Friday, 30 October 2015

More Waiting. No Driving.

Castle Drogo..

Chedworth Roman Villa...


Lyme Regis.....

Random photos from the last few weeks....

The driving assessor from Devon county council is also an international rally navigator which means  he sits next to the racing driver and tells him where to go. He says it's probably safer than sitting next to a normal driver on any of our normal roads.
I sit in the back of the car while he observes Robin as he drives the country roads around us for an hour. The roads are wet, slippery, strewn with autumn leaves. Afterwards he fills out the forms and tells us what he thinks. The car starts to steam up so I wind down the window.

He says it was  a safe drive, a bit fast sometimes, and his main concern is Robin's steering due to his dodgy right arm and a tendency to veer to the left which could mean near misses, or scrapes or something worse on that nearside. He recommends a driving ball for the steering wheel which you can get from a disability equipment shop and another assessment in 6 months. But he'll send the report to the doctor and we need to wait for her verdict. Also we need to wait for a proper diagnosis after the MRI to find out the cause of Robin's arm weakness.

More waiting. No driving for now.

Last blog for a while.  Heading for the sun in Portugal. Back in November.


Thursday, 29 October 2015

Ringing In The Dark

More sunset pictures from my window tonight - it was actually raining but the light was so soft and magical -  felt like it was coming from a thousand radiant beings.....

I lost my mobile phone for a few panicky minutes this evening. It wasn't in my handbag when we got back from Deeksha. I rang it over and over - no familiar ringtone in reply. I rang the friend whose house we'd just been to first she said, no phone here - then she said yes, another friend had just found it in the street -  ringing in the dark. He kindly brought it round to the house.

 I felt naked, bereft, un-anchored in those minutes even when I knew it was found -  a piece of me  still missing. How did it happen that my life got poured into my phone, that it could so easily be lost...

So two things to do.....

1. Keep a hard copy of my contacts.
2. Buy a new handbag.....if my phone can fall out of it ( because I don't zip it up properly) what else could I lose?

But of course I'd find a way to reach them - all those dear people in my phone - they are my life line, my life raft - my radiant beings....ringing in the dark.

Wednesday, 28 October 2015

A New Sweet Life

This is the second batch of Raw Chocolates I've made this week. I still haven't cracked it but at least the texture is better than the first lot which seized up when I added the maple syrup and  it wouldn't pour  into the moulds.

They are called raw because you use Cacao Butter and Cacao Powder and sweeten them with honey or maple syrup. But as it isn't tempered chocolate you need to keep them in the fridge.
It's wonderfully simple to make  - just melt the butter over a pan of boiling water, add the honey at this stage ( which stops it seizing) and vanilla essence and then gradually whisk in the cacao powder. It really does taste like rich dark chocolate. I added the chopped cranberries and pecan nuts.

A dear friend has given me an even easier, quicker, deeply satisfying chocolate recipe fix for when you absolutely can't wait.
Take a spoonful of coconut oil, add a spoonful of coco powder ( Green and Blacks is good) and a smidgen drizzle of honey or maple syrup and just mix with a spoon till it turns into a dark fragrant paste. You could roll it into balls and put in the fridge to harden up a bit but I don't bother and just eat it with the spoon then and there. Very, very slowly.

 Today I became a great aunty for the fourth time to another beautiful baby girl - second daughter of my beautiful niece who lives in Sardinia.  She is an expert in homemade made chocolates. She inspired me to buy the cacao butter and give them a go. These are the ones she made for us last Christmas....before she knew there would be another new sweet life with us this Christmas.

Tuesday, 27 October 2015

A Next Time

 This morning while Robin is out, driving around in the rain with his lovely, temporary, Age UK enabler,
I lose myself in a big cook-up  - making a fragrant fug in the kitchen. I'm running down the fridge in preparation for going to Portugal on Sunday. So I roast going-off red and yellow tomatoes with garlic and basil, grate old beetroot and carrots for Feta and Walnut burgers, chop yellowing leeks and the end of the celery for a curried hazelnut loaf, blend up a batch of deep grey green toasted pumpkin seed butter and peel the 4 brambly apples ( free for the taking from the owners of the incense and crystal shop where we were on Friday) for a sweet orange zested apple crumble for the freezer.

When I'm cooking my same old recipes I don't have to think or worry - my hands take the strain.

 After a late lunch this afternoon we walk to the allotment under growling zinc black skies. I cut the slender feathery filigree stems from the asparagus plants and make a rather feeble attempt to fork  under the dense mat of roots to dig one up. Decide to leave it till tomorrow when our gardener is coming to help.

 I ask Robin to pull up the old canes staking the dry sticks of broad beans that never produced any beans this summer. It seems too much for him -  says he can't get them out. He wanders through the long wet grass between the collapsing raised beds, scattered with the gold and red leaves of the rust tree. He points to the lavender bushes, the moth-eaten remains of the kale and the shrivelled red currants hanging like long earrings on bare sticks.

He says, 
 We can eat all those.
I say,
  Yes, we'll get them next time.

But I'm not sure there will be a next time. 

Monday, 26 October 2015

Not Stomaching It

At Saltram House,

near Plymouth

on Saturday


Today in a very windy Sidmouth after

lovely healing session

with our intuitive EFT counsellor 

who never gives up on a miracle for Robin.

We had lunch in our favourite cafe afterwards - The Clocktower  - at the top of Jacob's ladder. I couldn't finish mine....felt nauseous and threw up in the ladies. The waitress said it couldn't have been the fresh mackerel fillets  -  they wouldn't  make you sick that quickly.

 Haven't been myself since.......I don't feel ill... just can't stomach the thought of doing the rest of my life ....I usually make myself do it even when I don't want to - push through ....but not tonight.

 I'm also mourning the lost hour.....the dark afternoon....the light slipping away. 

And at a loss how to help Robin who is raging at his voices which won't leave him alone.....his left hand shaking as he lifts his teacup to his lips.

Friday, 23 October 2015

Everything Is Here To Help Me

The consultant neurologist is tower tall, gangly - I'm put off by his preemptory manner at first but then instantly reassured by his soft South African accent. He says all the right things -  like Robin having an MRI scan of his neck and head and that's what he should have had in the first place and he lists the tests he needs - an ECG, bloods, nerve tracking, breathing, swallowing.

 He looks long and hard at Robin's arms and legs, stokes the top of his hands gently, taps his reflexes with a long rubber hammer. He talks directly to Robin about finding out the cause of his muscle weakness and why the motor neurones aren't firing and what the tests are for.

Robin looks blank, then looks at me, then looks at the consultant and says, 

Tell her majesty, I don't know what you're talking about.

The consultant says,

Does she mind being called that?

I say,

Yes I do, but it doesn't stop him.

And we all laugh. 

 I ask if there's any connection with Robin's dementia and he says yes, there may be....there is new research to indicate this kind of thing can be related to brain disease. He says it may take 2 weeks to get an appointment for an MRI but he'll treat it as a matter of urgency.

I don't know what it all means....don't know why I'm crying....just had enough of this day.....but vaguely remembering that everything is here to help me... however well disguised....

Thursday, 22 October 2015

My Plan/God's Plan

The sun tonight outside my window..



going ......


No idea what to write tonight......preoccupied with thoughts about Robin's appointment with the neurologist at the hospital tomorrow about his right shoulder, arm and hand. I've noticed a slight weakness in his left arm now and the same muscle twitching in both arms.

I've noticed I'm comfort eating as well - distracting myself with potato crisps and Japanese rice crackers - no chocolate in the house - nothing to do with being hungry.

 This afternoon I did plant big pots of alliums, tulips and daffodils till I ran out of compost.....decided it's OK to only get one thing done in a day's OK to feel rubbish and not try and work out why.....and trust everything is evolving exactly as it should - just that my plan and God's plan don't match. But He probably knows more about the big picture than I do.... 

Wednesday, 21 October 2015

Their Love Shining Out

It's been raining on and off all day, a fine misty drizzle which keeps me indoors.

Robin goes off with his walking group, which doesn't really walk anywhere, but he asks to come home early.

Most of the day I've been trawling through the sunlit pages of our photo albums from the last 15 years or so - looking for specific people and places. I'm making a photo book for Robin - collecting together in one place all our family and friends, all the people he knows or used to know and writing their names and  little stories and associations beside them to help fix them in his mind. To anchor his shifting, fading world with pictures and words.....and even if he doesn't recognise them  I feel sure he can feel their love shining out of the pages. I can anyway.

Tuesday, 20 October 2015

Another Autumn Dusk

Sunday afternoon -  a short wander in the gardens of the National Trust's Knights Hayes Court after my second tuna baked potato lunch of the weekend.....I was amazed to find a poppy still in flower in October.....and actually so much is still blooming in this glorious Indian summer.

It was such a beautiful day today I took Robin with me to my dental appointment  in Ottery St Mary so we could go somewhere afterwards - I was hoping for a walk but knew it might just be coffee and a cake. We ended up on the coast at Branscombe  and I compromised -  tea and muffins with a wonderful view  - the long sweep of the bay in brilliant sunshine, and a short stroll along the pebbly path above the sea till it petered out at the beach.

I didn't have my camera with me but I always associate Branscombe now with this Christmas Day late afternoon  in  2012 - the first one without my father.

This afternoon, 20th October 2015,  in the sitting room with Robin asleep above us, our lovely Community Psychiatric nurse listens to me and all my anxieties while I cry a little and sniff a lot.... overwhelmed by her kindness and truth telling.

She says I don't have to try and be a saint..... and berate myself because I shouted NO at Robin on Sunday .....and that I'm not responsible for his happiness.....only mine. It's just that I forgot not to go zooming into the future of what ifs .....if he can't use his right arm at all then I'll have to do more than just cut his toenails and get his wallet out of his pocket and unscrew the top of the fizzy water bottle...

But we're not there yet. So this evening instead of planting the spring bulbs we drive to Killerton House and meander through the rooted majesty of giant trees getting ready to release their leaves into another autumn dusk......reminding me to keep hold of his hand....and keep the other one on my heart.