Table 3.

Caregiver Guilt: Exemplar Quotes from Spouses and Adult Children by Theme

Theme	Sub-Themes	Exemplar Quotes
(1) Transition to RLTC Facility	Decision to move	I experienced a lot of guilt at the beginning of this experience because I thought mom would go into assisted living, not a dementia unit right away. Did I try hard enough, did I think of everything? It still comes up with me especially when I see people who are home-bound but are successfully living at home. (daughter, 68y) The longer he’s there I know I’ve made the right decision. Because of the care he needs, I know he can’t do it. (wife, 77y)
	Timing of the move	I still feel a little guilty that we made the decision to move her when we did. I keep second-guessing myself. If we had moved her earlier, would she have adjusted better? I need to stop doing that. (daughter, 68y)
		I think the only guilt I feel is when I go down and see him and he is better than when he was at home. I feel like I should have kept him at home longer. But then I leave and the reality hits that I had to [move him]. (wife, unknown age)
	Others’ perceptions of the move	Nell thinks her brother is mad at her. She believes he wasn’t ready for her mom to go to the long-term care center. Nell thinks her brother felt her dad should have done more to keep her home. (daughter, 58y) I have had someone say ‘you should be doing this or that,’ but I just think, ‘You don’t know what you’re talking about, you haven’t been through this.’ (husband, 62y)
	Adjustment of care recipient	When I visit her she seems happy and good. However I wonder how much she realizes about where she is. She thinks it’s her condo, and I just go along with her. (daughter, 54y) He’d love to come home. When he’s acting wonderful it’s all I can do to not pop him in the car and bring him home. (wife, 70y)
(2) Caregiver Involvement	Limits of involvement in care recipient’s care	I was having several small health issues so it’s a lot to get all of those appointments in… Even with an alternating schedule I feel like I’m not doing enough. It’s that guilt. (daughter, 54y) I have not been a very good wife, I haven’t been over there hardly at all [this past week]. My daughter is moving in this coming weekend so I have been cleaning closets for them. (wife, unknown age)
	Level of involvement in care recipient’s care	Maybe [my sister] reads the emails about mom’s condition. I guess if she can live with that, that’s great…Oh, must be nice to just run off and not think about mom. I don’t want to be the one who’s struggling, and maybe they don’t want to admit it either. But none of us really know what each other is doing when it’s their weekend. I know that the others just go on their weekend, not during the week. So maybe I need to let that go. (daughter, 54y) I think my son is a little more standoffish and I don’t know if he likes to admit that his dad has Alzheimer’s. He’s involved in what we do, but I think it’s harder for him than my daughter. (wife, 73y)
	Reasons for involvement in care recipient’s care	My concern is for my kids, I don’t want them to feel that because I’m spending this much time with my mom that they have to. To impress upon them that it’s individual. She cried and then continued, It’s my choice, it’s not an obligation. (daughter, 62y) No matter what, I’m sticking with this til the end, no matter how crappy it is. It’s the hardest thing I’ve done in my life. That’s why I seek out help. (wife, 70y)
	Specific cares	I used to clean up the messes in her bathroom, but now I just don’t. I’m like my mom in that I don’t want to have others work unduly, but I’ve just started calling the aides. I’ve been told that’s part of their job. (son, 58y) For his cares, I don’t do anything… I don’t feel good about it. But I don’t know what more I could do. (wife, 73y)
(3) Visits	Prioritization	I’m a doer. I like to fix things. So sometimes I feel like I should be there more often to be helping… That’s where my guilt comes in sometimes, feeling like I’m not doing enough for her… I think our of visits mother has always been a master of laying on guilt. It’s no different now. (daughter, 69y) I get a little bit more anxious when I should be able to go and I can’t. Or when I’m busy and trying to get something done and then I look at the clock and the whole day is gone. Then I feel bad and guilty. But he doesn’t know, to the best of my knowledge. But I still feel like I haven’t been doing what I should.. Maybe ‘should’ is not the right word. (wife, 55y)
	Frequency or length of visits	Oh there’s always guilt. I’m always feeling like I never spend enough time going to visit. Or if I said I was planning to, and I don’t, then there’s that. (daughter, 59y) The guilt feels like I have a ball and chain. I don’t go every day. People are drooping over in their wheelchairs and it’s depressing. It’s hard to be there.” (wife, 80y)
	Quality or content of visits	I was struggling with accepting that it was okay to maybe not spend as much time with my mom, but when I spend time with her making it more quality time. (daughter, 54y) I go for about an hour a day. I bring paintings in, I do artwork, so she’ll have something different to look at in the room. Try to keep her engaged. That’s about all I can do for her at this point. I feel guilty that I feel like I should be doing more but I don’t know what it would be. (husband, 59y)
	Care recipient reaction to visits	It was hard for me in the beginning, but I’m at the point where I’m present with my mom now and I’m happy with that. I don’t mind when she’s not in the right realm, if she’s talking about her parents. When I bring her a donut and she’s laughing and smiling, it doesn’t matter. She got choked up and then continued, When I tell her about my day, she’ll make these profound statements. She’s still in there. (daughter, 54y) It’s been good. He doesn’t put up a big fuss like he used to when I leave. Just a little bit. It is as smooth as you can expect… I know he’s happy to see us, but it seems like there is no conversation at all that he can join in on. He just talks non-stop about nothing, but I guess at least he’s vocal. (wife, 73y)
(4) Facility context	Quality of care	Guilt that I’m not doing more, that she’s in a place and not having the compassionate care that I would like her to have. I think that’s the big thing, that I am not doing more… Making sure that she has adequate care. Her needs aren’t being met. (daughter, 62y) I’m pretty happy with the personnel there. Everyone seems like they have a good attitude. They are hard workers. My only major malfunction is that they are severely understaffed but I understand that’s an industry-wide thing. (husband, 59y)
	Financial resources	We go over the bill every month, but if she runs out of money, she can’t stay there, they told us. (daughter, 71y) He’s got Medicaid, and we’re waiting to hear back from the VA on their benefits too… It’s terrible, it’s awful. All the paperwork, it’s like a nightmare. (wife, 73y)