Over the last 18 months I've been 'keeping the financial wolf from the door' by building up a small practice of private pupils. Almost everyone has come to me through word of mouth, so they know the bigger picture of Mum's HD and the potential pressures it can put on my life. It's taken a while to get used to starting work at 4.30 and finishing between 6.00 and 7.00 - depending on the day - however I really enjoy the chance to teach without the politics of working in a large institution. On the whole, it's working well. People respect me and give me plenty of notice if sessions have to be missed. Generally we can re-schedule sessions within the week so I have a pretty steady income.
The only family who consistently messed me around - arriving extremely late and cancelling sessions at very little notice - happened to take up the 5.00 until 6.00 slot on Mondays. Now this happens to be a 'pinch point' in Mum's care. It all came to a head just before Christmas when the family simply failed to show up entirely. I'd come home to wait for the them and. as a consequence, my Mum had to spend an extra two hours in an upstairs room with a cup of tea and a sandwich. I was livid (largely on my Mum's behalf) and texted the family asking for payment. They refused to pay and the father sent me an extremely rude text back. The upshot of all of this is that I contacted them in the new year and explained that I was no longer in a position to teach the girls.
Yesterday was the first new look Monday... I had a quiet day at home, practising for a concert on Sunday, trying to bring some order to our chaotic guest bedroom and doing the washing. Then I went round to my parents at 4.00 to make Mum's dinner, while my Dad got ready to go out. I sat with Mum while she had her meal, made her a hot drink and made sure that she had everything she needed until Dad got home. At 6.00 I popped home to teach a lovely pupil who comes for a harp lesson from 6.15 until 7.00. It all worked out brilliantly.
Today I'm spending the afternoon with my parents. People with HD have such erratic movements that they struggle terribly with going up stairs. A standard stair lift would be quite dangerous for them so the HD association recommends the installation of a proper lift. My parents have been thinking this over for some time. It's obviously an expensive solution but it will keep Mum at home for a lot longer, so it's going to be money worth spending. They've identified a section of the utility room, which goes up into the little bedroom/office, which they think would be a good site for the lift. This afternoon we're going to a mobility specialist in Malvern to get the whole project going. I'm 'riding shotgun' because my Dad is really hard of hearing and he doesn't want to misunderstand what's said!
Between times I'm still practising, trying to complete the guest room tidy up, ironing and teaching from 5.00 until 7.00. As I texted to my friend earlier today.. "So much better than work!"