Table 2.

Roles of family members and friends were fluid over the course of illness (Theme 1)

No.QuotationSubjectRelationship to Patient
1I always go to the doctor with her. Every time. And I sit in on anything … almost all her visits, I go. And then when they are talking, I listen carefully because I know from her bad hearing … she can sit there and you think she is following something just fine, but she didn't hear any of it.Subject A, woman in her 60sDaughter of a woman in her 90s not on dialysis
2That was back in March … that whole year, my whole year, my whole life was spent trying, praying with him, being there with him, it was a long, hard year … I couldn’t go no place, I couldn’t do anything. I was there. He wanted me there … almost every day. And I would be so tired, I would say “Grandma’s getting tired” … I kept getting tireder and tireder. Finally he started getting to where he could take care of himself … When he was kind of out of it and didn't know about it, I made the decision. But now that he is awake and alert … and knows what is going on I let him make it because he should be the one to make it. I am just there to support him, with whatever he does. That’s what I do.Subject B, woman in her 80sMother of a man in his 60s not on dialysis
3I just wish I had been a bit more with it when he first went, because I let him go on his own. Yeah, until I found out that he wasn’t telling the doctor the truth. When she’d say “How are you?” he’d say “Oh, I’m fine.” … He would come home and he’d still be in the same position. Still feeling the same way. And I would say, “What did the doctor say?” “Nothing” and then I realized he wasn’t telling her anything. Of course she didn’t tell him anything. She’s not a mind-reader. (Probe: did you start going to the appointments then?) Oh yes. And he didn’t know that I wrote things down. So when … she said “How are you (patient’s name)?” And he said “Oh, just fine.” I said, “Excuse me!” And he looked at me and I started reading what I wrote down. Yeah, he about had a heart attack when he realized that I wrote everything down. Yeah … .From then on, he never got to go to the doctor by himself. I was there all the time.Subject C, woman in her 60sBereaved wife of a man in his 80s who had been on peritoneal dialysis
4OK, well my husband knew for a period of time that his kidneys were failing but he didn’t tell me until he had to pretty much go on dialysis … he just didn't. He just doesn’t like people to ask lots of questions and so he just chose not to tell me until, you know, his kidneys were failing more … and then I started going to his doctor appointments with him.Subject D, woman in her 60sWife of a man in his 60s on peritoneal dialysis
5And the thing about my son is that he is a very private person and he does not share a lot, even with me (I’m probably the closest person to him) and he is even reluctant (I have to pull stuff out of him). I can only do it in a casual manner … it bothers him to have to be sick and to have to talk about it … For a while after that … we could all of us (his older daughter and I) could talk to him about that. But now he doesn’t really involve her in anything.Subject E, woman in her 80sMother of a man in his 50s not on dialysis