Respite – when things go wrong and three nights turn into 10 nights away

Braeden headed off to respite a couple of Friday nights ago for a weekend. It was the first time he would be staying three nights instead of his usual two nights. In the end Braeden stayed for ten nights in what was an accidental and forced ultimate test for his resilience at respite.

Braeden staying for his originally booked three-night stay was a bit of a test to see how he would go. As a couple Hubby and I were thinking it was time for him to trial the extra night every second stay at respite for everyone’s benefit. Hubby and I get exhausted with the constant broken sleep and just need time to recharge. Although we are young at heart there is some acknowledgment that we are not as young as we used to be, and we need to take care of our health so we are at our best to care for and support Braeden and Amelia. For Braeden we see it as an opportunity for him to socialise, experience a different environment and learn to communicate his needs with less experienced communication partners. It’s important that he has the chance to learn to communicate well for his future and it is our main priority at the moment.

On the Sunday, the day before Braeden was to return from his stay at respite, Hubby tested positive to Covid. After dodging it for so long it was a bit of a shock. Hubby immediately moved into a self-contained cottage at the back of my parent’s house next door in the hope it wouldn’t spread through the rest of the family. We had spent the previous day with my parents, so it was a real concern. Keen for Braeden to avoid Covid we decided to ask if Braeden could extend his stay at respite until we knew if Amelia or I would test positive. When Amelia tested positive, we needed to extend the stay further. Braeden’s three-night stay ended up being ten nights. A real stretch for all of us.

We continued to have Braeden’s usual support workers pick him up each day and take him out as they would if he was at home. This ensured there was some continuity with support staff that know him incredibly well. It was the closest we could get to family looking out for him without us being with him. We Facetimed him when he was out and it was lovely to see his happy smiling face each day.

Because he hadn’t been at home in close contact with the Covid patients he was also able to go to his gym session as normal. Keeping him at respite was the best way to keep his life as normal as possible, it just meant he was without the comforts of home. Braeden’s daily support workers commented on how tired Braeden was each day and I’m sure that came from adjusting to a different routine and not really having downtime. At home, Braeden is rarely in his wheelchair, he spends a lot of time sitting on the lounge watching television. I think staying in his chair must be quite exhausting for him and he was also probably working harder to communicate his needs too.

 

Like most things in life, there’s been positives to come out of this. We now know that if need be, Braeden can cope well away from us for longer than his usual respite weekend. Braeden is difficult to shave so we’ve never sent the shaver to respite figuring it was in the too-hard basket. With Braeden’s stay stretching out beyond the three nights we had to send it otherwise a Woolly Mammoth would have returned home after the ten days. Although difficult, respite staff did manage to do the shaves. A big step forward and a relief that someone else could in fact manage it.

Braeden being away from us was made easier because his day-to-day support staff were keeping an eye on him and reassuring us he was fine. It’s much harder for occasional respite staff to provide that continuity. When you support someone every single day you get to know all the small details that can make their life richer. From the experience of getting to know Braeden by working so closely with him to getting daily tidbits from us about his personality and likes and dislikes, regular support staff become a secondary brains trust of information and knowledge about Braeden. I loved chatting to our regular support workers and hearing them advocating for Braeden as we would. That was the other positive to come out of the situation, the loyalty and dedication of our support staff was even more apparent than usual. They went above and beyond to ensure Braeden had his favourite treats, they picked up extra clothing and medication and drove a lot further than usual to support Braeden. We are truly lucky to have such a great team willing to go that extra mile for our guy.

We were incredibly grateful that respite was able to accommodate Braeden at short notice and to continue to extend his stay as needed. Keeping Braeden safe from Covid and happy was our number one priority and respite staff certainly assisted with this by accommodating our family’s needs. Braeden has been going to the respite house since he was 18 years old for overnight stays and long before that for a holiday day program offered at the house. So, it is a second home of sorts. You can read about the big step it was for us to try respite in the beginning in this blog.

Now we can’t wait to give our guy a big old hug when he gets home. I am sure the reunion will be charged with happiness and excitement for all of us. Our family of four will be complete again.

I’m keen to hear about when you’ve had an experience that’s pushed you to do something out of your usual comfort zone. Did it go well?

Covid interrupted my trip to the US and I shared that experience plus what you need to do if you should be unlucky enough to get Covid while travelling in this blog.

We also shared a blog about Braeden ending up in hospital in this story about when good holidays turn bad. Again, lots of lessons were learnt even on this trip.