MUM AND I
My mother always wanted to die in her bed and at home.
This is what she did for her mother in 1962. She made me promise that I would do the same for her, and I keep my promises.
Due to her illness, she had to come to London in April 2012. My home became her home. At first she had a small bedroom upstairs but, when her disability became aggravated, she settled in the sitting room.
Over the last two years I have been caught up in something that I never expected to have to do. For two years now, I have been my mother’s carer. Systems were meant to be in place but no one was able to provide the support which she required. No one else was there to help.
Of course I expected my mother to grow old – but I never expected that an innocent woman in her condition would have to experience as much injustice as she did in her final years. Those two years should have been as comfortable as possible for her. They could have been a time for reconnection and I could have cared for her alongside the professionals whom I was assured would be available to support her in her last two years. But this has not been the case. Instead, I have had to fight for up to eighteen hours every day to protect her basic human rights. I have had to open legal cases on behalf of my mother, against inept care agencies and corrupt local authorities. I have had to make police complaints about the racist abuse that we have suffered on the part of local officials and their legal representatives. Ultimately, I have had to involve the European Commission in an investigation of the care provided to the elderly by Ealing Council. All of this, on top of caring for my elderly, disabled mother.
My mother was Italian. She was born in Milan and was a Member of the European Union, allegedly a safe place in which the many Treaties and Acts of Parliament should safeguard the best interests of European Citizens. We live in the London Borough of Ealing, UK, EU. Ealing Social Services were obliged by law to provide my elderly mother with certain services that would have enabled her to live with dignity and respect. Unfortunately Ealing Council’s principal consistent aim has to save money by providing the bare minimum of services possible, even when that lack of provision has constituted a breech of European Law. For many months, due to personal illness, I couldn’t even fetch a cup of tea for myself, yet was expected to look after my mum. The list of problems with the services we were offered is too long to write here, but it is safe to say that we were all heavily and horribly burdened by Ealing Council.
Throughout these two very challenging years I received very little support from the rest of my family.
As if the lack of services was not enough, some eight months ago, Ealing Council decided that my mother should have been deported back to Italy, where she has no family or friends whatsoever. Just to make sure I felt the full and mighty power of Ealing Council, they unleashed their team of Solicitors and instructed them to take action against my mother and I (a very poor employment of public money which came to nothing as I countered it with my own legal support and a police investigation into the inherent racism and bullying involved on the part of Ealing Council). However – It took me almost six mentally and physically exhausting months and a sum of £3,000 to prove to Ealing Council that, under European Treaty Rights, my mother had every right to stay in the UK.
One might assume that there are procedures and organisations in place to assist those in such predicaments. The reality is that this is not the case.
So called “charities” such as Age Concern and Dementia Concern have proven to be both useless and spineless; unwilling to challenge Ealing Council. They have been busy “bodies” when it comes to the presentation of glossy booklets with large amounts of “proper” and “correct” information – but that information has been of absolutely no use to me or my mother in the real world.
Local Councillors have proved equally useless. Almost everyone to whom I have spoken has not had enough experience with “complicated cases” such as these – but the truth is that they are too career orientated to risk confronting the problems within the council, preferring to ignore the issue because it would rock the boat too much.
MPs – as we all probably know – are all too good at making impossible promises (especially before elections) and are often too useless to achieve anything in the long run. True to form, our local MP, Mr. V. Sharma, has done nothing to assist my mother in any way or form, despite my writing to him numerous times.
Only one MEP has done something for my case – that was Baroness Ludford. Despite her clear intervention, Ealing Council decided to ignore her criticism and advice. None of the other MPs and MEPs that I contacted ever replied.
I have even been ignored by a Parliamentary Ombudsman, responsible for handling complaints made against a MPs. The system is always so keen to protect its “own”. The Local Government Ombudsman proudly states that it “looks at complaints about councils and some other authorities and organisations” but it took them over 16 months to initiate a case and come to any decision. That decision came after a great amount of my correspondence had been ignored, and, while it was in my mother’s favour, it lacked facts and was still biased towards Ealing Council.
As we are in the EU, it stands to reason that we should have sought assistance from supportive elements within that wider political infrastructure – smaller organisations that fall under the umbrella of the EU.
The AIRE Centre is a specialist charity whose mission is to promote awareness of European law rights and assist marginalised individuals and those in vulnerable circumstances in asserting and maintaining those rights. It was as if we had won the lottery as one of their lawyers, Sarah St Vincent, prepared a very comprehensive report on my mother’s Rights. However, that legal report was also completely ignored by Ealing Council in January 2013.
At the time of contacting the Ombudsman and the AIRE Centre I also contacted the Directorate-General Justice of the European Commission. Almost two years later, all that I can say is that their office has done little-to-nothing. Only recently, they had the audacity to say that the case has been solved because Ealing Council sent them a letter of apology (which I can only presume, as no evidence of such a letter has ever been made available to my mother and I). The case has only been solved on the basis that someone has admitted that my mother has been abused and neglected. That hasn’t helped anything. It has all been too little, far too late.
I am a person who fights and does not give up. I fight because I believe that our rights should be protected, and I fight because we are led to believe that Institutions and Governments are there to assist us in a fair and decent way. I can tell you that this is not the case. Throughout this struggle, I have had the opportunity to meet many others in similar conditions to mine; but they have not been able to fight against the system. They have struggled along inside the system, never getting anywhere, always suffering. The system is useless to us, it is corrupt.
It is, in many cases a lottery. As Sarah St Vincent has left the AIRE Centre and a new manager has taken over, the service is no longer available to most users. Similar to a lottery, a person has only one chance in every million, to be heard or considered. The same must be said for almost all of the many other organisations and charities I have encountered along the way. Just because I have not mentioned them here, it doesn’t mean I have not been in touch with them. In most cases they have been pretty useless, a false screen of security assuring us that we have friends inside the system. We do not. The charities and organisations are simply taking us for a ride. They take our money and provide lousy results at best.
Please remember – this is not only about me and my mother – this is YOUR FUTURE.
Yes – I am bitter that the last 26 months of my mother’s life were not more jovial. I have every right to be bitter. So would you, if it was your mother. So would you, if you were the one who was disabled and dying and left to fend for yourself.
She could have had a better time but I could not do everything at once. I could not provide her with the sort of care she wanted and needed whilst also fighting institutional apathy, professional negligence and simple, dumb stupidity.
My mum lived through some wonderful periods but, often, her memories were full of regret and sorrow.
She lost her father when she was 19 and she didn’t get on well with her mother.
She endured the painful bombardment of Milan during the Second World War and often spoke about the rats in the streets and the people’s screams, coming from under collapsed buildings.
Then, from 1950 to 1970 she led a very elegant and prosperous life, which she enjoyed in many different ways.
In 1970 her husband (my father) died and both her daughter (my sister) and I left Italy.
I had little communication with her in the following years, but, despite fighting cancer in 1990, she managed to enjoy much of her life and was full of fond memories of her father and her husband.
In the last two years of her life she had no friends left and not much of a family either: there are two siblings and five grandchildren, and that is all.
At this point, one should say that one’s mum was a vibrant soul, the sort of person who literally lit up the room whenever she came through the door. But this was not the case. Instead, I remember mum as a person with a very strong and determined character – and maybe that was inherited from her Slavic grandmother.
Mum had absolutely no interests whatsoever in the last 15 or so years of her life – apart from buying scratch cards. Conversation and interaction with others was always a problem for her – she preferred her own her monologue.
And so my lasting memories of mum are simple: a hard-working, passionate figure of strength who soldiered on, even when times were tough.
She was very much there for us and she cared for us a great deal when we were little.
Mum, thank you for everything you’ve given us – and for the warmth we shared during your precious time on earth.