Week one ends. Week two starts tomorrow and I hope some of the unexpected and disappointing things from week one are now OVER.
- carers who didn't show; who showed up wearing thongs!!; who failed to provide basic care needs for M; who made more mess than I could cope with; who had some interesting ideas about 'just' sitting in the lounge for two hours between 10 and 12 pm, to wait for the midnight shift (when I said I didn't think this was sustainable for privacy reasons, the response was 'but I am praying for M to get up and walk'. I don't argue with the intent but it doesn't really resolve the privacy issue!)..
- endless meetings. Twice we've had 11am appts which have run for 3 hours, effectively cutting us off from lunch and M's important siesta. The first time we were caught unawares, the second we were gathering important info about how to deal with the shortcomings of the care agency and felt we needed to go on. But we've now decided to limit all meetings (in the flat I mean) to two hours maximum. For my brain to have a chance of keeping up if for no other reason! It's very hard to keep to a routine. Even tho M's schedule of carers and meds and lectures etc is set in stone, having time to NOT do things is proving very difficult.
- too much WASHING. We have a problem in that the bathroom floor doesn't adequately drain, so M's shower process inevitably leads to wet towel explosions. The best carers have already worked out ways to reduce this load; the most gormless carer turned up in muddy sneakers and left footprints all over the carpet. I have apologised to the waterways of the world this week, for my constant washing machine use. Next I will be apologising to the electricity manufacturers for my almost equally constant use of the dryer. Yes I line dry, but that doesn't work when it's wet and muggy. And when you have 15 towels a day to wash and dry!
- the usual complaint, not enough sleep. I find I need time after M crashes, to sort of lie about and process things. Process meaning NOT think thru, write lists, examine info, make calls, write emails, get angry/frustrated, but simply lie about reading or playing a dumb game or staring into the distance a bit. The meetings are so important I find the mental energy I put into them costs more than I expect. I'm kind of surprised about this; I just spend two years doing exactly that! But somehow, being home makes it harder because now we don't have the support of the hospital system to back us up. Hence meetings, of course, with all the ppl who are helping us. That's a circle!
- air conditioning.
- a day at home home yesterday, when we collected more stuff to home-ify the flat and grovel to Mrs Puss. She accepted our apologies and went so far as to let M pat her (she's still very wary of the wheelchair 'car'); sit on my lap AND jump on my head when I lay down for a bit. She enjoyed all the helpers going in and out of the house, plenty of legs to ambush and poses to pose purrfectly for their envious consideration.
- finally, a bookcase in the flat. THAT'S more like it.
- amazing feats of dinner-cooking by my mum, who is going for a gold star AND a koala stamp in keeping us fed and happy. I haven't made friends with the kitchen yet so this is especially fabulous!
- the carers who are thorough, careful, friendly, considerate and neat.
- M's energy level. Day two of his new life, he charged off to his first post-grad lecture of his next semester of studies. Leaving me somewhat befuddled, what am I for? Meh, I defaulted to the washing.
- I have lashed out and I now have three perfumes in the flat, along with two lovely bottles of body oil. Maybe next trip home I'll get more. The house seems to be full of completely unnecessary stuff! I looked at it all yesterday and felt disengaged; tired; ashamed of all the money spent on THINGS. I've felt like this, on and off, since we returned from Sydney nearly a year ago. Unfortunately I can't simply heave it all out, it's not all mine. I refuse to think about packing it all up for the house mods (I'll do another post about that soon).
- airconditioning. Ghastly muggy summer. HATE it.
Right, next lot of carers due shortly and here's me sitting on the couch. Tsk tsk!!
5 hours ago