• Suzanne Bourne

What is it like to be caring from a distance?

Across the UK, there are many people now experiencing an enforced distance from their loved ones. How might this feel? What might help? Here to share some insights is Dr Sarah Robertson. Sarah’s current research is focusing on the experience of long distance dementia carers.

My work has focused on people who find themselves taking on caring responsibilities for their parents, from a distance. I interviewed long distance carers, to hear their stories and better understand what they needed. This work seems to have taken on a new relevance, with many more people caring remotely in the context of COVID-19.

Carers are now limiting the contact they have with their loved ones and focusing on essential visits only. Many carers report feeling torn in the balancing act of providing enough care to ensure wellness and safety, whilst minimizing the risk associated with COVID-19. Divided by location, long distance carers are used to struggling with balancing commitments with work and family life in one place, and the needs of their parent in another. Caring involves establishing routines and patterns, but often the unexpected make them unworkable.

Long distance carers rely heavily on carefully coordinated networks of support. With all of society stretched in one way or another, carers will now be impacted by a reduced capacity in the networks they rely on. Many more will find themselves setting up networks remotely, relying on technology and coming up with creative strategies to cope with the distance.

Due to COVID-19 there has been unprecedented and unimaginable change in society. Psychosocial transition theory (Tyhurst, 1958) states that change itself invokes disturbances to mood and functioning arising from uncertainty, unfamiliarity, and disorientation. Tyhurst (1958) suggested individuals could be helped by having time to understand the new situation, adapt and being supported with the tools to cope.

On top of this, carers will be experiencing the impact of enforced distance. My work with carers uncovered the psychological and emotional consequences of distance caring. Carers described heightened anxieties and fewer avenues for reassurance. Many described feeling alone as they struggled to manage high levels of uncertainty. Others talked about a sense of loss. Distance results in lost opportunities. Many carers will also be grieving for losses in their own lives; e.g., planned holidays, parties or social connections. Now, more than ever, carers face additional stress whilst running the risk of an empty tank.

Our research suggests that distance carers may find the following strategies helpful:

  • identifying and managing stress

  • not minimizing the role that can be played remotely

  • letting go of expectations and guilt

  • accepting choices

  • validating emotions

  • communicating assertively with others and asking for help when it is needed

  • remaining open and flexible. Trying not to control what is impossible to control.

Many of the carers we spoke felt better when they felt heard. Distance carers are, in fact, not alone. These emotions are normal and they will pass. Just like COVID-19.

Some of the carers we spoke to said they found strategies from Acceptance Commitment Therapy (ACT) helpful. ACT aims to help people cope with strong emotions when they arise, focusing on the present and moving towards a valued direction. ACT released COVID-19 strategies for people who may be feeling overwhelmed.

These can be summarised as:

F = Focus on what’s in your control A = Acknowledge your thoughts & feelings

C = Come back into your body E = Engage in what you’re doing

C = Committed action

O = Opening up V = Values I = Identify resources D = Disinfect & distance

For carers interested in more psychological strategies for managing anxiety, restoring sleep or practising self-care some worksheets can be found here.

Dr Sarah Robertson is a trainee psychologist and researcher in dementia care at the University of Liverpool. Her research focuses on living well with dementia and supporting carers. Currently she is supervised by Dr Sarah Butchard at University of Liverpool and Dr Penny Rapaport at UCL. You can follow her work on Twitter @1SarahMae

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