“What being a parent carer has cost me…”
Nothing prepares anyone for the changes in their working life , pressures on family ties, 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 married, my wife while still being primary carer for my father. When both of my parents 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) in order to better understand myself and my children.
Despite the stress l faced at work with supporting adults with challenging behaviours, work has remained my respite.
However, as other health issues began to surface for my daughter, I had to change employers a few times, in order 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 dependant as the people we are looking after out of love.
Work allows you 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 support you when your caring is finished. We carers are responsible adults who have made hard choices in which we put our own well-being second.
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.
Many 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 quite a few years.
It is a constant battle to get services that meet my daughter’s needs, and constant anxiety over the amount and quality of care available. My wife and I are exhausted most of the time, mentally and physically, and 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 s the most rewarding career of all, despite the hardships.
Being a carer has cost me a great deal, but now I am able to support and help others through public speaking, training, my writing and advocacy, whilst being here for my family.
