What is Respite?

At the Coalition’s monthly meeting for December, we found ourselves having a conversation that I’ve heard quite a few times since starting my position: “What is respite?” We didn’t come up with an exact answer; six members sat around the table, each adding their own ideas as the discussion continued. In my opinion, that experience exemplifies an element of respite: it is different for everyone when you get down to specifics. It is also a discussion that needs to be continuing and growing in our communities. To contribute to that, I’d like to talk about a few of the main points we discussed.

1. Respite is care for the caregiver. The message we always want to spread is every caregiver needs and deserves respite. Being a caregiver isn’t something you sign up for, it is part of “your lot in life.” Everyone has times which are tiring, stressful, and difficult. To be able to provide the best care, all caregivers need to take a break from the responsibility some times. The specific activity or the frequency of these breaks all depends on the individual. The most important factor is that the time away from the care recipient is rejuvenating.
2. The direct support work doesn’t change. A big part of our discussion revolved around “What’s the difference between a respite worker and a direct support professional (DSP)?”As a group, we started to come to the conclusion that there isn’t a difference on the worker’s side. The priorities remain the same: to keep the individual safe and happy, help promote independence, and make the time meaningful to everyone, among other things. Aside from contact information, it’s not important for the worker to know whether the caregiver is going to an appointment or out for a day with friends.
3. It’s not up to someone else to decide what’s rejuvenating for the caregiver. This is another issue that contributes to the difficulty of defining respite. To one caregiver, it might be getting a manicure or having dinner with friends. But what if someone else finds their time at work inspires positive, restoring feelings? It is not up to anyone else to decide that that can’t qualify as respite if it has the same beneficial end result.

Overall, our conversation emphasized that respite absolutely must be caregiver-focused. The direct support care being provided will be recipient-focused as always, no different than other times. This is a conversation we want to be ongoing and involve any and all community members.

How do you define respite? We would love to hear in the comments!