Table 3 Quotes overarching themes

Q1

Situation is emotionally tough

The tricky part is simply that the situation is so awful. That’s what actually makes it difficult now; the combination with work is nearly always OK in fact. So I’m pleased with that; in fact that’s one thing I am pleased with. So it’s more that emotional burden. That’s what affects me above all – that’s what makes it tougher now rather than the combination with work. (#17, T2)

Q2

Approaching death of care recipient is emotionally exhausting

Sure, it’s wonderful that [the care recipient lives longer than expected] but it’s also quite draining emotionally. You have all these expectations and then you have to adjust them again and you’re sad again or shocked, and then you’re relieved again. But it’s like that the whole time. And I don’t want to stay away too long at the moment, so I’m always allowing for the fact that it could suddenly get worse next week. […] So I’m thinking: is that serious or not? Right. We have these discussions sometimes with the GP, that he’s terminal now but shouldn’t we stop using that label? But that hasn’t happened so the GP probably does have this expectation that it could end quite quickly. But at the same time he has quite an unusual kind of cancer, so I reckon it must be difficult to predict. Yeah, so it’s both the fact that it costs a lot of time and the fact that it’s emotionally quite draining. (#12, T3)

Q3

Difficult to determine when and how to act

That final period was the toughest. Basically from just before she was admitted to the hospice, in December, until she died. That was really tough. […] I hadn’t had many ups and downs until the end, it was just continuous, the whole time, expecting that there would be more bad news and misery, and then sorting it out. You simply do what’s got to be done. But every time you had a bad news talk, saying that she was so sick, you would have these doubts all the time: should I call the doctor or the hospital now, should I take action or not? Those were tough moments, definitely. So for example, when I could see that she was really weak but she didn’t want me to talk to the oncologist, well, that was difficult. […] But also the whole process of having cancer, that you don’t know when the time will come, the constant uncertainty. That uncertainty is also about you not knowing what you should do. Like OK, I’m really worried but is this now the point where I should actually phone the oncologist: yes or no? And then I’d discuss it with my mother. And that’s very… the fact that you permanently don’t know what the situation is, or what you should do or whether you’re doing the right thing. Right, I think that was actually the hardest part. (#17, T4)

Q4

Hard to determine when to take leave from work

When she was admitted to the hospice, I took short-term care leave. But that was two weeks and when it ended, I went back to work. So I worked two weeks then, and after that I took unpaid leave. So I was pretty much there the whole time then. I coordinated things a bit with the nursing staff there… because I could only get four weeks of long-term leave and I didn’t want it to end just at the point when my mother was getting sicker and close to the end. So I wanted to plan it so that I could use it all for the final days with my mother. And that was what happened; it worked out in the end. I’m pleased that I did that. That I was able to spend that time on her and I didn’t have to worry about my work at the same time, and I didn’t have the stress of combining that. […] It was difficult to estimate. For two years, I thought it wouldn’t be much longer but she kept on going. So at some point, you ask the nurses what their experience tells them is going to happen. You can never give guarantees, but based on your experience how much longer has she got? So right, then I agreed things with them. (#17, T4)

Q5

Death of care recipient also gave some sense of relief

Of course, they too [the daughters] had seen it coming. They were also relieved when she died, I was too — kind of liberated too, because you’ve got rid of that whole illness, of the appointments with the hospital, the stress, not knowing what your day will be like. Crazy things that can happen, and you can do normal stuff again. The three of you can just get in the car and say, how about going to the beach this evening or why don’t we go to McDonald’s, just something crazy. So the normal things are possible again. (#18, T1)

Q6

Return to work difficult because caregiver feels worn out

I spent eight weeks off work after he died. I’m still not back at work fully. I started working again in November. I have to say that my employer was very good about that. I was allowed to do the hours I wanted; if I wanted to work until one o’clock that was fine, if I wanted to work until twelve that was fine, it was all no problem. At the moment, I’m only working until one thirty. I started working half an hour extra in July but I am finding that simply incredibly tiring. So whereas I was able to really keep going during his illness, well, you end up in a kind of void… Yes, it hits you eventually. (#15, T3)

Q7

Grief coach facilitated by employer

I had this sense of being stuck in a quagmire that I couldn’t get out of. So then I went to the practice assistant. I had two appointments with her and she said it was a little bit beyond what she could do. So then I was in contact with a grief coach. […] Well, that isn’t actually covered by the health insurance, which I think is a pretty poor show. But my work decided they would pay for it. They basically felt it was very much in their interests for me to carry on working. (#15, T3)

Q8

In hindsight, caregiver would have accepted help sooner

Start sooner with the neighbourhood care service and home care. Right, in my case, well, you maybe ought to begin when you… um, personally I found it really difficult to ask for help. I had this feeling that I’d failed. Whereas [the care recipient] had actually said a couple of times, “You can’t keep this up and I really don’t mind; it’s OK if you ask them.” But I found it so difficult to take that step of involving the neighbourhood care service because you’re basically handing over to them. And I found that so difficult to do. Looking back, I should have done it a bit earlier. But well, that’s just how it went. You need to be ready to take that step as well. (#15, T3)

Q9

Care situation had affected relationship more than caregiver realized at the time

In 2019, I realized that it was a real emotional and physical burden for me. […] Now, looking back, I can put it into words a bit better. When you’re in the middle of it you just keep going, so there might be something you pick up subconsciously but you don’t do anything with that information. Because I knew anyway that I couldn’t do anything about it. But I’ve talked a lot with my wife over the last while about how I’ve noticed that it’s had a big effect on our relationship. Now we’re working together on kind of coming together again, because we started living separate lives; I think that must have been the case for three or four years. Looking back now, we see… I was spending a lot of time with my mother, but even when I was here, I was really still at my mother’s emotionally. I would plan everything. First, I would go over and care for my mother, then I would see whether I could do anything at home with friends or my wife. As a result, we had a really strange relationship and that’s now a bit… we’re trying to sort of get things back on track again. (#17, T4)

Q10

Lack of aftercare following the care recipient’s death

The aftercare for partners after someone has died. Because at that point… I get it because [the care recipient] was the patient and the ergotherapist visited me once after he died, but the rehabilitation specialist, well, I spoke to them on the phone on the Monday and that was the last time I heard anything. They just abandon you. There’s no aftercare at all. Whereas I do find that very important. So I think that is pretty poor. […] Well, I’m thinking maybe that a grief coach could be added to the rehabilitation team to give that aftercare. Because what you’ve been through is not nothing. Because the grief coach actually said, “If you don’t watch out, you’ll get PTSD”. (#15, T3)

Q11

Role of workplace in burnout

I spoke to various people at my work about my problems. The confidential counsellor, HR, my team manager, the works council. And nobody did anything. That was in 2013 or 2014. It was never dealt with properly. I had various talks. They really made mistakes there. They didn’t give me proper support either in advising me what I could do to make things easier for myself. So they offered to reduce my contract and I’m still suffering the consequences because now I’ve only got a contract for 20 h. A better recommendation would have been to take unpaid leave because now if I get occupational disability it will be based on that figure of 20 h. The occupational specialist also wrote in her report that my employer didn’t do enough. She thinks I’m a ‘medical reducer’, which means that I took measures off my own bat several years ago so that I could carry on working, as I kept cutting my working hours. My employer should have done more to help. (#6, T3)