As part of the Scotland-wide Carers Wellbeing Campaign, Alan Bigham, Senior Programme Manager with Healthcare Improvement Scotland’s Transformational Redesign Team, reflects on his own role caring for his father.
Something that’s still fresh in my mind from when my mother was still alive, is my dad showing me something from one of the Sunday papers, an article about ‘carers’.
“This is me now for mum,” he told me.
Now, it’s me for him.
Our awareness of what caring is, and what we mean by carers and unpaid carers can vary and changes over time. It can lead to assumptions being made if we are not clear in our language. Even those of us who are in a caring role, to any extent, may not always grasp what the role is.
I live an hour away from my dad and although I visit regularly, a year ago I would not have considered myself a carer because I’m not there all the time. This year has changed that quite significantly.
On the same week my brother’s family returned to Australia, my Dad became very unwell, deteriorating physically and mentally over a number of weeks. The system didn’t ‘kick in’ and I had to become a full time carer. This happened during a period of planned leave for me, but for those four days I got an insight into what a day might look like for an unpaid full-time carer. I managed to arrange care for when I returned to work, but I returned from leave more exhausted than I was when I had finished.
Sadly, Dad’s condition deteriorated and he was hospitalised. It was only then that his needs were assessed and at the discharge process that the right level of care was put in place. Did this now mean I was no longer a carer? No, I am. It has just changed what the extent of my role was – something it took me time to realise.
Making the time for care – and self-care
For those of us working in Healthcare Improvement Scotland and the wider NHS, person centred care is a strategic priority. But what do you do when the person doesn’t want the care? Whether it was social or health-related, if you value the individual and believe in their right to self-determine, where does this leave you when they refuse everything until a crisis situation occurs?
The feelings of failure and guilt are difficult to shift. I’ve learned this is not uncommon. The same feelings also transfer to work, where the impact of a caring role, even remotely as I am now, affects your ability to focus and concentrate, to balance being responsive to the person you care for against what you are employed to do.
Fortunately I’ve found my managers to be extremely understanding and flexible, as are colleagues across Healthcare Improvement Scotland. But – and this takes me back to the point about assumptions, both my own and those of other people – it was only when I described what was happening on a daily and weekly basis that I really articulated what I needed both for the person I care for and my own wellbeing. ‘Protected lunchtimes’ if you will.
Only this week, someone referred to me as a carer. What they reflected back to me was that the time I was setting aside for a lunch break, to prepare and eat lunch, get some exercise and make that vital call to my father wasn’t just a lunch break. It was a break for caring too. No wonder the 30-60 minutes set aside for this wasn’t working. The calls alone are typically 30-60 minutes. My work calendar is now populated with ‘lunch and carer time’ each day.
Golden opportunity to hear – and improve
If you have a caring role you should consider what your needs are. As a good friend has often said to me, “You can’t pour from an empty cup”. We can each know what we do, but much of it is unseen by others, including the mental and emotional toll. The cup needs to be refilled and you and those around you will know best how to do that.
We have an opportunity in Healthcare Improvement Scotland to listen, really listen, to each other and to the people we work with so that changes can be made and people are supported before crisis point. That means some really tough questions about policy and practice, as well as considering what ‘managerial discretion’ really means in policies – what it could limit just as much as what it can and does achieve.
We are in a privileged position to be seeing and understanding the experience of unpaid carers. We have a golden opportunity to consider how we hear those voices now and what that means for what we do, what we produce and how it is implemented and evaluated in the health and social care system.
By listening to others, truly listening, we can identify and challenge our own assumptions that we might not even be aware of. Sometimes it’s just being listened to that can make all the difference.
Alan Bigham is a Senior Programme Manager with Healthcare Improvement Scotland’s Transformational Redesign Team.
If you or someone you know would benefit from support as a carer you can contact Care Information Scotland online or phone 0800 011 3200 to find out about support available.
Phone lines are open Monday to Friday 9.00am to 5.00pm.