Working, not caring & Direct Payments 2

I have just got back from 2 days in Belgium. The flight cost more or less £250 return - not too bad, and hotels, probably another £ 180 ish including breakfast. When I am away, my working day is a lot easier than at home - I start around 8-9 am and finish typically about 10.30 pm after dinner. The idea is to somehow keep a professional hand in, so that when I am "free" (euphemism for when Mum dies), I can "go back to work" (is that hysterical laughter I hear from fellow carers?) about the time that everyone my age is retiring. And like most other carers I've ever met, I have a growing mountain of debt that must be paid off somehow.

And this is how it works: in order to work for 2 days, I have to pay for a live-in carer for 2 days and the cost is around £200-300. It's not money that I begrudge at all. Our live-in carer is truly an Honorary Sunbeam - she is lovely and caring and Mum is happy with her. No longer, the dreaded call ("that call" says Mr Man's wife) when I am 1000 miles distant, 4 different time zones away, and in a meeting - "Mum has disappeared: is she with you?" ...Our Honorary Sunbeam copes perfectly and with a smile that is genuine.

I will invoice my longstanding and longsuffering colleague for some of my time plus costs. And since costs - the hotel and airfare - are way over the £85?/week stipend I am "allowed" to earn as a carer, I'm disqualified from the £45 ish weekly Carer's Allowance. Since I am far from being up to speed in my field - no time to read the papers I should, or to talk to my network of contacts - I feel I can only charge a discounted per diem rate. So for two days of work, I shall either be out of pocket or perhaps a meagre £30 the richer!

Meantime, there has been a reply to my questions about Direct Payments from the Home Care advisory. They remind me that although I must have an approved plan in place, we haven't yet been given the go-ahead for Direct Payments (they are to conduct another review of Mum's care needs! How can you need more than 24/7? Or perhaps we need less?), so therefore I should hold off for a while. That makes sense of a kind. But I was asked to come up with a plan in June. I did and here we are - 6 months later, no further on at all. How difficult is it, for Home Care to decide? I wonder in completely bad taste whether to start a Sweepstake: what will happen sooner - Mum's death or Home Care deciding to help? Galling - when we are all actually its employers!

Apparently the tentative £400/week is the biggest award ever proposed for Direct Payments. Maybe the only sensible question to ask Home Care is simply, how to put in 24/7 care on a budget of £400 plus a pension when their contribution is pegged at £12/hour - or 33/34 hours? Have they discovered true gold? Funny money with stretchy properties?!

And yes, we have to ask HMRC about the registration of self-employed carers. It isn't so straightforward say Home Care. But it's the responsibility of the carers to register, so ...what? If we can't register, we can't use Direct Payments, even if we get the award?

We once got "that call" on about Day 2 of one of our rare family holidays. I was in Tunisia and about to leave for the Sahara with the boys when a Home Care carer (who didn't know mum)phoned me to ask if she was with me! Mum was a lot better than she is now, but even so, I had forewarned the office that I would be away and asked for the same team of carers to visit because I wouldn't be there to help for a week or so. I even sent reminders because I know that scheduling is a pretty tough job to do, and most of us are willing to do what we can to help. Luckily, the manager couldn't be contacted and it was one of the old carers who found Mum and took her back home. Using plain old commonsense, she got it sorted.

Since then, we have taken to locking the door. Completely politically incorrect and there are howls of protest from social services. But it doesn't distress Mum and it keeps her safe. The fire risk is nil because she hated cooking even when I was a child. Which is better? To offend political sensibilities - or to ensure that Mum doesn't wander out without coat on a cold and dark winter's night?

Who cares more? Home Care who are off-duty shortly after 5 - or those of us who are never off-duty?