Table 4.

CPs profoundly impacted by “off” periods

Theme	Exemplar quote
Anxiety	I can see what I think is fear…and that makes me feel anxious because she's not in control (CP7)
	I certainly get anxious concerning a fall (CP10)
Stress	[referring to OFF periods] It's an added weight about dealing with him and with his situation, so yeah it impacts my life, it adds to the stress…if it was more predictable I would probably get myself really prepared…because it's so unpredictable I think it's more stressful (CP1)
	And all of a sudden he's calling me to help him get up. He fell in the bedroom and just missed hitting his head on the corner of the dresser. So it's very, very stressful for me (CP3)
Helplessness	Helplessness, like you can't do anything to help (CP4)
	I'm a fixer and I can't fix it (CP7)
Uncertainty	He's clearly on the road to dementia and I've a lot of questions about what's ahead for us, how bad will that get and so on (CP1)
	That's the thing, I mean with Parkinson's and everybody's so individual it's the unknown that really gets me scares (CP5)
Distress	They're absolutely awful for me [referring to “off” periods]. I hate watching her figuratively go downhill (CP16)
Frustration	The thing that's so frustrating about being a care giver is dealing with so many different symptoms (CP1)
	Instead of just sitting down or taking measures to ease the OFF period, that's where the stubbornness comes in and that's why I get frustrated, if he would just sit down and rest for a few minutes (CP5)
	It's frustrating to see her because there's really nothing I can do to help her (CP9)
	I think there was a lot of frustration and I would find myself getting short tempered over certain things like, “Why aren't you remembering this, why are you doing that sort of thing?” (CP12)
	It's frustrating when you really cannot do a whole lot, where she is dependent upon certain physical activities and medication to try to snap out of the “off” time (CP13)
Sadness	I feel very sorry for him to tell you the truth (CP17)
Fear	I feel horrid, I really do. I'm afraid that he's going to hurt himself, depending on the freezing position that he's in. I worry about him falling, which he has done a few times (CP3)
	It's like her feet don't respond anymore and she went head first into a rock and severely cut her forehead. We were out in the middle of nowhere. I was terrified. I've always been pretty good when there's an emergency but I was absolutely paralyzed, I didn't know what to do (CP18)
Reduced couple activities	It's hard to plan anything in the evening anymore because that seems to be his worst time (CP3)
	We won't go on a trip where we have to do a whole bunch of hiking. The levels of our activities have changed (CP6)
	She wants to travel and we can't do that. We haven't been able to do much of anything socially for the last couple of years because of this. It had a pretty severe effect on our social lives and her ability to function in a wider society. That really is limiting (CP7)
	If it has to do with crowds, like going to a fair or going to a shopping mall or going to a concert venue, we won't do (CP9)
	He felt less able to do things which made us both feel less able to do things (CP12)
	We don't go to the movies. We don't go to the theatre. We don't go to the Philharmonic, which was a favourite of ours (CP15)
Reduced individual activities	I was doing a fair amount of traveling and that has been curtailed because it's not good to leave her (CP2)
	I have a lot of friends that I like to go to lunch and shopping and things with, and it's hard because all I do is worry about him because he's alone (CP3)
	I find myself not doing as many things as I used to (CP5)
Impact on career	There's no way I could consider a fulltime position right now…so I work from home and I take coaching calls…I was doing a fair amount of traveling but that has been curtailed because it's not good to leave her (CP2)
	Sometimes I'll have to go to work late. I'll have to call in and have to deal with that [referring to symptoms] (CP16)

CPs, care partners.