I’ve been running a survey on parent carer emotions on www.affinityhub.uk since 2016. Without fail the most commonly reported emotion is stress, anxiety or worry. In my research the number of parents reporting that they felt constantly ‘on edge’ was deeply concerning.
As well as taking strategies to manage stress such as exercise, being outside in nature, connecting with friends, ensuring you have enough sleep, one key tip from parent carers themselves was the development of what I call the ‘worry controller’…. this strategy involved prioritising and, at times, disengaging from activities and thoughts. In this extract from my book, Day by Day: Emotional Wellbeing in Parents of Disabled Children, I discuss this in more detail:
Worry controller
At times we may need to put something (a worry, a problem, something that needs sorting out) to one side and save it for another time. We may need to compartmentalise, or ‘park’ problems, if we are facing overload. This can be a useful form of stress coping as it creates a ‘psychological clearing’ that enables us to focus on the task in hand or provide some downtime.
‘I have to almost self-police things because one of the things that I do is that kind of that falling asleep time, that time of the night when it’s late and that’s when all the demons come out, that’s when all the things that you’re worrying about at the back of your mind come to the forefront and sit there to stop you sleeping. And I have to be very strict with myself not to let that happen, so what I actually do, I do a colouring in app on my phone, you know, just colouring in and it stops my brain from wandering off.’ – Parent carer
Using the analogy of an air traffic controller, the ‘worry controller’ has an overview of the many planes (worries/issues) under their care. At times they may need to keep a plane in a holding pattern before finding space for it to land. At other times they may need to keep a plane grounded at a gate or make the decision it is not safe to fly. In psychological terms this is like the Executive Function in our brains that helps us to organise things, deciding which issues we will deal with and in which order.
Parents found it helpful to use these mental strategies to wait until they were ready to face something, or until they had more resources to deal with a difficult issue. If it’s a conscious choice and you are aware of why and how often you are doing this then it can be beneficial. As with all things to do with the complex human brain it is not always clear-cut when something is a useful distraction – allowing you to relax or take time off from a worry – or when it is an avoidance of something difficult. For example, disengaging behaviourally from your child, or failing to acknowledge or process painful material, may lead to an individual fully dissociating from their experiences which can be problematic. This may be the case with certain traumatic experiences – which can be likened to putting difficult things into a cupboard until at some point the cupboard is full and the door bursts open. If this is your experience, then please seek help from a GP or therapist – there are evidence-based treatments for trauma.
Here I am referring to a benign (non-harmful) conscious dis-engaging or prioritising of competing demands. Engaging the worry controller requires a healthy re-focusing of attention, or positive distraction[1], away from things that are upsetting, in order to manage your immediate day to day life.
I notice how I can do this in school or team meetings regarding my son. Something in the discussion may make me feel upset but I have developed skills to put those to one side, in that moment, so I can focus on finding the solution or understanding the information provided. It doesn’t mean you neglect the feelings, and you may wish to consider them later on.
Having ‘worry time’ may be helpful, for example, if something is bothering you and taking over every waking moment, setting a limit with yourself – ‘I will think about this at 6pm for ten minutes’ – may allow you to have a break. It’s like a contract with yourself, agreeing when you will think and when you will have a break.
Worry about the future
There are also certain things about the future that might not be helpful to dwell on too much. Of course there are times when you need to think about things and pro-actively make decisions but there will be a time to consider this and a time when it’s unhelpful.
‘[I] try and be mindful of, you know, that’s not happening right now, she’s six, why are you thinking about when she’s fifty-six… think about it when it feels less overwhelming.’ – Parent carer
I think this skill – in moderation – is linked to psychological flexibility. There are many activities we may do to change our focus or provide a distraction when we need it – reading a book, talking about something different or having a change of scene, a simple act of walking to the bus stop a different way from normal, doing things in a different order, or telephoning someone you normally text. Daydreaming or using your imagination to exist in a world other than your immediate situation can also help you cope during a difficult or boring time.
Distraction can be useful if our lives become too stagnant and familiar. At other times there is too much distraction and we need to limit what we have to focus on. There is a place for removing, and seeking, distraction, both equally beneficial if they are in equilibrium.
How is this helping me? (Short and long term)
The question to ask yourself is ‘how is this helping me right now?’ If it is not helping or if this becomes a dominant way of coping, and you find yourself lost in a fantasy world then it might be you need some psychological help to re-gain balance in your life. One study also suggested that if we disengage too much we are less likely to make sense of or find meaning in our situation[2] (I explore this topic in the next chapter of the book). Some strategies are not helpful – such as regular escape using alcohol or activities that take over your life giving no room to think. But if used in a healthy way, prioritising demands, or parking certain worries for a short time can help manage the day to day (potential) overwhelm of being a parent carer.
Delaying your own needs
Another strategy that parent carers found useful was being able to delay their own needs so as to meet the needs of their child. All parents do this to some degree but it may be more prevalent in parent carers where their child has immediate needs that have to be dealt with, such as behaviours that challenge where they may harm themselves or others, or factors like a child needing medication or tube feeding. The child may continue to need this immediate attention for considerably longer than a non-disabled child.
Developing the capacity (or utilising the capacity you already have) to hold onto your own needs, in the back of your mind as it were, and then ensuring your needs are met later are crucial coping techniques.
‘[knowing] I’ve just got a couple more hours and then it’s bedtime, or she’s off to school, or I can go to work and run away… yes, knowing that there’s time off coming, really helps.’ – Parent carer
Balancing your energy levels
Although these regulation strategies may be part of parenting it is important to realise that it takes energy to delay our own needs. Our inner resources may be depleted and in need of replenishing after these events. By being aware of our emotions and recognising when our needs are unmet we will recognise when our cup needs re-filling. This may be resting on the sofa listening to our favourite music at the end of the day, making time for a chat with a friend or a warm bath. Ensure you take this time to re-charge.
[1] Aldwin, C. (2011) Stress and Coping across the Lifespan, in S. Folkman (ed.) The Oxford Handbook of Stress, Health and Coping, Oxford University Press: New York, p. 22
[2] Pakenham, K.I., Sofronoff, K. & Samios, C. (2004) Finding meaning in parenting a child with Asperger Syndrome: correlates of sense making and benefit finding, Research in Developmental Disabilities, 25, 245-264, p. 260