Two Steps Forward

It's been something of a month!

We knew it was coming, but in late march the Continuing Health Care team came to call. We've benefitted from CHC funding from the moment Diane first left hospital in 2021 and this was essential in meeting her care costs. Having returned home last August a care package was organised with three visits a day. This fairly quickly reduced to two - cutting out the lunchtime attendance - and latterly just the morning call, to get her up, washed, dressed and settled for the day.

Just like an exam we had a 'mock' assessment with the social worker and then the test proper. The good news was that Diane's continuing improvements meant we no longer ticked all the boxes. The bad news was.... we didn't tick all the boxes. Although the final decision rested with The Panel, it was a foregone conclusion and CHC funding was withdrawn. Diane's future care was therefore significantly downgraded - to yours truly.

For reasons I've outlined in previous blogs, Diane's level of care remains substantial. Her mobility is restricted in many ways and stamina levels are such that we have to carefully co-ordinate her daily activities to ensure she doesn't overdo it. Not easy with her default position being 'dogged determination' in every respect.

Part of Diane's weekly physio process is designed to enable her to transition from the medical bed and air mattress that has long supported her. We wanted to try out a foam pressure relief mattress and one was duly delivered. Even though this was just a try-out, the air mattress was taken away. I should have guessed. Diane managed two very uncomfortable nights before she yelled for the air mattress back. Her system had become so used to its' support that it was going to take some time to revert to a 'normal' mattress. In hospital she'd been susceptible to pressure sores whenever a standard mattress was provided and the last thing we needed was to go back down that rabbit hole, just as things were improving.

In requesting a swap back you would have thought we'd asked for the moon. Recovering the air mattress involved much discussion with rather fractious district nurses, a visit and assessment by an occupational therapist and another in a continuing series of reports. Thankfully, a week or so later and the air mattress was back. Lesson learned. Don't assume that a simple attempt to make progress in recovery is not going to be beset with unexpected 'got-ya's'.

Early in April I turned 68 and as a birthday present I received a personal assessment by our Social Worker directed toward my wellbeing and future needs. Oh how we laughed. I'm not going to bore you with the details, suffice to say there was nothing she could suggest that provided any support or help for me whatsoever. Not her fault at all. There really is no adequate or practical support for carers. Apparently I will be contacted in the fullness of time by someone who will explain personal care credits. These might allow me to facilitate some respite care. Perhaps funding someone to be with Diane while I take a break. It's never going to happen; and I say this not out of any masochistic or self pitying, attention seeking, desire. It's just wholly impractical. Because Diane still needs a great deal of support, any care will need to be medical/professional and for anything other than a few hours off, residential too. Asking a friend (or the kids) to sit in and provide very 'personal care' on a not infrequent basis throughout the day really isn't on. I can still grab the odd hour to myself when the physio is here (once or twice a week), but I cannot be away from home for longer than that. Just time to pop to the supermarket, or the chemist at the drop in centre. And the mere thought of having a debate about returning Diane temporarily to a care home while I 'swan off' somewhere for a rest puts my blood pressure into the danger zone let alone Diane's. I already know what the response will be. Anyway, I had a week off three years ago when Diane was stable in hospital after her Op, but didn't know me, or her circumstances. That will just have to do for now.

So. Best foot forward.