Pauline cares for her husband John, who had a stroke in 2021. She writes about the impact of John's stroke on their lives and the difficult decision to give up work to care for him and support his recovery.
On 11 September 2021 at 10am we were a relatively normal couple. I worked full-time as a lecturer in nursing at a university, and my husband, John, had returned to university to study part-time for a second career. At 10.15am our lives were devastated when he had a sudden, catastrophic stroke at the age of 54.
The next 48 hours remain a blur in my mind. His life hung in the balance for those 48 hours before stabilising. We then began the long and enduring process of recovery and rehabilitation.
As we became aware of the life-changing consequences of John’s stroke, we knew that life would be very different from now on. After 15 weeks in hospital, he was discharged home on Christmas Eve. He was unable to walk and was paralysed on his left side, so he needed me to support him in most of his daily activities.
During this time, I was able to have some paid leave from work, and as his recovery continued, this progressed to an unpaid career break. Rehabilitation following a stroke is a bit like a rollercoaster ride – there were many achievements we had thought would not be possible, but there were also complications that we had to learn to live with. I was needed at home during this time to provide care for John and to help with his rehabilitation every day. Due to the intensity of caring, it would have been impossible to try to combine work with my caring role.
After 2 years of recovery, my career break was ending, and I needed to return to work if I was to retain my registration as a nurse. I loved my job and my career in nursing – it was who I was and formed a large part of my identity as a person. But I knew, deep down, that there was no way that I could return to my career full-time. To do that I would have had to employ a carer to be with John. This would have taken all my earnings, not to mention the additional pressure I would have felt to work when at home to stay on top of things.
After discussing these concerns with John, I made the decision to leave my job, so that I could continue to support his recovery and we could work on rebuilding our life together.
Our lives have changed forever. We have had to adapt to living with disability, uncertainty and more than a little anxiety. Losing both our incomes because of John’s stroke has meant that we must manage on Carer’s Allowance and other benefits. Our future pensions have also been affected, so now, in early middle age, we are more emotionally, physically and financially vulnerable than we have ever been.
While leaving work was a choice I made, it also felt like it was the only choice I had or wanted, so I could support John’s recovery to have the best quality of life that was possible for us.
In an ideal world, having carers who could come to the house early to support John when I was going to work, or stay late until I got home, would have meant I could have stayed in employment. Getting some financial support towards this would also have been essential – I would have been happy to pay as much as I could toward his care, but needed a living wage left over.
There are days when the realisation of what we have lost washes over me and threatens to overwhelm me. But together, we are slowly creating a new life and moving forward as we are able.