Today, Göran lives in a nursing home in Båstad municipality, but he lived at home with his wife Helena for many years.
Their experience of living with ALS, both as a victim and as a relative, is that it is an eternally heavy struggle.
- I have never had anyone who guided us in this organization with the municipality and the county council.
We have been completely alone, says Helena Rooth Svensson.
Hear Helena Rooth Svensson talk about what it is like to live with ALS as a relative in the clip above.
Want an individual plan for ALS sufferers
When Göran lived at home, he and Helena had twelve hours of relief a week when Helena could leave home and recharge her batteries.
Today, Helena Rooth Svensson visits Göran every day for several hours to give him the intellectual stimulus that she believes he does not get in the nursing home.
Helena Rooth Svensson requests an individual plan that has been drawn up by a specialist doctor and the municipality.
To make it easier for all parties.
- I think the care must pay attention to this part that relatives take the big heavy part of the care out of ALS sufferers, says Helena Rooth Svensson.
No requirement for individual plans
Båstad municipality believes that there is no requirement to automatically establish individual plans for neurologically ill patients, but that it can be done.
- It can be important to draw up such plans, says Christin Johnsson, head of health and care in Båstad municipality.
Higher risk of dying as a partner of ALS sufferers
According to the report from Karolinska Institutet, partners running into someone who has suffered from ALS are twice as likely to commit suicide.
- It has been so many years where the struggle has been maximum all the time.
In the end, you become energy drained and exhausted and then only dark thoughts come, says Helena Rooth Svensson.