My story

[XxladyxX]

So my mom was diagnosed with encephalitis in october 2019 she stayed in hospital for 9 weeks and was in intensive care she was very lucky she pulled through. Nearly a year on she still has no memory or belief of what happened and being in hospital and has lost many years of memory including the birth of her granddaughter and the loss of her parents. Everyday is a constant battle of repeated conversations. She has no motivation left, she doesnt want to get dressed or leave the house, she knows her brains not ok but thats it. Any advice would be great i suffer mental health issues myself since watching my mom be so ill. We just want her back but shes lost inside her own head.

[Archer6]

I was diagnosed with autoimmune encephalitis in October 2018 and was in the hospital for 2 months. I don’t remember being in the hospital or much that has happened for 5 years before that. Up until recently, I used to ask a lot of questions over and over again because I would forget the answer. I could see the frustration in my family having to repeat things, especially unhappy things over and over again so I stopped asking. I would rather not know than to feel like a burden to my family. I was able to piece together some notes and photos, etc. and wrote up my own history so I could refer to it whenever I wanted without bothering anyone. My wife saw it and wrote up more detailed information that filled in a lot of gaps and gave me a history I could refer to as often as I needed. That helped so much.

If I could, I would stay in my bedroom all day. But I have to get up and work. I don’t want to leave the house. I just want some safety and security. It feels like the entire universe changed drastically while I was sick and boom! Here I am in the future and I don’t know how I got here or what has changed.

I am also terrified that I’ll fall asleep and again the world will be completely different when I wake up.

A routine might help. Doing the same things at the same time every day may provide some useful structure. Maybe your mom feels similarly to me… everything has changed so much—I don’t want any more change! I just want security and safety and as few changes as possible. You could gradually add an activity or something to the routine. A small change, then another and another. Oh, and encouragement helps. I love hearing from my wife that I am doing better. A smile and a reassuring word from her goes a long way!

Hope this helps.

[Paula-38]

Well I can empathize with one or two things i.e I was in an isolation ward when I was in the acute phase of the illness back in 1977 and because I had jyat had my first Birthday, I had no belief or memory of what happened to me neither, even a year later I would have only been 2 I never recalled any of that.

I have also suffered from depression and lack of motivation. I take a type of anti-depressant called a Selective Serotonin Reuptake Inhibitor, otherwise I wouldn't have any motivation either, but you can suggest to your mom about these types of medication together with CBT is best. Its best to get your mom referred to a neuropsychiatrist for a mental health diagnosis, and a referral to your local mental health team who might have a psychologist who does CBT, or a specialised CBT therapist in your local area. Hope this helps