A few years ago, the partners of a couple of Shine members approached us about starting a ‘Plus Ones’ group. Having cancer is tough, they noted – but so is supporting someone with cancer. We started our Plus Ones group online and it’s continued to grow over the years. As we’ve worked more on supporting the supporters, we’ve also learned more about the issues that they can face.
In this blog, Dr. Jason Spendelow (one of Shine’s original Plus Ones) outlines some of the issues that ‘carers’ often face when supporting someone with a life-limiting illness. We know a lot of Plus Ones don’t consider themselves carers (78%, according to a recent survey that Shine carried out!) but we hope this gives you some insight into the support that someone looking after a young adult with cancer might need.
While carers do report many positive experiences, the physical and psychological wellbeing of this group is often compromised due to the stress associated with the support they provide. Those who provide significant levels of care to another person are more than twice as likely to suffer from poor health than non-carers (Carers UK, 2004). When asked directly, the vast majority (84%) of carers said that caring had a negative impact on their health (Carers UK 2013). Carer wellbeing, then, is a particularly important topic in cancer and other chronic illnesses. Carers provide a huge amount of support to loved ones affected by these illnesses. This means it is even more crucial that we take care of the carers.
Mental & Physical Health
We have an increasingly large pile of research available on carer wellbeing. From this, we know that psychological issues are among the most commonly reported difficulties amongst carers (Stenberg et al 2010). An important concept here is ‘carer burden’, which refers to negative emotional experiences that occur from providing care. The level of carer burden varies from person to person, with higher levels of burden being linked to female carers, living with the care receiver, spending large amounts of time caring, being socially isolated, under financial stress, and having no choice in becoming a carer (Adelman et al 2014).
Carers can experience a range of psychological difficulties. Some of the most common issues tend to be low mood and depressive symptoms, elevated levels of stress and anxiety, and lower quality of life (see for example, Braun et al 2007; Pinquart 2017, and Easter, Sharpe and Hunt 2015). Rates of depressive and/or anxiety disorders are higher amongst adult carers when compared to the general population. These figures do not mean that you are destined to develop such psychological issues, but carers are clearly more vulnerable. In late 2016, Shine carried out a survey of Plus Ones and found that 58% had experienced stress, and 77% had experienced anxiety.
In addition to psychological difficulties, carers can experience decline in their overall physical health. Physical health problems vary and range from fatigue to insomnia, headache and gastrointestinal issues (Jassem et al 2015).
Despite the physical and psychological challenges discussed above, many carers can also identify positive aspects of their experience. Some of the reported positive experiences included being able to give back to someone, knowing the person is being well cared for, improved relationships, personal growth, and an enhanced sense of meaning or purpose (American Psychological Association 2018). Finding meaning and purpose is an experience reported across several groups of carers (Carers UK 2004). Being able to help is a source of satisfaction for many carers, while ‘giving back’ to someone and having an equal or reciprocal relationship are other positive outcomes (Spendelow, Adam and Fairhurst 2017; Buchanan et al 2009), Ribeiro and Paul 2008). The relevance to wellbeing is that experiencing positives from caring help people to cope better with the stress that comes their way.
Taking care of yourself
Your wellbeing is influenced by many factors. Believing that just one ‘thing’ is the cause of any experienced psychological difficulties is usually inaccurate and unhelpful. Attempts to improve your wellbeing, therefore, usually involves taking several factors into consideration. Look, I could bang on here about all the things you know you should be doing already: getting plenty of sleep, exercising, and eating vegetables. Yes, this is all true and fundamental to your health. But I won’t repeat the same advice given millions of times already.
Perhaps a more useful strategy is to ask ‘What barriers stop you from taking better care of yourself?’ and, more importantly, ‘What can you do about these barriers?’. Some barriers are physical: for instance, you don’t think you have time to look after yourself. Other barriers are psychological. For example, some carers feel that it is selfish to prioritise themselves over the loved one they support. Asking what barriers exist (and why) helps work out what might have gone wrong with previous failed attempts to take better care of yourself. These barriers need to be directly addressed, otherwise it doesn’t matter how many times you are told to go for a walk and eat some broccoli.
It may be that you need to discuss this issue with a sensible person that you trust in order to make progress with your wellbeing. Having said this, here are a few questions you can ponder to get you thinking more about barriers to better self-care:
- What emotions might you experience if you put more time into self-care?
- Why do you think you would experience those particular emotions?
- What do these emotions say about your attitude to self-care?
- What would have to change in your life to result in more time given to your wellbeing?
- How might the wellbeing of the person you support be negatively affected if you spent more time looking after yourself?
- What would be the worse thing someone could say about you as a carer? How does that influence your self-care?
The Bottom Line
Carer wellbeing matters, both to the quality of life of the carer, and the wellbeing of the loved one that the carer supports. To cope with the huge challenges brought about by cancer, you need to be thinking of self-care strategies that are positive and sustainable over the long-term. If you fall over, both you and the person you care for will find things even tougher. Thinking about barriers to self-care can be a useful way to better understand your current approach to your health, and how you can improve it.
Jason is a clinical psychologist with a special interest working with people and their carers affected by chronic illness and disability. He also supported his wife through cancer. He runs his practice in Surrey. See more at www.jasonspendelow.com
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