Claire’s Story
My name is Claire Egan and in December last year I lost my husband Graham at the age of 49 to Motor Neurone Disease. He was a very fit man and was a firefighter for 35 years.
‘Our Journey’
It all started for my husband when we had just come back from our annual family ski trip in January 2010 when Graham complained of a bad shoulder. We put it down to a ski injury where he may have fell funny on it (but saying that Graham did not fall over a lot he was the most amazing snow boarder). Anyway off he went in early March on yet another ski trip this time the annual lads trip!!! He came back complaining of a weak arm and he really struggled all week. So off he went to the Doctor who referred him straight up to the Vic where he was referred to see a Neurologist.
His appointment eventually came through and Graham was admitted to Royal Preston Hospital in early May. Graham was struggling at this time to dress and undress himself and also needed help eating as his left arm had deteriorated so much he was unable to use it fully. I asked if I could stay with Graham in hospital 24/7 which I did and I slept at the side of his bed on a recliner chair, in a ward with 3 other gentleman. At night we would pull the curtains round the bed for privacy. Graham and I were relieved that I was able to stay as he really was struggling and it meant I was there for him to assist with whatever needs he had. Ideally a private room would have been a lot better for us however we did understand the bed availability at the time. Graham also was opposite a gentleman who was very disabled with Motor Neurone Disease and he watched this gentleman daily. It was a very difficult time for us and to see this gentleman deeply upset Graham as he knew that he too could end up like that. Graham was admitted on the Tuesday after the May Day Bank Holiday and we were given the devastating news that he had Motor Neurone Disease on the Friday.
We came home in total shock and tried to come to terms with this devastating news. Our lives would never be the same again.
We tried to continue as best we could and told our 11 year old daughter all she needed to know at the time, without going into too much detail. We went to a family wedding in June and also went on our family holiday with friends to Spain in the August. By the time we came back from Spain Graham was deteriorating very quickly. He now needed to use a wheelchair whenever we went out and I was washing, bathing, dressing and undressing and feeding him full time.
The MND nurses at Preston Hospital were amazing and we were in regular contact with them. They allocated a palliative care nurse to Graham, Lynn Redman from Trinity Hospice and she became invaluable.
The next few months are a little blurred to me!!! Graham was admitted again to Preston Hospital where they carried out a few more tests and wanted to try Graham on a ventilator as he was struggling with his breathing. He was admitted to a ward which was a high dependency ward with 4 beds and he was hooked up to a ventilator for a couple of nights. Again I stayed with him at the side of his bed in a recliner chair. By this time Graham was very weak. The situation was not ideal and we were in a ward with 3 other very poorly people. The gentleman across the bay from us was dying, and the other 2 patients had Motor Neurone Disease. The next stage for Graham was to be fitted with a ventilator with a view to taking it home and him going on it at night to help him rest because breathing was becoming exhausting. Unfortunately we were told you had to go to Wythenshaw Hospital in Manchester to be fitted for the ventilator before we could bring it home. There was no facility in Lancashire for Graham to be fitted to the ventilator.
By this time Graham had had enough and he made the decision not to have the ventilator and he wanted to just come home, so we were discharged home and was back in the care of our lovely palliative care nurse Lynn. The staff at Preston Hospital, together with the Motor Neurone team were amazing.
Graham did get worse and he did have a couple of falls at home where I had to call an ambulance for assistance.
By November Graham was very weak. We were going to Trinity Hospice weekly where Graham received reflexology and he got a lot out of this. He also received regular counselling from the Trinity Hospice and his counsellor would come to the house to see Graham.
Graham was very weak one day, so much so that he could not get out of bed and he asked me to call Lynn (our palliative care nurse) She was round within the hour and stayed with us all morning. She wanted Graham to go back into hospital but he was adamant that that was not what he wanted so he eventually agreed to go into the hospice for symptom management. He was in a lot of pain and discomfort.
So off we went to Trinity Hospice in an ambulance. Gray (and myself) were very, very anxious about going into the hospice as we really did not know what to expect. We were greeted at the door by the matron who was so lovely and we were shown to a room, which was to be where Gray would stay for his time in there. We were told by Lynn that usually they like to keep you in for 2 weeks as this is a good time to assess Gray with his needs and medication and hopefully get Gray more settled.
Gray at this stage was really struggling with his breathing and was on oxygen at home and because he was so anxious and worked up his breathing became worse. A male nurse Eric came and sat with Gray and administered oxygen and really calmed Gray down, he was just so lovely and Gray warmed to him immediately.
The hospice allowed me to stay with Graham 24/7 which I did, and this was a great comfort to Gray as he did not like to be left on his own. The staff would wheel a bed in for me in the evenings, so I could sleep at his side.
After a week Gray seemed more settled and wanted to come home so again the hospice were brilliant and said they would keep our bed for us till early the following week just in case Gray did not settle at home. Gray did not settle and on the Tuesday off we went in an ambulance back to the hospice where Gray was more relaxed and settled. The hospice staff were amazing from the volunteers and the kitchen staff to the nurses and the doctors. Everyone got to know us and were just so friendly.
The hospice is not a sad place, but a very happy one, so much so that our daughter Molly who was only 11 was excited every day to come and visit her dad. She would come along after school each day and stay and do her homework with us and sometimes would have her tea with us too. We would also go into the main lounge and watch a bit of TV and all the staff knew Molly very well. Molly would come and stay with us for a full day on a Saturday and Sunday. On a Saturday we would order pizzas and settle in the main lounge and watch X Factor. Our family and friends also came in to be with us and were all made very welcome. The kitchen staff made us a Sunday dinner which just made life, for Molly especially, as normal as possible, just keeping things the same as if we were all back at home.
It was also close to Christmas, so my sister Colette would come into the hospice each day and we would set too and order all my Christmas presents on line, as the hospice had a computer which was just great for us. Also they have a week near to Christmas where shops would come into the hospice. This is for people like myself and Gray who could not get out to do any Christmas shopping. An example is Boots would be there and you could order anything you wanted and they would bring it in for you the following day.
Gray was getting weaker on a daily basis and were told the truth by the Motor Neurone Disease nurses that he probably only had about 6 months to live. It was what Gray needed to know and so again the hospice stepped in and were just amazing. They arranged for us to move into the room next door which had 3 beds in so Molly could come and sleep over at the weekend and for Peter Hilton, a volunteer driver, who was also a friend of Grays to take us out for the days. We were planning on going to Macdonalds and maybe having a drive out along the Prom and see the Christmas lights. This was all sorted and on the Thursday we moved into our new room with a view to a lovely family weekend ahead of us. Gray did not make it and sadly passed away that night, with me by his side.
Molly and myself have some lovely memories of our time with Gray in the hospice and these memories will stay with us forever.
OUR EXPERIENCE OF THE HOSPICE WAS AMAZING.