Another seven months has passed. How time flies?? Greetings now the Welsh Covid firebreak has ended, but which segued into the beginning of the second English lockdown, which is overlapping with the Scottish tier system. Jeez. And a week or so since we all started exhaling after the news that Trump is leaving the White House.

Callum is still at Frenchay in Bristol but the fabulous news is that before Christmas, he will be back in Hay- well, two miles outside, near Llanigon. I know these glad tidings are already spreading locally, as I haven’t been able to contain myself, but not all his friends are close to hand, by a long chalk, so this will come as long awaited and the best of news to everyone. He is SO excited, as are all of us who love him.

It has been a tough time, as you might imagine. For the first three to four months of lockdown, which coincided with his return to Frenchay at the end of March, there was no visiting whatsoever, and contact was limited to FaceTiming (thank GOD for FaceTime). Fortunately, Frenchay were able to co-opt a group of furloughed workers, to spend time creatively with patients while there could be no face to face contact with loved ones. In this group were several very positive and funny hairdressers, who used to fight to hang out with Callum, and which eased his days enormously. He also got several great haircuts, ha ha.

Covid staff shortages also resulted in no formal therapy. Even as the situation eased, he still got none as he was now regarded as one of the ‘walking wounded’ rather than in any way critical, so what therapy was available was triaged, and not in Cal’s direction (I put this in the positive spin category, given where Callum was when he arrived at Frenchay two years ago, and how massively grateful I was at that point for their assiduous and skilled attentions. He no longer needs these attentions to the same extent, so it was great that others were benefitting during lockdown). This meant that there was little structure to his day apart from mealtimes, and no punctuation points during which he was being stretched physically or cognitively, except informally or incidentally, mostly with the aforementioned hairdressers.

Nonetheless, when his old time physio and OT did an assessment with him in the late summer, they found that not only had he not forgotten hard won gains, such as going up and down stairs, he had progressed in just about all areas without their expertise. Which was kind of amazing, and very heartening.

When visiting resumed, it was for just an hour, outside, once a week, with both Cal and I in PPE and socially distanced. Weird and initially quite upsetting. I found that I’d take up half an hour in talking crap and then spend the remaining 30 minutes checking the time and trying to make the contact meaningful/fun/informative or at least one of those things. The quality of the visit was also dependent on how fatigued or alert Callum was on that particular day. Such things hadn’t mattered when I was based in Bristol for half the week, but driving three hours for a single unsatisfactory hour was of a different order. Yet another lesson in letting go, as if I needed it. At least by then Callum did understand why things had to be like that. The hardest thing of all, as others have found, was not being able to touch, hold hands, or hug- we are both individuals who are capable of hugging lampposts if nothing better is available. Latterly things loosened to a two hour visit in his room, and more visits per week, which was a huge relief. But now we are back to square one, with no visits at all until the beginning of December, and FaceTiming again.

But fear not, dear readers: we made good use of the lockdown, especially as restrictions eased. I was determined, after the Ledbury experience, that when the time came for Cal to move from Frenchay, that it would be back to Hay, with appropriate support, not another placement. That view was wholly supported by Frenchay staff and by Powys Health, who are overseeing and coordinating his transfer, and confirmed at another assessment meeting at Frenchay in September.

I needed to find a two bedroomed place: Callum is still at risk from seizures even though he has not, as far as we know, had a seizure since January (pause to punch the air, though with the caveat that there may have been sub clinical seizures that went unobserved), so he will need someone on site overnight, as well as through the day, to support him and keep moving forward with his rehab. And to stop him grabbing car keys and trying to drive into town (see previous post). Finding such a rental property is challenging for anyone who knows Hay. But word of mouth and local networks bore fruit (pause for shout out to fab Fi Howard) and a perfect house has been found. It is being made ready as I write. A care agency has been identified (another shout out, this time to the wondrous Julie W, who has been tireless in her efforts to support Callum’s return to community) and all being well, agency staff will shadow Frenchay staff in late November, Covid restrictions permitting, with a view to Callum’s move back to Hay following on swiftly afterwards.

Our boy is getting impatient, which is positive, I hope we will all agree, as it demonstrates an awareness of both the situation and of the timescales involved, in a way that we could only have dreamed of even a few months ago. Astoundingly, his language, in its breadth and nuance, is also improving incrementally. He still suffers from expressive aphasia as in…

’What is the first thing you want to do when you come home, Cal? First thought’.

‘I want to go to the prison’.

‘Doubt that is what you mean, Cal, as that is where we send lawbreakers. Pub, perhaps?’

‘Yeah, that’s it, I want to go to the pub’.

Fatigue will continue to be a huge factor for him, requiring daily rests, especially in that initial period when he returns. It will be a massive adjustment for him from having his every need attended to, to being encouraged to do more and more for himself; this will cost him cognitively. He won’t have hard pressed nurses taking shortcuts and doing stuff for him any more, but a PA who will have all the time it will take. He will also have become somewhat institutionalised, though given that he can remember nothing of the first year or more after the accident and can still struggle to remember the names of some of the long suffering nursing staff who love him to bits, the relevance of that last comment is perhaps moot. Whatever. Can’t wait.

When we have a date for his return, we will let everyone know. We will also consult with both Frenchay and Powys about a safe visiting regime, and make everyone aware of it. He will of course be in the category of ‘most vulnerable’ and will need safeguarding in the short and medium term. But please be assured that we know how much he wants to see everyone, and how keenly that is reciprocated.

The house he’s moving into is unfurnished so we’ll be looking to get it kitted out in the next few weeks. We will make a list of things we need and circulate it, probably here, in the next couple of weeks. If you know of items that are going spare, please keep him in mind and get in touch. Fortunately, we still have some money left over from the amazing fund raising event of two summers ago, carefully stashed away – Callum having been in the care of the NHS all this time meant that there were fewer calls on cash than would otherwise have been the case. So now we will use the rest to supplement whatever he needs to finish the house, and perhaps to begin to provide some therapies for him, once Covid restrictions lift, as we already know that Powys will not be able to offer much in the way of physio and so on due to lack of funding.

Thank all of you from the bottom of my heart for the steadfast support you have given Callum, me and our family, over these three years, whether by text, in person, prayer or thought. What a journey, eh? And ‘Still he rises’, as Maya Angelou said. Callum the Indestructible indeed. I still can’t walk through Hay without being asked how things are going, and I appreciate each and every one of you in those exchanges, and the community we are all part of.

More soon.

Keep well, safe and grounded in the meantime.

Sue x