Table 7.

Main themes of qualitative analysis and illustrative quotes^a

Themes			Illustrative quotes
1	Dealing with signs and symptoms of cognitive decline		“I think that cognitive decline is the worst. You cannot really have a conversation anymore.” [C07] “He is actually a big child that you have to take by the hand so that he takes his pills, that he gets dressed, that he goes to the dentist on time.” [C08] “What has become the heaviest challenge is that he has become quite forgetful in recent years. And you know that he cannot do anything about it, it’s the stupid Mr. Parkinson that bothers him, but it can be a huge problem from time to time. Especially, when I am tired myself. Then I sometimes freak out: ‘oh, you have already asked that five times!’ You know that this is not right, it gives you a send of failure that you were that dismissive.” [C14]
2	Psychological and emotional well-being		“I can be cheerful, but my heart is crying. I can easily switch. I can enjoy so many beautiful things, but my life has changes so much that I am always sad. Always. […] I am not jealous of other people. I wish others to be happy. At the same time, I recently looked up old photos from the time we were together […] where we were sitting together under a palm tree and his hands around me. Then I really crave for this memories. [PD] did something to my mental health. The happiness in my life is gone.” [C01]
3	Impact on everyday life		If you live with someone with Parkinson’s Disease, your life is very structured. You cannot longer do something spontaneously. This has all to do with the strict times in which the medications need to be taken. […] I’m fine with it. But it does mean that you live by the hour. By the clock.” [C04] “If you need to stay at home more often, you cancel more things. Things he couldn’t or he didn’t want to. Or if we were going somewhere and he wanted to leave after 10 min. Then your social contacts become less.” [C13]
4	Impact on the relationship	Subtheme: relationship with the person with PD Subtheme: relationship with others	“In the beginning I challenge him. I went beyond my limits by for example cleaning the gutters, so that he would say ‘watch out!’, but he stopped saying it. He is not understanding anymore. He is not seeing it anymore” [C01] “He was a biker. He cycled to Hungary, to Italy, around the Ijsselmeer. He was a very strong and powerful man. When we went bicycling together and we had to wait at a traffic light, he would always say: ‘You’ll get an ice cream soon” and then he would push me like a father would push a child. He would put his hand on my back and push me so that we can sit on a patio immediately. Now it’s completely the other way around. He pushed me, but now I must be in front. I must carry him on my shoulders. That’s now our relationship on all domains. I carry him.” [C01] “He has freezing problems and he falls quite often. But if you see him, you think that it is going well. You do not see that he has Parkinson’s disease. And because of the lack of visible symptoms, many outsiders get a wrong idea of the real impact.” [C13] “When people say ‘if I can ever do something for you’, I do not know what to answer. When someone says to me: “come sit down for a while, I’ll take it over from here’, then it really takes the load off my shoulders. It might be a small difference in nuance, but it does have a big impact […] I really need the initiative from my environment.” [C01]
5	Concerns about the future		“What I find very difficult are the fears that she has about the future. It is not an everyday topic, but it becomes evident now and then. As a young woman she has worked in a nursing home with Parkinson’s patients, and she still has that image of how people then used to be: hanging in a chair or just lying in bed. And she is afraid of that. She can be terribly sad about that […] and I have to deal with her fears.” [C04]
6	Positive impact		“Parkinson taught me to slow down. I never again will say ‘I need to quickly do this’ I do not do two things at the same time, never do anything spontaneously and there are no surprises anymore” [C02] “We are doing it together.” [C11]
7	Coping mechanisms		“When I meditate, I cry. Very often. Then I cry and all is gone.” [C01]

^aQuotes are translated from Dutch to English