I am an unpaid carer for both my elderly parents and my disabled parents, and I also serve on both the Cardiff and Vale Regional Partnership Board as well as the Unpaid Carer Board. I have been struggling with my mental health since my early 30s, and these issues have worsened since I became an unpaid carer due to the stress associated with the role. The constant struggle to secure the right support for myself and my parents, along with the emotional toll that comes with caring for loved ones with life-limiting conditions, has been particularly challenging.
In addition, I host my own blog, Caring Life.
As part of our work within the Regional Partnership Board, we recently launched the Unpaid Carers Charter and Young Carers Charter for the region. A part of that charter is about the identification of unpaid carers and young carers so they can gain access to the support they need.
One of the issues that rarely gets covered is the death of a loved one and the effect it has on the mental health of unpaid carers. Unpaid carers have often given up everything to care for their loved ones, so upon the death of those they were caring for, they find themselves faced with the question, “what now?”. They have likely been caring for their now-deceased loved one for a long period of time, and the loss leaves a huge void in their life. We all grieve in different ways, but from what I’ve heard and read from unpaid carers who have lost a loved one, the loss takes a significant toll on their mental health. Besides the emotional loss, there’s also the loss of benefits they may have been receiving as a carer, and sudden demands to look for work. This is the last thing one wants to worry about when grieving, dealing with funeral arrangements, and other pressing matters. In my opinion, a carer who has lost a loved one needs better support, and there needs to be an understanding that they are going to need time to organise and grieve before they can even start dealing with issues like looking for work.
At the time of writing this article, we’ve just had National Carers Week 2023 and although there were some positive aspects, many unpaid carers still feel unsupported, lonely, and isolated as they continue to battle for support. These constant battles are both emotionally and physically draining, which has a knock-on effect on the mental well-being of an unpaid carer. Unpaid carers in Wales alone save the state £8.1 billion a year and across the UK that amount is £162 billion, equivalent to a second NHS. All too often we remain ignored, unheard, and unseen despite this huge contribution of time and effort to support our loved ones.
A huge issue faced by many unpaid carers is carer burnout, caused by emotional and physical stress. This can lead to the carer having a complete breakdown and then being unable to carry out their caring responsibilities. We often hear of carers only receiving any support once they reach this crisis point, but this is far too late. It would be far better if local authorities and social services put in the right support at the initial time of request to help carers avoid reaching burnout.
The lockdowns also had a massive effect on the mental health of both unpaid carers and those for whom we care, as we essentially became prisoners in our homes with no access to support services that were available pre-pandemic. For many, this is still the case as we remain shielded to reduce the risk of either ourselves or the people we care for contracting Covid. There was hope that the lockdowns would give people a taste of what we face daily as unpaid carers, but sadly that doesn’t appear to be the case. We were hailed as ‘unsung heroes’ and even classed as essential workers during the pandemic, but now we seem to be back to being overlooked.
Research carried out by Dr Siobhan O’Dwyer has shown that carers are in a high-risk suicide group, with as many as 1 in 6 having thought about taking their own life and as many as 1 in 5 having had suicidal thoughts in the previous 12 months. Even more shockingly, some unpaid carers have thought about taking the life of the person they care for as well as their own life. The research also shows that only about half of those who have suicidal thoughts are actually identified, so the figures are likely higher than the research suggests.
Some of the reasons a carer can feel suicidal are loneliness, depression, isolation, and stress and anxiety from their caring role and battling for support. A really worrying fact about those who have committed suicide-homicide is that when inquests have been held, the suicide-homicide is all too often attributed to ‘a tragic and unpreventable circumstance’. This only serves to oversimplify the circumstances, and had support been put in place, the suicide-homicide could have possibly been avoided.
Our government and social services need to provide much better support for unpaid carers and those they care for. There also needs to be more understanding around how the role can affect a person’s mental health and even lead to suicide, homicide, or suicide-homicide.
Carers’ allowance needs to be either increased or reformed to help lift carers out of poverty so they can afford to pay the bills and still have a life outside of caring. There needs to be better support for carers who have lost a loved one so they can have time to grieve and adjust rather than facing the sudden stopping of benefits and being thrown into the world of having to look for work.
Mental health support for carers needs to be improved, and there needs to be much more support for carers who are in crisis and feeling suicidal.
Finally, I’d like to thank those carers who took the time to help with my research and also thank Dr Siobhan O’Dwyer for taking the time to speak with me and allowing me to share her research.
Mike O’Brien is an unpaid carer for his parents, who are both elderly and disabled, and have various other health conditions between them.