Table 4 Advice given by family caregivers to other caregivers, the workplace and local authorities

Advice for family caregivers in similar position

Arranging/accepting help sooner

If people offer help, accept it. In whatever form it comes, even if it’s grocery shopping or “How about I go on a walk with the person who’s sick to give you a bit of a break”. (#10, T3)

Keeping the people around you informed about what is going on and what you need

What I find really important is to keep the people around you — your family and friends — informed so that they know OK, that’s what is going on. And yeah, what I found difficult but others might find easier is accepting help when it’s necessary, so the rest of your immediate family can keep going and find a way to cope. (#14, T3)

Make your boundaries clear

Make your boundaries clear, because I went too far. And do so in good time… but that’s ever so difficult because it’s often an emotional thing, that involvement. It also depends on who you are caring for. Are you caring for your partner or a child or your parents, or are you caring for a neighbour? So I do think… look, when it’s your neighbour it’s easier for you to take a step back than when it’s your parents, for example. That’s the difficult part, because it’s to do with your emotions. (#10, T3)

You are allowed to prioritize yourself/look after yourself

You’re allowed to prioritize yourself, put yourself first. You are the one who has to do it, you have to… you have to cosset yourself. And make sure you stay healthy by doing sports, exercising, looking after yourself. Make a hairdresser’s appointment, do something for yourself. Eat healthily. Then you’ve already made big progress. (#4, T3)

Right, always making sure you look after yourself, but that is… Well, I think that everyone probably says that so it’s virtually a useless tip because everyone I speak to says it just happens, as it were. I’d almost be reluctant to give it as a tip because I know… I don’t even know how you could do that. […] I think perhaps it could help if you realized that you… you’re not under any obligation or whatever. You have a duty to keep good care of yourself. If you’re the relative of the person who’s ill, they don’t gain anything either if you run yourself into the ground. Perhaps if you look at it like that, it’ll help you realize that it’s a good idea to look after yourself. (#17, T4)

Get information about the options

Get proper information about the available options. (#7, T3)

Make sure you’ve got all the right information. And make sure you have a backup, so that you can share the care with other people, because that really helps. (#1, T3)

Be proactive in arranging care and contacts who could help you

If you know it’s going to be a very long process, you could kind of take that into account at a very early stage. I think that would have helped me. And you could already start looking for people around you who could help you. It’s too late for that once the going gets tough. So you’d already know what contacts you have and what you can do and who you need, so you make plans for things that help. […] Otherwise you’ll always be playing catch-up and be under a lot of stress. There will come a point where you’re playing catch-up because this is a battle you can’t win. But I think anticipating and preparing for things wherever possible could save a lot of stress and worry. (#17, T4)

Trust your instincts

Take charge and stay in charge. And trust your instincts. I think that is more important: feeling OK with things and doing what you’re OK with doing. And if you don’t want to do it every day, even if it’s only twice a week or once a week or once a fortnight, do what you feel is right. There are enough people who say, “I’m not going to go every day”. That’s up to them. (#16, T3)

Make a keepsake box

What I did that could be a tip for other families… Because sometimes you think you’ve got time, but it turns out that time’s far too short. And then you are left with nothing. I was really already working on saying goodbye when he was still there; maybe that wasn’t right, but it does mean I have a lot of memories. I recorded things, and I got photos of the CT scans, you know so that they have something… well, you can tell them Daddy died of cancer when he was only 44, but what does that mean? And I’ve just got all these photos. So they’ll be able to see them, when they’re older too. You can also order a bereavement blanket. Well, that’s up to you, but I got hold of one indirectly. For the children. And it included a very nice letter for the children saying when Daddy’s no longer there and you’re feeling sad, then you can wrap this blanket around you… you know, that kind of thing. You really need that as a family. (#2, T3)

Be open about the care situation at work

Indeed, being open about it at your work too and adopting a leadership role yourself, so not waiting to see what your manager can do for you. But I think you have your own responsibility here and you need to make it something you talk openly about: OK, what am I able to do and what can I really not manage? And I think you have that responsibility towards your colleagues too. What isn’t possible simply isn’t possible, I’m quite convinced about that too, and it’s fine to be honest about that, but you do need to bring it out into the open. In fact, as we were saying just now, take a look at whether you need help, yes or no. And don’t be ashamed to make use of that help. (#14, T3)

Try to see the plus points as well

When you do things, do them attentively, with affection and with dedication, prioritize yourself and the other person too, the person you’re caring for. And try to see the plus points – seize the opportunities. You know, when it’s windy some people will put up a windbreak and others will build a windmill. So that kind of thing. Like when it rains, older people like me will put up an umbrella while kids go and stamp in the puddles. Try to turn it round and see what benefits it has and don’t let yourself be dragged down by a medical… or by a disease, or have your identity reduced to that disease. You’re making the disease into too big a thing then. (#18, T1)

Make contact with fellow sufferers

Share with one another… I’m also on a closed Facebook group for family caregivers… right, sometimes that will give you recognition of what you’re going through or you can let off steam, or just add a comment like, that’s so familiar, good luck with that. Yeah, you help one another a bit. […] Then you feel understood. Then you know these people are in the same situation. So: they understand what it’s like and you understand them too. (#7, T3)

Advice for supervisors and employers

Have a clear policy for informal caregiving rules within the organization

Right, have a clear policy on that. At my work, I see it depends on the team manager. A good example is when I had really big problems with my wife. I needed a few days; I needed time that I essentially no longer had any right to, legally. My team manager called that my ‘personal responsibility’. Then a colleague got news from abroad that his mother who lived abroad had become seriously ill, so he was immediately taken off the roster for two weeks so he could travel abroad and the agreement was that they wouldn’t deduct it from his holiday allowance. That’s not on; you can’t have differences like that. Because then I’m thinking that’s also your personal responsibility. If his mother is ill abroad, then he should just take some holiday leave. (#6, T3)

Point out possible leave schemes to employees

That you encourage the employee to think about what options they have but also point out the possibilities. I looked up those rules myself. But if someone doesn’t take that upon themselves, the manager can suggest it, of course. Say these are the options and what would be most feasible in which situation. (#14, T3)

Help think up solutions

Well, I have to say that in my case, my employer was very good in helping look at the options and what they could do for me. They also found work that I could do from home. They created all that for me, and I found that ever so nice. (#15, T3)

Keep up a more active discussion about the care situation and make agreements

Keep up a more active discussion about it too, I think. If you know someone’s a family caregiver, at some point the person close to them — the manager or team leader or whoever — should ask them, hey, are you still managing to schedule everything? Ask whether anything has changed, or if you made an agreement ask whether that’s still going well. Sit down with that person. Not in the office: go to the cafeteria, reserve some time for the chat, get away from the office environment, go to the restaurant, take a short walk and talk to them like, well I’ve seen this, I see you have that, is there anything I can do for you? How could we explore together what we can do to achieve this, and what can I offer you? (#4, T3)

Make sure the family caregiver feels people are listening

Right, right… well, you’re too busy or… I’ve never reported sick, but how are you going to deal with this? And if you’re not sure what to do, be open about that: I don’t know at the moment what to do for you. It’s not that I’m abandoning you, but I’m not sure at the moment how I can deal with this. Do you want me to carry on with this, or are you saying I should just let it drop? […] Because I think then you feel someone’s listening, even if nothing happens… well, that’s not the right word, but even if your manager says at some point that they don’t have a solution and should we carry on looking or not. At least then someone listened to you. So you have a sense that you’re being taken seriously. (#17, T4)

Tell each other what your expectations are

I think they should have discussions with their own staff. What the staff expect from their manager and whether they could perhaps cut their hours or take temporary care leave. What I mean is, I once had someone who took care leave to look after her father. That was just a couple of weeks but I think managers should be open to it. But well, you do need to see it from both sides and tell one another what your expectations are, because the work still goes on. (#16, T3)

Discuss how the colleagues should be kept informed

I think the communication with the other employees is important. You’ve got to discuss it with the family caregiver too. In this case: right, what should we tell the team and when? So that the caregiver still feels involved in the team and you don’t get a lot of gossip developing and people making all kinds of unnecessary assumptions. I think that’s also an important task for the manager. (#14, T3)

Pay attention to the topic of informal caregiving (and bereavement) in the workplace

What I would like to offer as an idea for them, I think, is that co-workers could pay more attention to their colleague’s grieving process: what it involves and what it means, because I think there’s room for improvement there. Look, they do their best, but I feel it’s quite uncharted territory. […] You’re still sitting there and so people think you can still do all the work you normally did, so everything ends up on your desk again. And nobody looks at how many hours you are working here and whether you can cope with it all, if you are you coping, if they should give someone else some of your tasks. I can work this out with the management, who basically say OK, we’ll take these tasks off you. But you do still find on the work floor that some people aren’t so understanding. (#15, T3)

Give family caregivers time, space, understanding and trust

Pay attention to family caregivers and show your appreciation. Give them space, time and trust. And in particular, don’t push them. Human capital is so much more important for adding value than the other kind of capital, the turnover or… Social capital is so incredibly important: it’s the people who make the difference. The company doesn’t exist at all…It’s just an abstract construction, it’s something that’s put on top. The system doesn’t exist either: we are the system, we are the company. So it’s almost something to do with the culture, how do you deal with… well, how would you personally want to be treated? So right, that’s how you should behave towards someone else. (#18, T1)

Be very kind to them and be understanding about the situation. Don’t think “Oh, I’ll just do that”, because that’s not is the way it works. No. And I must say, the arrangements are quite good at my work, fortunately. They’re very flexible. I’m really pleased about that. But I also think there are other employers who really aren’t alert to this and aren’t willing to make the effort either. Sure, that’s the reality you have to deal with in our society today with market forces and everything closing down. Well, it’s simply terrible. (#7, T3)

It’s ever so nice when they’re understanding, and to have the space… for the days when you really need to do something with the person you’re caring for, … I think the key thing is being understanding. Well, that and the space… so you can actually give that help. Right, right… I can’t think of anything else, actually. (#12, T4)

Advice for healthcare professionals

Make sure someone gets the same staff and a designated contact in the care team

Right, you know this particular patient is getting care through the Long-Term Care Act so they’re obviously going to need care for a long time. So draw up a roster with a fixed team. But instead, he’s constantly seeing new people. Then they tell you well, we can’t always deliver. I get that, if staff are sick or on leave. But I mean if you… you have ten people, let’s say, who have to deliver the care and you have them available, and you have four appointments with a patient, then you can make sure the same person always visits the patient, at any rate in the morning and the evening. And in the afternoon and when they go to bed… I don’t think that’s particularly difficult. I mean, we draw up rosters here too. So I don’t know what the problem is. But it’s always a different person, you know. Then I reckon, well, if you have long-term patients, you should try to introduce some kind of routine. But that’s not what happens at all. (#8, T3)

More guidance and contact with the family caregiver

Practical tips and, well, the kinds of things you should be looking out for as the partner, if you don’t have home care, because that period could last five months or it could be what we had, nearly a year. Even if you just have some procedure for a phone call once a month, talking to one another, and then an appointment to see the family briefly once every three months. Perhaps you could even have home visits, you know, that’s very much the modern approach. Really a bit more guidance in the whole process, not just looking at the disease side but also more the social side. […] There were a lot of things they [care professionals] didn’t know, where you think well OK, but that happened too. Then there was a phone appointment with the doctor, who never called. There I was, sitting waiting for that call all day. I think that an awful lot of patients and families have experienced that kind of thing. Sure, we had that happen in [hospital] but of course that’s an oncological centre so you think, they really should… that’s the modern approach. Surely you don’t still let people figure things out for themselves? You need guidance. Especially when a family is going to be losing a father or a mother. (#2, T3)

More aftercare and guidance after the patient’s death

The aftercare for partners after someone has died. Because at that point… I get it because [the person with a care need] 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. […] 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”. There is an awful lot you have to deal with, and well, that really tends to get forgotten. Because I hear this from other people too, that people have difficulty with this. (#15, T3)

Easier procedures for care needs assessments

Well, the reassessment: it’s all still complex and difficult. And something always goes wrong. Then you need to put in a lot of effort to get things straight. You eventually get it sorted, but it just costs an awful lot of energy. Especially assessments for the longer term – rethink the approach. Because now they’re saying: we’ll do it annually because the care situation could change. But you could also delegate that to the person in question, tell them “Let us know if anything changes”. Of course people might keep schtum if the care needs become less and you keep up the care… Well if necessary you could deal with it by contacting the GP, get the GP to draw up an assessment saying the situation is the same, or this has got less or that… You know, just a bit more straightforward. Now you have to go through this whole rigmarole, it costs vast amounts of money and loads of time. Make it all a bit easier. […] You get this huge stack of paperwork staring at you, and a period of uncertainty. It’s so much work that there’s a waiting list for the reassessment and processing it. And you’ve got two different parties because the community nurse does the assessment and then you send it to your health insurer. In our case at any rate. And they too have a backlog. So you keep facing these backlogs. Yup, that’s so frustrating. So then you have to go without money from the personal care budget for two and a half months, well, they simply assume… look, I’m giving care informally so I can say to my wife, “OK, but I’m not going to abandon you. I’ll still help you”. But if you’re using formal care services, they simply won’t turn up if you don’t pay. (#6, T3)

Advice for local authorities/government bodies

Improve communication about the support options and the procedures

I think an awful lot still needs to be done in terms of communication and the lack of clarity especially. I mean it when I say ‘an awful lot’. Look, the basics are all there but it’s not clear to loads of people. Where can they go to, who can they go to, and how seriously are they taken? I think that… that we still have work to do there, even with everyone’s good intentions. Right. So I think that’s the main message in my story, what I come up against. (#11, T2)

Earmark money for supporting family caregivers

To start with, each municipality is allowed to decide for itself how it sets things up. The money the municipalities get isn’t earmarked. So municipality A pumps a lot of that money into youth care, for example, because they’re short of money there. That’s not on. You can’t do that with your own money. If you’re getting money to pay your overheads and you think oh well, it’s quite an expensive month so I’ll use that money for my shopping, your housing corporation will eventually come knocking and say, “You owe us”. That’s not on, it’s weird. […] There are cutbacks but they’re not short of money because no one looks at them because apparently there isn’t a problem, because the informal caregivers just keep going. […] It’s weird that you have money that was meant for a particular purpose and you can channel it somewhere else… you’re really showing contempt for the group it was intended for. These days, informal caregiving is quite a challenge, and then you just take money away from them. That’s a shame but we need it elsewhere, so tough luck. That’s not on. (#6, T3)

No more market forces in the care sector

Well, that’s the reality you have to deal with in society today with market forces and everything closing. Well, it’s simply terrible. No, I would like to make a case for that… well, putting an end to those market forces. The SP [Socialist Party] is also working on that of course. Well, that message needs to be taken on board by the politicians at last. I was really pleased when Hugo de Jonge [Dutch Health Minister] said we’re going to take youth care services off the hands of the municipalities because that is just not working. I thought, hey, they’re making a start. […] The market forces approach has really ruined things. It turns you into a criminal, a fraudster. The authorities have this attitude of “there’s another one who’s trying to get something off us. That’s our money.” That’s how it feels. And guys, you just need people who say… like that complaints lady at [the health insurer], who said, I understand what you’re saying and I’ll sort it out and if there is anything… that gives you breathing space. (#7, T3)