Caring in the Time of COVID
by Rev. Dr. Michael Killoran Ross, Service Chaplain
The act of caring, defined as providing informal care to a family member, partner, or friend needing help because of illness, frailty, disability, mental health problems or addiction and who could not cope without carer support, is a growth industry. Approximately 6.5 million people (or one in eight adults) provide care in the United Kingdom and those numbers grow by an estimated six thousand on a daily basis. Of that number, approximately 1.3 million people provide over fifty hours of care on a weekly basis. The majority of carers are women (58% to 47%). Caring has positive implications for the economy (saving the economy £132 billion annually) and some potentially negative implications for the carers themselves: 72% of carers responding to a Carer’s UK Sate of Caring Survey (2018) indicated that they had experienced mental ill-health difficulties as a result of their caring role; 80% of carers stated they felt lonely and socially isolated.
Caring for someone experiencing a mental health issue creates a particular range of issues for the carer. Mental health difficulties are ‘unseen’ and the support required is often emotional. Thus, people caring for someone with a mental health issue may not see themselves as carers in a more conventional sense. However, it is estimated that there are 1.5 million people in the UK caring for someone with a mental health difficulty. Mental health difficulties cover a range of conditions impacting on the ways people think, feel and act. This includes anxiety-related and depression-related difficulties, phobias, eating disorders, addiction-related difficulties, Post-Traumatic Stress Disorders, Bipolar Disorders, Schizophrenia and Psychotic Disorders and Personality Disorders. These difficulties range from those that are relatively short in duration to those difficulties that are more long-term and chronic in nature.
When mental health difficulties are first apparent or even when they have persisted for some time, discussing the presenting issues can be of enormous value. Often the first step in providing care to someone experiencing a mental health difficulty is to broach the subject by opening the issues up for discussion. There are some useful suggestions for talking about mental health challenges, which may prove helpful.
Talking about intimate issues can be challenging. It is important to ensure that the conversation takes place in a private, distraction-free environment.
It is important to realise the ‘risk’ someone talking about their particular mental health issues might experience. It may be the first time an individual has opened up about very personal issues and time is required to ensure that they are given the opportunity to say as much or as little as they want to. For that reason, it may be helpful to allow the person experiencing the difficulties to lead the discussion.
Listening is key and it is important to avoid providing your own ‘diagnoses’ or assumptions about what it is you are hearing. Your task is to listen, not to treat whatever the issue is.
As always, it is helpful to keep any questions as open as possible and to ensure that your own observations are neutral and non-judgemental. Repeating back what you think you have heard can be helpful in developing a trusting encounter and one in which the person speaking to you will feel valued.
It is crucial that you are aware of your own limits and that you seek appropriate support, if necessary. It is also helpful for you to assist the person you are speaking to in accessing professional help, if required. This might include offering to attend an appointment with them, if this is suitable. If you are concerned about someone’s immediate safety, ensure that you take appropriate action.
Depending on the kind of mental health difficulty someone is experiencing, the caring role may be highly varied. The carer may be called upon to offer emotional support, to assist in the management of day-to-day tasks, to provide advocacy, to provide instrumental support like making phone calls or to accompany the person they care for during treatments. The ‘carer’ role may describe only part of the relationship with the person being cared for. That person may also be a partner, husband/wife, sister, brother, child, other family member or friend. The relationship with the person being cared may change over time. It may be important to recognise that change and for the carer and person being cared for to attempt to view the mental health problem as something external to them both, something that will need to be worked on together.
Mental health difficulties may take time to resolve and the carer may feel that they are being of little value or that they don’t actually understand that issues involved. Rapid changes in mood can create communication challenges. For that reason, and with more long-term difficulties, it has been suggested that it may be helpful to develop ‘codes’ for support requirements. Some people find a ‘colour chart’ of value. In this system, different colours identify different moods/requirements. For example, the colour blue might signify ‘I love you but need to be alone.’, red might mean ‘I’m irritated but not with you.’ Communicating a colour might be easier than communicating an entire feeling. A common issue for carers of those with mental health difficulty is recognizing deterioration in the person they care for before that person does. It might be useful to consider together what the ‘signs’ of deterioration are and to agree what appropriate actions might be required in the event that deterioration occurs.
For all carers, it is important to consider how best to look after yourself in a caring role. You might, for example, want to consider what it is you can and cannot do in the caring role, and equally, what the person you are caring for can and cannot do. Maintaining your interest in hobbies and leisure activities is important, as is the importance of remaining physically active and eating/sleeping as well as possible. Joining a Carer’s Group may be useful as a means of achieving emotional support for yourself. It may also be helpful to investigate what kinds of social service/local authority supports are available to you.
Caring for someone is a demanding role, and caring for someone with mental health difficulties can be even more demanding. If you find yourself in this position, remember that you are not alone and seeking support, both in the management of your role and for yourself in this role, is vital.