I take care of you – Portraits

Frits (77): Without love, you can’t keep up  

I am retired and always did a lot of volunteer work. An asylum seekers’ centre has been set up here in the neighbourhood and I would really like to help out there. But my days are now completely taken up with caring for my husband, Jürgen.

Jürgen is 29 years younger than me. When we moved in together, I already knew he had MS. But at the time, he was still very fit. He could still jog and easily outrun me.Unfortunately, his condition deteriorated rapidly. Now he can’t really be on his own anymore.

Home care comes every day to help him shower and get dressed. But I do everything else myself. I get him out of bed, put him on the toilet, help him eat, take him outside and put him back to bed. It is very intensive. Sometimes it takes half an hour just to put him on the toilet. It is constant care, all day long.

This situation has changed our relationship. We are no longer equals as we used to be. That’s difficult. Jürgen is completely dependent on me. I often speak on his behalf in conversations with others. I sometimes wonder if I’m doing the right thing. Fortunately, we can also joke about it and laugh together. And there is a lot of love between us. Without that love, this would not be possible.

What I have learned is that I need to pay close attention to my own limits. I also need time for myself. People often don’t know what kind of help they can offer, but if you ask them to help, they are happy to do so. An older couple from the neighbourhood comes by once a month with a nice meal and we eat together. That’s really nice, because then I don’t have to cook. And it’s fun.

But taking over the care for a short time is difficult, because you really have to learn some things. Like working with the hoist or emptying the urine bag.

We have a Personal Budget (Pgb). This allows us to arrange care ourselves. I’ve come up with something that works very well for us. We have five students who each come to help one day a week. They know Jürgen well and feel almost like family. This allows me to go to a concert, museum or just relax sometimes. Sometimes I stay at home and have them make me a sandwich. That’s really enjoyable.

Malène (65): I worry all day long

I worry all day long. It never really stops. Of course, I go to work as usual. And in the evening, I sometimes sit on the sofa with my husband watching a series. But even then, I think about my 26-year-old son. Only when I know he’s home can I sleep peacefully. That’s why he’s been sleeping with us again recently. At least then I know he’s still alive.

He has mental health problems and multiple mental health diagnoses. He is also addicted to ketamine. It is difficult to find the right help, and that is frustrating. Care providers usually look at what their own organisation can offer, rather than what someone needs. For example, you have to be clean before treatment can start. But his addiction is also a result of the long wait for help.

My husband and I now do a lot ourselves. We listen to him and are there for him. It’s taking care of him and worrying about him. But we also have to take good care of ourselves. That doesn’t always work.

I am trying to let go more and more. I manage to do that a little when I am at work or when my son is safely in bed. Writing down my life story also helps. I am a KOPP child myself: a child of a parent with mental health problems. My past still plays a role in my life. That hurts. Sometimes I feel guilty, as if I have passed things on.

People often forget that caring for a child with mental health problems and addiction is also informal care. If your child is in a wheelchair, for example, the need for help is clearer. With mental health problems and addiction, there is less understanding. You cannot see the illness. As a result, these informal carers often remain invisible. And that feels lonely.

I work at Cliëntenbelang Amsterdam. We are committed to improving care and support for informal carers. So I know exactly what help is available. But when you are emotionally involved, you often forget that you are also allowed to ask for help yourself. Your head is just full.

Our son recently got a client support worker. That helps. They go to appointments with him. That’s nice, because the support worker can remain objective. My emotions get in the way. 

Michael (37): Caring, worrying and missing care

I was just a child when I started caring. My younger sister was born with a rare syndrome. She has a very severe intellectual disability with difficult-to-understand behaviour. At home, everything revolved around her. My parents and I formed her care team. That felt very normal to me, but it also meant that I had a lot of responsibility at a young age.

I could often understand my sister better than anyone else. Just by looking at her hands, I could tell if she was tense and might have an outburst. That’s why I stayed at home as long as possible in the mornings to help my mother. After school, I went straight home. I learned to be independent at a young age and basically raised myself. I didn’t pay much attention to my own feelings. I didn’t share them with my parents either, because I didn’t want to burden them even more.

I was quiet at school. I had few friends. There was simply no room in my head for friendship or romance. My adolescence was dominated by worries, not by discovering who I was. That came much later.

When my sister left home at the age of twelve to move into a residential care facility, I felt a sense of relief. However, it was only when I went abroad a few years later that I truly felt liberated. There, I got to know myself away from all my worries and finally gave space to my feelings for boys. Discovering my queer identity was something I hadn’t had the time or space for before.

When I turned eighteen, I officially became my sister’s care mentor. My parents helped me a lot with that decision. That was very important for my own process. Still, it was obvious to me, and it didn’t really feel like a choice.

For a long time, I thought I didn’t need any help. But I really struggled. During my first job after graduating, my father fell ill. Caring for him was on top of my work and caring for my sister. That’s when things went wrong. My psychologist taught me something valuable: you also have to take good care of yourself.

Together with other organisations, I am committed to raising awareness of young carers. Many young people provide care quietly, without others noticing. They care for others, worry about them and miss out on care themselves. I recognise this all too well.

In my work with the Alliance for Young Carers, I talk to young people and people who work in education, healthcare or local government on a daily basis. I want the people around them to understand what it does to you when you care for someone at such a young age. And I want people to understand that they can also make a difference for these young people. Because you don’t have to do it alone. 

Fiza (24): When people stare at my little brother, I just stare back

I grew up in a loving family, but also with a lot of responsibility. As a child, I was quiet and independent. I didn’t ask for much attention, because I felt from an early age that I had to take care of things. Especially my little brother.

My little brother is now 22, but he functions like a three- or four-year-old. He needs help every day: with eating, showering, brushing his teeth and making plans. When we go somewhere, we have to prepare him well.

I used to be afraid to talk about how I felt. I didn’t want to burden my parents even more. I didn’t always feel understood by my friends either. I couldn’t really talk to anyone about it. It was only when I started talking to a psychologist that I learned to set better boundaries. That helped me a lot.

As a Muslim, I believe that everything happens for a reason. In my faith, people with disabilities are seen as innocent and pure. My little brother is closer to God. It is a privilege to be able to care for him. That gives me peace and patience, even in difficult moments.

Now that I am older, I take better care of myself. I travel, try out new hobbies and go out with friends. Sometimes I even travel alone. I didn’t dare to do that before, because I felt guilty towards my family. Now I know that if I take good care of myself, I can also be there for my little brother.

I don’t see myself as a carer, but primarily as a sister. For me, it’s normal to take care of him. But I also know that it can be difficult. It’s important that siblings of children who need care receive support.

That’s why I recently started Bruz Spot with two others: a place for brothers and sisters like me. Once every six weeks, we organise something fun or educational. This allows young people in similar situations to meet, relax and share their stories.

Many people don’t know what it means to care for a brother or sister at home. I also hope that people on the street will show more understanding. When my little brother shouts loudly because of stimuli, people often look at us strangely. That hurts.

But I’m not ashamed anymore. He has a right to be here, just like me. And if they stare, I just stare back. I’m proud of who I’ve become. And that’s also thanks to my little brother.

Vera (37): Sometimes it’s enough when someone just asks you how you are

I’ve been a carer since I was a child, although I didn’t know the word for it back then. I find it a distant word. There should be a better word for it. My brother and sister have mild intellectual disabilities and autism. Because we often didn’t understand each other, there was regular tension at home. I wanted to help my parents. Tidying up when visitors came. Making sure everything ran smoothly. I quickly felt responsible.

One in four children grows up in a family where someone is ill or needs extra care. So you grow up “in care”. Not always with practical tasks, but with worries in your head. Always alert. You absorb your parents’ tension and stress from an early age. It builds up and gets into your body.

There were carers at home, but they discussed everything with my parents. They never spoke to me. At home and at school, I didn’t ask for attention. I was a quiet child. Precisely because of that, no teacher or neighbour asked me how I was doing. How I felt, with everything that was going on. I often felt lonely because my worries were not seen. 

In hindsight, it would have helped if someone had really seen me. Someone who recognised that it’s tough. That as a child, you sometimes carry a lot. When people acknowledge that, it gives you breathing space. 

Now my parents have asked me if I want to become a care mentor for my brother and sister. Friends advise me to think carefully — I have a young family myself. But for me, it doesn’t feel like a choice. No one else can do it when our parents are no longer around. I am the one who can do it with love and commitment.

It has also brought me a lot. I have developed a strong capacity for empathy and can quickly sense how others are doing. I have a strong sense of justice and want everyone to be seen, including people who are “different”. That is why I create social projects with my foundation and as a photographer, such as “Do you see me?”.

This project is a travelling exhibition about young carers, combined with guest lessons in schools to make teachers, children and young people aware of what it is like to grow up with extra care for a family member. I hope that young carers will recognise themselves sooner and that they will be seen more quickly by those around them. Because sometimes it is enough for someone to just ask how they are doing. Schools and others in their environment can do a lot for young carers in this regard.

Jim (45): Thanks to our care, he can remain in his own home

Two years ago, I spent a lot of time with my father, who had just been diagnosed with dementia. I noticed that he was starting to neglect himself: he ate crisps and chips for dinner, he forgot to tidy up his house and couldn’t always remember appointments. Because I was working less at the time, I took on the care. In the beginning, I did this together with my sister. She took care of all the administration and paperwork. I mainly did the practical care: cleaning, shopping, cooking and keeping a close eye on what my father could still do independently and what he could no longer do.

My father had to get used to my presence. He often asked, ‘What are you doing here every day?’

After six months, I went back to working full-time. My brother, sister and I then drew up a schedule. My 19-year-old nephew saw how much time it took and now helps out too. That’s really nice!

Applying for the Personal Budget and getting permission to spend it was difficult. We lacked a kind of manual for informal carers. We had to figure out a lot ourselves and ask a lot of questions. At one point, we called in a case manager for people with dementia who need extra care. 

With the personal budget we receive, we can provide care that suits my father better than home care. Home care often involves a different person coming to visit, which is confusing for him. My father is Chinese and his Dutch is not very good. Communicating with him is difficult enough for us, let alone for a care provider who does not speak his language.

At first, I worried about my father every day. Thanks to a technical solution, we can now keep an eye on him remotely. This allows us to see where he is and what he is doing. We also have a schedule so that someone is with him every day.

Fortunately, he now attends day care regularly. That helps enormously. Among other things, we chose a foundation specifically for Chinese elderly people. They speak his language and understand his culture. He feels at ease there and has social contact.

It remains difficult for us, though. The roles have really been reversed – he sometimes feels like an extra child. But we are glad that we can take care of him this way. His quality of life remains good and he can stay in his own living environment.