I had a stark reminder of what lies ahead with this dreadful condition yesterday.  Phone calls from M’s Aunty and my sister in law reminded me that this journey doesn’t get any easier.  Their approach to caring for their husbands sets a standard that I hope to maintain.  I have seen their unconditional love shine through until it wasn’t possible for them to carry on any longer.  The former because of exhaustion and the latter because of personal safety.  Their current situations highlight that there is till a lot to learn about what lies ahead.

I am pretty handy at sorting out entitlement or getting a reasonable deal in any situation.  My record as a trade union representative is sound in both the private and the public sector.  Once on the shop floor I soon learned how to get a decent piecework price and how to keep the Foreman off your back.  I was fortunate to land up on a Section where the Shop Steward knew the ropes and handed them over when he became a Local Councillor.

Later in my career as I had moved from a job to a profession with involvement in the Race Relations Industry, I had to beat a hasty retreat.  The impending death of my first wife meant  hasty rearrangement of my career path.  My emasculated wife said:’don’t take that job you will be bored’.  She knew that my heart lay in the job I withdrew from: promotion in the Race Relations Industry.  However, I manged to squeeze in ‘just a little’ representation in my 25 years work in with a Local Authority: elected to local and regional roles in the trade union movement.

The point I am making here is that I have extensive experience at negotiation and improving the terms and conditions of the workforce.  What is difficult to come to terms with now is that I now have appalling terms and conditions. Yet it gets worse than that: those who are paid to assist me in my caring role play their cards very close to their chest.  Rights and entitlement are apparently not enacted in statute they seem to be randomly distributed by a benefactor: the Local Authority.  I recall writing elsewhere that the lot of the carer could be described as the Endless Hours Contract: a voluntary commitment to a loved one where your employer the Welfare State exploits your commitment to the Marriage Contract.  I will return to the position that C and J find themselves in to elaborate my point.

Both parties are in distress and disarray as they try to make sense of their escape from an Endless Hours Contract. C has handed D over to a Nursing Home as she could cope no longer after 15 years on such appalling terms and conditions.  J had matters taken out of her hands as the Mental Health Act was used to take away J’s liberty.   Yet both now face a situation of extreme distress and uncertainty.  C doesn’t know if she will be able to put food on the table until a Financial Assessment has taken place.  J is unclear if J will be allowed to stay in the Nursing Home where he has been happy for the last 3 years until a Review has been conducted.  Uncertainty prevails and there is no Trade Union to fall back on:   you can’t  call on your Shop Steward to represent you when you are facing: reviews, assessments or the politically correct nonsense of Local Government.

I think there is a job waiting to be done here Unite.