Faces of Caregiving – Germany
Arnold Schnittger first became a caregiver for his son Nico six months after his birth. Nico had developed physical and mental disabilities after a difficult labour, meaning that he has been in need of constant care for 23 years.
Nico’s condition took several months to be diagnosed, meaning his parents had to learn to adjust to their new role in order to support his needs. Arnold was working as a photographer at the time, and spent the next six years working freelance in order to support his family as well as undertake his caring responsibilities.
However, Nico’s mother fell seriously ill, meaning she could no longer participate in the care of their son. Juggling the responsibilities of caring for a son with complex needs and working unpredictable hours was no longer possible – Nico required constant supervision, so Arnold had to give up his career.
“When I had given up work in order to provide care for Nico and our income was no longer enough to finance our lives, I had to apply for social assistance. We faced many hurdles when applying for financial assistance – the struggle with the authorities costs more strength than the care itself.”
Even though Arnold is now retired, he still cares for his son. As Nico’s mother made a recovery, Nico stays alternately with one of his parents who are thus able to share the caring responsibilities. However, Arnold and Nico live in a second floor apartment and since Nico is a full-grown man at age 23 and weighs about 75 kilos and has been in need of a wheelchair for many years, the physical impact of caring for Nico has been exhausting for Arnold.
On a day-to-day basis, Arnold has a brief respite as Nico is picked up by a special service who takes him to a respite facility for disabled adults where he spends six hours a day.
“While Nico is at the respite care, I will spend time taking care of the household, doing admin, keeping track of his treatment and medical appointments as well as running Nicos Farm e.V. which aims at building a housing project for disabled children and their parents.”
Due to Nico’s physical impairment, all activities take longer and have to be well planned. “I’m often very busy, but if I have a few minutes to myself, I like to take a rest or enjoy going out for a walk.”
The older Nico has become, the harder it became to care for him. Arnold says that care can be a full-time job, especially due to the nature of Nico’s condition.
“I see many possibilities for the improvement of support for carers in Germany, especially through government policy. I believe that there should be better frameworks for family carers. The financial impact alone to care for a loved one is very difficult and it sometimes feels that the struggle with authorities is more challenging than my actual caring role.”
However, being a caregiver for Nico means that Arnold has more contact with people, especially through his involvement in organizations related to care. It helps him to share his story and his challenges with other caregivers and prevents the feeling of isolation that caregivers might have.
“The feedback I get from other carers helps me to gather the necessary strength to continue to care for my son.”
Arnold tries to give Nico as much normality in life as possible and their bond is very strong. His relationship with Nico is very rewarding and he feels that he is ‘getting a lot back’ from being a caregiver.
“Spending time with Nico makes me very happy and I find my role life-affirming.”