20 Jun 2012

case conference


looks like case conf went well. the helper who went came yesterday afternoon and was bursting with something she wasnt allowed to tell us. finally feel free to take a bit more pain relief even tho it leaves me groggy. even if the case conf comes up with nothing at least all the different parties know that someone is taking an interest so i hope wont be able to get away with doing any old thing in the future. hope.... 
 
social worker coming wednesday to tell us about it. 
 
feeling pretty burnt out now.

17 Jun 2012

Washers and memory.



Well, here's my attempt at button hole wheel stitch for this week's Take A Stitch Tuesday. Am so enjoying embroidering. Far more fun than cross stitch. This is my ostrich activity - I so need to not think about things. These are called "I dropped the box of washers" in honour of the lady who runs the challenge who has a long running series of posts on her crazy quilt project "I dropped the button box". Very annoying that AFTER I take the photos I notice mistakes, however carefully I think I looked it over beforehand. I had a look at some of the other offerings, nearly all are flowers. At least I've tried something new. I'm blessed with the mental obligation to have to do something original. It comes from Mum. When we had to think of ideas for English essays she made us think outside the box.

Lovely to be able to sit on the balcony more now I've fixed the blinds. Must make myself go and do it.... tho when I'm twitchy the computer at least distracts me so I don't go trying to do things.

"Where have I put my meds ? Maybe they're where I lost them last time ..."

This morning's crisis to get up to was J having a rather dramatic nose bleed. She copes with them herself mainly now, but I needed to change her bed. Had to deal with R's bed yesterday 'cos of dropped cherries on it and it was another red stain last week on another of her new sheets last week - that one was wine vinegar.

Yesterday's morning crisis was them finding a potter wasp in the living room curtain. They were used to them in the past but it seems to have come adrift in the memory loss. The long ovipositor can look like a sting if you don't know what it is. They must be feeling a bit fragile cos often insects don't bother them. J is inclined to kill them with spraying perfume on, then put them in her microscope. Mind you a few years ago she scared herself silly   - this harmless minute armadillo like thing turned out to look quite fearsome and heavily armed close to and she'd found several under her bed. :-) R took some video this week on her windowsill of a tiny red spider wrapping up  a big flying ant. It then leaped on the ant's head and killed it. Gruesome.

I taught another helper how to make gravy yesterday. She put a huge amount of flour in. Better luck next time. It was her first ever attempt at this particular culinary delicacy.




This is the calendar in the toilet. (recognise it Dad ?) J crosses off the days and we all write in dates as they come up. Yes, nothing much happens, then we have 3 things on the same day. One of them didn't happen and I spent ages waiting. The other two happened both at once. The doctor was here and the delivery man rang, he was lost and I had to talk him here on the phone then take the delivery. When I got back to proceedings I discovered that what the girls had told the Dr was not really right and so he was not writing out the right prescription. He was not too pleased at the idea of having to change it, but when challenged neither of the girls could remember much in the way of what symptoms they've had and what meds they took. He had not realised how much memory loss they have. He's said they've got to keep symptom diaries now. They hate doing that. Partly it's the effort of remembering to do it and partly it's not wanting to even think about it. We work quite hard at not dwelling on it except in the instant that we need to take action to deal with something. They have to live in a very day to day manner. Not too good for planning ahead, but a very good way of dealing with worry. That's why J crosses off the days, to keep track. The seasons help a lot too. They watch what's growing in the neighbours gardens and follow the weather even tho they're not out in it.It's these things that keep us alive, part of the world and a cheerful antidote to the news (which they both follow). J writes too. I'm not sure what she writes but she has several different note books. She sticks things in scrap books too. Ruth has more difficulties with a pen, but she carefully catalogues and dates everything she makes and everything she spends. I love her systems of storage in her room. Every thing is beautifully kept in plastic drawers. She keeps some of her beads in empty spice jars on her desk. Treasure. She found out how to do a search for things that cost less than one euro and free postage so she gets all sorts of bits and bobs that way. It's a clever way of making sure she has post to open too so something to look forward to too. Ruth writes tutorials too. It comes from having taught herself to do things and other people asking her how she did it. Her first one was Webby on her site suppi.net. Some of it is out of date now but there wasn't much else around in terms of web tutorials at the time she made it. Our brains haven't stopped functioning, the process just happens rather slowly. Ruth thinks we shouldn't have lost too much on the hard disc but we don't have enough RAM to process it or to record much new stuff.



14 Jun 2012

"Though much is taken"

Though much is taken, much abides. 
And though we are not now that strength 
Which in old days moved earth and heaven, 
That which we are, we are: 
One equal temper of heroic hearts, 
Made weak by time and fate,
But strong in will, to strive, to seek, 
To find and not to yield.
 
Tennyson.

shelves

just a few white and yellow mustard plants in the roadside with 2 poppies strategically placed, as beautiful as any flower arrangement ive seen anywhere. these little things that lift our hearts and make them beat again. 

agitated. worried about the home helps being withdrawn. joanna prayed with me this morning and i'm more at peace about it.  struggling to rest tho. then my sleep meds didn't kick in last night so ended up having the opposite effect. at least my bedroom now has  a bookshelf (was moving that at around midnight) and looks a bit better. joanna when there are big things we cant control we end up controlling the little things that we can do. feeling a bit lacking the sleep today, but still a bit twitchy. i shall collapse after they've had the case conf on tues. must write out list of the effects of the lack of help in the month of may.

it's hard having the girls poorly again. nothing like as bad as it has been in the past, they can still get around the house a bit. i have to make the conscious effort for their sakes to look beyond the exterior to see the same old person on hte inside who still needs to be reacted to totally normally. if i look sad and worried about them it makes contact with me wearing rather than a blessing, so even tho i still have to be real about things i'm careful to stay as positive as poss. esp with them needing help with baths again. they find it so hard to ask for help in the first place and to lose that bit of independence again i must talk to them as adults not babies, and not make them feel bad on top of everything else. they are so thoughtful they only ask for help when it's desperate. they are such lovely women.


ruth still has difficulties with reading and joanna loves reading alound so when The Week arrives i hear joanna sat on ruth's bed reading it aloud to her. and then ruth googles anything they find interesting to go andlook at the original article. joanna has some interesting prononciations cos some of her english comes from reading. i heard her do the classic "miyzled" for misled  the other day. ruth corrects her. she does very well considering. 


joanna loves her kindle. she's had a couple of weeks when she coulnt use it much but now is reading persuasion. she cant read novels much cos she struggles to remember all the characters, but she has such insight about how humans behave, like ruth too, that when they discuss something they both have watched or ruth has watched and joanna has read, i find it absolutely fascinating. 


they both do sudokus. ruth does it on the computer. joanna has  little machine that ruth bought her with a little screen so she can play lying down. it keeps her brain ticking over when her body is finding it hard to keep up.
red frame : - freshly painted shelves - rather pleased with myself to have done something "normal". made rather a mess. blue - old system for blinds. couldnt use them cos too ripped and they rip more when they wave about in the wind. so now i can sit on the balcony even in the afternoon.  green - new system for blinds - hold down better so can sit out there even when it's sunny in the afternoon. yellow - my shadow - she got paint on her whiskers. purple - apricot tree that grew in the compost.

i pass rather a lot of time here. MP3 player for listening to podcasts and the radio.

"new" bookshelf with "new " yellow shelves. and a pile of clean washing waiting to be put away.

treasures displayed on my curtain. cheer me up when i look up from the computer. can also look out at the view.

13 Jun 2012

starting a/bs

well, will our home help agency survive ? all 3 managers/secretaries are off sick with stress. and doesn't look like any of them will be available to go to our case conference on the 19th either :-(

evening clouds from my bedroom window
we've had rain, but not enough to do any damage. tho it's a nuisance for the orchards as it's harvest for cherries and apricots. had local grown cherries last week - just lovely. and the helper who got them from the shop for us said it's her father in laws farm that grows them. I'm glad that gave us something nice to talk about cos I'm afraid she's a gossip and seems to get some sort of pleasure in saying unpleasant things. don't know why some people have to be like that, it's so unnecessary.

re-start antibiotics today. mosil. really feel this one is doing something. going to be a bit tricky for ruth who will have to change her low blood pressure meds in order to be able to take it. joanna still on cortesone for her breathing for over a month now. i hate seeing them looking pale and wan. we're all enjoying the more fruit and veg season. love summer fruits. struggle to think of what to eat - appetites not too wonderful. at least today's helper is doing lots of pancakes :-)



12 Jun 2012

neighbours kids and balcony





these little poppets are our neighbours downstairs. they came up to see my electric guitar. they put on fancy dress specially for the occasion :-) we had  a lovely time. i feel very privileged that the boy, Ewan talks to me. for a long time he had problems with eye contact - still a bit reticent.  i don't push him, i wait for him to come to me, which he does,  so i feel very privileged to get a smile. while i played my guitar he strummed away on his. i did tune it a bit so it sounds a little bit less horrendous when i hear it through my bedroom floor !
joanna and i sang in canon a bit for them - our party piece, and they were so chuffed to manage frere jaques all together as a round. took me ages to get to sleep after - tired but wired. still, nice to feel rough cos of something nice that we did voluntarily rather than for something grot that happens at us.





these are a few pics of the state of play on the balcony.didnt have a lot of success with the seeds i planted earlier so i finally managed to get in a few more. but one cucumber plant is doing well. :-)  i think seeds probably need more looking after than i can give them rather than just sticking them in and leaving them to do their best.


don't know who's going to be at our case conference on the 19th. neither of our drs can make it. and the home help agency is going through a rough patch. now it's 2 of the home help organisers who are off sick with stress or something similar. changes imposed rigidly, without consultation, pushing anyone good towards the exit door ..... is it just incompetence, or do they really want the association to go to the wall but dont want to take the blame for closing it down ? what one earth is such an important service doing in the hands of a voluntary body anyway ? !!


hope you dont get too irritated reading this. struggling a bit with writing again. glad this has an english spell check, i keep writing in anagrams.   the ideas come out better in writing this diary than attempting to say them or even write them in letters.

and here is my latest little effort - learning knotted cretan stitch no less.


9 Jun 2012

butterfly chain stitch

well here are my efforts at using butterfly chain as a couching stitch. done a couple of weeks ago. too tired to sew this week.

6 Jun 2012

crises

oh dear, i've had to call the land lord to come - i was unblocking the bathroom sink, as i have done so many times before, with a wire coathanger, and i have got it wedged in the plug hole. how awful - but how funny !! he's coming tomorrow. till then we have a blocked sink and a big piece of wire sticking up out of it - looks vaguely ridiculous.

caught up on some of the jubilee concert on you tube. sir cliff sounded a bit rough, but he can still run rings round his contemporaries. i love the song congratulations - we used to sing a version of it with the cssm on cromer beach. very happy memories.

the french press were impressed the day before that we were determined to party despite the rain.

today i've started the day with 2 crises before breakfast. tommy had diarrhée twice on the balcony. and joanna woke up more tired than when she went to bed and with extreemely sore skin and needed help with her bath. and have had to send the prescriptions back to the pharmacy cos they missed off a couple of items. all in a days' work ..... so i'm blobbing here a bit before dealing with more photocopies and paperwork. i calculated we've spent well over £500 in the last decade on photocopies and printouts for our dossiers. 


had an avocado pear with my breakfast. delicious. there is something in avocados that seems to be dialling my number this year. could be in the oil or a vitamin. ruth has the same with mussels. i'm sure they've got something good in them.


it's midday on the first wednesday of the month when they set off the sirens. so tommy is standing on the balcony doing his wolf ancestry howling bit. rather virile, but doesnt quite fit with his fluffy old man image. 

endives wrapped in ham in white sauce for lunch. and enough left over to heat up another day cos not something the girls can eat. our wednesday lady makes us a huge pile of pancakes. the rest of the pile sits in the fridge and they make a healthier snack than shop biscuits. making pancakes soothes our helper when she is having a grumpy day. she used to work in a cafe making crêpes and liked it and we sometimes hear her humming.





jewelery holder joanna made with old left over bits of barbies :-)




4 Jun 2012

lovely girls

aren't they georgous. havent changed much at all really :-)