you have to constantly take care of. It gets to the point that sometimes they take it for granted.” (#9)
		Impact on marital role/relationship	“It’s, I’ve learned, I’ve had to learn how to put boundaries. So therefore, before I felt a sense of obligation because I was his girlfriend, I was his ex-girlfriend, I was his only person that knew the real situation. I always felt obligated.” (#4)
	Positive feelings	Purpose	“It made me happy to take care of her. It didn’t, the stuff I couldn’t do didn’t bother me at all. Yeah, she was my main concern. She was my life. Anything I could do ease her pain.” (#2)
		Life experience/perception	“And just getting to know all the whole, other side of my daughter you know, that closeness that you have with a daughter it’s always there, but when there’s an illness involved, oh my God, that was so much bigger.” (#3)
Coping strategy	Religious coping strategy	Church	“For me going to church is important. Even though, you know, there’s time, to me, I been limited just depending on what my daughter and how she’s feeling.” (#3)
		Prayer	“You know, as far as activities. No, I have not, but the prayers are, my prayers are daily. Yes. My prayers are morning and in between the days, if I feel I’m having to need one and at night times, always, always. Yeah. But activities [religious], really no.” (#3)
		COVID/pandemic influences	“And now with this, COVID, there’s been a lot, a lot of, it’s been a really hard, it’s been really, really, really hard, and there’s a lot of us that are calling each other and, how are you doing? You know, because that’s, we see each other once a year [Sundance]. And it’s really difficult. It’s really, really difficult.” (#4)
		No prayer/Church	“So, I’m not very big on organized prayers saying, you know, the same thing over and over again to me that doesn’t make any sense.” (#2)
		Spiritual activity	“Loneliness for me is not as terrible as what I know other people to suffer, but because like, meditation, you know, is an inward activity. So, it helps you be with yourself and religious activity, and prayer and participating in other groups like in prayer groups, which you have, it helps. It is for me; it is both of those activities are quite important.” (#5)
		No loneliness	“No, I don’t, I’ve never had those situations. I don’t allow my mind to get into that hole there. No, because I’m active and I try to be active and busy. So I don’t get into that hole. No, I refuse to do that.” (#9)
	Active coping strategy	Gambling/gaming activity	“If I ever feel really lonely, I tell them, take me to the casino and that wakes me up.” (#6)
		Physical activity	“For example, I may go do a hike. Then, you know, I’ll do it for like three months” (#7)
		Social support	“Communicating with my siblings about what was going on. I think is well, keep maintaining that balance in my life.” (#7)
		Active (other)	“I used to play the guitar and sing in Spanish and that would help me so much, you know, when I would get my guitar…I haven’t played, played my guitar lately. That would take the loneliness away from me.” (#6)
Loneliness		Uncertainty	“And during the treatments, I was always with her. So, we were kind of sharing those feelings of uncertainty and worry. We shared and helped each other get through it. So, we fortunately were able to do that. So, we got through it.” (#5)
		Feelings of no love	“I feel like I’m not good enough, very low self-esteem. And now like nobody’s here for me. That’s what I feel. Like you’re not loved, like you are, you don’t have it to hold on to. I feel ugly sometimes when I feel that way [loneliness], because those are the talks that come into my mind like, Oh, you are on underserving.” (#8)
Religion to gain strength or support		Religion as social support	“It has opened up for other ways served. So, because, because of my background I am able to help with other things around the church that are not the typical ministries. There’s the technical aspect of streaming all these activities and I’m able to help in there as well. So that’s open somewhere else where we can serve.” (#5)
		Faith	“Well, because you hope that the faith that you have will continue to be there for you and just one day at a time.” (#9)
		Not religious	“But even then, I joke that I was too old for it to really have a grip on me because, you know, I got into it too late. So, I don’t mean, although I love the general aspects, I might believe I don’t, you know, there’s a lot of details that I don’t.” (#10)
		Hope	“That’s a hope but we are real people and I understand that is the diagnosis and I’m just, you know, what is changed is just the hope that she gets better and she doesn’t, you know, she will be in a better place when she passes.” (#8)
		Trust in God	“I try to tell her. But again, I know, I know that one day God’s going to heal her for me. He [God] is. And I just can’t wait for that day, what rejoicing that will be.” (#3)
Spirituality to gain strength or support		Spirituality as social support	“But in general, being spiritual and appreciating things and feeling like that’s definitely a component and the things we’ve gone through, and helping us out, I think that’s, it’s been stronger. Like it’s gotten stronger, but not necessarily the participation in that church, you know?” (#10)
		Spirituality as gain strength	“To classify us in general, we’re not the most religious, we’re not the most religious. And we haven’t been like prior, but I’d say really, if we were more like agnostic, especially me like my position, but I’d say, and that’s like, just since forever. So, but now really, I mean, I’d say if any time we’ve been stronger or more kind of spiritual, it’s has been stronger now than it probably ever has been.” (#10)
		Spirituality as a foundation for life	“So, I’m not a religious person at all. I don’t, however we are, we’re a very strong spiritual person. So, there’s kind of a difference in that. I have a hard time conforming to manmade religion versus to just the spirituality.” (#4)
		Spirituality (other)	“So, I’ve done yoga in the past, but it’s been for short periods of time. I have been more, I have been putting more time into the meditation practice, then I have to go do yoga.” (#7)