time goes so quickly

In the last edition of Neuro News when i gave a shorten version of what happened to myself when in early 96 our life changed i had published some of the story of how i ended my working life? as a volunteer so here is the full article at last



THE STORY OF A CARER, ALLEGEDLY AND WHY DAFFODILS MEAN SO MUCH

The story started in early 1996 when I found my wife struggling on the bathroom floor after being sick from a violent headache, but I think I need to rewind the story a bit to earlier in that day when our life changed forever, when we left the old one behind and found a new one.

We had been to Mold early that morning to visit an antique fair and we had bought a figurine of a boy and girl, a hobby that we both enjoy and still do but without the money to buy too many these days although we still find it if something takes our eye that is not too expensive. We had the use of a relatives car and they were due back from holiday so this was the last weekend and we were going to make the most of it, hence the visit to Mold and we were going to stay out but my wife said she felt unwell, sick. When we arrived home our next door neighbour was having car problems and could I help him bleed his brakes, so my wife went in and I helped with the car, but when I went in a bit later I found my wife lying on the bathroom floor and complaining of a violent headache and being sick and with my help she went to bed and the headache came and went over the next couple of days so I called our own GP who gave her some tablets and said to contact him if it got no better. By the end of the week no better was what it was so we called him again on the Friday and he called an ambulance as we headed for our local hospital.
A funny aside to that day was that the figurine was on display, unwrapped and in pride of place in the hall where it still sits to this day all of course before the bathroom incident.

As you can imagine a bad headache does not have the same priority as other patients so we waited what seemed and was hours with just seeing a nurse who took the history. Eventually we saw a doctor and he found a bed and a lumbar puncture was done as one of the tests and of course they found blood and a transfer to the old Walton Hospital was needed I found this out when I phoned the next morning as I had been sent home around 9.00pm. As it was the weekend the scanner was not staffed, I think, so the scan was done on Monday and the doctor wanted to see me that night when I came to visit. He explained that a bleed in the brain had been the cause and drew a picture of what had happened, a bit like a blackberry bursting and we need to put a clip on the neck. The conversation after we shave the head and fold back the skin all went in a blur as we need to do this tomorrow or it will happen again and she could die.
The next day Tuesday came and my next door neighbour gave me a lift so I could see my wife before the operation. When I saw her waiting in the bed we talked about her own mother, who at the same age 49 had died of a brain haemorrhage so you can imagine how she felt as she says the man in the green wellies came for her.






So what do you do when you have to wait 3-4 hours while the operation that will save your wife’s life is going on? For me the answer was simple you feed the ducks. As we had both worked together and led a very hectic working life in Liverpool’s city centre we now lived by Sefton Park, which is at the bottom of our road, it had become a haven for us and the simple pleasure of walking around the park and feeding the ducks had became a routine to us so I feed the ducks, sat, waited and wondered of how things would turn out. This was the time of PMP pre mobile phones unless you remember the house brick that was a phone. So I went home and phoned the hospital all had gone well and the doctor will see you later to explain. Seeing my wife in a hospital intensive care bed with lots of tubes was for me a scary thing when hospital was a very alien place, we had both led reasonable healthy lives and only visited when someone else was there not your own wife. A couple of weeks was the verdict, words were a bit muddled and phoning her sisters turned into a comedy sketch but that was solved by a piece of paper with all the numbers on her memory was not the same it will get better was an answer but short term memory may be not. However going into the third week and all was not going as well as they thought, she had no appetite and was losing weight a good thing she said so another scan revealed their was some swelling in the brain and a course of steroids was the answer.

By week 4 my own body was going into shutdown, all the not eating right and drinking had caught up with me and I was in bed for around the time that my wife improved . A friend of mine said she got better because I stopped going to see her he thought the coincidence was too much. Anyway I recovered just in time to see my wife recover fully and she was coming home.

The weeks that followed seemed strange to everyone, family and friends helped a lot in the early stages but apart from the shaved it seemed ok. Ok is a word we still use when people ask how my wife is, it is easier than to say depressed, fatigue, lost for words, the constant checking, afraid to leave the house without me and just not right. Things that we have learned to live with over the years and the family see the looking well (Make-up) walking and talking and think that everything is ok and if I am honest I suppose it is we have found a very different rhythm of life that the one we had before. After 12 months she was discharged but remained unable to work ever again.








So why do daffodils mean so much. After 5 weeks of not leaving the house, the shaved head down one side is not the best look on a woman but with gentle coaxing we had a walk down to Sefton Park and sat on a bench surrounded by daffodils in full bloom for what seemed a life time, we both knew that we had been lucky and life as we knew it had changed forever, we had been given that second chance. Why allegedly a carer, I am not sure who looks after who, I myself have some health problems and as we both grow older we have slipped into a rhythm of life that suits us both.

As I write this in spring of 2010, 14 years later when the daffodils are still in bloom but some are fading and dying I remember that time on the park bench, we both do that wonderful day we sat surrounded by daffodils. Life has been different for us both, work was not possible but volunteering for me was. We had gone to a meeting about brain haemorrhage and a possible support group that was held in the Glaxo Centre, known now by the name Neurosupport in Liverpool city centre. Over the coming months we went to meetings at this centre and by now 2 years had passed and when I heard they were looking for volunteers to help staff the patient information desk at the new Walton Centre I signed up “To give something back” a phrase you hear a lot in volunteering and so in September 1998 I went on an induction course and have been there ever since. My role has changed over the years, although I still volunteer, I now represent volunteers at staff meetings, write a newsletter, and write on our own blog and with my long association with The Walton Centre I have also become a hospital governor when it became a Foundation Trust in 2009. One of my other volunteering roles is that am a committee member for The Brain Haemorrhage Support Group a cause very close to my heart. To give my time and to help others in a similar situation, this has given me the greatest reward of all. So when our life changed in 1996 maybe things do happen for a reason who knows. What I do know is that every year we always enjoy the daffodils and remember.