On the face of it this is a really simple question, yet it is one that can generate so much discussion. It’s something I’ve been asked a lot in the last few years in the context of, “Why did you care for your dad?”
People are often surprised that as a teenager, twenty-something and thirty-something I would have put my life on hold to care for my dad. Yet consider this: when people begin a family they are rarely asked, “Why would you want to have children?” despite the massive life-change and life-long commitment parenthood entails.
Although the motivation for becoming a carer, the reasons people continue with caring (often against a backdrop of significant difficulties), and the way in which many carers struggle to move on with their life after their caring role ends are very individual, there are some common themes that often surface when you talk to carers, and I want to explore those commonalities in this Carers Week 2017 blog.
Why become a carer?
Many people who’ve never been a carer often approach the topic under the premise that people who are carers have made a lifestyle choice to be so. Big mistake. I have never met anyone who woke up one morning and actively decided to become a carer for a relative or friend. Every carer I have met fell into caring for someone they love due to various circumstances, largely beyond their control, and generally never realised they were becoming a carer.
It is a well-worn phrase, but worth repeating: I never considered myself a carer for my dad, just a daughter looking after her dad.
My G8 Dementia Summit film
Do labels matter? In essence no, if you realise that you have taken on a responsibility that has consequences for your life and your health and are proactive in ensuring that you look after yourself as well as the person that you are caring for. In reality, however, the ‘carer’ label will – in theory – give you access to services (if they exist!) that without that label you wouldn’t be able to access. If those services are fit for purpose, they can help to prevent carer ill-health and carer breakdown.
Why do you continue to be a carer?
Again, this question suggests most people make an active choice. They don’t. Carers remain as carers often through a lack of choice, and as much as it may be very un-politically-correct to admit it, often through a sense of duty, obligation or necessity.
However, that isn’t to underestimate the human emotions that accompany caring. They are potentially the biggest driving factor towards carers remaining as carers once you remove the ‘circumstances beyond your control’ element. Moreover, it’s emotional ties that often keep a carer caring for longer than is perhaps good for them or the person they are caring for.
As much as caring is immensely difficult, there is something in the depths of the human psyche that wires us to prevent suffering in those we love and give comfort and support. The rawness of this emotional pull isn’t the same for everyone though, which may explain why in a large family it’s often one person who is the primary carer with other family members very much on the peripheries. And that is no one’s fault – again, it’s often a mix of circumstances with a good helping of emotions.
Why is it so hard to move on when your caring role ends?
Again, it’s those emotional factors biting us in the depths of our hearts and souls. You don’t spend that much time with a person, and potentially nurse them through the end of their life, only for your life to return to your pre-caring days afterwards.
For a start, the bereavement experience is very different – you aren’t just grieving the loss of the person, but a loss of the purpose and routine you had. Caring, for all its challenges, is something many people become exceptionally adept at, and the feeling of doing something so important so well is a huge source of pride which can be lost when you are no longer caring for the person.
Why is capturing carer knowledge and experiences so important?
One way of combatting the loss of skills and purpose is to go into a social care role professionally, and some of the very best care workers I’ve met in my consultancy work have a strong background of being family carers. For other people, caring for ‘strangers’ is just too difficult after caring for a loved one, no matter how much we might say that ‘Strangers are just friends you haven’t met yet’, or indeed the former carer’s own health or age make such a career choice prohibitive.
My interview with Havas Lynx where I talk about the wealth of knowledge and experience carers have and the importance of capturing that