Herpes simplex encephilitis - no change

[Purpleball]

my mum was diagnosed with hsv encephilitis last November. She was discharged from hospital in April into a neurological rehabilitation centre. She can walk and talk but does not know who anyone is, doesn’t know where she is, has no memory of anything, is self neglecting as refusing to wash, she has to be promoted to do anything and gets no enjoyment from anything. We were told last week that an mri was completed in hospital which showed that the infection had spread more than we were aware and that if we were going to see any changes we would have done by now. So this is it and I hate it. I don’t want my mum living like this and she would be livid if she had any idea. How do you deal with feelings of just wanting a loved one to die, I know this sounds awful but the thought that my mum could live for another 20 years like this is terrifying.

[EncephInternational Partner]

Hi, this sounds devastating. If you would like to speak to anyone at Encephalitis International, if you haven't already, please do get in touch.

[e-mail] or [phone]

We also have online peer support groups where you can virtually meet and chat to others in similar situations - encephalitis.info/online-pe...

[Gandalf2]

Hi Purpleball, sorry to hear about your situation. I was in a similar condition to your mum when I left hospital with auto immune encephalitis. With practice I could attempt and manage a few of my essential tasks on my own. I'm 74 and in my fifth year of recovery and can cope with most situations OK. I don't go out on my own but can walk around quieter areas and some busy ones if I'm with my wife. We have just returned from a caravan holiday in Scarborough and that went well. When first discharged, a walk to the end of the road was too much.

I have a couple of friends left but most people can't understand the extent of what Enc. entails. I have short term memory loss so stick to the internet for news etc. The TV is too flashy and vivid, so I haven't watched for 5 years. It's imprortant to try and improve with mental and physical exercise. I can't taste or smell anything now, which was a big blow as I used to enjoy cooking. Eating is a bit of a chore, if eating out I just have soup and a dessert. No alcohol of course but it was fun until I started getting recurring urinary infections.

Any infection can spiral into high temperature and sepsis and I've been hospitalised on IV penicillin drips several times. Last time the doctor said it was touch and go, so I have to be careful around sneezers and wheezers. Adapting to Enc is a struggle but I still enjoy life and having a low stimulus threshold means I can enjoy Nature and simple things like doing chores and looking around. I really appreciate nice people and the occasional opportunity to help others. That's all for now I guess - your GP should refer you to a social worker who can arrange specialist support like speech therapy, counselling, physio etc.

Tears and laughter, maybe a support dog ..... Best Wishes, G2

[sleepless68]

Hi,I had the same October 2020. What I would say that most medics do not have detailed understanding.When in hospital I was treat like a lab rat with student docs trailing in to see me.What I would advise is to get advice from Enceph society as suggested below in order to get a team of specialists around your mum like Ot,SALT and social care for your mum and support for yourself.I was repeatedly told that recovery takes 2 years and where she is then will be where she will be for life so getting the right help now is vital. What you are feeling is a natural reaction but you do need support to turn this despair into drive to help your mum now.E is a battle and at mo your mum needs you to go to battle for her.Good luck and take care of yourself too.

[HSE_Survivor]

Hi. I’m so sorry for your Mum’s diagnosis.

It is very hard to find comfort at this difficult time, but you say your mum ‘would be livid if she had any idea’ of her existence. Please take comfort from the fact she does not appear to be aware of what is happening right now. My family watched me have some awful experiences in my first year following the diagnosis of encephalitis. My post encephalitis brain meant I did crazy things like pulling out my intravenous drips in hospital, and leaving taps on so I flooded our kitchen in our house , but I literally can’t remember doing those things .

When encephalitis survivors have severe symptoms , I think the lovely families suffer just as much as the victims. In my case, there were times when it looked as if my mind had departed when my brain was inflamed , and my poor husband was unsure if I would recover.

Unlike your Mum, I have been able to recover enough to tell my husband that I have no recollection of all the horrid events which he was forced to witness . Right now your lovely Mum would definitely not want you not to suffer because of her diagnosis. . The fact she has ‘no memory’ means she will not be as aware of the illness’s horrid symptom as you are. She will want you to be happy, and not to let encephalitis spoil your life, too. ❤️‍🩹