Becoming a carer kind of snuck up on me. My father Tommy was a fit, intelligent man and as he grew older he had his fair share of illness. They call it multiple-morbidity. As you age you are more likely to get two or more chronic diseases at one time. Spells in hospital increase. My carer role slowly crept up on me in that way. I did not resent it. I accepted it as normal.
Both he and I had previously cared for my mother who died at home. She had cancer and she was able to pass away peacefully at home with the support of MacMillan nurses. My father had looked after her for over two years of treatments and hospital visits. He put a lot of energy into it and when she died it was as if he kept that energy and switched it almost imperceptibly towards caring for his younger brother who was also by this time suffering from chronic illnesses. I remember witnessing this and being amazed at his resilience. It was like being a carer was now something he did. It had become a profession.
He knew the places to go, the people to see. He would rely on me for the technical stuff like benefits forms but he amassed a lot of knowledge and resources entirely himself. As mobility was an issue he also became his brother’s chauffeur and dealt with the ‘Motability’ side of things. All told I estimate that he was a ‘professional carer’ for about 25 years.
He has just died aged 94 and for the last 5 or 6 years, I have been caring for him. It was as if someone had flicked a switch or put a chip in his head to be that carer I saw 20 years ago. His brother died, he then became an important support to his childhood friend Eddie who was housebound with COPD. Alongside this his neighbour Mrs. M was blind and was starting to be housebound. Tommy helped her out with shopping and prescriptions. He only asked for help for himself when he needed it. For most of the twenty years since my mother died, he was self-sufficient. Looking back on his ‘caring career’ it was remarkable and he only stopped when he could not physically continue. It was now someone else’s turn. Me.
The last few years of his life saw his quality and enjoyment of life deteriorate. He had always joked about wanting to live to 100 recounting tales of Doctors saying he was ‘fit as a fiddle’. My role as carer increased as you would expect and in the last few years, there were several hospital stays and periods of more severe ill health.
I had become to see myself as a ‘carer’ and people at work acknowledged this to an extent. Interestingly though I did not see myself as the resilient, resourceful carer I saw in my father a few years before. I was and still am working full time in what is quite a demanding role, so I was fitting my caring around my home and work life. I was already taking over much of the running of my father’s house digitally through paying bills and ordering the things he needed. It saved time but meant I was juggling a lot all at the same time. Caring, work, and home became the three things I focussed on with very little time for ‘me’. This is the case for many carers.
I am sure I had already started to exhibit signs of stress of being a carer in the last two years.
Does caregiving cause psychological stress?
Caregiving often results in chronic stress, which comprises the caregiver’s physical psychological health. Depression is one of the common negative effects of caregiving. Caring for a person with dementia is particularly challenging, causing more severe negative health effects than other types of caregiving.
I can tick all the boxes. Scholarly articles on research into caring support my experience and collectively researchers call it the ‘the burden of care’. There is also I believe a positive side to be factored in. Something about the carer’s feelings of duty and responsibility.
As covid-19 arrived it put another layer of complexity over my caring role. At first, it was elevated levels of anxiety about shielding and a strong feeling of protection. At the same time, a kind of powerlessness at being unable to intervene until a medical emergency arrived and I had to. During the early days of lockdown, it was very difficult to get a GP to visit and give him a check up. A fall at home caused complications and an amazing NHS service called the Hospital at Home team was called. He started getting quality treatment at home and as lockdown rules became more relaxed he got more levels of care at home. Around September his mental capacity started to deteriorate and I saw a more rapid decline in him. Social Work began to look at longer-term care options for him but this came too late as he was admitted to hospital just as the second wave was starting. This meant I could not visit him and I could only call to ask how he was. Physically and mentally he went downhill fast and instead of maybe living out his last few years in a care home or sheltered accommodation he died in hospital.
Now I am left wondering about this role of being a carer. Someone flicked the switch in me too. It is like having a leg amputated and still wanting to scratch it. The phantom limb sensation just does not go away. Caring becomes ingrained and you catch yourself thinking as you did when you were in full caring mode- ‘I must do this, got to organise that’ and so on. It does not stop. As well as the many ways in which the government helps to highlight support for carers, at work, and so on, we cannot forget the needs of carers once they become bereaved. Many people will become carers more than once in their lives and will happily do that just as my father did but others will need help and support to turn that switch off to ‘make it stop’. Listening to the personal lived experience of carers is the best way to learn.