Ingegerd Rubensson in Värnamo has taken care of her sick son for over 25 years. After her adult son suffered a brain injury, she and her husband Egon decided to move him back home to look after him.
"You can't say 'no'," she tells Swedish Radio's P4 Jönköping channel, adding, "I'm his mother."
Over the years, Ingegerd Rubensson has cooked and cleaned and seen to it that her son takes his medicine. She has managed all contacts with healthcare services and the municipal council, and she has made sure he is not alone. Seven years ago, he moved to his own small flat and the council provides home help to assist with his medication in the mornings. However, he still comes home to his parents every day to eat and have companionship.
Ingegerd Rubensson is far from alone. The number of people who take care of a relative is increasing, and society relies on their volunteer efforts to keep costs down. Today, over 1.3 million families in Sweden regularly care for a relative due to illness, disability or age, according to the Swedish National Audit Office (Riksrevisionen).
Its report in 2014 "Stödet till anhöriga omsorgsgivare", ("Support for carers") found that many relatives are sometimes forced to take greater responsibility for the health and social care of family members than they can manage. At the same time, they do not receive the support from public authorities that they need.
According to Swedish law, providing care should be a voluntary commitment for a family member and should serve as a complement to existing formal services. According to the government however, in practice, formal services are a supplement to the care carried out by family members.
The Social Services Act of 1998 and 2009 had the aim of clarifying the municipalities’ responsibility to support carers. Following the amendment to the law in 2009, municipalities must offer support to carers.
The Swedish National Audit Office recommended in its report that the Government should do more to improve conditions for municipalities and county councils to give support to relatives.
However, Swedish Radio reports that three years later, the situation has not improved, in fact it has deteroriated.
"It is obvious that the pressure on relatives has increased," says Ann-Britt Sand, a researcher and lecturer at the institution for social work at Stockholm University.
The efforts of volunteer carers save Swedish society over SEK 181 billion kronor each year, according to the Swedish Family Care Competence Centre (Nationellt kompetenscentrum anhöriga). That's a lot of money, Ann-Britt Sand says, adding that without the efforts of family members, society would collapse.
"It would collapse completely. With the savings in health and care services, the burden on families will increase," she says.
"When I'm meeting relatives, I remind them that they do not have this obligation. We have a system where this should be on society, and relatives should only do what they can and want to do, and that should be enough," Ann-Britt Sand tells P4 Jönköping.
Ingegerd Rubensson says that it has been a tough few years trying to get help from the council that she needs for her brain-damaged son. Finally, she says, someone has listened and understood what they need for support.
"Yes, he will receive a place in a home for people with brain injuries where he will receive overall nursing care, and that will be so good," she says.