Table 6.

Patient and caregiver impacts—sample caregiver quotes

Patient impacts
Activities of daily living	Well, [she] doesn’t toilet herself at all. So—you know I do that. I bathe her, I dress her. I do everything. So—I brush her teeth, her hair. […] Yeah. I mean, I have to cook her dinners, I have to make sure her wash, everything’s done, everything’s picked up clean, just all of it. I mean, it’s day-to-day living. (Caregiver of 25 year old)
School	No, he’s—like if they’re going on a class trip outside and it’s too hot he can’t do that. We can’t go on family vacations in the summer to Florida like his other cousins and his grandmother and everybody just went as a family to Disney. We couldn’t do that because it was just too hot for him to do so it has impacted his social life as well. (Caregiver of 16 year old)
Social/community	Yeah, socially [drooling is] just a huge barrier. We’ve tried so hard to maintain his dignity with bandanas around his neck; he wears like a cowboy bandana. Uh, we send several with him everywhere he goes and it’s just a constant fountain coming out of him. Uh, so adults and children alike tend to have quite a recoil response from physical contact with him, so that’s really sad, because he likes to interact with people and they’re like eeew, drool. (Caregiver of 8 year old)
Caregiver impacts
Mental health	Uh, well, we’re completely depressed, I’m miserable… (Caregiver of 9 year old) …the social isolation you feel…you know, you have friends but you feel very isolated from them. Because their life is nowhere near yours…you feel an isolation. You—it’s a very lonely feeling to be a caregiver. It’s a very scary feeling when you think about the future… But, um, I remain positive. I love my child, and, um, um, I wouldn’t trade him for the world…and I’m blessed with him. But sometimes like it almost feels like you’re a prisoner to—to the syndrome. (Caregiver of 14 year old)
Physical health	Um, I think, other than just it wears you down, it makes you tired. Um, I know that there are a lot of Angel parents who have been doing this longer than me that their bodies are giving out. Um, and that’s something that they’ve talked with me about. [laughter] You know, because it’s like I can feel myself wearing down. But—and they said you don’t know what’s coming, you know. A lot, for some reason, a lot of Angel parents are being diagnosed with MS, and I don’t know why. You know, I don’t know what the deal with that is. So, um, we don’t know what the long-term stress of this life is going to have on our health and how it’s going to affect us, and that’s something that is worrisome… (Caregiver of 8 year old)
Work	[Laughs] Being very, very tired and trying to get lots of caffeine and not be cranky at everyone. [laughs] A lot of times, particularly, I mean my husband actually quit his job to stay at home with her. Um, he tries to buffer a lot of it, um, but it still wakes up, you know, the whole household, so when you go to work with only 4 h of sleep it’s—I don’t feel like I’m giving it my all at my work. I feel very, um, out of it, not thinking correctly. I’ll come home and I’ll be very tired, and sometimes very cranky, and I don’t feel like I’m the mom I should be at home, especially for her and the other kids, because I’m just like I just want to go to bed. (Caregiver of 14 year old)
Home	On a bad day he would—there’s a few hours screaming and destroying property and, uh, making the house generally unlivable. (Caregiver of 8 year old)
Social	Um, it—well, in terms of relationships, we are divorced or finishing up our divorce, so there are impacts in that area. Um, my spouse and the father of my children was not able to handle the situation. Um, he’s not able to handle being woken up in the night and the extra challenges associated with the—a child with Angelman syndrome, as you know. So that’s something that he cannot handle, so we had—um, he’s no longer involved in any way, shape or form and he choose—he chooses not to be… (Caregiver of 8 year old) …There have been times when she’s in a seizure cycle where we’ve been like okay, we’re not, you know, vacation cancelled, we’ll just stay at home and just like hang out, stay in town, just stay near a hospital… (Caregiver of 7 year old)