Difficult Times

It is very hard to say which period was the most stressful or difficult as there were so many.  I think looking back now, the period 3-4yrs post illness was a very challenging year for all of us.  It was during this time that Celia's mental abilities dropped quickly and the tasks she could do before hand became more tricky for her, including making a cup of tea or getting dressed.  Thus I would have to help her on many days.  Her ability to care for our daughter was also being an issue and this came to a head when, after a number of incidents, it was recommended that she shouldnt have 1-1 contact with our daughter anymore.  Thus she was at home on her own now, and I suspect this would not have helped her at all and probably led to an increase in her depression.  (she wasnt diagnosed with it, but reading about it is fairly common with the illness).  All this led to her re-admittance to hospital (which I mentioned on the previous blog).  During her time at the hospital she was moved into the care of the psychiatric team for assessment from their point of view.  In addition this was a secure ward (as she had all ready wondered from her original ward - even thou I told them she would), and the staff would able to full assess her in all manner of daily care and routines.  It was more relaxed have a common room with a tv and a kitchen all in situ.

I was asked to attend another meeting with members of the staff to discuss her care and duly turned up.  At this meeting was a whole gaggle of people from Community Care, Social Services, Psychology, Psychiatric as well as Neurology - oh and little me.  Very scary meeting to attend.  It was here that I was informed of Celias Mental decline and how much she had gone down.  I can remember then telling me, they set up a task for her to make a ham sandwich.  Well, she ate the bread, then ham and then put her fingers in the butter and then ate that. Another test that she did was where she had to plot her way round a piece of paper - going from letters to numbers in ascending order - so A to 1, to B, 2, C, 3 and so on.  I know she did this a few years ago as part of her original psychological testing and got ok - upto about letter K, but this time she got on D and then moved to any letter/number at randon.  Not good :(. The overview of all the senior members of staff was to recommend her to go into permanent care. So I was, being ask to place my wife into care (for her own welfare) at the age of 37 on my part and she would have been abt 35.  I said yes - at the end of the day I also had to think about my own welfare/health and that of our daughters.  It was something that I thought I wouldnt have to make - certainly not at our age, and one more for my parents.  That was a difficult day for me, as then I had to go and speak to all members of the family (inc our daughter) to tell them the news.  Zoe would have been about 4 at that time.  I was told they would look for a special unit that deals with brain injury trauma for the younger persons and one as close to where we lived (for visitation :) ).

Ava (again - my 'knight in Shinning Armour') offered to visit the care home to ensure that it was suitable or if I had any concerns about it - wonderful stuff.  Althou I never asked her to visit it, it is the thought that counts and I am sure she would have done so if I had asked.

If anyone is reading this and thinking....'oh shit, thats what encephalitis is like', please remember this is what I saw and experienced with my wife.  I am sure, if my memory serves me right, that at several times Ava said she couldnt remember a case like Celia's.  In terms of the lack of diagnosis and the steep downward, almost dementia like, curve down hill.  Her case was unique, and I am sure that many cases are.

If you have read this and would like to support the Encephalitis Society so they can support others (like Celia and myself), then please click on this link and donate to my fund raising page.  I am running the London Marathon to aid the Society and the worth they do.

Speaking of the said event, it si only 76 days away - 11 weeks.  Training has gone well, hitting a total of 153 miles and a long run this weekend of 17miles.  Just hope it will get a warmer soon, felt the cold today.

All this training is for the Marathon for the charity - so, please sponsor me!

Ta