Experience 1

My husband had a Subarachnoid Haemorrhage in September 2000 at the age of 52 when holiday in Kenya celebrating our 30th anniversary.

I first realised that something was wrong when he stopped talking in mid sentence and lost consciousness and then proceeded to have a number of seizures. He was taken to hospital where a Subarachnoid Haemorrhage was diagnosed. While this was happening my immediate thoughts were to get him back to England as soon as possible and that I had to be strong as I was the only one there for him and for my family at home.

He received no intervention at this point, as there was no Neurologist in Mombassa subsequently ten days later a further bleed and stroke occurred. He was then transferred to Nairobi where a Neuro Surgeon finally saw him. He was admitted to intensive care but due to his deteriorating condition we had to wait for an angiogram.

Ten days later he had the Aneurysm clipped in a ten-hour operation. Two weeks later he was flown back to England and then taken to Southampton Neuro Unit. He was still in a very bad way confused, incontinent and unable to walk. During those days in Nairobi I cannot explain the emotions that I went through even now four years later it's very painful and looking back I think I blocked out how seriously ill my husband was until I arrived back to England. I just took one day at a time and still do.

On admission to Southampton they tried to find the cause of the problem, treating him initially with water infection and then a C.T. Scan and Lumber Puncture (after the lumber puncture he walked aided by a nurse for a short distance but this sign only lasted a few minutes). We were told that he had brain damage to the frontal lobe, would never work again and was to be moved to a Neuro Rehabilitation Unit (Victoria House Southampton).

This was the day that I realised our lives would never be the same again, not only for me but our children and there partners also the grandchildren. After a month in rehab. My husband had made no progress. The Rehab Consultant strongly felt that a shunt to drain excess fluid from around the brain might help.

Another Lumber Puncture was arranged but we were told that the levels were normal and a shunt was not going to be of any benefit. At this time it was suggested I think about long term care. The family brought my Husband home for Xmas Day and we noticed that he walked aided into the house, which he had not done since the previous lumber puncture.

After a family discussion we felt that a shunt was are only option to perhaps giving my husband some quality of life and we also felt that we had nothing to lose by taking this risk. We spoke to our Subarachnoid Specialist Nurse and she put our side to the Neuro Surgeon and a shunt was installed 3 days later despite warnings that this would not improve his situation. When this was happening I remember thinking am I doing the right thing such a roller coaster on emotions? But at the end of the day I did what I thought was best.

Three days later I noticed my husband turn himself over in bed something he had not done since before the hemorrhage. I went home that night not telling anyone thinking it hadn't really happened. The next day he was able to transfer himself from bed to wheelchair. Over the next few weeks he became completely independently mobile, his incontinence resolved and extreme confusion subsided. However this has left him with a personality change memory and confusion problems.

Over the last three years since he has been home, and my family have had to face his problems. Unable to interact socially in an appropriate manner often causing offence to people. Will not keep still, wanders and can easily get lost. Broken and sleepless nights, very short concentration span.

Complete lack of awareness of his condition which leads to him getting frustrated and angry with me and family. Coping with Terry has been the hardest thing to do. It has been an up hill fight every step of the way, the strain of caring and fighting is very wearing. He is not the person that I married and although I still have him I miss the husband and father we've lost. People understand a physical disability that they can seen but something they can't they don't understand.