ENCEPHALITIS CASES

Encephalitis Cases

Vera

My Mum (Vera) contacted Herpes Simplex Encephalitis at the beginning of September 2007, at time she was 71 years old.

We had just came back from a family holiday in France and Mum had a really nice time and was feeling very well. However, after a few days she began to complain of nausea and depression, although she never suffers from depression and could not give any reason for this strange feeling. Over the next week she got worse, lost her appetite and complained of a strange feeling in her head. Dad called the doctor who admitted Mum into hospital after her blood pressure was reading low (she normally had high blood pressure). Mum was in hospital for 1 day, after which time the doctor discharged her and asked that she make an appointment in the outpatients department as he thought her problems were related to a hardening of the arteries in the back of her neck. I went to see the on the evening she was discharged and was distressed to see that she was clearly still unwell. She complained of this strange intermittent feeling which started in her head and travelled down her body and she thought her face was beginning to twitch (although I could not see any sign of this). I went straight to the doctors surgery to try and speak with the doctor but the surgery was really busy and they asked me to call the following morning. In hindsight, I wished I had either insisted on talking to the doctor, or sent Mum straight back to A&E, but I walked out of the surgery and did not see Mum until the next morning, which I will regret doing for the rest of my life.

The next morning, initially Mum seemed a lot better, she said she felt improved and that the symptoms had gone, but she was very quiet and it was almost impossible to get a conversation from her, I put it down to her being tired and listless. At 7.00p.m that evening Dad called me to say that Mum had gone delirious. I took her straight to A&E and they informed me that it was likely to be because of a water infection that she had. She was clearly confused and having illusions, but the doctors told me that she had a very high temperature and this was a common reaction. We left her overnight and when we went back to see her the following day, her confusion has progressed, she was transferred to another ward on the afternoon and by the evening was confused even more. I felt sure that the hospital staff thought that they were treating an old lady with dementia and I had to repeat myself time and again to inform them that she was a very fit lady prior to her admission. Over the next few days her condition worsened and although tests were being carried out, she received no treatment for encephalitis. By the Monday she was so bad, she was trying to eat the bedclothes, we really did not know what to do. Finally the consultant informed us that she may have encephalitis and they would start to treat her for this. On the Tuesday morning, the family were called to the hospital, apparently Mum had suffered a fit on the Monday evening, and they found her ‘blue’ early Tuesday morning and the crash team were called. She started fitting and they could not stop the convulsions. Mum was transferred to the intensive care unit where she remained in a coma for 5 days. We prayed that when she woke up she would be back to normal, but regrettably the confusion remained. She stayed in hospital for 13 weeks, and we were by her bedside at every opportunity teaching her how to chew food, swallow, identify objects and even teaching her how to use the toilet. She constantly used objects for the wrong use and put herself in danger a few times. Slowly she started to remember who we were and finally we felt her love grown for us once more.

We received no assistance at all from the hospital of where Mum should go from there upon her discharge but it was very clear that she could not return home. We found a nursing home close by and the surroundings and her room looked really nice. Mum was there for about 4 months and we saw little improvement. I finally got an appointment with a neurologist who suggested that Mum stay with them for a while for assessment. Mum stayed with them for 10 weeks and they suggested a different nursing home for her. Her new home is not as nicely furnished as the previous one, but the nursing care is excellent. Unfortunately the only facility for someone of Mums age is that for a person suffering from dementia. This means that the people living alongside her communicate on a far lower level than she is capable of. Apart for a couple of seizures, Mum has improved dramatically, she has a great sense of humour and her bad days appear to be less and less. There is still no way she can return home, although she can tell you her address, she does not recognise her home but she will tell you that she would love to live there. It is very had to leave her at the home as she does not understand why she is there, even though we tell her every time. Shamefully, it is easy to tell her that we will be back in a couple of hours knowing that she will forget that we have even been to see her within half an hour and she believes that Dad lives there with her. At times when her mind is clear, you would hardly think anything was wrong with her and she told me the other day that sometimes she wakes up and does not know where she is of how she got there. Dad still believes that she will come home again but there is no way he could cope as she suffers from sleep disorder as well having permanent damage to her temporal lobe. I really wish I could do more to help Mum but I am at a loss to know what more I can do other than visit her as often as possible.

This illness has really devastated our family and Dad has been totally lost without living with Mum. Would it have been better that she had not survived? For me, I am pleased that she is still with us and I can tell her how much I love her and hear her tell me the same. But for Mum, I am in two minds, if it were me that had been infected, I would most certainly have wished not to survive.

Vera's Children
United Kingdom

Posted: February 06, 2009

[ADULTS]	[CHILDREN]	[HELP]	[SUBMIT STORY]	[EMAIL]	[HOME]