A Slow Electric Loss

The sun slowly sinking over the A303 in Somerset on Sunday night on the way back from Montacute House.

In the kitchen most of today making coconut flapjacks, and sesame cheese biscuits, stuffing dates with walnuts, dipping them in chocolate....... and the unusual fragrance of a rich minced beef ragu emanating from the oven. All the while talking to our lovely heating engineer who is servicing the boiler. He makes his own flapjacks and we talk healthy eating and Hugh's programme about waste - the shocking truth of our throw away world.

Later I sit next to Robin on the bed after he wakes up.....  after his happy day out with two different friends. I massage his swollen hand and feel the tremor up and down his arm.......feel the truth of it reverberating round my heart..... the sinking away of him ..... a slow electric loss.

Last blog for a while. It'll be December when I'm back.... counting down to Christmas.

No Certainty No Comfort

 Sunday in Somerset at Montacute House -Tudor Mansion ( now of Wolf Hall fame as some of it was filmed here). It stays bright and warm enough in the sun to eat our  smoked salmon sandwich picnic. But we keep our coats on.

When it turns cloudy and cold we go inside the house,

where we've been many times before but

although the library is unchanged a lot of the paintings of people in Henry the Eight's court in the long gallery have gone.

This pussy cat high on the windowsill reminds me so much of Flapjack, 

but not quite so beautiful.

The borders in the gardens are mostly bare except for a few November snapdragons in a sheltered bed near the kitchens. It's getting dark when we leave at 4pm.

On Saturday I walk into town to have my hair cut. I suggest to Robin that he comes in later to meet me for a coffee. When he rings me I'm in the queue at the EE mobile shop buying a SIM card for his phone. He sounds upset. He says he can't come to meet me because he can't do up his 'toilets'. That could mean his shoes or his trousers. I work out it's his jeans but not if it's the zip or the belt. I go to M&S and buy him a belt with a clip fastening instead of a buckle.

But when he shows me the problem at home it's that he can't do up the button, hasn't got the strength to bring the two ends of the waistband together. And the zip is tricky for him as well. It wasn't yesterday though.

So now I'm researching where to buy elasticated waist trousers and velcro fastening shoes.

This evening after our gentle healing/transforming session in Sidmouth we stop at Waitrose for supplies. I'm stocking the freezer and the cupboards with food for when I go away on Thursday for a week - for when my brother-in-law comes to stay with Robin.

 As we walk around the aisles my hands get colder and colder, my fingers more and more numb and useless. I can't get my debit card out of my purse or slot the car key into the lock or feel the steering wheel in my hands.

This is what it must be like for Robin all the time with his right hand. At least I know I can de-frost my fingers that the feeling will come back eventually. He doesn't have that certainty, that comfort.

In His Good Hands

At the  beginning - the allotment 2010

2011

2014

at the end 2015.

 Today lovely brother-in-law comes with his camper van and takes Robin out for a drive.

I make hot lunch - it's a miserable grey day - coconut and tomato prawn curry with fluffy rice, and garlicky ruby chard, for when they come back.

While Robin sleeps, brother-in-law and I drive to allotment and cherry pick the contents of the shed and the green house - rolls of green netting, a rake, a fork, and a spade, watering cans and decking squares and an old table, big pots and un-used planks of wood. We leave the rest for the next owners.

I'll come back another time to dig up rhubarb and fruit bushes to give away.

This is an easy way to say goodbye to the allotment  - slowly, gently, sharing it out, letting it go  when it looks sad and broken and ready for a new lease of life. Better than watching it go to ruin, remembering when it was flourishing and productive in Robin's good hands.

 Hands that can't hold a spade now. But can still hold mine.

Everything Is OK

One moment in my relentless day.....

The lady serving behind the counter in the Health Food shop says she remembers Robin from the Landmark Forum - a self development course we did together many years ago. She knows he has semantic dementia. She says,

I sat next to you once in the course and you were lovely and funny ....I just wanted you to know I knew what you were like then.

Robin says,

 I don't know what the Landmark Forum is. I have a brain disease.  Did I have sex with you? Joke Joke.

She says no but she laughs. We all laugh. I try and change the subject.

 As we are leaving -  I'm edging Robin towards the door -  he congratulates her on having a wonderful shop and says she's a lovely girl and so is the other lady behind the counter and so is the man behind us in the queue.

I can't wait to get out of the shop. You'd think I'd be used to it by now. Take it in my stride, adapt to the embarrassment, the anxiety about someone being offended. Sadly the thing Robin likes doing the most now - shopping, especially for food - is  mostly just an ordeal for me. Sometimes I make it fun and don't let it get to me. Today wasn't one of those days.

  So this adorable picture is to remind me that, as Matt Kahn says - Everything is OK and I'm loved and I'm safe.

Are You Up Yet?

Dartmouth harbour this morning,

from the balcony 

of the amazing house I stayed in last night with friends.

Devon fields this evening driving back

from my pampering day at the spa.

 I'm feeling very, very clean and soft and nourished by a hilarious Razul mud treatment and  a gentle massage.....and lots of lying around on lounger beds, drinking coffee and gallons of water, and talking in the steam room, in the jacuzzi and round the lunch table.

 While the wind whistled around the ranks of golf carts and the rain slashed the windows my real life zipped along without me perfectly smoothly.

At least I trust that it did as I resisted the temptation to ring up Robin and say "Are you up yet? Ready for the Walking Group?

Especially as I knew my sister was there and in charge.

  This letting go and trusting thing feels like a spiritual practice -  much harder than meditating....

Those Small Dark Rooms

Sunday -  the view from the top of Dunster Castle in North Somerset.

The sun trying to burst through its cloud blanket....

briefly...over the mill stream.

Robin gracing the bridge in his new jacket.

Sunday lunch - cheese and onion pasties in the pop up cafe by the car park as the restaurant in the castle was closed. We ate them at a picnic table under a big blue umbrella to keep out of the fine spitting rain. 

Someone was having a firework party on Sunday night.....

sharing it with the whole street.

A tearful, wobbly day.....scaring myself with the idea that I can't have a life of my own alongside my care taking role.....not the one I thought I was having anyway......as I see how much Robin's weak arm and hand restrict him, disable him. As the doors slowly close around him, the rooms I live in become smaller and darker....I  find it harder and harder to leave him for any time alone.

But this afternoon as I know he's in the capable company of a big hearted friend I accept a lovely invitation to go to the movies. I disappear for a few hours in the darkness  of the cinema,  totally absorbed by Maggie Smith in Alan Bennett's play The Lady and the Van. It's such a treat -  I feel like  I'm joining the grown ups in the real world. 

And I have another treat tomorrow - a blissful night away with friends.....a day at the Spa.....knowing Robin is safe in the hands of my dear sister who will stay with him..... while I learn how to receive the gift of pampering and loving myself.....leaving behind any residues of guilt in one of those small dark rooms which need spring cleaning anyway.

And this is a candle for Paris.

  

Grant Me The Serenity

A lone November rose in spluttering rain this morning. I notice it when I'm carrying yesterday's vegetable peelings down to the compost bin at the bottom of the garden.

We have an early appointment with our lovely Physiotherapist at the surgery. He's most concerned about Robin's right hand stiffening into a claw. He says he can't see him anymore as he now needs neuro-physiotherapy which happens at the hospital and will need a referral from the consultant. When we are leaving Robin says,

But I want to go on seeing you, you are such a lovely guy.

He is. But he's already seen us more than he should have.

At home I ring the consultant's secretary and ask if Robin can be referred for neuro-physio even though he hasn't had an MRI scan yet - the appointment's in a month's time. He says it's unlikely but he'll pass the message on. I don't mean to but I find myself crying a bit on the phone as he sounds so sympathetic. He's also called Robin.

I ring the GP for a referral to the Occupational Therapist but she's out today.

Later, while Robin is having lunch before our friend comes to pick him up, I ring EE - Robin's mobile phone company to get his contract changed. I've already rung 3 times and been cut off. They need to speak to Robin for security questions before they'll speak to me - but I know he's forgotten his password.

 I finally get through. Put Robin on the phone. Translate the security questions for him as the person on the other end has a strong Indian accent that he can't understand. I tell Robin the answers to, What was the last bill? What are the last three digits of your bank account?

 Then he puts me on hold with music.

Our friend arrives to take Robin out. I answer the door with the singing phone glued to my ear. I apologise. I explain. I ask him to tie Robin's shoe laces. Robin finishes eating his banana. The man in India finally comes back on the line. Then we are instantly cut off. I wave them goodbye.

It has to be done today as it's the last day of the old mobile phone contract which is stupidly expensive but I can't face going through it all again. And now Robin is asleep.

Today I also discover the soothing qualities of brown rice - for an unhappy gut. Mine hasn't been good for a while. I come over all hot and dizzy at the surgery this morning. Lovely physio brings me a glass of water, says I've lost colour. It passes.

Later I make myself a bowl of brown rice with a boiled egg and soya sauce. And then a bowl of brown rice with maple syrup. It's so hard not to eat vegetables but soft is all I can face.

A friend gave me a lovely card today with the Serenity Prayer on the front...reminding me to take care of myself.

Grant me the serenity

to accept the things I cannot change.

The courage to change the things I can.

And the wisdom to know the difference.

Last Performance

I've just come back from an electrifying performance of  Carlos Acosta's ballet, Carmen, which he wrote and choreographed, streamed live from Covent Garden in our Odeon Cinema in Exeter.  Darcy Bussell introduced him as the most famous male ballet dancer of his generation. He's from Cuba and it was his last performance after 17 years with the Royal Ballet. At the end there was very emotional, flower strewn farewell on stage - he's not only an amazingly talented dancer but also a really lovely man who's had  huge influence on ballet - particularly encouraging and mentoring young men in the profession.

It was especially poignant tonight as his mother-in-law, who is a friend of mine, and fifteen of our friends were all in the audience, cheering him on. I'm so glad she got to see her daughter and grand-daughter on the screen too  - he lifted her up in his arms along with a huge bouquet of flowers  to wave goodbye - sharing him with the thousands of other people watching all around the world....

I asked Robin if he'd had a bath while I was at the cinema and he said no he was going to have a shower.  Good thinking. Worry about getting out of the bath sorted - and I didn't have to do anything.....

Safe And Free In This Moment

An exquisitely wrapped birthday gift from a dear friend today.

This morning in my family constellation session I chose some crystals and some precious stones to represent me and Robin. And also Freedom, Healing and Guilt - some things that have been troubling me. Out of the conversation with them I found that the guilt was also grief and not only mine....that the source of it was in Robin's family too....and the healing of it is to give it back where it belongs. 

And the longing for freedom is also the longing for love. The more I love myself, heal myself through Grace, the more I can release Robin.....freeing myself I free him from the burden of my guilt. And then anything can happen.

So when he tells me tonight that he found it really hard to get out of the bath because of the weakness in his arms ..... that he was afraid he would fall.....I don't let the lurch of fear freeze my heart or think it's somehow my fault.....I don't even make a panicky plan about what to do if he can't get out of the bath. 

I just notice that I don't know what to do...... or even how to love the little me that is afraid...but that somehow I will...because I'm still here.... just breathing. Safe and free in this moment.

Part Two

Evening of day three. ...

sun going down over the swimming pool...

watched by the pussy cat...

Day four.....I didn't think he would, because of the erosion of the path, but Robin was willing to walk along the cliffs in the opposite direction of the town....

my favourite walk.....

someone had written this far below on a beach we'd never be able to climb  down to now....

Robin did slip on a steep bit of the path but no damage done -  just mud on jeans.

 Reward lunch at the end - Robin's giant butterfly king prawn.

The little church we can see from the balcony....an iconic landmark where ever you are along the cliffs, on the beach, in a cafe.

Last day  - the first really hot sparkling blue one...

bouganvillia...

date palms...

olive...

cliff path...

Armancao de Pera behind us...

 where we had  a tropical salad lunch - I'm not a fan of pineapple and strawberries with salad - but it was generous and fresh and cheap and just what I wanted.....

 and a final custard tart indulgence....

in the beach cafe near the Town Hall....

 and another indulgence -  a passion fruit ice-cream cone strolling back to the taxi rank...

past the chiming bell of the church.

Last evening. Robin carries the shopping - Rocha pears, sharon fruit, giant lemons, peanut cookies  and almond tarts - back to the hotel and I take the long steep steps down to the beach to catch the sunset over the ocean....

where I'm alone at last with the seagulls...

and the shells

                             

and the unpolluted water of the Atlantic.....ready to come home.