The dictionary definition of ‘respite’ is “a short period of rest or relief from something difficult or unpleasant”. [1] If I was into banning words, that first sentence would be the blog post. Enough said. But the problem with banning words is that we grasp for an alternative word and lose the opportunity to demand a different world.

That dictionary definition implies of course that the rest or relief is from a difficult or unpleasant situation, or person. And most descriptions of the term ‘respite’ and the associated ‘care’ play into this framing. There are references to “the daily grind of caregiving”, “the emotional and physical strain of caregiving” and how “caring for someone can be relentless and exhausting”. To respite “alleviating the constant pressure and stress associated with caregiving”, providing “temporary relief”, “short term relief”, “a well-earned break”, “much needed time to breathe”, and “making caring duties more manageable”, preventing “emotional and physical burnout” and “allowing [the carer] to come back feeling rejuvenated and ready to handle the pressures of their everyday life.”

Respite is for “a primary caregiver” or “carer” and from “the person you look after”, “the person you care for”, “the cared for person”, “the dependent person”, “the service user”, “the elderly”, “PWD”.

As with the carer narrative, one person is active (caring, stressed, exhausted) and one is passive. Looked after. Cared for. Dependent. Anonymous. The implication is that care is one-way, and the break is one-sided too. There’s no recognition or appreciation of reciprocity, mutuality, love in this narrative – or of the mutual need for a break. 

Care as a duty. A task. A transaction. 

“Respite care lets you take a break by replacing the care you provide.”

“It allows the person you care for to continue to receive the support you’d typically give them on a temporary basis.”

“If you decide to take a break from caring, the person you care for can access respite care to temporarily replace the care you would provide.”

Care that is replaceable, not relational.

Indeed, ‘respite care’ is also referred to as ‘replacement care’, which is, ironically, the name given to insurance you can purchase alongside new items, to protect against breakdown. 

‘Short breaks’ is a more common substitute for the term, and talking about needing and having a break is more everyday, human language. We don’t tend to talk about ‘respite’ in our kitchens with our families, or at the café or pub with our mates. The term is not familiar, and I’ve seen a few references to respite being heard or understood as ‘restbite’. 

A bite of rest. 

We all need a break, a rest. In our gloriously ordinary lives, a ‘short break’ implies a holiday – a mini-break city-break coastal break camping glamping caravan cabin cottage spa luxury boutique hotel. 

“These short breaks let you swap the everyday for extraordinary adventures”.

But in serviceland, these ‘short breaks’ let you swap the everyday for “doing other things around the house”, “attending medical appointments”, “spending time with other family members”, “catching up on work”, “catching up on sleep”, “getting some fresh air”.

A short break from the everyday to do what most of us would consider to be the everyday.

A life as a treat.

And because, in this narrative, the ‘cared-for’ isn’t quite human, ‘they’ just need to be put somewhere safe while you have a break.

“Respite care is short-term support that allows family carers to take a break while their loved one is cared for by trained professionals.” 

“Sitting services give you a chance to have a few hours away from the person you care for.”

“Arrangements could be made for the person you care for to attend an activity group or day centre once a week, to give you a regular break from caring.”

“The service allows the service user to have respite in an agreed and appropriate placement.”

When we do recognise ‘the cared for’ as an actual human being, “respite care can be “a chance to meet new people”, “enjoy a change of scenery”, “have a little trip out”, “socialise with others”, “build new friendships” and “access community activities such as a trip to the pub, community clubs, cafes, garden centres and further afield.”

Again, a short break from the everyday to do what most of us would consider to be the everyday.

A life as a treat.

Our gloriously ordinary lives are made up of the mundane and the heart-sing. “Doing other things around the house.” “Attending medical appointments.” “Catching up on sleep.” “Spending time with other family members.” “Enjoying a change of scenery.” “Building new friendships.” “Socialising with others.” (And yes, one person’s mundane is another’s heart sing, and heart sing for you may equal heart-sink for me).

And in our gloriously ordinary lives, we get natural breaks from each other, as each of us spends time with different people – or alone – doing the different things that matter to us.

But the story of respite is of an hour, or an afternoon or a couple of days a week or month to have a semblance of a life, while all the other hours days weeks months are all about survival.

So, whether we call it ‘respite’ or ‘restbite’ or ‘replacement care’ or ‘short breaks’, we’re perpetuating the perception that older and disabled people are passive and needy and a burden – not fellow human beings with equal rights to equal lives.

We’re sustaining a system that doesn’t recognise reciprocity and that exploits ‘caring’ as a duty – where requiring and asking for some help equates to ‘struggling to cope’ or ‘breaking down’ or ‘burning out’.

We’re colluding with the idea that ‘care’ can be sustained by a one-off payment or some vouchers measured out in hours that – following an assessment – you may or may not be eligible for. 

A ‘benefit’ that may impact on your benefits.

And, as ever, we’re believing in, and buying, services as solutions.

But what if we flip this narrative, and start investing in lives, not services?

In all of us living gloriously ordinary lives in the place we call home, with the people and things we love, in communities where we look out for each other, doing the things that matter to us. 

And in all of us having the connections and relationships and resources and support we all require to live our lives in the way that we want to, at whatever age or stage.

This was never about finding a different word.

It’s always about building a different world.

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References

[1] Respite, Oxford Languages