Just a thank you.

on Sunday Jacqui turned up.  Its always a joy to see her face AND she had bought me two delicious pieces of  jewellery  which I love.

This young woman came into my life sometime in November 2006.  My husband was having radio therapy after being diagnosed with cancer in the spring and after some very severe chemotherapy which hadn’t cleaned out the tumor.  This whole period had left us both drained, in total shock and completely lost like thousands of others who have been through the experience or are now just starting the journey that is hell on earth.   Through one of those throw away remarks I’d been put in touch with an advisor who dealt with benefits.  I really had no idea what it was all about but nothing really mattered very much except my darling husband and me being strong and trying to cope with everything.  The new language that accompanies serious illness is frightening and most of the time you really don’t know what people are talking about.  ‘Well, just question’, I hear you say.  But what questions?  All you hear is cancer and its a rare one and its in his brain.  Where do you start?  You just trust the experts know the language and will do their best.  But for them its routine. For the punters however its like being shoved inside a tumble drier and thrown round and round never really understanding anything that relates to the life they understand. That is their previous life.

So here we are Colin and I clinging to each other after months of treatment.  Grateful that we could still be together.  And in comes Jacqui.

Jacqui was part of the Macmillan Benefit team or something like that.  She was neat quite small with short flicky hair and a real smiley face.  A funky dresser.  I liked her style.  I recognized or felt a breath of fresh air.  But she was carrying a huge brief case  so she was official.

From that initial meeting which was memorable because I understood the questions and she seemed quite satisfied with the answers we slowly became friends.  Everything she said she would do, with no fuss and no bother to us.  I could actually talk to her about what was happening to Colin and my role in this drama.  The word carer was now applied to me and Jacqui helped me understand what that really meant.  All day everyday forever into the unknown future.  Jacqui was always there either on the end of a demented ‘e’ mail from me or a delightful visit from her.

By March 2007 our hospital visits had finished and a new dilemma loomed.  Our business was failing seriously and bankruptcy was facing us.  I was overwhelmed with paperwork, with caring for Colin and a very frightening future.  And here is where Jacqui for all her neat frame, stood very tall and strong  and just calmly held my hand and said ‘You can do it, there is a way through”.

And she was absolutely right we hung in their and by January 2008 we had cleared the debts, sold the business and kept our home.  The part Jacqui played in all this was monumental.  When I was struggling she would come over and we’d go over the problems and find a solution,  She would take on certain difficult areas so we never got clogged up.  All the time being thoughtful, sensitive and kind and every now and then we even found time to laugh.   Jacqui was/is always smiley but never sentimental, always positive but never strident, always thoughtful but never judgmental, always caring but never controlling.

Last year February 23 2012 my beloved Colin died.  He was at home and my son and I had be able to care for him ourselves which was exhausting but incredibly rewarding.  Through all the years between 2008 and his death Jacqui was a very welcome visitor, helping me keep an open mind on life and its vagaries.  I would have lost my way so many, many times without knowing Jacqui was there to gently nudge me onwards.

And now it is Just Me floundering around in my little world.  But Colin left me very upright, full of his love and strength.  My walls are covered in his fabulous artwork and there is much for me to achieve through the inspiration of his work.  So I am lucky.  AND I have come to know and care deeply for Jacqui who has so many qualities and abilities that she shared so generously with Colin and I.  I know we are not the only ones touched by her caring work but I feel very grateful  that I can now count her as a real friend.

Jacqui picked me up and dusted me down so many times I now know what that big brief case really held – her instinct, her heart ,her humour plus a lot of intelligence  used positively.  She is person to cherish and I do.

An inspiring ‘phone call

which makes a change.

It was from a friend of ours I shall call him John.  He has had such a difficult life.  Father died when he was 5yrs. old, mother becomes an alcoholic, younger brother a nice boy but with emotional problems. John from an early age became the carer of the family.   And I’m afraid our wonderful caring society helped him very, very little.

But he survived plus he gradually carved out a career for himself (he was offered a place for a degree in mathematics but just couldn’t afford to accept) and still cared for his difficult mother and brother.  OK move on a few years he marries and he and his wife produce a beautiful son.  By this time he has his own home and a good job and his mother and brother have moved so they are nearby. Then his mother dies and although after all she has put John through he really grieves his loss.  And by what John has told me she did seem to appreciate what a great son he had been and he always found good things to say about her. But she was still drinking hard to the end. That left his now very confused but likable brother. Grossly overweight and inclined to booze, hadn’t worked for years, lost his identity and any sense of self worth.  And now his mother had died, his sense of reality diminishes even further.

There is now a year to 18 months of confusion, false information, infact lies told to John by his brother and others who were insistent he was in good hands and doing OK.  By this time the brother had moved back to the town the boys and mother had gone to after his father died – this was 300 miles from where John lived (and his brother had previously lived with his mother). John and his wife were also expecting a second child by this time. He was still in contact with his brother but there were other people (friends?) with much more influence over his brother and his meagre income.  Eventually John gets a call saying his brother is in hospital after being found in the river trying to commit suicide after drinking a bottle of bleach. From then on it is all downhill John is backwards and forwards trying to find out what is happening to his poor deluded brother.  John offers to take his brother home many times but he won’t  come.  And in the end he dies from the diet of chemicals prescribed by the doctors who care (?) for him.

John was devastated.   And then very angry.   Because all the time John was trying to get answers to questions about his brothers treatment from the doctors/nurses/carers he was fobbed off and made to feel like an interfering nuisance who had no rights to know about what was happening to this person whom he had loved and cared for all his life.  So John sat down and detailed everything that had happened with dates and times.  It was meticulously written, revised and scrutinised.  It was an obsession.  For ironically although life had given John the hardest most unfair start, he is one of kindest, sweetest, fairest man you could ever meet. And this end to his dear brothers life was wrong and very unfair.  And however hard you try to excuse mistakes and lack of communication etc.etc. there were people in authority who knew what was going on, who could have changed his brothers final years who could have CARED and infact were paid to care and use their expertise to improve a life not kill it.

Over the following months we would talk on the ‘phone and he would tell me about what he was trying to do and all I could do was listen and applaud him for his mission.  The document ended up 21 pages long and he sent it to me to read.   Initially when I saw the length I’m ashamed to say my heart dropped but once I started reading this clear, concise passionate account of the events leading to his brother death I wept. It was so cruelly wrong that anyone should be treated as Johns brother was treated and by normal everyday people supposedly doing there job. John had over the months told me all that had happened to his brother but reading it so clearly and concisely really shocked me.  And this had happened (and I fear is still happening) to the defenseless in our society.  Even though the victim in this tragic story had someone who really cared about him, really loved him, those in authority ignored John and what he could offer.

Then on Thursday night John rang.  His document has not only been acknowledged but been taken seriously as an important statement of FACTS.  A certain politician has picked up on it, the police and the other authorities involved are now taking Johns complaints seriously. And believe me John will not go away. Thank goodness for the Johns of this world who don’t just moan and weep but use all that negative energy to try and right a wrong, to really try and make a difference.

I have just read through this account and it does not do justice to this young mans story. Because through all his struggles and believe me they started from the age of 5yrs. he has survived a wholesome, intelligent, CARING, humorous character. John really is worth listening to. His 21 paged document is honed from real pain, real love and real experience and is just packed with lean, hard and very emotionally charged FACTS. And that is frightening and depressing.