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Ristova (Angehörige, Ehefrau)

In January 2020, Ms. Ristova took her 40-year-old husband to the emergency ward of the nearest hospital with severe headaches.The Macedonian family only speaks broken German and the incident took place on their last day of holiday. The attending doctor sent Mr. Ristova back home as he diagnosed only muscle tension. Mr. Ristova suffered from classic symptoms (severe headaches, nausea, high blood pressure) for a week until he lost consciousness. By that time, the bleeding was already so advanced that his life hung by a thread for several weeks. The ambulance service informed Ms. Ristova that her husband might not survive the flight to the central hospital. Mr. Ristova survived the subarachnoid haemorrhage, and spent several weeks in intensive care unit, where he was ventilated and completely monitored. He needed a tracheotomy until he could breathe independently again. Mr. Ristova learned to move all parts of his body again and has been living with his family since his stay at the rehabilitation clinic. Nevertheless, Mr. Ristova is unable to return to his old life. Due to the brain haemorrhage, he has pronounced neurological deficits that do not allow him to return to his usual working life. He very much wants to work in construction again. However, as he no longer able to carry out actions consistently and is unable to complete simple tasks, he is accompanied daily in a sheltered workshop. He himself does not recognise the deficits and feels unfairly treated, which has an increased potential for conflict. Ms. Ristova is overwhelmed by the situation. Together with her husband, she has two children aged eight and 16 (time of bleeding event). She describes her husband as a third child, who she is also caring for. Her husband used to have two jobs, helped with the housework and helped the children with their homework. At the time of the interview, Ms. Ristova was doing the housework alone, securing the family income and taking care of the children. She described how exhausted she was, how she needed psychological support and how she urgently needed to regain her strength. The interview took place in August 2021 with the wife in their shared flat.

AUDIO

Her husband was not taken seriously in the emergency ward

Mr. Ristova presented to the emergency ward with severe headaches and was sent home with a diagnosis of "nerve tension". He suffered from severe headaches, high blood pressure and nausea for a week. After collapsing unconscious, he was flown by Rega to the nearest central hospital.

Video Interview

TRANSCRIPT

And afterwards, the next day [after the onset of severe headaches], on a Sunday, I asked him: "Please", because in the morning he started vomiting and he had crazy eyes (showing dark circles), as well as puffiness, yes, you could tell something was wrong. And he'd been on holiday for three weeks. Company holidays. And we went to the emergency ward. And yes, they asked: "Yes, what have you done? Until now". He said "I've had three weeks' holiday. Tomorrow I have to go back to work". They didn't take him seriously. Yeah, probably "three weeks holiday, back to work on Monday, they were like a bit/ clearly (laughing). He said: "I'm really in a lot of pain. I've never had pain like that before". He's had headaches a few times. But that comes from there (points to back of head). And the doctor said: "The nerves are probably tense" (points to his back and moves his hand up to his neck). He gave him medication and a certificate for two days and on Wednesday he saw the GP. And she also saw, with the medication he gave her, and, she did all the checks. Sugar and everything. And again on Friday she gave him another appointment/ they all came so well, but blood pressure is always 180, 160 and she said: "we have to find out why it stays so high." And she wanted to give him another report for the next week. And he said: "No, I'd rather go to work, it's too much. I've been staying at home for four weeks. Too much." And just went to the employer with the certificate and said: "No, I'll come in on Monday." And the employer also noticed a little that he walks like that and with that, that something is wrong. And he said, "(name of person concerned), look, if you're not well, really, you stay at home". "No, I'll come on Monday". And on Saturday he had a football match with his son. The whole day. But you could see that he really wasn't well. I said, "If you're not well, please don't go". "No, I'll try again." And when he had just come home, he had said to me on the phone: "I'm hungry. Is there bread at home?" I said: "No. Are you doing the shopping?" He came in, put the bread down and went to the toilet and I sat there (points to the couch), I heard a "boom" from the toilet, I said "yes", I went to knock. "(Name of person concerned), open the door." He also/ closed the door. "Open the door". He didn't respond. I knocked again: "open the door", he came to the door. He probably sat there because said he was swollen too. Just, say the lavabo (sink) is straight/ probably he has so (shows sideways fall) because he was sitting there. And was by the door, he opened it. Lies. At that moment I was shocked. I gave him a blood medication (blood pressure medication) at that moment. And I immediately rang the emergency services.

Other experiences by Ristova (Angehörige, Ehefrau)

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Ristova (Angehörige, Ehefrau)

In January 2020, Ms. Ristova took her 40-year-old husband to the emergency ward of the nearest hospital with severe headaches.The Macedonian family only speaks broken German and the incident took place on their last day of holiday. The attending doctor sent Mr. Ristova back home as he diagnosed only muscle tension. Mr. Ristova suffered from classic symptoms (severe headaches, nausea, high blood pressure) for a week until he lost consciousness. By that time, the bleeding was already so advanced that his life hung by a thread for several weeks. The ambulance service informed Ms. Ristova that her husband might not survive the flight to the central hospital. Mr. Ristova survived the subarachnoid haemorrhage, and spent several weeks in intensive care unit, where he was ventilated and completely monitored. He needed a tracheotomy until he could breathe independently again. Mr. Ristova learned to move all parts of his body again and has been living with his family since his stay at the rehabilitation clinic. Nevertheless, Mr. Ristova is unable to return to his old life. Due to the brain haemorrhage, he has pronounced neurological deficits that do not allow him to return to his usual working life. He very much wants to work in construction again. However, as he no longer able to carry out actions consistently and is unable to complete simple tasks, he is accompanied daily in a sheltered workshop. He himself does not recognise the deficits and feels unfairly treated, which has an increased potential for conflict. Ms. Ristova is overwhelmed by the situation. Together with her husband, she has two children aged eight and 16 (time of bleeding event). She describes her husband as a third child, who she is also caring for. Her husband used to have two jobs, helped with the housework and helped the children with their homework. At the time of the interview, Ms. Ristova was doing the housework alone, securing the family income and taking care of the children. She described how exhausted she was, how she needed psychological support and how she urgently needed to regain her strength. The interview took place in August 2021 with the wife in their shared flat.

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Ristova (Angehörige, Ehefrau)

Her husband was not taken seriously in the emergency ward

Mr. Ristova presented to the emergency ward with severe headaches and was sent home with a diagnosis of "nerve tension". He suffered from severe headaches, high blood pressure and nausea for a week. After collapsing unconscious, he was flown by Rega to the nearest central hospital.

Experience of disease

Brain damage

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Ristova (Angehörige, Ehefrau)

Mr. Ristova has lost many skills

Ms. Ristova has to support her husband in everyday life. This is shown, for example, by the fact that she has to prepare the food very carefully. The school-age son does not get any support from his father with his homework.

Challenges after brain damage

Brain damage

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Ristova (Angehörige, Ehefrau)

Mr. Ristova is very sad that he is no longer allowed to work in construction

Mr. Ristova lives with severe cognitive impairments and is not allowed to lift weights to reduce the risk of bleeding. His wife is grateful that he found employment in the sheltered workshop, as he would become depressed at home.

Challenges after brain damage

Brain damage

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Ristova (Angehörige, Ehefrau)

Ms. Ristova keeps blaming herself

When Mr. Ristova showed first symptoms, he reluctantly went to the emergency ward where he was sent away again. Only when the bleeding was so severe that he lost consciousness that he received proper treatment. Ms. Ristova still blames herself for not insisting on treatment earlier, even though everyone tells her how well she responded.

Impact for loved-ones

Brain damage

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Ristova (Angehörige, Ehefrau)

"Daddy has a headache"

It was difficult for the son to understand why his father's life was hanging by a thread, since he "only" had headaches. Even though he found mental support in his football club, he was getting worse and worse at school.

Impact for loved-ones

Brain damage

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Ristova (Angehörige, Ehefrau)

"I can't do everything on my own"

Ms. Ristova had two jobs, took care of the children and contributed to the household. Ms. Ristova is now responsible for everything on her own and describes how stressful her everyday life is.

Impact for loved-ones

Brain damage

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Ristova (Angehörige, Ehefrau)

Probably her husband suffered the brain haemorrhage due to the family disposition

The father of the affected person also had a brain haemorrhage. Now Ms. Ristova wonders if her children are also at risk.

Impact for loved-ones

Brain damage

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Ristova (Angehörige, Ehefrau)

Ms. Ristova needs more time for herself

Ms. Ristova is still looking for strategies to cope with her everyday life. She wishes she could reduce work in order to regain her strength.

Lessons and strategies

Brain damage

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Ristova (Angehörige, Ehefrau)

Perception/insight of illness: Mr. Ristova feels healthier than he is perceived to be by those around him

Ms. Ristova reports that her husband is no longer working in his old job due to neurological deficits. This puts a lot of strain on him. He himself rates his state of health as good. The family doctor and the SUVA counselling see that Mr. Ristova needs to recover further before he is able to work again. At the time of the interview, he was working in a sheltered workshop in order to live in a regular daily rhythm.

Procedure after brain damage

Brain damage

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Ristova (Angehörige, Ehefrau)

"No, you are not allowed to remove the tubes"

Ms. Ristova's husband became severely delirious while in the intensive care unit. While trying to remove tubes and leave the hospital, he was given protective gloves by the nursing staff that restricted his movement.

Procedure after brain damage

Brain damage

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Ristova (Angehörige, Ehefrau)

Mr. Ristova did not want to go to hospital

Mr. Ristova hesitated to contact the emergency services. In other interview passages, Ms. Ristova says that she was then able to take him to the nearest emergency ward after all, where he was sent home with a diagnosis of "tension". He was only hospitalised when he lost consciousness.

Decision-making

Brain damage

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Ristova (Angehörige, Ehefrau)

Mr. Ristova was predicted to live with very many disabilities

During the acute phase, Mr. Ristova's life was acutely threatened. The doctors predicted a life with many physical limitations. Today, Mr. Ristova lives with his family again and can move everything. However, his mental abilities are limited.

Decision-making

Brain damage

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Ristova (Angehörige, Ehefrau)

Mr. Ristova was confused

Mr. Ristova had been in a coma during the acute phase and needed a tracheotomy to support respiratory function. When he woke up again, he could not speak because of the tube in his throat. Days later, his wife noticed how confused he was. Medical staff call such a clinical picture a "delirium".

Decision-making

Brain damage

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Ristova (Angehörige, Ehefrau)

Mr. Ristova needed protective gloves

Mr. Ristova was very confused in the first weeks after the coma and was looking for reasons to leave the hospital. It happens that patients try to remove vital cables or drains. For their own protection, they are given protective gloves or have their hands fixed to the bed. Fixation measures are in the area of tension between autonomy and care. On the one hand, they make therapy possible in the first place, on the other hand, they strengthen the urge to free oneself and break off the therapy. For relatives, it is often terrible to visit their loved ones in this area of tension.

Decision-making

Brain damage

View all experiences

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