A Different Life...by Anne
Anne is a long standing member of one of our support groups for family members and carers of people with an ABI. In this interview with Catherine O'Hare she shares what life was like before her husband had a stroke and the changes to their lives that have occurred since.
Anne, what was life like before George had the stroke?
We were a normal family with our ups and down. George worked in a civil engineering company and was earning a good wage. We have two sons both in their 20's. We had a normal social life and were able to go on holidays and do things that other families are able to do. Life was good. Things were going so well that we had decided to take out a mortgage on the house. George was manager and trainer of a local boys soccer team and we were enjoying life very much.
Tell me what happened when George became ill.
In April 2007 he had been to work as normal. He came home from work and then went to soccer training. At around 9 pm he said he was feeling tired and went to bed. After a little while I heard him coughing and ran up the stairs. George wasn't able to talk to me and he was crying. I knew that something had happened so I called the ambulance. He was brought to our General Hospital and there they told me that he had a very serious stroke and he was very ill. At this point, I was frightened as we didn't know if he was going to make it.
Eventually, some tests were done and we found out that one of the main veins in his neck was blocked. He was sent to a hospital in Dublin and he had stents put in. Unfortunately he had another stroke three days after that. It was a very frightening time. He stayed in the General Hospital until August 2007 and then he was sent to the National Rehabilitation Hospital (NRH) in Dun Laoghaire where he stayed for 13 weeks.
In the NRH, George was very determined to get as well as he could and he worked very hard. It was a difficult time for us as a family because we spent a lot of time on the road visiting the hospital and going to meetings. He made slow but steady progress and by the time he was ready to come home, his speech had started to come back and his left side, which was totally paralysed, was coming back slowly. He had learned to walk by himself with the aid of a stick. His short term memory was gone totally and that had not improved at all. George came home in October and it was so lovely to have him home again.
In December 2007 he began to get worse. He began to have seizures and was readmitted to hospital. Since then he has been in and out of hospital - he is having small strokes constantly.
Tell me what life is like now.
Life has been turned upside down for us all. Really, life consists of going either to hospital or to therapies. We had no financial concerns before George became ill. We are now living on social welfare and that is a struggle. We had to spend money getting the house adapted to suits his needs but we got a reasonable grant from the County Council to help with that. We are paying interest only on our mortgage until June 2010 and after that we don't know what will happen. My greatest fear is that we could end up with no home and we have put so much work and money in to making it a home.
George needs 24 hour care and he likes me to be around. Before George got sick I could come and go when and where I wanted and now everything has to be planned well in advance. There is no spontaneity when you are caring for someone with a long term illness.
In the initial stages of the illness people rallied around but over time people's lives move on. I have lost two very good friends since George got sick and I will say that that makes me very sad. On the other hand I have also made some very good friends since George got sick and these people have been a great source of friendship and support during the good times as well as the bad times.
There have been times when the family has been under terrible strain but in general we work well together. The boys have different gifts and talents in relation to their Dad and I suppose one of the things I had to learn was to work on the boys' strengths rather than on their weakness. It's a matter of asking them to help in whatever way they are most comfortable doing. A girlfriend of one of the boys has also been a great source of strength and support.
I have lost a very good friend in George. Decisions that were made previously by both of us are now made by me. I also try to protect George from worrying about things. It can be a very lonely place to be when you feel that all decision making falls to you.
Life continues though. One of my sons is in college and the other is working. We all try to continue as normal and to have a happy home and we try not to focus only on George's illness but on other things. We are lucky that George is very placid and that he is generally happy enough in himself.
What do you think would have made life easier for you?
I think that we would have found things a little less difficult had we got more information at the beginning stage of his illness. I know the Doctors find it difficult to predict what will happen but we got no information at all even as to what the consequences of the Stroke could be.
I think also that I was under the impression that the NRH was the answer to all our problems. I thought that George would come back to us the way he was before the stroke but this did not happen.
I think that my own expectations of myself have made things difficult for me but I am getting better at taking care of myself. I thought for a long time that I was Superwoman. I felt that because I am George's wife I had to look after him. I had to do personal care for George and it was hard for him as well as for me. You never think that you are going to have to do things like that - there is a real role reversal.
I have found the support group run by Headway to be a great help. I have made great friends in the group and it is a great feeling to be able to talk about what is happening without fear of judgement and to people who understand what it is like.
George now goes to the Irish Wheelchair Association in Carlow once a week which he loves. He also has a personal assistant for 6 hours a week which is a great support and he also goes for respite which he enjoys.
I have found the state agencies have been as helpful and supportive as they can be and anything we have needed we have got in relation to grants for modifications to the house.
My life has certainly changed but still I have managed to do 2 courses and I am doing a carers course which I find very helpful. In the beginning I would have said so often: Why me? Why our family? I felt as if our life was over but over time, I see that life is not over but that it has changed and I suppose we have all adjusted as a family to the changes.
The most important message I have is that there is life after brain Injury. It is a different life but a life worth living.