Our daughter now has about half the paid care each week that she’s funded for. We reduced her PA team to two as lockdown started to avoid any undue risk of exposure to coronavirus from the PAs supporting other clients in the community. They keep in regular touch, sending phone videos to amuse her. She, like most of us, has a penchant for the small screen and will happily gaze for hours given the chance. And she loves watching their silly antics and laughing at their jokes.
We’ve become a tight knit unit at home, our daughter, my partner and I and both of the PAs who come most days of the week although never together. It’s intimate and intense, life in limbo, with the days punctuated by busts of activity and then periods of slowing down, stillness. Thank goodness for the sunny weather. It helps.
As I am not working at the moment and my partner is busier than ever, I’ve taken on the role of taxi driver to avoid the PAs having to use public transport. I’m also unpaid PA when 2:1 support is needed. This role consists mainly of assisting our daughter into the garden, joining her and her PA for lunch and supporting them on outings for trike rides. It’s no hardship really. It’s fun.
We introduced the trike rides early on, justifying them as being our daughter’s only means of proper physical exercise, and for her mental wellbeing. We go along the seafront at quiet times, although quiet times are becoming more difficult to find as lockdown is easing and more and more people are venturing out.
Our girl loves the freedom and space these trips give her and being able to people watch is a real tonic. She is a sociably responsive young woman, knows how to get the best from the people who give her time. She enjoys making them smile. She’s missing out and we worry she’ll become bored and switched off with only us around and stuck at home.
I’m enjoying getting to know the PAs at such close quarters. They are lovely people, bright and interesting, and have become an important contact with the outside world. I see how they bring joy and sparkle to our daughter however she is feeling, as well as a different energy. She’s always excited to see them. They’re familiar with her many facets and foibles, are doing a great job. I’m happy to spend time with them, but also look forward to having days to myself again at some point. Our daughter misses people. I miss alone time.
It’s bright and hot today and our girl and her PA are sitting at the garden table under a large umbrella. A bowl of water containing stacking cups and a watering can is in front of them with a pile of books just out of reach. Lunch is over and I’m upstairs catching a few quiet moments. Through the open window I can hear the gentle rumble of a story being told against the splashing of water and banging together of cups. It’s comforting.
I imagine what it will be like when we feel it’s safe enough to build up the team again, have more comings and goings, more input, more noise. But that will be for another day. Now is too soon.