Table 2 Burdens of Living with Diabetes in the Nursing Home

General comments about diabetes and diabetes treatments

“In general, [diabetes has] been the pits. It’s got me slowed down.” (#15, Male, 73)

“It’s just not being able to do everything that I used to do and…not being able to [eat] all the stuff I used to eat.” (#4, Male, 68)

“I think we underplay the burdens and overestimate the benefits [of treatment.]” (#6, Male, 47)

Dietary restrictions and the diabetic diet

“I have a nasty sweet tooth; as soon as I figure out which one it is I’d probably pull it.” (#2, Male, 66)

”You just can’t go out after a movie and have a milkshake and it means being constantly aware that there [is this thing] to be dealt with.” (#13, Male, 69)

“Well I don’t like the food they put in here period; it’s putrid and it’s–I don’t eat what they give me, I eat other food” (#5, Male, 79)

“I can’t have sweets and fattening food and stuff like that you know? That was all the food I like.” (#4, Male, 68).

“All I have to do is stay away from anything with sugar in it and I don’t do that real well either. I figure they’re just going to stick me with more insulin anyway. But I know I can have sugar; I just can’t sit there and eat a pound of it at a time. So I get little bits of it—just enough to keep my mouth shut.” (#2, Male, 66)

“They just feel like, ‘I want to eat what I want to eat’…If you’re in a skilled nursing home, there are not too many things that you have control over. [Food] is one of the few things that they still have some control over.” (#8, Female, 50)

“If you were to look at surveys of what is important to people in nursing homes, food is really going to always be very near or at the top. Restricted diets, I think, really contribute to a diminished quality of life in many cases.” (#6, Male, 47)

“I think a lot of patients have a hard time with a true diabetic diet because it’s so unpalatable at times. My one patient with diabetes … was always like super happy with his incredibly bland meals but then was secretly ordering out so I think his actions spoke a little louder than his words.” (#4, Female, 32)

“There’s a lot of [residents] with a lot of candy sitting in their drawers. But if that’s what they need for their quality of life I think that’s OK.” (#3, Male, 37)

“I’ll call [one resident’s wife] and say, ‘He’s doing this and this,’ and she says, ‘Yeah, I understand.’ I’ll say, ‘You know this is what’s going to happen.’ And she says, ‘Yeah, I do but I’d rather have him happy.’” (#2, Female, 41)

Loss of independence due to diabetes

“[Diabetes] put me in a wheelchair and that’s been hard to get used to and it seems like I need more care to take care of myself than I used to. I used to be more able-bodied and be able to do more things for myself.” (#10, Male, 66)

“Yeah I used to do a lot of activities, but now I slowed down and I don’t do as much activities as I used to do…I don’t have the energy for it… Participating in different sports like I want to, go out in crowds; I don’t do that no more.” (#3, Male, 74)

“Many of the people we get now are much sicker so… it's often hard to manage them because we want to give them freedom to eat what they want and to go out with their families or whatever while controlling their diabetes. It's difficult to manage both.” (#2, Female, 41)

Fingersticks and insulin injections: Strong Dislike

“The finger sticks…drive me nuts.” (#8, Male, 86)

“Just painful, annoying…too much…they should find a way either before or after you eat and stick to monitor it. In between doesn’t make any sense to me.” (#2, Male, 66)

“There are a lot of folks who just really don't want finger sticks and you just really need to negotiate with them some sort of a schedule.” (#9, Female, 36)

“The most frequent complaint that I get from them is the fact that they are pricked so often. Once they are on a stable regimen, we do try to cut down on the fingersticks.” (#10, Male, 44)

“Some people are more vocal about it than others but I think if you ask most of my patients they would say that [they want] to be checked less frequently.” (#9, Female, 36)

Fingersticks and insulin injections: Annoyance/Don’t mind

“You never feel good about [fingersticks]…it’s an annoyance.” (#4, Male, 68)

“One never gets used to them but they need to be done.” (#13, Male, 69)

“It doesn’t hurt that much no, just a little dab and that’s it. I put up with it.” (#3, Male, 74)

“It depends…Some of them just don’t like needles. Some have been getting finger sticks for most of their lives so they’re used to it; it’s not a big deal. (#5, Female, 32)