Fardou’s father couldn’t find his driver’s licence. It was causing everyone a lot of stress as they tore through the house looking for it. ‘Mum had let me sleep in that day so I could rest’, says Fardou. ‘But if she’d woken me up, I could have told her where the licence was: in my father’s trouser pocket.’ 

Ever since Fardou’s father was diagnosed with cerebral amyloid angiopathy, which led to vascular dementia, the master student has been helping more with little things at home. She’ll do some administrative work, pick up medication, and helps look for lost things. She’s not the only one: 25 to 35 percent of people between eighteen and twenty-five are caregivers, says medical sociologist Hinke van der Werf. But this group is invisible to the rest of society. 

Van der Werf, who talked to young caregivers for her PhD research, thinks this needs to change. It turns out that growing up with a sick family member can have long-term effects on young people’s personal development and how they interact with their peers, among other things. They often suffer from physical and mental issues.

Awful

It’s hard, Fardou agrees. ‘During the week, in Groningen, I’m often distracted by thoughts of my father.’ She’ll send him a quick text, take care of a few small things, or talk to her mother. That means it can get busy, because she does those things in addition to her studies. 

She often goes home on the weekends to help not just her dad, but her mum as well. ‘She works so hard during the week. But I don’t really get to relax on the weekends.’

I hate how the disease is chipping away at him

It’s awful to see how her father is declining, she says. ‘I hate how the disease is slowly chipping away at him. I can see how frustrating and scary it is to need help with things he used to be able to do by himself.’ 

And the number of things he needs help with keeps increasing. These days, Fardou helps with making appointments and joins him on hospital visits. ‘I tend to repeat our schedule for the day a few times, or just give him a big hug when I can tell he needs one.’ 

As her father’s illness progressed, Fardou learned how to stay calm and remain patient with him. ‘Like when I have to explain things a few more times or repeat them.’ She laughs. ‘Fortunately, I inherited most of my mom’s infinite patience.’

Social life

Starting her week on Monday, Fardou is often still tired. ‘I did decide to take care of myself and stay in Groningen one weekend out of every month. That’s helped’, she says. She also tries to focus on doing fun things and maintaining her social network.

Van der Werf confirms that it’s important to maintain a social life. Especially since contact with peers is rarer at classic universities than it is at universities of applied sciences or vocational training institutes, which means classic students tend to be lonelier.

Young caregivers face a dilemma

But it’s difficult to strike a perfect balance, says Fardou. No wonder, says Van der Werf. ‘Young caregivers face this dilemma: on the one hand, they have to be loyal to themselves, but on the other, to their family.’ 

Things that might feel natural to other people require extra planning for caregivers. ‘Like attending the KEI week, for instance’, says Van der Werf. ‘Sure, you’d love to spend the entire week getting to know new people and doing fun things, but caregiving can still interfere.’ Caregivers might have to sleep at home with their family, or they might simply be unable to stop worrying. 

It can also be difficult for them to make friends with people their age, since they feel simultaneously older and younger than their peers. ‘They feel older because they have more responsibilities, but younger because they haven’t had the same amount of time to develop their own personality.’

No single definition

The impact caregiving has on young people is often overlooked. In fact, young people who grow up with a sick family member often don’t even consider themselves caregivers. Fardou knows the feeling. ‘My mother takes care of my dad every day. She’s a caregiver’, she says. ‘I’m sort of part time.’

According to Van der Werf, the reason behind this is that there is no single definition of what caregiving entails. ‘Some definitions state that people should care for a next of kin for eight hours a week for at least three months’, she explains. ‘But how are you supposed to measure that when you still live at home?’

On top of that, definitions often emphasise physical care, when caring for a family member who’s addicted or depressed also counts. So for her research, Van der Werf always started her interviews with the same question: ‘Is someone at home sick?’ If so, you’re a caregiver. ‘That doesn’t mean that it has to be a burden on you’, she emphasises.

It concerns care in the broadest sense of the word. ‘That means it’s just not about physical care, but also about mentally supporting someone or simply worrying about them.’ Also, the person they’re caring for doesn’t need to be a blood relation. ‘Everyone that a young person considers family, is family.’

Pathetic 

Fardou’s image of what a caregiver was didn’t match her experience. ‘I always thought it was someone who took care of a physically ill family member’, she says. It wasn’t until she had a meeting with her dean that she realised that she was a caregiver herself. 

‘I went to him for something else and told him about my home situation’, she says. ‘He told me that it fell under the heading of caregiving.’ Ever since, Fardou calls herself a caregiver, although she hasn’t completely come to terms with the phrase. ‘It feels so heavy sometimes, when that’s not necessarily how I feel about it.’

I’m much more deliberate in how we spend time together

People also tend to feel there’s also something a little pathetic about the term caregiver, says Van der Werf, although caregivers themselves also see the positive side to their situation. Fardou does, too. ‘I really feel like our family has grown closer. I’m much more deliberate in how we spend time together.’

That’s valuable, because the future is uncertain. ‘There are times when my father deteriorates quickly’, she says. ‘Then he’ll be steady again for a while. But in the end, we’re still kind of preparing for the end. And no one knows when it will come.

Support

Fortunately, she is good at talking about her worries, especially with her mother. ‘My mum and I understand each other with just a look’, Fardou says, laughing. ‘It’s also because we’re in the same situation, of course.’

There’s more of a threshold at university, though. ‘It’s not something you casually mention, I think.’ However, she did recently find out that a fellow student of hers was a caregiver, too. ‘Meeting someone who was in the same situation was really nice. Talking to friends is always great, but they don’t know what it’s like.’

The study adviser and the dean were also there for her. ‘There’s a lot of available support at the university, and that includes financial support’, she says.  

Van der Werf feels that empathy is the most important type of support that both students and the university can offer. Genuinely listen, and recommend people who are familiar with caregivers. ‘Simply ask people how they are doing. The easier you make it for them to talk about it, the more you prevent them running into problems with their studies.’ 

She also thinks lecturers should cut caregivers a little slack. ‘Just moving a deadline from Friday night to Monday morning can mean so much.’

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