Mothers of daughters

  At the beginning, we didn't know what to expect. Our daughter Lousie had no insight into her illness for a long time, so we as parents were the ones who had to make decisions and take actions – often without knowing exactly what was right. Over time, we sought professional help, and it was important to recognise our own limits. We had to learn to delegate tasks and share responsibility. 

A turning point was when our daughter herself was willing to accept help. We built up a network of professional support that continues to help us today. Our daughter now accepts this help, which is a great relief. However, it was not always easy to step out of the carer role. Often, our ideas of a ‘good life’ were at odds with what our daughter wanted or was willing to accept. Earlier we had tried to keep our hopes of recovery alive by being active. However, it happened that we were more focused on our own concerns than on her current needs.

My husband now describes himself as our daughter's companion. ‘I see myself as someone who helps her to develop and works on the relationship,’ he says. ‘It requires a lot of flexibility and is often like a to and fro - back and forth. It's not always just forward. But we all learn from each other.’ Especially at the beginning, it was difficult for him to deal with our daughter's speechlessness and emotional distance. But with growing experience and understanding, we are both learning to deal with it better.

For us, it is not so much a role as an attitude. As parents, we remain connected to our daughter, regardless of her behaviour. We offer her our presence and never lose sight of the fact that behind the illness, the healthy nature of our beloved daughter always shines through. This conviction – that sensitivity and kindness are always present and visible – helps us to stay connected to her and keep going even in difficult times. This idea of fundamental health underpins our relationship.

Our daughter also receives support from other family members. She occasionally spends time with her brothers and sisters, grandparents and aunts. She can visit or call them and feels accepted by them. Shared activities such as cooking or going on holiday are particularly helpful for her and for us. However, this was not always the case. At first, her brothers and sisters kept their distance and avoided contact. Now they have found ways to spend time with their sister.

Getting our daughter involved in a support network was a big step forward. She now lives in a shared flat, has a work structure and a personal professional carer. This has relieved us of many tasks. It was a learning process to trust her to take responsibility for herself. Our confidence in her ability to develop has grown over the years.

It was particularly important for us to find our way around the care landscape. We have learned to use networks such as a family self-help organisation and a specific setting for exchanging thoughts with other relatives, people affected by a mental illness and experts (called “Trialogue”). This helped us to gain new perspectives and better understand support options such as medication and other treatments.

My husband says: ‘Sometimes when I see young people in professional training, in relationships or hanging out with friends, I feel sad that our daughter is limited in her options.’ But over time, we have learned that her withdrawal is not always a sign of relapse or a psychotic episode, but often a way to recover from the stresses of life and find some peace. We appreciate that she has found her way, even if it is different from what we might have imagined.

We now also understand that participating in everyday things from a distance, such as sitting in a café or on a bench, is her way of being among people without feeling overwhelmed. It is her life, and I have learned to respect it as it is right for her.

Looking back, we realise that seeking professional support has been particularly helpful for us. It has helped us to recognise our own limitations and to let go of the idea that we have to do everything alone. Today, we share responsibility with a network of people, and our daughter has people by her side whom she trusts. This process has strengthened us as a family and enabled us to better deal with the challenges of her life and our role as relatives.