To mark Carers UK's 60th Anniversary in Scotland, we are using our platform to share the stories of carers across the nation.
This story comes from Alison Cram, who cares for her father who had a serious traumatic brain injury in 2008, followed by a stroke in 2014. He is now also frail due to his age.
It’s amazing how quickly life can change. In the autumn of 2013 I was living in my flat in Aberdeen, preparing to launch my own career consultancy business, an independent working woman making her own way in the world. Then my mother died suddenly in her sleep and in the few seconds it took for her heart to stop beating, life changed forever.
After a serious head injury a few years earlier, my Dad could not live independently and my siblings and I were clear that after all he had been through, putting Dad into a care home was not what he deserved. So, I moved the 18 miles from my city flat back to my childhood home, where my brother and I could take care of him.
At first I aimed to combine care with work, at least on a part-time basis. Surely I could carve out enough time to work with a few career counselling clients each week?
Like many people, however, I had completely underestimated the reality of day-to-day caring. Dad needed help with all aspects of daily life and while I was fortunate to share his care with my brother and paid carers, there were still never enough hours in the day.
With a subsequent stroke and the onset of vascular dementia, Dad grew more and more dependent on us. As night-time disturbances became increasingly common, caring became a 24/7 role that increasingly squeezed out other things. Trying to fit everything in was making me increasingly tired, stressed and grumpy. The day that I found myself standing in the kitchen, swearing and crying with frustration simply because I had spilt a bowl of soup down myself, was the day I recognised that something had to give and if I wasn’t careful it was going to be me.
Running my own business was incompatible with the degree of care Dad required. Unfortunately, I couldn’t see any local jobs that offered the flexibility that I needed, not when Dad’s needs were constant and unpredictable and when I had to step in if our carers went on holiday or called in sick.
Besides, I was already doing more hours than a full-time job. Could I really handle the responsibilities of another job on top of that?
I decided that for the time being I would have to put my career aside, at least temporarily (is it still temporary after eleven years?).
I knew it was a necessary decision to protect my health but somehow I couldn’t help feeling that I had failed. For thirty years I took pride in my independence, my ability to earn my way, to hold my own in a professional career.
Now I’d become trapped in a Victorian novel. Younger, unmarried daughter with no children who returned home to live with her invalid father as his nursemaid and housekeeper, the archetypal middle-aged spinster dependent on the income of her elderly father. Give me a bonnet and a crinoline and I could have slipped into the pages of Jane Eyre or Bleak House.
I no longer fit into a culture that idolises traditional work structures and the material rewards of career success. I’d become invisible and I didn’t like it. I still don’t.
I’m not an employee, a freelancer, self-employed, a volunteer or retired. I take on the same duties and responsibilities as a paid carer (more, if you include all the organisation and administration) but without the contract or the salary. That last bit is crucial, because our society seems to value paid work and paying tax as the only way to contribute to the economic common good.
As unpaid carer I make my contribution in other ways (unpaid carers save the Scottish Government £15.9 billion a year, according to the latest research)* but that doesn’t seem to count and so the Government classes me as (grits teeth) “economically inactive”.
The general public are often little better in their perceptions. I have good support from family, friends and local healthcare teams, but I’ve still been on the receiving end of sarcastic comments and pointed questions from acquaintances, ex-colleagues and people that I thought knew me better.
What’s it like to be retired?
How do you fill your time now you’re not working?
Finding a part-time job sounds like a good idea - you have to get back to the real world sometime, don’t you?
Do these people think caring is a cushy number, that I’m sitting with my feet up planning my next world cruise? As if I wasn’t already doing a full-time job?
Thankfully, those comments bother me less than they used to. Looking after Dad has been one of the most rewarding and challenging things I’ve ever done. I’m proud of being a carer and I will apologise for it to no-one.
But.
It seems a crying shame for my career guidance training and experience to have gone to waste. I enjoyed what I did and I believed I was good at it, but those skills and knowledge have atrophied over the last eleven years and will not easily be revived.
I don’t know what happens after Dad dies and I’m back on the job market. As a woman in her late fifties, who many will regard as being out of work for more than a decade, my job prospects do not seem promising. At £82 a week, living off Carers Allowance has not allowed me to save or pay into a pension scheme and I’ve already dipped into previous savings several times. The longer-term financial impacts of giving up my career are worrying.
How much better for everyone if I could still be utilising my previous skills and experience, still be earning a wage, be financially secure, able to save or pay into a pension, to pay my share of tax and National Insurance?
Perhaps I’m kidding myself. Caring for someone with 24/7 needs, with unpredictable and failing health, will never be easy. Perhaps trying to combine that with paid work would never have been realistic. There are many full-time carers for whom trying to do both is simply too much and I don’t believe we should ever make someone feel guilty about being “just” a full-time carer. That role is more than good enough.
But it would have been nice to give it a try. Our paid carers are wonderful but social care remains a patchy and under-resourced system. Without reliable care facilities or replacement care, of a sufficient standard and availability, it’s hard for full-time carers to get enough consistent time away to commit to the responsibilities and duties of paid work. It’s a situation not helped by the misconception of care as low-skilled work, which places carers at a disadvantage in the recruitment stakes.
We need to rethink how we see unpaid care and unpaid carers. As a society we’ve recognised the benefits in supporting new parents to continue working as they take on the role of bringing up a child, but somehow we don’t see the benefits in doing the same for carers.
At the time of writing this I am still “not working”. I volunteer for Carers UK and Carers Scotland and that’s been really important for me - it’s still anchored in my identity as an unpaid carer but it has allowed me to contribute to something beyond the house. What a difference it makes to work with an organisation that understands the pressures that carers face and values what we can offer.
I love my Dad. Love that I have been able to keep him here at home where he is most comfortable and safe, to give him the care that he deserves. But I can’t pretend there hasn’t been a price to pay in terms of my career, my finances, my health.
As care needs grow and the contribution of unpaid carers grows with them, it’s time society stopped expecting carers to pay that price. Surely that isn’t too much to ask?
* Bennett, Petrillo, Zhang Valuing Carers 2022: Scotland (2024) Centre for Care, University of Birmingham and Carers Scotland.
This story was kindly submitted to us as part of a series to mark Carers UK's 60th Anniversary in Scotland.
You can find the other stories in this series at the links below.