In the spring of 2021, Anne-Karin Austvik was diagnosed with ALS. She had four relatives around her. Three daughters and a husband. And none of them had imagined how demanding the time ahead would be. How much work came with being a relative. The first floor of the house had to be rebuilt and adapted. The job had to be downgraded. Own time disappeared. At the same time as the family was in mourning. A life crisis. Anne-Karin died in May. – It’s a bit like having passed an exam or completed a huge project, and now it’s over. Now it’s finished, says daughter Marit Austvik Letnes. The family says that the voice was one of the first things Anne-Karin lost. – But the curve slowly went down. We had nice days and a nice time together. We went skiing, went on trips and had many great cultural experiences. And then two years passed, and then the curve went down more sharply. Then it went quickly, says Svein Olav Letnes. Photo: Remi Sagen / news Relatives = construction manager? The widower Svein Olav Letnes still lives in the brown, large house in Molde. The house that had to be rebuilt so that Anne-Karin could live at home. Since Marit lives just across the street, and the other two sisters live elsewhere in the country, it was she who took on the extensive job as construction manager. The door frames had to be made bigger to accommodate a wheelchair, the thresholds had to be removed, and not least they had to build a bedroom and bathroom on the first floor. – There is an incredible workload that is pushed on relatives, says Marit. Marit Austvik Letnes says they are a resourceful family, and feels particularly for other relatives who do not necessarily have that. Photo: Remi Sagen / news Because it wasn’t just the building process and the applications linked to what was demanding. What were they right about? What aids did they have to provide? How should the house actually be adapted? Who should they contact for all the various questions? Which actors should they contact? – One thing is the administrative; to check what we are going to do, go to meetings, find out about offers and rights – but then there is the job of applying for the things, checking that it goes through, that people understand each other, she says. – But there is also the emotional part. You are in a waiting period. In the end, the family found an apartment that was universally designed and suitable for disabled people, but by then the construction process in the house had already started. Photo: Remi Sagen / news Critical of everyone staying at home The daughter believes it is a dangerous way to go that the elderly and sick should now “stay at home as long as possible”, as her mother did. Large parts of the nice, last time they were supposed to have together before Anne-Karin died were about arrangements. – I wanted to sit and read poems by her bedside, me. I didn’t want to find out millimeter measurements on an electric toilet. Svein Olav Letnes is happy about the time he had with his wife. And he clearly appreciates all the help he has received from his daughters. Photo: Remi Sagen / news The father Svein Olav understands that it has demanded a lot from his daughter. He had a different role as relative than he had. – There was no stress. Those were calm, nice days. And I have to make a special mention of the home care, they were great. It was probably a different situation for you, says Svein Olav and looks away at his daughter before continuing: – You had so much else to balance. I only had Anne-Karin. I had an easier job like that, he says. With tears in her eyes and a shaky voice, she answers. – I felt that my job was for you to have a good time with her, says Marit with tears in her eyes. It took around a year from when they started the application process to adapt the apartment and rebuild before Svein Olav and his wife Anne-Karin were allowed to move in. In December 2022, they moved in again. She died in May 2023. Photo: Remi Sagen / news “Stay at home as long as possible” Municipal director in Molde, Marianne Stokkereit Aasen, says that being a relative is demanding in itself, and all the more demanding to get an overview of what aids are available and what help you can get. – Here in Molde, we will soon open a new health and coping arena, where we have gathered all the aids we have available in the municipality. It is in collaboration with NAV. We hope this will make it better for relatives and users, says the municipal director. Municipal director Marianne Stokkereit Aasen admits that there are now too few homes that are universally designed in the municipality, but says that they are working to build more. Photo: Remi Sagen / news And she believes that it is realistic that you should be able to live at home for as long as possible, but: – We have to think with a different expression: “We should live as long as possible in our own home”, and then it may be that we have to change homes on the road – in order to make it. As a 55-year-old, I should already be thinking about where I will live when I am 70-80 years old. A recent survey by the Development Center shows that several relatives find it burdensome: Survey among relatives The Development Center published at the end of August a report from the survey of relatives “taken care of”. The central findings show, among other things: Of those who were relatives of someone with a long-term need for help and who received help from two or more services, four out of ten answered “no” to whether the service recipient has a coordinator who coordinates the services. Half answered “no” to whether an individual plan has been drawn up or is being drawn up. For those who have a coordinator, one in three relatives stated that the role of coordinator does not work and that it is relatives who have to coordinate most of the help. More than a third felt that the coordinator role only works partially. Of those who have the right to be involved in the service recipient’s individual plan, just under four out of ten felt that they were largely involved in getting information and being able to contribute. Half stated that they did not have a permanent contact person in the service or that they did not know if they had one. Six out of ten answered “No” to whether they feel that the service offers a sufficient number of calls in relation to needs. Nearly three out of ten felt that the relief they receive from the service is only marginally adequate. Almost half answered that they experience it as a mental burden to carry out caring tasks. At the same time, almost as many stated that they think it is nice to be able to be a resource. Will work to get information out State Secretary in the Ministry of Health and Care, Ellen Rønning-Arnesen, will emphasize that it is not a goal for everyone to stay at home for as long as possible, but to live as safely as possible. – So we know that many people say they want to stay at home, but when they feel that the situation is not safe enough, the public sector must of course provide the necessary offers. She says that it is a public responsibility to make arrangements for the next of kin, and that there are many things that can be put in place. – In the notification to the Storting that we just put forward, we say that it will be easier to find the information. This is also what the relatives’ alliance tells us, that here relatives spend far too long looking for information. Rønning-Arnesen adds that she hopes the municipalities work to get the information out. Marit Austvik Letnes and Svein Olav Letnes dream of better coordinator services and more communication between the various actors. Photo: Remi Sagen / news – Brutally Marit Austvik Letnes and her father Svein Olav are calling for better solutions in several areas. It should not be necessary for relatives to feel that they have to take a bachelor’s degree in aid management and public administration in order to understand how to proceed when they are affected by a serious illness in the family, believes the daughter. She dreams of better coordinator services. – It is brutal. Extremely brutal, says Marit as the tears roll. Hi! Do you have any tips or thoughts about other matters or topics that I can look into more closely? Feel free to send me an email!
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Marit Austvik Letnes in Molde believes relatives are given too much responsibility – news Møre og Romsdal – Local news, TV and radio
