You Choose

At the  weekend I celebrate my brother-in-law's 70th Birthday with my big sister and all her family in a beautiful part of Somerset draped in autumn gold and bronze. I had been planning to go anyway but would have been on red alert to come back if Robin was failing.

Instead  I share the loss of him with them.....engulfed in the bright sweet energy and aliveness of youth and tiny people.

Sunday afternoon, to bring myself back to my odd single life I walk in the park. The first time since Robin died. There are so many first times now.

This grieving feels like an illness... a thing taken possession of me....an invasion from inside....waves of nausea and dizziness.....of disbelief ... the sudden stabbing pain of realising I will never see him again...which fells me at the knees.

I keep upright on my feet all day with the help of our dear friend who is leading the Thanksgiving service. The kitchen table is covered in papers and photographs and cards and folders of Robin's writings. We are trying to find a way to access this man .......his life and loves and work...the whole complexity and mystery of  him....to distill him into 15 minutes. I feel light headed with overwhelm.

We stop for lunch - spicy pumpkin soup, roasted tomato bruchettas - sitting at the picnic table in the autumn garden,  leaves falling from the apple tree, unbelievably hot sunshine on our faces.

In the middle of this I make and take phone calls from the caterers about the menu for the food at the wake and ask a dear friend to work out and order the right equipment we will need to feed and serve our guests.

We call the funeral directors with questions about parking and flowers and the keyboard at the crematorium.

In the end we make an outline ...a mind map of all the threads of Robin's life.... reduce it down and down....to themes .....to headlines...to summaries.....I'm not sure if we have captured him or lost him in the process.

I'm so grateful to her....and wrung out with the enormity of the task. I want to ask him,

What do you want me to say about you?

But I know his answer .... it's what he always said in the end ....when I asked him,

Where do you want to go today?

or

What do you want for supper?

or

How am I going to get through this without you?

He would just smile at me and say,

You choose.

A Draught At My Back

The sun falling out of the sky. Portugal December 2015. I thought we'd have more time.

All day my sister and I work on the order of service, and sending out the details of the funeral.

I take breaks to make us hot chocolate, scrambled eggs. And to have small crying breakdowns. It can be anything that poleaxes me....something nice someone writes in a card....the bottle of smoothie in the fridge he never finished....his empty wallet in the top drawer of the dresser....his winter dressing gown still on the hook on the back of the bedroom door.....his smile in a photo.

Later I drive to Waitrose to buy chocolates for my brother -in - law who had his 70th birthday on the day Robin died. Everyone looks as if they are having normal lives.....doing their shopping, complaining about the prices, getting cross with their children.... looking harassed or tired or happy.....anticipating the weekend..... without this great empty chasm  inside them.

In the kitchen tonight I stand at the counter, eat a fillet of poached salmon, straight out of the packet, tearing off pieces with my fingers.

I keep having this feeling of a draught at my back.... some kind of protection of a role I took for granted has been swept away....the state of being married...having a husband.  Even though in the last few years Robin couldn't be a husband, couldn't even hug me, and I took on everything that he used to do....and even though I've been living on my own for the last 4 weeks....I still felt like one of two....that somehow he still had my back in the way he loved me. Even though he couldn't do anything he was still here.

Now he's not here and there is a cold draught all around me. Robin-shaped holes everywhere I look.

Dedicated To Robin

This is the beautiful flower mala created by my sister-in-law in Fiji for Robin. She and my brother live in a spiritual community there. It will be taken at 5am to the 'Brightness Temple' of their teacher to accompany a Blessing Request to assist Robin in the transitioning out of his life. And out of ours.

I can even smell the rich perfume of the frangipani flowers - they are very precious on the island and have only just started to return after the devastation of the hurricane a few months ago. I am so grateful to them both.

And grateful for this quote from their spiritual teacher, Master Da, about life and death.

What is more than Wonderful is not threatened.

It helped me to get through this morning when I went to register Robin's death at the Register of Births Marriages and Deaths, and I became 

widow of the deceased.

And coffee with dear friends afterwards also helped to keep me going - especially as they showered me with  beautiful and yummy late birthday gifts.

This afternoon I wrote emails about changing the venue for the Thanksgiving service, about the menu for the caterers, about sourcing hot water tea urns and coffee cups. And read the continuous stream of emails and cards that keep coming in as more more people find out that Robin has died. Some people I don't know but whose hearts he touched.

This from one person,

Sorry to hear that Robin Currie has passed away. Visionary, holistic helper, and a stand for transformation. I am grateful to have met him and for his lasting presence and impact.

This evening our Deeksha meditation is dedicated to Robin . Afterwards we sit in the circle with cups of tea and gorgeous courgette cake and they share their memories of him. They have all been marvellous supporters, accompanying us on our journey through his illness. Many of them have been dedicated visitors and helpers, drivers of many miles in the Devon countryside, listeners to his endless PBWs,  listeners to endless Abba songs at full volume, sugar bowl removers in cafes,  shoppers of biscuits, and table tennis players.

We laugh and cry and I am so full of gratitude for them.... and for Robin ....and for how he has blessed our lives by finally opening up his heart to himself and to all of us. Even at the cost of losing his own life.

Before I knew him in his parents back garden. He didn't have a beard when I met him in 1982 but he still had those braces....and he was more likely to have a beer in his hand than a cup of tea....

Firework and Candle

This same  candle has been burning day and night for Robin. I lit another one just now to go in its place.

I have been making funeral arrangements all day with my sister and our friend who is a celebrant and will be leading the service. More beautiful cards and emails and messages have been pouring in. I'm beginning to think we will  need a different venue to accommodate all the people who want to come to remember and honour Robin. He used to think he didn't have many friends. I wish he could see what is happening in our kitchen now.

Tonight I leave the candle and the kitchen and the computer for a few hours and disappear into the dark womb of the cinema ......and afterwards celebrate Robin at Jamie Oliver's with pizza and Prosecco...and all the time feel this empty place by my side where he used to be.

Tonight his oldest and dearest friend wrote and sent me some lovely words about his memories of their friendship ....

Did a great big firework go off in heaven – as one of your friends has already said? Or did a very bright light go out on Earth?

Both I think. RIP Robin

Painting of Robin surrounded by his weird and wonderful ceramics.

By Rachel Jamieson.

What Am I Supposed To Do Now?

This candle has been burning on the kitchen table since Robin died.

In the daylight hours my dear sister guides me through the mountain of stuff to do...the more we do the more the list grows.

We meet Charlie, the man in charge at the cemetery.... beautiful big trees, shedding their autumn leaves...we choose a plot in the Edwardian Section where they are re-cycling the space between the graves...look inside the chapel...count the seats....not enough....will need to hire more chairs.

We drive to the home and start packing up Robin's room, the carers keep coming in and telling the stories of how much they loved looking after him, how much they loved him and we hug and cry and carry all the katundu to the cars.

We pick up the death certificate from the surgery down the road.

At home, after scrambled egg lunch, we start making the phone calls and crossing things off the list. Beautiful flowers arrive form my big sister's family....beautiful cards and messages and emails start arriving.....I tell the neighbours about Robin and they are shocked and tearful.

We start making an order of Service.....and all the time I think we must be doing this for someone else. It can't be Robin...he can't not be here. He's always been here. He's my husband.

Much later in the hours of darkness I start to look for photos of Robin and find his files of writings, all typed on fading paper...TV scripts, plays, skits and sketches, political satire, film reviews, magazine articles, crosswords, pantomimes, short stories, children's stories, a novel... and letters to me. A whole big life - bright and full of expectation for the future.

And I can only weep for my lost man....and howl at the walls....and  find myself in a balled heap on the carpet in  his office....the only words I can find are no no no no no no no.......you can't leave me you just can't....you have to come back.....what am I supposed to do now? 

Robin

Robin died this morning at 7.35am.

 Only it can't be true because yesterday his lovely carer said he needed more after shave lotion and hand soap so I put them in my bag to take to him this morning. And in the fridge there is the other half of the banana he ate yesterday in the car when we stopped at the side of the road in Haldon Woods.  I was trying to understand what he was saying but I couldn't, so I  made him eat the banana instead which he didn't really want to and he gave me one of his looks and did it anyway - one bite.

He was really tired yesterday afternoon and couldn't keep his body upright and he kept slipping  sideways on the car seat and I kept pushing him back. And his eyes kept closing.

 When we got back to the home, in the dusk, I made him drink 3 sips of Innocent strawberry smoothie - but he just wanted to lie down.  I had to get the carer to help me hoik him up out of the car and he could only just stand and take 3 wobbly steps to the wheelchair.

He had four carers and me getting him into bed and trying to understand what he was saying about moving his left hand up or down.... and the pillow between his knees, further left or right, and in the end it was just me and him but he still wasn't comfortable and he couldn't make me understand and I was at a loss what to do. And I felt so frustrated and I didn't know whether to just give up and leave him as he was. 

In the end I think I moved his left hand where he wanted it, just over the duvet, and he said  It's fine  and I love you and have a wonderful life.

And I kissed him and said I love you too and I'm bringing your sister to see you  tomorrow.  And I'll see you tomorrow. 

But I was already at the door.

But now it's today and it's too late because I didn't see him again. Living and breathing his shallow breaths. And I didn't say goodbye properly.  And when I arrived this morning, after the phone call I've  been dreading, his arm was still warm where I  held it under the duvet and I wanted him to open his eyes, and I couldn't believe he wouldn't. 

 I whispered good-bye in his white white ear but he didn't hear me. Or maybe he did..

A dear friend texted me later and said, 

It feels like a magnificent beautiful  firework just burst into heaven.

I think he did just that.

 But he has left me behind. In the shadow of his spark.

Go To Bed Earlier.....and Muffins

Random photos from this week.

Short blog as I have agreed to go to bed earlier....

Early this morning, you can see your breath in the cold air, young fresh faced gardener arrives with petrol hedge trimmer and scalps the honeysuckle and wisteria and red Russian vine on the fences. 

More light in the thicket but I feel sad .... relentless change marching on .....you can't replace what you have cut down....it may grow back but it feels brutal, the exposure.

Robin enjoys his arm and hand massage from the lovely Hospicecare lady but his eyes close half way through. She offers me a hand massage but I can see that Robin wants to go out. We don't get far and he wants to go back, still sleepy.

His afternoon and evening visitors say he is more relaxed and lasts longer on their drives but still grinds his teeth and his breathing is laboured. If you don't eat and drink much you must just get weaker and weaker.

At home I make soup and muffins.  And fall asleep on the sofa. Which is why I need to go to bed earlier .....they say you need 28 days to break a habit.....I can do it.... though these long hours to myself still feel like a novelty which I don't want to miss....

Gluten, wheat and dairy free muffins made with ground almonds, nuts and seeds, eggs and almond milk....waiting for their spread of crunchy almond butter. Lunch tomorrow.

Good Ideas, Keep The Visitors and Almond Butter

Sunshine through the leaves and a few raindrops in the park the other day.

Although I'm not sleeping much, good ideas sometimes slip into my mind in the long early hours. I was mulling over how to keep Robin entertained when he doesn't have visitors and I thought about one of those electronic photo frames on a slide show loop. I did some internet research and found you can download videos and music as well as photos on some of them.

I planned to have a look at one in John Lewis this morning after lovely coffee and catch up with gorgeous women friends, but I got distracted by 20 percent off women's wear in M&S and never got any further down the street. Better to order one from Amazon anyway.

This morning was the experiment at the home about seeing if Robin was less tired or ate/drank more if he didn't have a visitor. Didn't work. When I discussed it with the lovely staff nurse J  this afternoon she said I must keep in mind that Robin is deteriorating,  that they will keep him comfortable and that I must do whatever I feel is necessary to keep him happy and they will work with me to that end. And that I should go home and get some rest.

So, as long as visitors make him happy, even for a short periods now, and he can manage them, and they are willing, I will keep them coming.

Robin was very tired after our short drive anyway. Earlier I asked the activities chap to come and help Robin with the 'eye-mouse' programme on his computer. It means he can use his head to direct the cursor instead of his left hand, which he can't use any more, to still play Solitaire. Although he got it to work it was very cumbersome and over sensitive and Robin found it frustrating. I will get our computer man who set it up in the first place to come and see if he can help. I must remember to make the call...

I thought it was Friday all day today...getting ahead of myself......time seems to be speeding up at the moment and it's always midnight before I've done everything I want to...

My supper tonight... the gift of American Crunchy Almond Butter .....almost impossible to not have another spoonful slathered on hot granary toast topped with garlicky avocado salsa and lemon oil....definitely a waistband loosening supper... 

'I Dreamed Of Semantia'

This morning I tidied  Robin's office and the cleaner hooverd up the layers of dust under his desk and on the window sill and on the electric keyboard. 

I kept finding the world he inhabited.... the world he created.... the man he was...... in his paintings, in his ceramics, in the books on his shelves, in the papers in his in tray, in everything he wrote. And he wrote so much.

I came across a last entry in a diary on 4th June 2012, recording his dreams..

" I dreamed of 'Semantia' as a kind of toast which I ate all night with fried fish. But it is actually 'semantic dementia'!

Tonight time has run away with me. I find myself in the kitchen still cleaning out the tea cupboard at nearly midnight...throwing away boxes of fruit teabags no one ever drinks - embarrassed to see the sell by date as 2003. 

 And I light two half burnt candles in glasses that I found in Robin's office that I gave him years ago, covered in dust. Time to burn them to the end.

Spoonfuls of Love

The sky last evening  - a symphony of fire and smoke giving birth to dancing pre-hisoric monsters.

As Robin had a morning and afternoon visitor and I wasn't seeing him till the evening  I took the luxury of time to do some gardening, to start sorting and putting away the jumbled heap of my summer clothes, and searching out spare duvets and pillows ....getting ready for when Robin's family come to stay for a day and a night next week.

I'm not ready to start sorting Robin's clothes yet. Although I did take a  bundle of his old gardening clothes and shoes to the Charity bins at Waitrose the other day. Just things I know he'll never wear again.

I also took the time to sit for a while on the sofa and listen to some of  a Matt Kahn UTube video about Anchoring the Divine Feminine....which is meant to be responsive from the heart and not reactive.....and the drive of the Divine Masculine which is meant to be intuitive not defensive. I fell asleep before  I got to the part about how to do it. Except of course  the point is to bless everything with the opposite of what you see.....ask for peace when you see conflict......love when you see fear.

Somehow it helped me to get some perspective with what is happening with me and Robin and the home. I just feel clearer now that it's OK to let the home take care of all Robin's physical needs.  I can  still do my bit about getting him to drink more and stay on the case of ensuring he is as comfortable as possible. They can deal with his constipation. 

 But as his disease eats away his body and his mind I can be a resource for him for his psychological and emotional needs...just help him to remember who he is, who he was, remind him of  the people he loves, who love him. Listen to him and his heart. Enable him to have whatever still gives him pleasure.....the air on his face as we wheel him to the car...moving anywhere.....being driven .....especially to places which mean a lot to him.....past the houses of our friends and family, his clients.....places where we lived.....places where we walked..... keys to  his happy memories.

Driving him in the dusk tonight towards the sea, stopping to buy fuel, pointing out the sun dipping behind the hills, even though I'm tired and I can see that he's getting tired too, and even though he won't remember where we went, I know that this moment is all we have. And it's better than fretting about how many spoonfuls of pureed broccoli he had tonight. And if it's enough to keep him alive a bit longer.

Nothing will keep him alive if this disease continues to devour him from the inside. But I can feed him love, never ending spoonfuls of it, for as long as he can smile his crooked smile, stick out his tongue at me, and breathe his quick and shallow breaths.

  

A Wobble.

In the garden - after the rain on Saturday.

Sunday night I have a big wobble. Think I should bring Robin home with 24/7 live-in care.

Both my sisters counsel me on the phone.

This morning I cry on the phone to the hospice nurse. She advises that at home I would still be the second carer as he needs 2 people now to move him. She suggests a course of steroids to stimulate his appetite. I am not keen. 

I ring the care home and arrange a meeting with the manager and the staff nurse.

 Then I walk in the park in sunshine and spitting rain. And buy fruit smoothies in Waitrose for Robin.

In the meeting they are concerned about his food and fluid intake and they think he is too busy,  has too many visitors, means he won't eat and drink because he's always anxiously waiting for the next person or too tired to eat when he comes back.

We discuss alternative timings. They suggest medication to reduce anxiety.  They say he is very demanding at night and wants to go out all the time. I say I could come back at night to see him. They say no you are doing enough.

They also say I am worrying too much, doing too much...to let them get on with their job of looking after Robin but they will always discuss any changes and when/if he needs more or different nursing care. They are kind and supportive and I feel re-assured.

Robin's lovely carer from the Mede comes to visit him...she says they all miss him and his kisses.

 Then we drive to the hospital to see our nice South African consultant neurologist. When he shakes my hand he notices how cold my fingers are. I say I have Reynauds. He says yes, my ring finger which is blue is the give away.

 He is lovely with Robin -  immediately notices the teeth grinding... gives him 2 injections of Botox in his cheeks to dry up excess saliva and to relax his muscles. Robin doesn't flinch - amazing. I would be on the floor.

He also dictates a letter to his secretary to Customer Services at Easyjet confirming that Robin's situation is grave and there is no way he could fly. We are supposed to be on holiday in Portugal this week. I booked the flights in February when there was no inkling that Robin would be in a wheelchair 8 months later. I am trying to get a refund for the tickets.

He also says come back in 6  months time. Or earlier if I have any concerns.

The moon tonight beyond the telegraph wire.... when I was taking the rubbish out to the front gate.