Table 2.
Themes Characterizing Conflicted Caregiving Relationships
| Disagreement about caregiver level of involvement | “[Caregiver] is the one who talks. She doesn’t let me talk. I’m the one I want to talk. I talk to the doctor about my stomach when I’m not feeling good, but now she’s the one who talks for me.” (#8 patient) |
| “I don’t let [patient] go alone to the doctor’s…. She doesn’t tell the doctor actually what she really feels. That’s why I stepped in. I want her to understand that, whatever she is feeling, let the doctor know, and when I tell the doctor she gets very upset because I am telling the doctor how she feels because he needs to know what is going on.” (#8 caregiver) | |
| “[Caregiver] is too much. He wants to do and answer all the questions. There is no way he can be me.” (#3 patient) | |
| “We have problems because English is not our mother language, and sometimes she gets stuck on things, and I know it.” (#3 caregiver) | |
| Disagreement about one another’s competency to perform disease-related tasks | “[Patient] is talking about her knee surgery. When she was [living] here for three weeks, I [organized] the medications.” (#14 caregiver) |
| “I can [manage them] myself. I would sit here and look what…” (#14 patient) | |
| “She wanted to make sure that I was putting the right pills in [the pill box]. I have the list here, but she wanted to sit here and check it.” (#14 caregiver) | |
| “I did not trust [the caregiver with] pouring the right medicine at the right time and the right days.” (#13 patient) | |
| “One of [patient’s] problems was when you go to the generics. One generic may be a blue pill and the same exact medication may be purple. [Patient] would get upset because there was a purple pill where he expected a blue pill so that led to the problem.” (#13 caregiver) | |
| Underappreciation | “[Caregiver] is trying to treat me as if I am not a whole person right now. I have problems with walking. I have problems with my strength, but [caregiver] feels that, by driving me [to physical therapy], all these things will fix themselves, and that is not the case.” (#13 patient) |
| “[Patient] says no one knows his pain. Well the same thing is true. He has no idea what kind of pain I am in or how fatigued I feel.” (#13 caregiver) | |
| Disagreement over decision-making and disease management | “The doctor doesn’t tell me how many times you have to [check the blood sugar]. Never. They just ask me how the sugar is; that’s it. I do it, but I’m not going to do it three or four times a day. I just do it in the morning, that’s it.” (#8 patient) |
| “But what [doctor] told me is that he wants it and that you should be taking it three times a day. One in the morning, one after you finish eating, and one before you go to bed…. We have disagreements, but she knows that she can’t get away with it because I am right here.” (#8 caregiver) | |
| “I am fighting a gang. [Caregiver], my daughter, and my son…. I was not left with any opportunity to make a decision. They had already called rehab. I didn’t really have any choice.” (#13 patient). | |
| “It was a question of we just didn’t trust you [to perform your exercise regimen at home].” (#13 caregiver) | |
| Use of formal caregiving | “[Caregiver] started to pour [the medications] and unfortunately, I did not trust her. So that is why the nurse is here: to prepour the medications.” (#13 patient) |
| “Patient would get very angry and very upset, so that is when I said we were going to turn [the medications] over to [the aide]. She is going to do it, and then there is no argument…. Now we have an aide who comes in around supper time and makes sure that he takes those pills and then his nighttime pills again…. I was tired of listening to his criticizing and his questioning. It was not worth having to put up with that.” (#13 caregiver) |