Hitting the wall (take THAT!!)..

Rotten day today.

HOURS on the phone wrangling case manager, care agency, gp, and the future of the Western World As We Know It... felt like it anyway.  We have a problem with a carer who won't take no for an answer.

As in, NO you can't sit in our living room (one of our four rooms) for two hours from 10pm, in between shifts.  Ever heard of privacy?

NO you can't demand I change my mind by saying that while you are sitting there you are praying that god will help M get up and walk again.  I don't DO theology and especially not at that hour, in me nightie.

NO you also can't tell me it's a problem for you because you have to drive 'all the way to Gunghalin and back' in between shifts.  All the way??!!

NO it is also not my problem that you therefore use petrol and as you are a student you feel worried about money.  This is your JOB, isn't it??  IE, didn't you agree to take money for what you do?  Didn't you discuss these issues with your employer?

NO I won't intervene for you with the care agency to discuss a possible problem with rosters/shift times/what you think you were told by text.

NO it is not ok for you to be angry with me, the agency staff on the phone, or M.  Nor is it okay for you to pout and talk (again) about your problems.  I am not your charity!!

and

NO I don't bloody want anyone else to have to talk to, notice, acknowledge, consider or even ignore.  I wrangle, advocate, work, pester, push, pacify, organise, discuss, note, assess and ignore Major Issues all day.  At night I'd prefer I be left alone with my honey, my fan (and damn this endless humid weather), and my bucket of icy limoncello.

All of this would be so much easier if I was being badly treated by a cat.

SOB.

.. (YES, I discussed all this with the care agency.  And YES, I can 'sack' him if necessary.)

UPDATE: In spite of its originally fairly dire predictions, the care agency has replaced this difficult carer with others.  We still have a couple of shifts to go, but I'm clear that he has to be 'sacked' from us and that we are not asking for something unusual or problematic.  It's a pity we couldn't work it out.  Another Lesson Learned.

Things to ponder..

Week one ends.  Week two starts tomorrow and I hope some of the unexpected and disappointing things from week one are now OVER.

A sample:
- 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!

Good Things:
- 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).

and

- airconditioning.  Ghastly muggy summer.  HATE it.

Right, next lot of carers due shortly and here's me sitting on the couch.  Tsk tsk!!

Utilising insomnia; a test photo..

Now that's very tidy.

Witty, concise and heartfelt.

WHUT??

Today, that is yesterday, that being Friday, I stumbled through the day. Exhausted, sore, cranky and bewildered. Mostly bewildered. I posted the car and watered the golliwog. Dealt graciously with the unexpected cleaner who turned up (by immediately utilising this miracle, no hesitation!). Cancelled lunch BEFORE 8pm. Remembered to write down at least three important things, and even spoke rationally to someone asking me something vital. Which I have now forgotten, oh dear...

And ACHED to be able to lie down and go to sleep. All day.

So WHY am I awake now, unable to shut me eyes and get the rest I need? Can't be the decaf I had 7 hours ago.. can't be my wildly uncontrollably high energy level.. can't be worry (I'm all out of that) or lostness or even a half-decent list of things I need to write down.

It must be the lack of cat. Clearly I am unable to go to sleep without a half-broken ankle squished under a no-longer-so-very-small little cat. The same wee puss who enjoys taking a running jump onto my chest at 5.30am when she fancies brekkie.

Or the world has turned upside down and I didn't notice. Quite likely.

But..

NOT FAIR.

You never told me THAT

.. this new life means talking, talking talking.. and not for fun. Double-checking, fixing, arguing, explaining, misunderstanding, understanding only too well ... advocating, shouting, speechlessly-goldfish-mouthing, trying, failing and sometimes getting the point across..

.. M would need me so badly or leave me so easily!

.. I'd be moving out of my house against my will, fixing up a teeny flat against my will, and LOVING the reason why .. and discovering that you can replicate many things in your temporary second home, but not your favourite mug, your pillow or your cat..

.. I could manage with only two perfumes in the stash (today) ..

.. I'd dream of being bored..

.. I could travel so far without moving; learn so much without trying, or do so many things I can't do ..

.. having friends is one of the most undervalued, underestimated, crucial and crazy blessings to not even know you deserve..

.. catching up with schoolmates I barely remember, 35 years on, could be so much fun..

.. I'd write like this without blushing.

[Day four and except for bits dropping off the wheelchair; moments of terror and FAR too many towels to wash, all is well.]

A Miracle on Home Street!

M was discharged from hospital on Monday, 20th February 2012. Two years and one month exactly to the day since The Accident.

Life as a couple can resume. Purrfumed and purrfect, as always!