There was a time when, hopelessly green and desperate to get SA out of hospital and home for good, that we accepted the little bit of help that we had been told we qualified for from the District Nurses and took the rest on ourselves, just until we could nail down something more permanent.
I soon found out that making sure that a newly injured tetraplegic is comfortable, healthy and happy is mostly a full-time job and it’s a hard one, especially when it’s your SA. It’s a job that both he and I agreed very early on, for so many reasons needed to be taken on by someone who was not me.
But care is expensive. Decent care is astronomical. The predicament we were in, (which was not a wholly unique one), was that we did not have the finances available to fund what we needed, entirely ourselves. We also had very little experience of the system(s) that are there to help and received some poor advice at the outset.
Actually that’s how SA would put it because he’s more forgiving than me. I would say without hesitation that a few people who really shouldn’t have, royally f*cked up.
I would like to reassure anyone who is approaching or already dealing with the minefield that is care funding that our experience isn’t the norm. It was combination of bad luck, bad timing and SA gangster trippin’ on meds the day they were handing out advice.
So over the course of just over a year I first asked politely, then asked politely again, then asked less politely and then downright clawed and hissed at the people with the goods. By that point both SA and I had developed a firm conviction that he would be better off under the watchful eye of Kathy Bates than me.
We eventually, having endured various appeals and all but burnt out the subject of Autonomic Dysreflexia secured SA a PA. That is a personal assistant who is at his beckon call over 24 hours for anything he may want or need (except for that, pervert).
It took us a while to get to a point where we had a few PA’s that fit really well into our familial niche that could work on rotation, but to begin with we had quite a few to try out.
We were slightly unlucky in that the agency we selected had a high turnover of staff for a bit, so there were PA’s that we liked early on which we weren’t able to get back because they had returned to their homes overseas. Well that was what the agency told us anyway, for all I know they are happily working elsewhere in the UK for a family with a more pleasant wife and gentler natured kids, The Addams Family for example.
Having new people all the time came with its challenges. I did on many occasions marvel at SA displaying the patience of Sainty McSaintface as he explains/describes the same thing over and again to the new girl. Two weeks after telling and showing someone where everything is, how everything works, which bin the teabags go in, how to make a decent cup of tea/gin and tonic, he has to do the same to someone new. On top of this he has me bitching about the spoons being put in the fork drawer and the fabric conditioner compartment being clogged up with detergent (seriously though, is it THAT confusing?!?)
I don’t want to be the bitch wife from hell (I know right, too late?) Or the control freak who issues a list of instructions on how everything is done but for both our sakes, I have been tempted to think that it’s the way forward. To avoid SA repeating himself and to be sure that I can easily locate the sieve in an emergency.
Photo: ‘Annie Wilkes’ digital illustration by Hersson Piratoba