When Maike was seven years old, her mother developed a brain haemorrhage. Since then she has taken on the role of informal caregiver. In this interview she tells what this means for her life. ‘My mother has memory problems and sometimes she calls me at school six times a day to ask where I am.’
Maike is an experienced expert in our European Me-We project that aims to support the well-being of young informal caregivers. The current long-term care tends to focus mainly on people with a physical or mental disorder. The problem not only occurs in the Netherlands, but in other countries as well. There is still too little attention being paid to young people who take care of their loved ones. In addition, young informal caregivers will not ask for help quickly, even though they experience more psychological and emotional problems than their peers.
‘I did not speak about it’
Maike’s mother had a brain haemorrhage in 2009, a year later she had to undergo kidney dialysis and eventually she got a new kidney in 2015. The dialysis worsened her condition. Maike does not remember much about the brain haemorrhage: ‘My mother had to go to the hospital quickly. I stayed with my aunt a lot and the only thing I knew was that something serious was going on. I did not talk about it because I did not really understand what it all meant.’
Maike has taken on many care tasks, such as cleaning the house and preparing meals. Her mother also needs guidance if she must go somewhere. Furthermore, Maike has to read all correspondence to her mother because she cannot see well. ‘My father works full-time so he has very little time, and my brother developed Post Traumatic Stress Disorder (PTSD) because he found my mother after her brain haemorrhage. He experiences a lot of problems and therefore is not able to help me.’
Consequences for school
Currently, the care tasks also have consequences for her school work. Maike follows a secondary vocational education in nursing. She had to have an interview with the study career counsellor, because she could no longer manage to combine school, homework and her part-time job with the care of her mother. It was mainly education professionals who identified her problems. Maike: ‘This started at primary school. Because of everything that had happened, I hardly spoke with other children at that time. I ended up in a group with other children who also had difficulties in communicating. Under supervision, and in a playful setting, we learned to talk more.’
Difficulty with saying no
Recently, through her conversation with the study career counsellor, Maike became aware that she has more difficulty than others with saying no. ‘I am always very concerned with others and then I forget myself. I have learned that I also have to think about myself and keep doing my own stuff, although I am still not always able to make this switch.’
App for young informal caregivers
For Me-We, Maike is now involved in the development of an app for young informal caregivers. This app will help bring young informal caregivers in contact with one another and offers opportunities for help and support. This is badly needed because in many cases the problems experienced by this group are not seen in time. And when problems are identified, it depends still too much on chance.
In the case of Maike, the attentive role of education professionals has helped, in the sense that she has learned to talk about her problems with her peers. But that certainly does not solve all her difficulties. In spite of this, she also experiences positive aspects of everything that has happened. ‘The relationship with my father has become stronger, I can talk to him well. The family relationship between grandfathers, grandmothers, uncles and aunts is also better. We help one another more than what normally would be the case in other families.