The ALS house: – – We want some joy before we die

LØTEN (Dagbladet): There is an empty house out by Løten in the Inland. A large house, built to create joy and warmth, for those with few years left to live.

A place to stay where you can meet the few who are in the same boat. A port you can add, where you do not feel alienated, but taken care of.

The house is empty.

It is Wednesday afternoon and Dagbladet drives up to the large blue mansion, which has been turned into a haunt for ALS patients.

The managers of the house, Kjerstin Greve Løberg and Marie Thorud receive us at the entrance and welcome «welcome», with pride in their voices.

We hear laughter at the dining room a few meters away, and it smells good from the kitchen. Homemade cake and Christmas food are on the menu. This Wednesday, the house will finally be taken into use, at least for one day, after being empty for 52 of 53 weeks.

For two years, Tian Eiendom has been working on renovating the house, which is called the Rosenlund Park ALS house. The building is designed for ALS patients, who will have the opportunity to visit the house when they need a relief stay.

Inside the living room are ALS patients Ivar Talmoen (59) and Cathrine Nordstrand (51). They sit with the rest of the board in “Always A Little Stronger”, and prepare for a visit from Sylvi Listhaug and Bård Hoksrud (Frp). The ALS group wants to convey how much they need the house on Løten, and praises themselves happily that someone with political power comes to listen to them.

Nordstrand says that she, Ivar and the other ALS patients in Norway “want a little joy in life before they die”, and hope it is something they can help with power.

– Very little understanding

Ivar Talmoen got ALS in 2019. Talmoen has a slow version of the ALS disease, which means that he has a slightly longer lifespan than the estimated time, of between two to three years.

He is clear in his speech and hopes that someone from a high political level can be trumped through a scheme, which means that he and other ALS patients with a short time left to live, can spend several days at Rosenlund Park.

– What I experience is that there is very little understanding of the challenges we have with this diagnosis. When we apply to come here, the individual understands that it is good for us, but the system does not understand it, Talmoen tells Dagbladet.

He says that it is important to take the physical and mental elements into the assessments when offering a respite stay. Talmoen’s impression is, however, that the responsible authorities only look at the physical preconditions for such assessments.

– If you get a place to sit, a bed, medicine and food, then it is fulfilled. While here one can live. You can be yourself and you can influence your own everyday life. I do not experience that you get in a nursing home.

Dagbladet has interviewed Cathrine Nordstrand about the ALS house earlier.

– Must take action

– It hurts so much to see that everyone who wants to stay is rejected. To me, this is incomprehensible. We believe that there is a lack of competence in this system, which should actually be designed to make the correct assessments of such applications, says intensive care nurse Marie Thorud to Dagbladet.

– I am afraid that it is the systems towards the decision-makers that are deficient, or are implemented by people who do not have to relate to interpersonal conditions, but to the budgets.

Thorud says that everyone who has applied for a stay at the Rosenlund Park ALS building has received a no from the municipalities and districts in Oslo. They believe that they themselves have sufficient offers to bring to the patients, for example in the form of relief stays in nursing homes.

– For someone with ALS, it may be perfectly ok to stay in a nursing home, but the ALS patients I have spoken to want their stay here at Løten. These are people who have an average of 2.7 years left to live, from the time they learn about the disease.

– It happens that they are admitted to departments where they absolutely do not thrive, and where the employees have far too little knowledge of ALS. When their families need relief, they deserve to come here. I beg the government to take action. This is an offer that is clear.

Thorud says that there is also a pain limit on how long they can still leave the house unused. She believes that those who are sick need joy in their lives before they die.

Dagbladet has previously discussed this case, where the municipalities that have rejected ALS applications, have had to explain themselves.

Listhaug: – A shame

Party leader Sylvi Listhaug and parliamentary representative Bård Hoksrud sat for several hours that day and listened to the ALS board, which told about the situation. They want political help at the municipal level to introduce new measures that can make their dream possible.

Listhaug and Hoksrud make it clear to them and Dagbladet that they will work hard to ensure that their wish is fulfilled, and they explain how.

– First of all, I would like to say that it is a great shame that Norwegian municipalities reject their opportunity to come here, and rather offer them a nursing home place, the party leader says to Dagbladet.

Listhaug has followed ALS closely for several years and has registered that many affected people are young people who have nothing to do in a nursing home, but who would have had much better from being at Rosenlund Park.

– Where they can meet people in the same desperate situation, talk together, exchange experiences, get tips and advice. Because I think you have to have this disease to understand it. We will take the initiative now to find state money to be able to maintain operations here and ensure that those who want it will be allowed to come here.

– Unworthy

– Why do you want to help ALS patients?

– I know it is a small group, but I use to say that it is the worst disease you can get. It is the certain death. You lose strength, the ability to move and eventually you are almost suffocated.

Listhaug says she sees how ALS patients have to fight against the system and the bureaucracy to get the help they need. It has made a very strong impression.

– Instead of spending the last time they have left, to be with the family and make the best of it, you have to spend so much time fighting against the system. It’s unworthy. That is why it is important for us to make the everyday lives of these people better.

– Will challenge the parties

– When can this be done?

– I hope we can quickly do something here. There is no doubt that it is about the will to find the money. says Bård Hoksrud to Dagbladet.

Hoksrud says that he will challenge the health and care committee to come to a meeting with ALS patients, such as Cathrine, Ivar and others. They want to meet the health committee and look them in the eye and tell them how their everyday lives and lives are.

– We will work to show how important such an initiative is and what it means. We want to arrange this meeting in January. Then we hope representatives from the various parties show up, says Hoksrud.

– This is something we will challenge the rest of the parties to participate in. We want to help ensure that they can pursue this further, Listhaug concludes.

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