| Participant P18 |
Participant P7 |
| ACCESS |
- You don’t know who to refer to... You know, sometimes nurses do it, but...
- I’ve got a friend who’s a nurse and when I had a problem, I called her.
- Well, I still read at home because I’ve got a medical book there.
- Even family doctors don’t have time to tell us. You know they don’t have time to tell us how to prevent that. It’s when it happens that we know. I: It’s a little delicate to think that it’s the family doctor’s role. P: Well, can’t you think? |
- Are there places, you know, for example, the Canadian Cancer Association you’ve got resources, you’ve got places [...] you’ve got Websites [...] you’ve got support, you’ve got support groups.
- I went on the Internet and, uh, that’s it.
- But I dealt with the OT... Because she needed help to eat since she’s partially sighted, and with the tube she couldn’t manage to be coordinated. |
| UNDERSTAND |
- And at the same time I learned that the days that I spent with him, you know. For the ultrasound, I don’t know, he went through tests everywhere.
- I: Ok, so they explained to you what a stroke was. P: Yes, a little, but I didn’t really... I: Understand? P: No, well, yes, I knew that it was, paralysis and all that...
- I: For real, he stayed 10 days at the emergency. P: Uh, in a transition room they called it (I: Yeah) well, it’s still at the emergency?
- If I’d had it right away [the information conference], I think I would’ve been more able to understand the whole process there after.
- I: So that, you had more or less understood what a stroke was. P: But it’s my own training the problem, it’s my training that was... |
- She didn’t sleep at all because I understood that in neuro we, you couldn’t uh, no sedative. But incidentally it got her in real bad shape...
- in sequence mom was hospitalized like about two, three weeks, in ORL, following her surgery for tongue cancer. She went to XXX two, three weeks. There she had aspiration pneumonia so she went back to the hospital and, then she stayed again [...] in ORL that time.
- So, for me, giving oxygen, is it part of a level two, a level three, a level four, I didn’t know. I was just telling myself; I want her to be comfortable. |
| EVALUATE |
- But also I didn’t even know that the first three hours, it matters, the arrival at the hospital because they could give a medication, we don’t know. We don’t know until it happens to us, you can’t know.
- I: It’s the doctor who decided he was going to rehabilitation. P: Ah yes, that he needed it to continue. I: did you have anything to say? P: No. I: Didn’t they ask for your opinion? P: No [...] No, it’s alright because they know better than me. |
- If I hadn’t been there, she wouldn’t have had nothing during the first three weeks that she was there, so in the three months we’d lose three weeks. Uh, so I thought, that it wasn’t, the person is not treated as a whole.
- So for me giving oxygen, is it part of a level two, a level three, a level four, I didn’t know. I was just saying to myself that I wanted her to be comfortable. [...] helping her to breathe , yes there, I don’t want her to suffer, but in a way I went with a level that if I had known, it wouldn’t have been that level that I would’ve chosen, I would’ve expressed myself differently. |
| COMMUNICATE |
- I: They showed you some tricks. P: Well I was watching. I: Ah, you observed.
P: Well yes, well, I asked them how to do it. They don’t have time to show you, I don’t think so. I don’t think so, not at the hospital.
- P: Even sometimes, I had them [questions] asked by... I: By your spouse. P: Yes, that’s it, himself goes further than me in all this.
- Now, I have a lot of little questions. But it’s about, especially in his head, his neurons and all that, I, because it gets reattached apparently. I have questions about that.
- I. [...] I don’t know if you’ve made remarks, comments to the team, [...] P: Well I’m not, nor my spouse, it’s not, you know it’s the person who’s gonna wait, who will be patient, who won’t say a word.
- But I had her do her exercises when she, after breakfast, when I was there or at supper
- And you know I even took him to do the groceries, walking a little since he had to walk more more more more all the time. |
- But I had all my wits and I wanted to know what was going on. So I was there and I asked questions. Sometimes it must be bothering for them I think. But I was given answers.
- The instructions from occupational therapists were not necessarily read. Sometimes we’d put them on the stove, on the the, the wall. Uh, like Help Ms to eat. Because my mother is partially sighted.
- It was more through nonverbal [...] the team of doctors [...] answered my questions at some point, towards the end I’d think, well, I won’t ask any more questions, ‘cause I feel I’m getting on their nerves a little[...] we’d leave quickly.
- What I would have liked is maybe, I don’t know if it’s possible, but maybe, uh, if there are multidisciplinary meetings. |
- I was afraid she’d end up under guardianship and all that. So that, it worried me and that’s when I call on the social worker.
- like the 3-months range, you know, that, when I discovered that, of course I pushed when she changed teams at the rehabilitation center or even when she came back. I pushed for her to see an occupational therapist or physiotherapist.
- I was proactive in all that. I’ve been proactive. I’d get the information. I didn’t feel like they were to give me any.
- I had things done, but I’m the one who took the initiative. |
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