It’s Carers Week, and at a time when the work of both paid and unpaid carers is more vital than ever, Christine Sutton, Portfolio Lead for Person Led Care in our Transformational Redesign Unit, shares her experience of caring for her parents.
The theme for this year’s Carers Week is “Making Caring Visible”. It couldn’t be more timely. The current pandemic has brought into sharp focus the needs of unpaid carers. Polls carried for Carers Week identified that an additional 9% of adults in Scotland have become unpaid carers since the outbreak of COVID-19. This is in addition to the 16% who were already providing care and support to friends, neighbours or family members. That’s a total of 1.1 million people. I’ve been one of them, and this is my story.
Daughter and carer
It was our first day of home-working – Wednesday 18 March, if you remember – when I got the call. It was the care agency who looked after my mum. My dad had fallen and was very unsteady on his feet. For the last ten years he has been the main carer for my mum, who was very frail and had dementia. I didn’t wait around. I booked a flight south. That day, I became a full-time carer for both my parents.
“The whole experience has been hugely humbling. I learnt a lot about myself and both my parents and above all about the benefits of being present in each moment. We shared tears and times of laughter.”
My dad was admitted to hospital. It turned out he had pneumonia. A stress filled few days followed. He was tested twice for COVID-19. I felt fortunate that I was able to speak to him on his mobile and visit him once in between the two tests, both of which, thankfully, turned out to be negative. My mum, meanwhile was unaware of the pandemic and had limited understanding about my dad not being at home. This made things easier for me in some respects and it was difficult for my dad to hear, given all the care and support he had given to her over the years.
Fortunately, my dad started to respond to treatment and I was very relieved when I heard he was able to come home. He still needed a lot of support, though. This meant I was now juggling caring full -time for both my parents and negotiating with healthcare services about medication, equipment and advice about ongoing care and treatment. I had decided to cancel the care provision for my mum after my dad’s admission to hospital, concerned to protect my mum’s health as best I could.
I started to get into a routine. However, at the end of March my mum’s health began to get deteriorate. She was eating less and sleeping more. She died at home towards the end of April. Throughout this she remained cheerful and content, a source of comfort to me and my dad.
Humbling experiences and heartfelt kindnesses
The whole experience has been hugely humbling. I learnt a lot about myself and both my parents and above all about the benefits of being present in each moment. We shared tears and times of laughter.
I am very grateful that I was able to be with my mum and dad at this time. I am lucky that I have always had a warm, loving relationship with both my parents. The bond with my mum strengthened in the last weeks of her life. Caring for my dad and hearing more about his experience of caring for my mum gave both of us a deeper appreciation for each other.
I also experienced so much kindness from others. Numerous phone calls, texts and offers of help kept me going. Daily yoga and meditation practice helped to keep me on a half even keel. Knowing that I had the security of a regular salary and the flexibility extended to me by my employer took away one potential source of pressure. So many people – friends from Scotland, my parents’ friends unable to leave their own homes and health and social care staff – expressed the wish that they could do more to support us. This in itself meant so much.
“People do value and gain pleasure, acquire new skills, experiences and knowledge through being unpaid carers. Being an unpaid carer can also take its toll. These two aspects are not mutually exclusive.”
There were still moments when I was at the point between coping and not coping. People do value and gain pleasure, acquire new skills, experiences and knowledge through being unpaid carers. Being an unpaid carer can also take its toll. These two aspects are not mutually exclusive. My dad spoke to me about how much he enjoyed caring for my mum, learnt a lot from doing it and acknowledged that it restricted what he could do and was often exhausting.
The value of carers
I only glimpsed life as an unpaid carer. My dad has now recovered enough to be able to do most things for himself. I don’t know what it is like to care for someone day in day out for an indefinite period, stop doing activities you previously enjoyed, face unemployment or a significant loss of earnings or lose contact with the outside world and become isolated and lonely. These are a just few examples of the many challenges faced by unpaid carers every day.
We all have a part to play in making sure that unpaid carers feel valued and receive the support that they need. Whether that is as colleagues, friends, neighbours or our local communities. I would urge you to reflect on this and think about one way in which you can stand alongside unpaid carers. Those 1.1.million adults, the unpaid carers I mention at the start? You will know some of them. Some of them might not even have told you that they are a carer. If they care for a partner or spouse they may not think of themselves as a carer. Please take the time to talk to them, to show your interest in what they do, offer a listening ear or practical support. You might be able to make all the difference.
You can find out more about Carers Week on their website, https://www.carersweek.org
Christine Sutton is Portfolio Lead for Person Led Care in the Transformational Redesign Unit, part of Healthcare Improvement Scotland.