Working full-time and caring: “I should have made it clear earlier what my limits were”

When Josje (30) received a phone call from her brother four years ago, her life was turned upside down. Her father Jos suffered a rare nerve disorder that made him unable to move his body. He was admitted to intensive care several times. “It was terrible to see,” Josje recalls. “Besides my work, I was taking care of him every day. It felt like I had a full job on top of it.”

In the beginning, it was not clear whether and how her father would continue to live. “He had several moments when things suddenly got worse,” Josje explains. “Sometimes he seemed to be doing better, and a moment later he was on all kinds of devices again. I found that very frightening.” Because her father could no longer do anything himself, Josje did little things: massaging his hands, putting a cold cloth on his neck, rubbing his arm for a while. “You feel powerless, but you still want to mean something,” she says. For informal carers in such a situation, a listening ear can make a lot of difference. Mantelzorg Nijmegen offers that initial support and the realisation: you don't have to do it alone.

Home-based informal care begins

After about three months, the situation became stable enough for rehabilitation at St Maartens Clinic. A lot changed for Josje: the stress of survival gave way to daily care. Almost daily, Josje went to St Maartens Clinic after work. “We didn't know what would come back. Every exercise showed what he could still do,” she says.

When her father was allowed home after four months, the informal care really began. “My mother and I divided the tasks: she helped with washing and dressing, I with the exercises. It was important for him to keep using his body actively. That required a lot of time and energy, but we both wanted things to get better.”

Out of bed early

Every morning before work, Josje helped her father exercise. Lying still at night gave him painful stiff muscles. ‘Every morning I helped with the exercises. While he was lying on the bed, I helped move and stretch his limbs. It was very painful for him, but we both wanted him to learn to walk again. So we kept going.“

On autopilot

Caring combined with a full-time job felt natural, but in retrospect Josje realises how tough it was. “I just kept going. After a long working day, I drove straight home or to the Sint Maartenskliniek. Only much later did I wonder how I kept all that up.” Practical tips from the clinic helped her with exercises and daily actions. “But what it did to me mentally, I didn't think about that.”

When things calmed down, Josje herself sought help from a counsellor. “Talking helped to get it off my chest. There I learned: I AM not just a carer and employee. I am also just Josje. “Being there for someone else does not mean you have to forget yourself.” That is exactly what Mantelzorg Nijmegen offers: someone who listens and reminds you that you are more than just an informal carer.”

You are in the middle of it

Talking about her feelings found Josje difficult. “We lived from day to day. Sometimes I didn't know if it was the last time I saw my father. In corona time, visiting hours were limited and at my work there was little space or understanding. People literally said, ‘Yes, but you do have to work.’ I did my best, but actually more than was good for me.”

Space for own life

Her father is now able to live independently again. “I am immensely proud of that. And grateful that I was able to help him.” For Josje, space for herself slowly emerged again. She quit her job, went travelling alone and found a new balance. “I now feel what I want again. This year I am starting a new study. I really couldn't have imagined that back then.”

Josje's advice to other carers

During her time as a carer, Josje learned a lot about herself. “I tried to do everything at once. Nothing was too much. But in retrospect, I see that I forgot myself. The balance between work, informal care and private life was lost.” Her tips for others:

• Stand up for yourself. Seek help with the rules out there for carers and at your work.
• Indicate your limits in time.
• Talk about it. Find someone to think with you about your mental health and work-life balance, for example at Mantelzorg Nijmegen.

Informal care is valuable, but continue to take good care of yourself too. Support from Mantelzorg Nijmegen can make a world of difference. Do you recognise yourself in this story? Or would you like to talk about what we can do for you? Please contact us:

• Call: 088 - 0011333
• Mail: info@sterker.nl

Good to know: our support is free of charge.