What being a parent carer has cost me…
It is Carers’ Week in the UK from 6th to 12th June 2022. There are an estimated 9 million unpaid carers in the UK and rising. Together they save £119 billion to the UK Treasury each year. However, this caring role can be extremely difficult and isolating, and many of us get little respite, and certainly no paid annual leave!
This is my story…
Nothing prepares anyone for the changes in their working life, pressures on family ties, and the impact on your own lifestyle and wellbeing when caring for a family member.
I have been caring for one family member or another for the best part of half a century, when my late father had to retire from work on ill health grounds, leaving my late mother to go out to work full time to support the family.
Later, my mother developed vascular dementia, and as the youngest child, and the only one without a family of my own at the time, I became my parents’ main carer.
When my mother went into residential care, I was able to devote a little more time to develop other relationships. I met, and later married, my wife while still being primary carer for my parents. When both died within 3 months of each other, I was finally able to put my energies into my career and my young family.
However, any respite from caring was to be short-lived, as my children began to show signs of having significant special needs and signs of autism. As a devoted family man, I was prepared for the commitment, but I wasn’t prepared for the long-term effect on my life. The lack of money, the health issues and the lack of understanding from family and friends.
Lack of support from friends and family, led to my becoming increasingly socially isolated. Although I was able to continue in employment, with my wife being the main carer, the pressures of being a carer and fighting for support from the local authority, caused my health to deteriorate and I was forced to retire from my job as a civil servant on health grounds, having become incapacitated by chronic fatigue syndrome.
After I was diagnosed as being autistic, I returned to my first love of working in care (having been a former student nurse) to enable me to better understand myself and my children.
Despite the stress l faced at work with supporting adults with challenging behaviours, work remained my respite.
However, as other health issues began to surface for my daughter, I had to change employers a few times, to be closer to home.
Ultimately, this has led to my becoming a self- employed autism speaker, trainer, advocate and writer.
Local authorities and national government continue to take unpaid carers for granted and by withholding the luxury of support in work they add to our depression, isolation and sense of helplessness and, instead of recognising our worth, classify us as being as dependant as the people we are looking after out of love.
Work allows myself and other carers time out from caring at home, and provides income, as well as more self- respect and a chance of a future and an occupational pension to provide financial security when the caring role is finished.
We carers are responsible adults who have made hard choices in which we put our own well-being second.
We feel , however, undervalued by society and even more so by local and national government.
It’s the battle for services that is the problem not the person. I don’t feel that non-carers realise how much stress it puts on the unpaid carer and the effect it can have on their health.
Most unpaid carers, get little help, and many like my wife and I haven’t had a holiday, a day off, a day out or a lie in for a number of years.
For my wife and I, it is a constant battle to get services that meet our daughter’s needs, and the constant anxiety over the amount and quality of care available. During the COVID 19 pandemic, these anxieties and sense of isolation became more severe. Indeed, Carers UK, in their report entitles “Caring Beyond Closed Doors-Six Months On “(Oct 2020) highlighted the significant impact that the coronavirus pandemic had upon unpaid carers. Their survey concluded that a staggering 81% of all unpaid carers have provided more care during the pandemic, and 40% of those receiving care from family members at home had seen the care needs increase for their loved ones.
During the first lockdown, I was encouraged from my last employer to shield to support my clinically vulnerable daughter and later I made the bold, but necessary, step to become self- employed whilst shielding. We are now fortunate to have found some excellent carers at home for our daughter.
However, my wife and I remain exhausted most of the time, both mentally and physically, and, like so many carers, struggle to cope financially.
As a young man, I had no idea of the impact that caring would have in my life, particularly on my ability to have a social life of my own, follow my own interests, have holidays, and be able to look after my health.
However, I take comfort in the knowledge that my wife and I are not alone and that caring for a family member, however stressful, is the most rewarding career of all, despite all of the hardships.
Being a carer has cost me a great deal, but now through being self-employed, I am able to support and help others through public speaking, training, my writing and advocacy, whilst being here for my family.
To my fellow unpaid carers, of which there were approximately 9.1 million of us at the start of the pandemic, I salute you. You are the ultimate unsung heroes of these challenging times.
