Student Adina (right at the table): ‘Mostly, I arrange things like medical appointments, diagnostic assessments and financial matters.’ Photo Reyer Boxem Doing the laundry, going to medical appointments, keeping an eye on how a family member or friend is doing: chances are you are one of the five million informal carers in the Netherlands, looking after a needy loved one on a voluntary basis and long-term. Almost half of all informal carers have a job as well, and feel the combination is manageable. Heleen, Cor and Adina share their stories.
Adina
Adina (24) is doing a Bachelor’s degree in Nutrition and Health and is a carer for her father (64) with Alzheimer’s and her sister (22) with a mild mental disability.
‘Last week, I wondered for the first time if I am a carer when the GP used the term about me. Mostly, I arrange things like medical appointments, diagnostic assessments and financial matters. My mother relied on my father for those things, but I have to do them now. He is more and more forgetful, finds it harder to follow conversations and is becoming more passive.’
The hardest thing is the pressure of having to do it and the way it is increasing
‘The hardest thing is the pressure of having to do it and the way it is increasing. My stress level is constantly raised, which affects my sleep as well. I feel responsible, I want to help as much as I can, and to make memories, but I don’t have much time outside of my studies. It doesn’t help that my parents and sister live in Friesland.’
‘And it’s hard for me that I can’t really live my own life. I can’t stay away for long periods of time, for instance, because then I lose the overview and am afraid that something will go wrong. That also makes me reluctant to hand things over to anyone else. But it would be nice to be able to tell my story and to learn how to cope with the extra stress.’
‘When I came to university, I told my student adviser about my situation in case things get worse later on. She responded kindly, but didn’t offer any tips or information. It would be nice if I could get an exemption if I have to attend an appointment, for example. Now such appointments take up a lot of extra time because I have to plan practicals around them, or catch up later. There is already so little time to recover.’
Cor Meurs
Cor Meurs (57) is an informal carer for his partner, who has bipolar disorder. Cor held various positions within WUR for 34 years and is now a self-employed coach, trainer and consultant. He directed the theatre production My Mother, about caring for a mother with dementia, which was performed on campus on 9 November.
‘It was only through this interview that I realized that I am a carer too. I never saw caring for my husband as a task; you choose to stand by each other in good times and bad. My partner may have a mental health issue, but it also went well for 16 years, between two hospital admissions. So for me, the carer role was mainly challenging mentally.’
‘The run-up to the hospital admission was a particularly anxious and uncertain time. My husband became unpredictable due to a psychosis, so I was very worried and had to prevent accidents. He would only be admitted when he was a danger to himself and the environment; but when was that? As a result, my mind wasn’t on my work and, in consultation with WUR, I could stay at home. That wasn’t a difficult conversation – it helps that I am very open.’
There are plenty of possibilities at work as long as you talk about the situation
‘I think there is less recognition of informal care for people with mental health disorders because there is relatively little openness about them. There are plenty of possibilities at work as long as you talk about the situation. What is going on, what’s behind it, and how can you avoid long-term absenteeism? Managers play an important role in this. Caregivers have a lot to offer, and we can strengthen that potential. And that is necessary now that the healthcare system is under pressure and informal care is becoming more important. The play helps with starting a conversation about that.’
Heleen*
Heleen (48) is a director at WUR. Besides this 32-hour job, she is a carer for her son (17) with autism and her daughter (16) with an anxiety disorder.
‘My children are less independent and need more attention than is usual at their age. And I am constantly looking for the right care and support. That entails conversations with people like doctors, special education providers or the school attendance officer. My home situation has caused me to become extra alert and to develop a talent for organization. Qualities that come in handy at work.’
‘I combine my job with caring by realizing that I can’t do it alone. I have to know where to get help, and to enlist it and be open. Talking is one way of dealing with my situation. For example, I pop in on the corporate social worker on a regular basis to get things off my chest, and I have also had therapy. Because of my openness, I get a lot of support from colleagues.’
Talking is one way of dealing with my situation
‘Sometimes they worry because they see I’ve got a lot on my plate. But I know my limits. Fortunately, I experience a lot of freedom, understanding and trust, which allows me to organize my work my own way. Sadly, not all informal carers know where they can go for support. Employers can help with that. My advice to the employer is not to make any assumptions about an informal carer: every situation is unique. Ask questions and figure out what is feasible together.’
*Name known to the editors
Tips
How can you find an equilibrium between work or studies and caregiving?
Discussing your situation is the first step. Share your concerns, gain understanding or find solutions together. With your supervisor, study advisor or dean, you can discuss how WUR can support you. Or, reach out to the occupational social worker, HR, the company physician, your general practitioner or (student)psychologist. There is a discussion board available on the Intranet.
Do you find it hard to talk about your personal situation? In addition to the discussion board, Fenny de Lange or Erica Steen of WUR’s care counter an provide you with information or refer you to a certified caregiver’s confidential counsellor.
National or regional support centres such as:
MantelzorgNL [Dutch]
Mantelzorgcentrum, also for professionals [Dutch]
Humanitas [ENG]
Regelhulp [Dutch]
ECIO: for students [ENG]