There are two answers to those questions: debilitating life events that blindsided me and Love.
After my divorce I tried many ways of re-inventing myself such that I could work from home and continue to be a ‘present’ Mother for my young teenage son. In the end none of these came to any meaningful fruition. I was fortunate enough to have some funds from my divorce settlement to buy me some time.
Then, after a bout of glandular fever, I developed Chronic Fatigue Syndrome in the days when NOBODY except a lateral thinking endocrinologist who, in despair, I eventually sought privately, was able to diagnose it. The NHS called it ‘stress’...yes that lovely word that people like to bandy about as the source of ALL ills. As a result, my battle with this insidiously debilitating condition was not documented in my NHS notes so I was not able to apply for any disability or sickness payments over the years.
Whilst I still had some funds to live on this did not perturb me too much. Eventually, I realised that if I stayed in the flat which I owned without properly remunerated full time work, I would not be able to continue paying my mortgage.
So I sold up and moved within the Borough to a rented flat that was still convenient for my Son’s school and close to his Father in Richmond, since my son had chosen to share his time equally with us both.
I made a new home and tried again to re-invent myself in such a way that I could still be a present parent for an only child from a’ broken home’. I also had to manage my own time as pacing myself was paramount to my wellness. Two days of feeling well and getting on with things would invariably be followed by a day or two of not being able to achieve anything much at all.
As I was now renting, I still had the proceeds of the sale of my flat to live on...thinking all the time that work would eventually materialise. For two years I worked part time pro bono for a charitable environmental Trust in the hope that they would in due course find a permanent role for me. Eventually I did some paid consultancy work for them for a short time.
My Father became very ill and I spent a lot of time managing his care in the NHS and finally having to fire fight during his final days as his MacMillan terminal care package fell apart when he left hospital. Just before I moved and before my Father became ill I had entered into a meaningful relationship with someone which was important to me after all the difficulties of a failing relationship ending in divorce.
My Father died and four days after his funeral my partner of almost one year decided to call it a day. Suffice to say that some six months later, having also had to take over all of my Mother’s affairs, I suffered a breakdown.
Again, this was never documented in my NHS notes as I dealt with this period in my life mostly on my own. What could they possibly do to help me anyway?
So, I spent a lot of time with my Mother. Work was not something to focus on at this time. She soon after developed breast cancer, had a mastectomy and treatment. A year later she had a hip replacement.
All the above is just a thumbnail of what I went through whilst suffering from insomnia, continuing CFS, profound grief, the menopause and now financial insecurity. That covers the debilitating life events that blindsided me and contributed to me running out of money.
The second reply to my questions at the beginning of this piece was LOVE. It was Love for my Mother and my Father’s memory that slowly but surely took over my life.
With my Father no longer in the picture after a 50 year marriage to my Mother there were many responsibilities which I had to take over. And gradually, those responsibilities became ever greater, encompassing everything from every aspect of her health and wellbeing to dealing with her recalcitrant landlord.
Concerned friends say to me “but you chose this...you have chosen to dedicate your life to your Mother...you need to let someone else take over and get on with your own life...” WRONG! I did NOT choose to become a Carer..........I turned into a Carer.
Stuck between a rock a hard place, now in my mid 50’s, still having to pace myself because of my energy levels and unable to find a meaningful part time job that I can fit around my Mother and where the pay is sufficient to warrant stepping outside the front door, I came to realise last year that my Mother IS my job.
For this I earn £55 a week, which my Mother gives me in cash and makes her feel she is helping me in some way. I chose not to apply for a Carer’s Allowance of £58 from the State as exactly the same amount is then deducted from the Pension Credit of the person you are caring for. Should you be fortunate enough to find employment, the benefit system then does not allow you to earn more than £100 a week!
I knew at the end of 2012 that my funds had now dwindled to a precarious level for someone with little hope of finding employment in the wider world as she became older and increasingly consumed by her Mother’s care.
I was directed to Richmond Aid. It seemed impossible to get an appointment with them. I got a call one day from a very hard and unpleasant sounding woman who wanted me to answer a host of intrusive questions before she would consider allowing me to have an appointment with one of their advisers.
Eventually I spoke to a lovely woman there who advised me that in order to get any State assistance I would have to allow my funds to dwindle to £16,000! But she spoke to me in a way that showed compassion and an understanding that the lot of Carers is seriously misunderstood and unsupported by Government.
I could not move as any move is an expensive business and to cut my rent significantly would mean moving further out of the Borough. This I simply cannot do as my Mother lives in Central London. And NO, I cannot move in with her. I am 54, not 25 living out of a rucksack. Where would I put my possessions? How would I maintain any independence let alone my sanity by living full time with my Mother?
So, reluctantly and sheepishly I embarked on the process of applying for Housing Benefit. I felt like a child going through an exam or having to justify my behaviour and my existence to a teacher. I was fearful of the whole process.
Having filled in the plethora of forms and gathered all the necessary documents I went along to Richmond Council, took my number from the ticket machine and waited. What a strange, faceless and dehumanised environment it is.
I totally appreciate that the system has to be tough and thorough under the current climate of economic austerity and Benefit fraud, but do the front desk officials really have to be automatons? When I was called up, as I approached the desk I held out my hand to greet the official, smiled and introduced myself. The gentleman’s facial expression remained completely blank but he nearly fell off his chair!
After having to supply further documentation and another visit to faceless grey people who seem to work under the misconception that every single person claiming benefit is some sort of scrounger and that if you are articulate and well spoken and are claiming assistance there must be something very wrong with you, I was granted Housing Benefit.
I can’t tell you how grateful I was for this, especially since they had seen fit to pay the greater percentage of my rent, leaving me with a shortfall on my rent of £141 per month. I felt a huge burden lift from me, even though I still had all my other expenses to contend with, like ridiculous energy bills.
This they did for three months. Just before Christmas, my remittance advice showed a significantly lower figure being transferred to my bank account. I phoned the appropriate department straight away to inform them of their mistake only to find myself speaking to a terse, unfriendly man who sought to explain the figures in terms of their rules and regulations and percentages as if he were entering data into a calculator instead of speaking to an anxious woman on the end of the line.
He then informed me that I had been on ‘emergency Housing Benefit’. This was the first I had heard of this. NO ONE explained this to me at the time of applying. None of the letters alluded to this. When I dared to suggest that this was very misleading for people who were running out of money to live on he said this was done under the assumption that working people who had lost their jobs needed some funds to tide them over until they were able to find work again to pay for their rent and the grace period they gave for this was three months! Well, that is a ridiculous time frame to allow in the current climate especially if they do not inform the applicant that this is what they are doing!
I went on to say that in my case I was NOT working as my job was looking after my Mother for which I was earning all of £55 a week and that that was a situation unlikely to change! He said he would speak to a senior person and call me right back. He never did call me back and I was too afraid, yes afraid, to call back and have another series of figures and percentages that I could not comprehend thrown at me. I had also asked him to confirm what my Council Tax Benefit ACTUALLY was since neither I nor someone else I had spoken to independently could work it out from the Council’s correspondence.
At this time I had been directed to Grace Debt Advice for help in budgeting with what was now considerably less than £16,000. Gary Holland and his colleague Ron Hinsley were immensely helpful, kind and understanding. All our calculations were based on the figure of Housing Benefit that I had initially been awarded.
I should appeal and yet the process fills me with dread and since I have two bedrooms the Council is likely to suggest that I move to a smaller apartment. As I said before, I cannot move to a much lower cost base and continue to be my Mother’s Carer.
I cannot and will not find her a Social Services Carer as I know that much of what I do and achieve for my Mother is not within their remit. My Mother is of Spanish origin. She is 87 years old. She has early Alzheimers. She is used to ME. No one else knows her like I do. No one else will ask the same pertinent questions that I do when at medical appointments which take place every single week. No one else will get her a bed, as I did once, in the hospital when everyone else in Admissions has been sent home. No one else will push the envelope as I do to ensure the best possible care for her in the NHS or the outcomes I achieve with her landlord, the pollarding of the trees by her local Council so she has more light in her flat... the list goes on.
I am very appreciative of the help I do get at the moment. But paying half of my rent has meant that I am drawing up a large debt with my Brother as he tides me over with certain expenses. It is too little too late.
The Housing Benefit Conundrum...why? Because it doesn't make sense, because it is not discerning in the way it helps individuals. I suspect that there are whole swathes of the population in my age range who find themselves in similar circumstances. I do not have a partner to support me financially and emotionally as I dedicate my life to looking after the best Mother a daughter could hope for.
Having never relied on the State, having never asked for unemployment benefit, sickness benefit, disability allowance, having always looked after those around me and now taking a massive strain off the NHS in caring for my Mother, I feel undervalued, dispossessed and fearful for my future financial security.
So, did I make bad choices in my life? No, life happened and Love prevailed.