National Carers Week
By Alyson Norman
This week (5th June — 9th June) is National Carer’s week. The theme for this year’s week is ‘visible, valued and supported.’ Through my work with Anchor Point and my work as a psychotherapist supporting family members whose loved one has had a brain injury, I know that the term ‘carer’ can seem quite contentious for them. The term carer doesn’t sit comfortably with family members a lot of the time, but after brain injury it can be even more complex. Often the family won’t need to do any personal care or support with ‘activities of daily living’. They may not even need to live in the same home as their loved one because they are broadly able to live independently. And yet, they still take on a sizeable caring role for that individual.
This role often consists of making appointments, managing appointments, attending appointments, helping the person with basic planning, supporting them to initiate tasks around their home that they otherwise wouldn’t manage (for example basic cleaning jobs). They may have to be in control of the person’s money or at least support with paying the bills etc. All these responsibilities take their toll on the family members and also eat into their own lives and time. The more cognitive aspects of brain injury are often described as the hidden elements on the disability because a person can appear to be functioning very well but behind the scenes they are struggling to manage daily tasks. This hidden nature of the disability feed through to family members. The literature around care giving has identified that carers often feel invisible because their role isn’t acknowledged by health and social care professionals and they exists in the shadows helping to keep a person’s life running broadly normally. This is even mor so for the families of those with a brain injury where the disability isn’t even visible.
Carers also express a sense of feeling under-valued or unvalued for the role that they play. The statistics demonstrate that there are around 5.4 million unpaid carers in the UK. They often have to give up work or reduce their hours and this has a wider impact on their quality of life not to mention an economic impact alongside their role in keeping our social care system afloat (research suggests unpaid carers save the UK economy £132 billion every year). Yet despite these important contributions they experience a sense of being undervalued by people in society and their role not taken seriously. In the case of brain injury, we see this being exacerbated by health and social care professionals who do not take the time to adopt a whole family approach to their working and instead focus purely on the individual with the injury and do not consider to include the family in conversations about long term care needs and set ups.
Finally, carers often feel unsupported. We have all experienced those time of feeling burn out and needing a break or a rest. But what do you do if there is no ability to take a rest? If you ‘job’ has holiday leave and there is no cover if you are sick or overwhelmed? The answer in many cases is that you just keep going regardless of how burnt out you feel. In the case of brain injury, family members have usually experienced some kind of major catastrophic health event that has led to their loved one receiving a brain injury. This will often leave them with trauma, feelings of anxiety and depression. They then have to face the reality that their loved one is fundamentally changed and different from who they were before, leading to experiences of grief while living alongside the person they are grieving for. Then of top of that emotional barrage, they then face the prospect of having to take responsibility for this person for the rest of their lives. In all of this, professionals around them may forget to even acknowledge the burden they are carrying and treat them as though they are invisible. This lack of support for caregivers in their own right, not just support in helping them to look after their loved ones, in the reason why Anchor Point exists — to raise awareness and educate organisations to improve their provision for family members.
If you are a carer/family member of someone with a brain injury, please know that we are thinking of you. Not just this week but every week. If you know someone who is a family member of a person with a brain injury, consider checking in on them and offering an ear to listen or a shoulder to cry on.