Table 3.
Core Themes with Descriptive Examples
| Theme | Descriptive examples |
|---|---|
| Core theme #1 | The need for individual attention and support |
| “In the caregiver's group that I go to, one of the things I wasn't liking that they are doing a little better with is they always talk about their husband, or son or whoever it is that has Parkinson's. We just…as women, we are taught anyway not to talk about ourselves and to be the focus of attention. And it's like if somebody asks me: How are you? They just work their way into my heart. That's what I need.”—Female, 63 | |
| “Just that it would be nice if once in a while they would allow us to vent to you guys. Like that. And it's awesome. And I mean I don't know what is going to happen with all this…but it's still nice for me to be able to vent.”—Female, 62 | |
| “Parkinson's is a very flamboyant disease. People notice it. People notice tremors. They notice dyskinesia. They notice this person looks a little strange. Whatever. And I think it happens a lot…Only two people have asked how are you? To me. How am I? It just doesn't happen. It is always how is Steve? How is he doing? There are two of us…if all 4 of us get together—how are you doing Steve? Blah, blah, blah. They never, ever ask, how am I? And I think that would be helpful if someone gave a damn how I am. Because right now, and a matter of fact, I am more disabled than he is. No one knows it.”—Female, 63 | |
| “I think at the beginning I needed to talk to somebody.”—Focus group | |
| “I think, ‘I am not the patient’, but the bedside manner would expand a little bit to the family. Because you almost want to tell the doctor, ‘Look. You don't live with that person. You have no idea.’ I feel like that sometimes, depending on the doctor. You have no idea what is going on.”—Female, 60 | |
| “I just need someone to talk to. Cause my children don't want to hear about this. You know? I've had enough and I don't want to burden them. They've been very kind. But they don't quite see from my perspective”—Focus group | |
| “This is great! Talking to you is like therapy! Talking to you is like the best time I've had in 10 years!”—Female, 62 | |
| “So I've got several different groups, which are really important to me to keep that up. I mean it just keeps my interest into other things. It gives me something else to do…I think you have to have something, or you kind of go crazy.”—Female, 70 | |
| Core theme #2 | Education needs and helpful resources |
| “There is communication that we need. Somebody to prepare us, because the time is going to come when we can no longer keep our husbands and wives at home.”—Focus group | |
| “Like I'd want to know, what are the possibilities? What are the problems? Because they have been in the health profession for a long time. They have seen hundreds of patients. I have only seen one.”—Female, 60 | |
| “Yeah. And I'm quite worried about side effects…and I have to study that. I have to figure out what is the medicine going to do in the long run.”—Female, 60 | |
| “More information as to what to expect medically, you know, from the professional…what can you impart to me that can help me a little bit, should something come up? I get afraid that I may not know what to do. And quick, right now, something is going on. What do you do?”—Female, 60 | |
| “Maybe something on teaching caregivers how to deal with that [referring to falls]. How to help them fall. I mean you can't catch them, cause you'll hurt yourself. But helping them fall so they don't hurt themselves or you. Or anything else. Right. Or…any of the first aid…I mean I have to be First Aid, CPR trained… but they don't teach you some of that stuff for specific issues. And if he does get hurt or have a bad reaction to the medication, worse than some of the one's he's had…what do we do?”—Female, 51 | |
| Core theme #3 | The consequences of motor and non-motor symptoms |
| “His memory. Forgetting the pills. Not being able to figure out—I've shown him 1,000 times—how to use his phone and how to make appointments. Those kinds of things. It's just like…you know, at this point, I'm just like, it's ok honey. I'll show you. It's ok. But Oh…it'd be nice if he just got it. But he doesn't.”—Female, 62 | |
| “He doesn't remember things. That's an issue for us…I'm a little more alert day or night. And when I first heard that was what was going on, he'd had an accident with the car and finally the Neurologist just said, give me your keys. And that was devastating to him. And later he feels like he's a burden. And that just breaks my heart.”—Focus group | |
| “But he is forgetting. And then there was a period of time where we used to live, he would get out and walk by himself. But he didn't always pay attention to the traffic. And scared me half to death, so I got to locking the door. But he could unlock it. But now where we are, it is very secure. So I can sleep, knowing he is up, which I couldn't before. So I was losing sleep. And I had a heart attack about 3 years ahead of all that, so I was still recuperating from that. And so…it just got overwhelming.”—Focus group | |
| “The tremor. When I'm trying to sleep. Otherwise it doesn't bother me that much, otherwise. Just when I'm trying to sleep or something.”—Female, 80 | |
| “When he has dreams. No, he actually has dreams and he is kicking a football or whatever…So you know, I don't sleep”—Female, 70 | |
| “Parkinson's is a very flamboyant disease. People notice it. People notice tremors. They notice dyskinesia. They notice this person looks a little strange. Whatever. And I think it happens a lot…Only two people have asked how are you? To me. How am I? It just doesn't happen.”—Female, 63 | |
| “The cognitive and the diminished intelligence. It frustrates me! Even though I know it is part of the disease, it's just frustrating to have to deal with it. Because he used to be an extremely intelligent man, that could figure everything out. Now he can't figure anything out. And we've had role reversal.”—Female, 61 | |
| “His sleeping at night when he is screaming and yelling at night and jumping and like that in the middle of the night…but I really don't sleep well in the same bed with him.”—Female, 62 | |
| “It hurts me when I have to dress him. He talked about dressing. I have to put his clothes on. It hurts. Putting a man's clothes on…take him to the bathroom. You got to go to the bathroom? Don't drink so much water at night. And you get to the point where they can't walk and they will wet their clothes.”—Focus group | |
| “But during that year, I was very afraid…Like at night, he would get up in the middle of the night and peak out the window and maybe think there was somebody out there. At that time we did have some guns in the house and I finally gave them to his brother. I started thinking what about knives in the kitchen…He was not acting like I'd ever seen him act before. So I didn't know what he was capable of. I was afraid because he was actually accusing…well— and I understand it can be part of the Parkinson's—but he was accusing me of infidelity and all kinds of things…I didn't know what he was capable of and I was scared. It was very scary for me.”—Female, 62 | |
| Core theme #4 | Concerns about the future |
| “You don't know what to do. You run into this problem now with insurance. With the insurance don't want to pay for his medication. The medication is too high. If the Parkinson's person does not get the medication, it hurts. My husband was very sick. He could not get his medication because the insurance refused to pay for it. So then, that is when you come in as a family and you have to think about that. How are we going to pay for that medication? I forgot which one it was, but it was $500.00. We had to decide how are we going to pay for that medicine.”—Focus group | |
| “To make sure we are safe—as far as financially safe. So if something catastrophic were to happen, because of the illness, do the medical insurance and all that protect us? And I can't say…if he falls down and gets hit by a car, or if he is driving…and that kind of stuff. Being protected so I have security to make sure he is taken care of, if he gets to the point where he is incapacitated.”—Female, 51 | |
| “I could use someone to help us with looking at—Ok, here is how much money you have. Here is …there are certain things around—Care Centers—you'd say Assisted Living or whatever around town. Basically I know this is not the way they'd put it, but you can afford these. You probably can't afford these. That kind of thing would be helpful. And most people already know their own resources on stuff like that. But I think that is going to be an issue for us. And particularly if say he gets dementia and now I'm alone. Now I've got some memory issues myself. Cause by the time I'm getting that old, you know? You need help with that stuff.”—Female, 63 | |
| “I worry that if I die first—which could happen because I am not in the greatest of health either. It could well happen, because people get Parkinson's and live for years and years. I worry about him not being able to take care of himself.”—Female, 63 | |
| “Well, I'd say…we probably should figure this out about where to move. You know, and that he is getting good care…And should we move before? I mean when should we move? That kind of thing. I mean we've been thinking about it, but we haven't come up with it.”—Female, 70 | |
| “Well, I guess just the unknown. Cause we don't know what will be next.”—Female, 70 | |
| “That it gets so worse that I would have to commit him to a place to be cared for because I would not be able to do it. Yeah, the ultimate is me not being able to be trained enough because I am not medical you know? I don't have any medical training to care for him. That is my worst fears. Is not being able to have to be, in a way, separated from him, because I cannot take care of him. That and the fact that, you know, you have your insurances and everything, but would that cover all? You know? How much would it cost to keep him and keep giving him the best care in the world? When we are no longer working and have to just depend on whatever insurance we are able to get or are given?”—Female, 60 | |
| “As he progresses, how am I going to work and care for him at the same time? Cause there is going to be a point where he can't go up and down the stairs very well. Or feed himself very well. And make it to the restroom. And I do know all this stuff, but as long as he can find medications, that is a lot further out. But you look into the future like…cause I have to work now. I mean I can't retire until forever. So I need to make sure that I keep working to help pay for all the bills and cause the insurance is through my work.”—Female, 51 | |
| “I worry about that (the future). What would be the next step? Like a nursing home? Or what would that be?”—Female, 80 | |
| “And I am really concerned. Will we outlive our money? I think financial education about how you go about knowing, you know…nobody can predict, per se, but a year ago the doctor told us—one of the doctors—said my husband would be in need of nursing care. Well, he isn't just yet. Thankful. But it scared me.”—Focus group | |
| Core theme #5 | Responses to palliative care |
| “So all of that stuff, where there could be a team of people—or like I was calling earlier. Who do I call? If I have a question? I suppose the neurologist is an option, but I don't think it is a problem that the neurologist needs to spend time on. It is a lower level problem that we should be able to deal with. So I like the sound of that. That's a great idea!”—Male, age unknown | |
| “But I think I would be interested in finding out. I would totally give my attention to it…Oh that is a very fantastic approach. And he got the different people to assist. That's fantastic. Cause a lot of the health care is your mental well being, you know? Your psychological part.”—Female, 60 | |
| “I think this is a very, very important service. I'm glad to see you all are putting this in.”—Female, 63 | |
| “Instead of early, maybe more mid-stage or advanced. But I do think this addresses some definite areas that …and what I like about it is, um…I doubt there are a lot—I hate to say this—I doubt there are a hell of a lot of other neurologist's practices that are going to be addressing all of these things for their PD patients. Or you know, for their patients. Which is a shame, but to have this addressed, offered, I think is really wonderful.”—Male, 68 | |
| “I think that having a whole team is perfect. And even though something might be…like hospice care might not be until down the line, it helps to have all that information before you have to make that decision. And so…I think pretty much anytime you've gotten a diagnosis of something that is going to be life changing, whether it is the short term or the long term, that's what I think.”—Female, 61 | |
| “I think it sounds wonderful…so to be able to do all of this from not only dealing with the symptoms of the Parkinson's physical and psychological aspects of it, but as a caregiver, giving me help and support and knowing where to go to find the different resources. Counseling. Yeah. Um…I think this is wonderful. I would personally like to get involved.”—Female, 61 | |
| “Well, at some point. I don't think he needs anything else right now. He is just in a real good place right now I think.”—Female, 80 | |
| “That would be nice. A one-stop shop! It would be a nice thing to be able to just go and take care of a lot of stuff at one stop. And …you wouldn't have to do it all, but that sounds like a very nice idea for care.”—Female, 51 |