It’s not just the person who has had the stroke who is ‘the survivor’ it’s you as well, the wife, brother, mother, girlfriend, partner, father, friend. We are all survivors.
In July 2010 Eddie and I had a happy and comfortable life and lifestyle. I was an Independent Reviewing Officer in child and family social work and Eddie was Head of Housing Services and Deputy CEO of a local YMCA, working with homeless young people. We had a lovely home, enjoyed foreign holidays and fine dining and were very happy. Then at the end of July came the first blow. After 26 years of working for the YMCA Eddie was made redundant. It was handled really badly and was a very painful process for us both.
Our daughter in Australia asked Eddie to come and do some DIY for her and she paid his fare, so off he went and that gave me a breathing space. On his return he was head-hunted by a housing association working with homeless and vulnerable adults and life returned to some semblance of normality.
In January 2011 we flew to Australia to visit our daughter and four beautiful grandchildren. We stayed for three weeks and my abiding memory is of Eddie running around in the garden chasing the children with the hosepipe and they in turn chasing him.
On February 5th 2011 we boarded our return flight from Perth to Brunei then onwards to Dubai. Two hours east of Dubai Eddie woke from a snooze and asked me if his face looked funny. I told him it didn’t. Twenty minutes later he went to the loo and as he walked back I saw him staggering from side to side. I knew that he couldn’t have consumed a bit too much alcohol as it was a ‘dry’ flight. He then sat down and said “I’ve got pins and needles all over”. I knew immediately that something very serious was happening so went to the Purser and said “My husband is ill and I think he is having a stroke or a heart attack. He replied “what would you like me to do?”. My instinct was to scream at him “how the h*** do I know?” but I didn’t. He said he would inform the Captain and Eddie then began to ‘fit’ down his left side and after about ten minutes I again approached the Purser who replied as he had before. He then said he would ask the Captain to request a wheelchair and a doctor be on hand when we reached Dubai.
They paged for a doctor on board and one came and said that Eddie was having a stroke.
When we reached Dubai they firstly offloaded all the other passengers and then made Eddie walk to the wheelchair. When we reached the concourse there was no doctor. They left us there and said someone would come. By this time Eddie’s situation was deteriorating
Ten minutes later two men arrived on an ambulance buggy. They questioned me, looked at Eddie and said we should go to the medical centre. They pushed Eddie in the wheelchair and sat me on the ‘buggy’. As Eddie and I passed each other we said “I love you”. They were the last words I was to hear from Eddie for five months.
I stood in the medical centre and listened to the horrendous noises coming from Eddie, who was now semi-conscious. I have never felt so alone and scared in all my life. I looked at my mobile not knowing what to do. I remember sending a text to my contact list but it was only last year that someone told me what I texted “Eddie dying in Dubai, please pray”
Eddie was admitted to ICU in a local hospital and after scans and assessments the Consultant sat opposite me and said “He has had a Pontine Infarction(brain stem stroke)”. Having been a nurse prior to having the children I knew exactly what that meant. I replied “That’s not good is it?”. He said “No, he has 48 hours to live barring a miracle”. My reply was “Well we believe in miracles.”
Eddie was sedated and placed in an induced coma. Three of our children flew into Dubai and we planned for a cremation in a temple. Our son agreed that he would carry his Father’s ashes home and we waited. I faced the loss of the man I loved.
On the fourth day they reduced the meds but Eddie’s did not respond. Little did we know that he was aware but was ‘locked in’ and when he finally woke it was to find that the only things he could move were his eyelids.
On the ninth day (February 15th) Eddie was flown home by medi-jet cared for by a Doctor and a nurse. He wasn’t expected to survive the journey so we boarded a plane back to the UK not knowing whether we would see him alive again.
For the entire time we were in Dubai I felt like I was in some awful nightmare and that soon I would wake to the Captain saying “Cabin crew please prepare for descent into Heathrow”. Our accommodation was near the airport and I watched the planes taking off longing to be returning to the UK. The travel insurance didn’t pay out initially and I had to pay £1500 a day for Eddie’s ICU care. The children didn’t let me know until we got home that, during that time, they were trying to raise the money from family and friends to pay for Eddie’s return home. The cost was £85,000.
On the first day back the Consultant spoke to me and my middle daughter, and asked about DNR (do not resuscitate). He explained the consequences if Eddie had another stroke or heart attack. I said “this is man who walked up mountains and he wouldn’t want to live like this for the rest of his life”. The Consultant’s reply was “well he won’t walk up mountains again”. I have to be honest and say in those early days we as a family also discussed the possibility of assisting Eddie to die.
For the next five months my daily routine was waking at 4am to the slow realisation of the ongoing nightmare. I was visiting Eddie afternoon and evening, trying to make some sense of what life might be like when he finally came home and trying to make plans as to how he would get into our small house and how that might be.
I had been planning to retire in July 2012 but it became very clear that I would need to continue working so that we had a decent income and could manage the finances so that we could do all the alterations to the house necessary for Eddie to be allowed home. As a family we agreed that what we wanted for Eddie was that he be as independent as possible.
When they fitted a speaking valve to his tracheostomy for the first time he inclined his head towards me and in a stilted voice, with one breath per word he said
“ I …. Love…… you”
Eddie is truly an amazing man and his stubbornness and stoicism stood him in good stead! By late September 2011, when he finally came home, he could move, speak and feed himself. In July 2012 he carried the Olympic torch. I pushed him in his wheelchair for 400 yards and then he stood and walked 25 steps -our daughter in Australia was watching on the BBC live feed. In March 2011 when she left to return to Australia Eddie had pneumonia and the noro virus and he was not expected to survive. In 2013, despite us being told he would “never walk up mountains again”, Eddie completed the final 500 metres of Mam Tor, a walk that usually takes 20 minutes there and back, took Eddie three hours and a team around him with a chair and medical equipment. The muscles of his back and ‘bum’ had wasted after six months of lying in bed, so he was in constant pain as he walked – but he made it!
For a long time I lost the man I knew and loved. He didn’t look the same, sound the same, and when he was in hospital (and paralysed) he didn’t even smell the same. Eddie had been a selfless, humble gracious man. He became obsessive, self-centred and self-absorbed, so used to having his every need met in hospital that when he came home he expected me, working full-time, to fulfil the role that a team of nurses had while he was in hospital. The local media had carried his story from the time we were in Dubai and suddenly he enjoyed being a bit of a celebrity.
These days Eddie whizzes around in his powered wheelchair, is local coordinator for Different Strokes, has respite at the Calvert Trust where he can be assisted to do lots of the pursuits he did before this all began and a great deal of ‘who he was before’ is recognisable again.
He will never run in the garden and chase his grandchildren with the hosepipe but in January this year, in Australia, he took his walker outside and drenched every one of them with the hosepipe and they in turn drenched him with buckets and bowls and anything they could lay their hands on. Absolutely I cried, but not with grief, with joy, that we have so very, very much. We are very blessed. We still grieve for what we have lost but celebrate what we have.
In December we will have been married for 50 years, yet more that we can celebrate and give thanks for.
Honestly, life is not the same. This is not the life I expected or dreamed of, there are high days and low days and still the occasional day when I just want to run away from the whole situation. However, know that you are not alone there are organisations like Different Strokes who can offer you help and support and, as Eddie is always keen to point out, lease be encouraged that……
THERE IS LIFE AFTER STROKE.