Encephalitis changed our family life

Google Translate used. (På dansk længere nede)

We are a family of 5 who have been hit hard for the last 3 years.

My husband was going through an atypical and complicated course of illness since the 11th. October 2017, where he slowly got worse and worse.

Today, he has a hidden disability caused by brain damage after a encephalitis caused by the pneumonia.

2.5 years passed before he was diagnosed at a Traumatic brain injury center. During all that time, I have tried to apply for help at the hospitals, associations, organizations and at the municipality, however, it was difficult because he had no diagnosis.

For 3.5 months he was hospitalized, both in somatics and in the closed ward. 5 second opinions have been made, 6 MRI scans, 3 PET scans, 3 EEG scans, 4 spinal cord examinations and a lot of blood tests. But somatics and psychiatry opposed each other and neither of them had any treatment options for him. It was a really hard time.

I have resigned my position in the health field before he was discharged and have cared for him ever since. Why I'll come for social benefits. It is still a struggle in the municipality with care for the man, so I can get back on the job market.

Since on April 3, 2018 and has cared for him ever since. Why I came on cash benefits after finishing nursing care leave according to § 118 of the Service Act. I have applied as his helper, however, refused.

Our 3 kids were having a really hard time, but I was really lucky that the school management helped me with my fight for help and support for the kids. Unfortunately, it was too late for one of the kids. One of the twins at the age of 13 developed mental symptoms and was diagnosed with emotional disturbances in childhood due to his father's illness and poor well-being at school. I fought for her that she got the right help but the municipality took over the treatment responsibility and since everything is so slow she developed worse and worse, finally I asked the municipality to have her placed voluntarily in a school treatment home as I was afraid of her life would end.

The twin brother and the eldest daughter, who has just turned 18, do not have big opinions after that.

But our eldest daughter has been given a place in a college that she really wants to move into, but the bank has refused. We really support that her dream will come true as she has not had her youth for the last 3 years. Our home is limited because the husband's sequelae and late effects must be carefully considered.

He has fatigue, memory loss, problems with strategic planning and it does not take much for him to be overstimulated. At worst, he has developed organic psychosis, which was paranoid psychosis when the youngest got it hard with life. And we'd rather not go there again, as there is a limit to how much more our children can take.

We have been in our home for the last 3 years, have a hard time going on a trip, as the man should preferably rest 4-6 times in a day.

But the accidents will not end. We got bed bugs in the month of March where we have had to remove our laminate floor and throw it out when it broke. The floor below is ugly, worn and lacks boards at the door frames. We can not afford this either. We can not borrow money anywhere. Dust and dirt often come up from the subfloor, which has been there since the building was built in 1966. And when the bedbugs were over, we got scabies. The scabies treatment costs a fortune here in Denmark, which is why we are now behind with the rent. Scabies is so difficult to treat, especially when the infection comes back again from high school.

It is so frustrating to be the parent of children that one cannot afford to give new clothes to, especially when they are growing so fast in adolescence.

I hope there are some zealots out there in the world who might be able to help us in the challenges of our lives. Like I said, it's really humiliating to stand up, but I'm thinking of my little family, who's hit hard and the accident is not even created by us.

We miss the family we once were, but also accept the marked life change, to a certain extent, that it should not ruin our children's opportunities any more. At least that is my greatest wish and struggle for everyday life.

På dansk:

Vi er en familie på 5, der er ramt hårdt i de sidste 3 år.

Min mand gennemgik et atypisk og kompliceret sygdomsforløb siden den 11.. Oktober 2017, hvor han langsomt blev værre og værre.

I dag har han en skjult handicap forårsaget af hjerneskade efter en hjernebetændelse forårsaget af lungebetændelse.

Der gik 2,5 år, før han blev diagnosticeret på et traumatisk hjerneskadecenter. I løbet af hele denne tid har jeg forsøgt at søge hjælp på hospitalerne, foreningerne, organisationer og i kommunen, men det var svært, fordi han ikke havde nogen diagnose.

I 3,5 måneder blev han indlagt, både i somatikken og i den lukkede afdeling. Der er lavet 5 second opinions, 6 MR-scanninger, 3 PET-scanninger, 3 EEG-scanninger, 4 rygmarvsundersøgelser og mange blodprøver. Men somatikken og psykiatrien modarbejdede hinanden, og ingen af dem havde nogen behandlingsmuligheder for ham. Det var virkelig en hård tid. Jeg har klaget med et fællesbrev til Sundhedsministeren, Socialministeren og beskæftigelsesministeren.

Jeg har fratrådt min stilling inden for sundhedsområdet inden han blev udskrevet d. 3. april 2018 og har plejet ham lige siden. Hvorfor jeg kom på kontanthjælp efter endt plejepasningsorlov iflg. § 118 i serviceloven. Jeg har ansøgt som hans hjælper, dog givet afslag.

Vores 3 børn havde det virkelig svært, men jeg var virkelig heldig, at skoleledelsen hjalp mig med min kamp om hjælp og støtte til børnene. Desværre var det for sent for et af børnene. En af tvillingerne i en alder af 13 udviklede mentale symptomer og blev diagnosticeret med følelsesmæssige forstyrrelser i barndommen på grund af sin fars sygdom og dårlige trivsel i skolen. Jeg kæmpede for hende, men kommunen overtog behandlingsansvaret, og alt gik for langsomt, indstillingerne, prøvebehandlinger osv. er så og hun udviklede sig værre og værre, til sidst bad jeg kommunen om at få hende frivilligt anbragt i et skolebehandlingshjem, da jeg var bange for hendes liv ville ende.

Tvillingebroren og den ældste datter, der netop er fyldt 18, har ikke store mener efter det.

Men vores ældste datter har fået et tilbud fra et nyt kollegie i vores by, som hun virkelig ønsker at flytte ind i, men banken har afvist. Vi støtter virkelig, at hendes drøm vil gå i opfyldelse, da hun ikke har haft sin ungdom i de sidste 3 år. Vores hjem er begrænset, fordi mandens følgevirkninger og senfølger skal overvejes nøje.

Han har træthed, hukommelsestab, problemer med strategisk planlægning, og det tager ikke meget for ham at blive overstimuleret. I værste fald har han udviklet organisk psykose, som var paranoid psykose, da den yngste fik det svært med livet. Og vi vil hellere ikke komme tilbage igen i den grusomme situation, da der er en grænse for, hvor meget mere vores børn kan tage.

Vi har været i vores hjem de sidste 3 år, har svært ved at tage på tur, da manden helst skal hvile 4-6 gange om dagen.

Men ulykkerne slutter ikke. Vi fik væggelus i marts måned, hvor vi har været nødt til at fjerne vores laminatgulv og smide det ud, da det blev ødelagt. Gulvet nedenunder er grimt, slidt og mangler brædder ved dørkarmene. Vi har heller ikke råd til dette.

Vi kan ikke låne penge hvor som helst. Støv og snavs kommer ofte op fra undergulvet, som har været der siden bygningen blev bygget i 1966. Og da væggelus var forbi, fik vi fnat.

Fnatbehandling koster en formue her i Danmark, hvorfor vi nu er bagud med huslejen. Fnat er så svært at behandle, især når infektionen kommer tilbage igen og igen fra gymnasiet.

Det er så frustrerende at være forælder til børn, at man ikke har råd til at give nyt tøj til, især når de vokser så hurtigt i ungdomsårene.

Jeg håber, at der er nogle ildsjæle derude i verden, der måske kan hjælpe os med udfordringerne i vores liv. Som jeg skriver, er det virkelig ydmygende at udstille om os selv med vores udfordringer i livet, men jeg tænker på min lille familie, der er hårdt ramt, og ulykken er ikke engang skabt af os.

Vi savner den familie, vi engang var, men accepterer også den markante livsændring til en vis grad, at den ikke mere skal ødelægge vores børns muligheder. I det mindste er det mit største ønske og kamp for hverdagen.