Life in Our Bubble: Respite
Our daughter’s respite breaks stopped a couple of months ago. We’re really missing them. We fought tooth and nail for these when she was little as we were becoming burnt out and needed time to recharge our batteries. It was tough being assessed on our vulnerabilities while everything was still unravelling with our daughter.
She’s been having more or less monthly weekends away at centres for people with complex health issues and learning disabilities for years now. There have been intermittent periods when she hasn’t gone, usually during transitions between services or for health reasons. The longest gap occurred when we moved home to another part of the country. We’d planned everything carefully, done our research, made ourselves known to appropriate services. How annoying it was when we discovered that the referral for respite care had been lost and we would have to start the whole process again from scratch. It took ages.
We’ve come to rely on our respite and relish the freedom it gives us and our daughter. Knowing she is safe with professionals who are properly trained and understand the importance of our parent partnership has been crucial to us feeling able to let go and focus on ourselves for a change. It hasn’t always been the case. Being carers is all consuming and exhausting as anyone in the situation knows. We appreciate how lucky we’ve been to have these times. So many people don’t.
At the end of last year our daughter reached the upper age limit for her respite placement and the search for somewhere else began in earnest. So far it’s proved fruitless. There’s nothing suitable in our area. Our funders tell us we have to go further afield. We’re looking into this, although reluctantly. We’d rather she was within easy driving distance in case we’re called out in an emergency. You never know.
We aren’t sure that our girl misses her weekends away. It’s hard to tell. She’d settled well at the last place after a patchy adjustment and usually seemed pleased to arrive there, greeting the staff with smiles and giggles, forging ahead to look around and see what was what. She’d have chill out time and sometimes take part in cookery and music therapy sessions with the occasional outing with her fellow residents to shows, swimming, the seaside. But she was always thrilled to get back home to her own surroundings, her own bed, her own people, and would take a few days to recover from the busyness of that environment and the sensory overload.
It’s Sunday morning and we’ve been checking the weather forecast. It looks promising after all the heavy rain we’ve had lately. A PA is coming to take our daughter out. It’s another chance for her to mooch about town with a favourite person, have lunch, people watch. Some independence from us. Now it’s our respite. Our time.
My partner and I work hard all week, don’t sleep properly. There’s always so much to fit in and its hard to switch off from the minutiae of our daily lives. We are cream crackered. What we would really like is to make the most of our empty house and relax. But there are chores to do and lots of catching up. Instead we decide to take advantage of the unexpected sun and go for a walk by the sea. We can rest when we get back later, there’ll still be time before our girl comes home.
We have a lovely stroll, pause for coffee, don’t mention our daughter once. We look at the clock. It’s ticking. We stop off at the supermarket to buy a few things to keep us going for a couple more days. Unfortunately the queue at the check out is longer than usual and we waste precious moments waiting to pay for our groceries.
Once home it’s only a matter of minutes before our daughter bursts through the front door with her PA. They’ve had a lovely outing but our daughter’s made it clear she wants to come home. She’s tired too. She gives us huge hugs and demands a dvd. My partner and I exchange glances, our dream of a couple more hours of peace and quiet shattered.
Next time it will be different, we say to each other later. We won’t be so tired, we’ll have more energy, we’ll have an adventure. Well, maybe.