I’ve been the main carer for my mum and dad for a number of years now. When I was first caring for them, I was still working as a freelance journalist and had just become a dad to my son.
My mum was initially very reluctant to accept help. The real challenge was that mum lacked awareness of her own limitations and of the fact that she actually did need help. Her general outlook is that there’s no need to make a fuss and everything will be fine. As I became more involved in helping her to manage her multiple health conditions, it became more apparent that she had issues with her memory. She was forgetting to take her medication for example. She was also missing hospital appointments and not fully acknowledging her health issues. Her GP was very helpful in getting a Dementia diagnosis by making a referral to the memory clinic for an assessment.
At this time, my dad was also struggling. He was still driving and this culminated in him crashing the car around the corner from his home. My mum was eventually diagnosed with Alzheimer’s and dad with Vascular Dementia.
My dad fortunately had had the foresight to apply for a Lasting Power of Attorney for both him and my mum a few years before. However, the way it was drawn up with each as the others attorney and my sister and myself as ‘replacement attorneys’ complicated the process of stepping in to manage their affairs. It required getting a mental capacity assessments produced for both of them by their local council to prove to the Office of the Public Guardian that they were no longer capable of managing their own or the others’ affairs. If the documents had been drawn up differently, it could have simplified what was a very time consuming and stressful process. I would wholeheartedly recommend that everyone should put a power of attorney in place as part of a living will.
Eventually it became too much managing my job and the care that my parents needed, as well as having a baby. As my son was hitting development milestones, my mum and dad were hitting deterioration milestones. At the end of my wife’s maternity leave, I became the sole breadwinner. Between all the hospital appointments and other carer’s responsibilities, I was only managing to work part-time, which put us under a lot of financial strain.”
What are the challenges that you’ve experienced around caring?
Getting the capacity assessments for my parents was very stressful and frustrating. It was also very frustrating to find the right services to support me to try and resolve this situation.
There’s also been the added stress of family relationships and managing the involvement of my sister. In many families, where there are caring responsibilities, it tends to polarise, so that one person is doing the bulk of the caring. It has taken a lot of emotional energy to manage the involvement of my sister. I’d say this contributed to the overall stress of caring for my parents.
The biggest challenge of being a carer is making sure that you look after yourself in all of this. I have a history of depression which, during the time that I’ve been caring for my parents, has been exacerbated by the stress of trying to juggle everything that I need to do in life. At the lowest point, in early 2019, I felt I could not help or do anything for myself, my son and wife and my parents. After my wife took me to our doctor, the help that I received from my GP and Islington’s iCope services has been absolutely brilliant and made a big difference. A combination of antidepressants and CBT improved my mood and gave me additional tools and techniques to manage my mood. What I’ve come more to grips with in recent times is that, whilst lots could be done and should be done, I’ve realised that I cannot do everything. I need to prioritise what really needs to be done.
It took me a long time to realise that helping someone with their admin, helping to make decisions about their healthcare and taking them along to appointments is all still providing care. You don’t have to be doing personal care, washing and bathing, etc. to actually be a carer for someone. Once you’ve acknowledged that you are in fact a carer, then it becomes apparent that there is help and support that is potentially available to you to ease the load.”
What would you change, if you could change one thing about caring?
“Recognising sooner that I was a carer and the added pressures that brought into my life, as well as taking steps to seek support to care for myself sooner. For the first year I was solely focused on my parents’ needs and in finding support for them. As I found out the hard way, failing to look after yourself as a carer can leave you unable to help anyone, including yourself.”
What support have you been able to get with your caring role?
I came to Islington Carers Hub quite late in my caring journey, but they are a great source of information and guidance on how to get financial and emotional support – they place a lot of emphasis on respite for carers, and how important it is to look after yourself when you are caring. I’ve attended a number of the monthly drop-in sessions. Having that hour to reflect and discuss with people in a similar situation the issues you face is really helpful. They have been a chance to share ideas and experiences. It’s reassuring to know that they are there.
One of the best things that has happened since being a carer is when I went along to last year’s Carers Rights Day – hosted by Islington Carers Hub – I started talking to the charity, ‘Working for Carers’, and as a result of this conversation I have recently studied my level 3 introduction to adult education at Camden Working Men’s College. ‘Working for Carers’ encouraged me to build on the volunteering and mentoring I’d done around literacy and to take a course to start out on the road to becoming a teacher. Sigal Foster there gave me the confidence to believe that a change of career could be possible and the practical support to set me on that path.”
What are the positives about caring?
Whilst my parents wouldn’t tell me directly, the paid carer who helps them has told me that they tell her that really appreciate what I do for them. I have the feeling that I am giving back to my mum and dad some of the care that they’ve given me over the years.
It’s made me more resilient. It’s been very tough at times, but I’ve learnt from those situations the importance of looking after myself in order to be able to look after others, and also to focus on what’s really important and practical rather than desirable and possible.
There has been a huge number of people involved in caring for my parents and supporting me to care for them. The process can be daunting and navigating the care system is sometimes really hard, but I have been amazed by the kindness and support that is out there.”
