Experience 4

My sister had been having very bad headaches for some months accompanied by double vision, the double vision was so bad that she had voluntarily stopped driving because she didn't feel safe to continue. She was told by our GP that she was suffering from sinusitis and prescribed some antibiotics. She had been off of work for a couple of days with headaches.

Out of the blue, I received a call at work asking me to go straight home as my sister was feeling very ill, fortunately I only worked a few minutes drive away and when I arrived home I found that she had had a massive pain in the back of her neck, had been violently sick and had grazes all down her right-hand side.

I immediately took her to our GP and was told that I needed to take her to A&E without any explanation, and without any ambulance being called. Later on, when I found out the reason for her being so ill, I was horrified that I had driven her to the A&E department some 20+ miles away because I was so frightened after the event that she may have had had a further haemorrhage.

My sister was kept in overnight for observation and the following day I was told that she had had a slight bleed in the brain and was being transferred to Southampton General, Neurological Unit.

For carers/relatives of people who are told that this is what has happened, it is terrifying as everyone's first thought is "are they going to survive? What condition will they end in?" Personally, I realise now that I went into deep shock, was bewildered, frightened and didn't know what to ask in the way of questions concerning the treatment she would need, and I found it extremely distressing because I didn't want to bother the nurses who were obviously busy with the patients but at the same time I really needed someone to reassure me.

My sister was like another person to me, she was unaware sometimes if I was there and she drifted in and out of sleep, leaving me wondering if my worst fears were coming true. It was like being with another person you didn't know anymore. There wasn't any support for me and I felt so isolated and alone. I hadn't been told at that stage that there was a sub-arachnoid clinical nurse who I could have talked to, and knowing the nurse now very well, it would have allayed a lot of my fears if I could have just talked to someone who actually knew what had happened and could explain things to me.

As it was, I felt like I was stranded on an island. I'd never ever been to Southampton General before; it is like a small city in itself, and when as a relative you are probably in shock yourself, it seems like being a kid lost in a big city.

I remember feeling like I was running on auto-pilot as my sister was in hospital for three weeks and I drove there every day, a round trip of some 140 miles. Looking back I don't know how I got through those weeks, but you do, because you just want to be there.

Accommodation is available for those coming from a distance bit I wanted the security of my own home.

The people who looked after me the best were two tea-ladies who always made me cups of tea and who, when I was waiting for my sister to come out of theatre, were there for me and used to find out how things had gone. They were like a lifeline and I will never forget them and owe them my gratitude for their compassion.

On a brighter note, I was just so pleased the day I could take my sister home. She had had two operations during her stay and given her refusal to eat hospital food, was considerably thinner than when she was admitted. The first time I could see just how thin she was, I was horrified, but couldn't let her see how I felt. Again, this is where relatives/carers need some support.

It was difficult to gauge how much I should let her do, but eventually I had to work on the theory that her own body would tell her if she was tiring herself out. Unfortunately, the urge to be over-protective is a very strong one and it takes a lot to rein yourself in and stop "nannying". She told me one day that she had been in the garden pruning some bushes. When I got home, it turned out she had actually hacked down a very large bush and I went into panic mode and told her off, not easy as she was 46 at the time and it was like telling a kid off! The only practical thing you can do is to be supportive and go with the mood swings, this has turned their life upside down as well.....

My sister had been released from hospital in December 2001, the best day of my life!

Gradually, she regained her strength and energy – fatigue and exhaustion being a large part of the recovery period – getting her independence back was a big part of her recovery and walking further every day gave her this back. Her driving licence had been revoked automatically, and she cried for a whole day when they took this away as she felt that yet again someone else was controlling her life.

Due to financial pressures, my sister had to return to work just four months after she had come out of hospital, this being on a part-time basis, due to the fatigue. Despite their promises to the contrary, her employers didn't actually cut her any slack or make any allowances for her tiredness and she actually returned to work full-time in the June of 2002.

As a relative/carer it is important that you understand the fears that the patient still has i.e. headaches can cause a major panic, pains in the neck, unexplained pain in the head etc.. All of these can possibly be explained as a natural result of the haemorrhage, but to the person who has suffered the SAH, they are terrifying and this situation needs to be dealt with by a professional because no matter how much you as a carer try to reassure, you're not a professional and you have no-one you can turn to, to ask for advice.

It places a huge burden on the carer, because you never know if you are giving the right reassurance, or if you should be concerned and seeking further professional advice. Fortunately, we had a wonderful SAH nurse who dealt with all the small things that my sister was worried about and this was invaluable because no-one apart from a healthcare professional can answer the questions and concerns.

Two and a half years on, I have returned to SGH with my sister for two check-ups, which thankfully, were clear. The upside of a major traumatic event happening to you or those close to you, seems to be that the trivial things really don't matter very much any more. What really matters is people. We all get days when we get the grumps, but after something like this you learn to put things into perspective.

My sister still at the back of her mind worries that it might happen again, despite all the reassurances, but this is something that both patients and carers alike have to learn to live with and accept.

Just remember, you have that person back, warts and all! It does get better and you become a stronger person. Take the good and the bad and stick with it.