Saturday, 31 December 2011

Burning The Old

31st December 2011 Saturday

I peel potatoes and parsnips. My husband pours wine. We start talking about our year. He says it’s been the worst year ever. We end up bickering. Whose reality is more real? It starts to rain - we hear it hammering on the plastic utility roof. On the patio my husband has laid wood and torn paper for a fire in the wide copper bowl ready for our New Year Ritual - burning the old - bringing in the new. It won’t light now.

While the veggies roast in the oven we sit side by side on the sofa for our daily fifteen minute meditation. My mind won’t be still so I give up and pray instead.

Just before midnight we have a bath and bring in 2012 with Jools Hollland on the TV. My husband doesn’t know what Old Lang Syne is until he hears the music. We sing along and jig our arms together. He says 2012 is going to be fantastic. I like his optimism.

And I’m going to light that fire on an unchartered day when the wood is dry and let the flames eat up the past.

Friday, 30 December 2011

Playing in a Blue Sky

30th December 2011 Friday

This afternoon we sit round a big table in a warm kitchen - some lovely women and I - and instead of sharing sumptuous food like we usually do, we are stoking our creative fires - cutting out and pasting, chalking, pastelling, painting and inking. So I feel like an artist among artists steeped in the colours of Gaugin and Monet dipping my brush into viridian green, windsor violet, burnt sienna and liquid gold. Splashing my heart onto the paper - letting the paint speak for me.

Playing in a blue sky - as if my life depends on it.

Thursday, 29 December 2011

Not Thinking Straight

29th December 2011 Thursday

Late morning - my husband and I walk along steep mud-rutted paths, wind roaring through the trees above us, rain spitting on our faces. I feel unsettled in this twilight time after Christmas - but still full up and humming with the last five days deep in the midst of my beloved family - all scattered back home now.

We played Monopoly a few times and word games - which my husband doesn’t participate in any more. A few Christmases ago we were playing a “Twenty Questions - Guess Who I Am?” game and at the end my husband asked ‘Who’s Mickey Mouse?’ He wasn’t joking. It was then I knew something was wrong - a slow bell tolling in my solar plexus. Today he asked me if I knew his uncle’s surname. And who is Charles Dickens?

Tonight I sit with my father in the downstairs lounge at his home. The chair is squashed up close to a big winking lighted Christmas tree. We count the tropical fish in the tank across the room. He says they look like elephants. I wonder what he’s seeing. I ask him about the visit he had yesterday from his great grandson who is six months old.

He’s the darling of everyone’s hearts,’ he says. ‘No-one can think straight in his presence’.

I know exactly what he means.

Saturday, 24 December 2011

Christmas Eve

24th December 2011 Saturday

The dawn sky is beautiful - almost blue, streaked with coral and flame.

A dear friend calls - reminds me how much l am loved and if I could only feel this love and let it in I wouldn’t be so sad. I’m afraid feeling sorry for myself is leaking into my blog and I’m in danger of bleating - seeing my glass as half empty instead of half full.

My day has been all about Florentines - little sticky piles of cherries and almonds, orange peel and cranberries spreading into tiny lacy lakes in the oven.... waiting for them to cool.... spreading melted chocolate - dark and white - on their bases....nestling them into red napkins - making them into Christmas presents for my family.....amazed how long it takes me.

At half past five we are standing outside the Cathedral in a long queue for the carol concert - the wind like stinging icicles on my face. When the man in the black robes shouts out that it is standing room only we hang on a for a while, stamping our feet in the cold and then give up and go home.

My husband re-heats last night’s left-overs for supper while I fiddle about with the Florentines and this time I am truly grateful - and feel his love, like the sunrise, in my heart.

Friday, 23 December 2011

Crying A Bit

23rd December 2011 Friday

Yesterday I cried about my bad haircut. Today I cry often and easily - about everything and nothing.....

My sister holds my hand - we sit on the sofa - abandon the Christmas cards laid in lines on the carpet, waiting for their little gold pegs to attach them to the wide gold ribbons I bring out every year..... I think I’m crying about trying to be normal on the outside when inside I feel in pieces - or it could be something else......

My nephew holds my hand while I cry a bit, when we go out into the car park, into the coldness of the night leaving my father in his over heated room, his head slumped into his chest. We have been sitting with him in the lounge of his home while the residents play party games - after a fashion - pass the parcel and with a blindfold on, stick a number where you think Rudolf’s nose is on a portable picture of a reindeer. My father wins this game - a big box of wine gums. He chews a green one for a long time.

I tell him my nephew and his fiancee have two cats and he says,

‘Well, all I can say is congratulations’.

And he tells us he had a cat called Pinkle Purr when he first went out to Africa to stop him being lonely while he was waiting for my mother to come out and marry him. He used to be able to quote the A A Milne poem - Pinkle Purr - a little black nothing of feet and fur. But he can’t today. He doesn’t say very much at all that makes much sense.

When I put my key in the door tonight the house smells of raw onion. My husband has prepared our supper, chopped up lots of veggies to stir fry. At first I think he has used the leeks I need for Christmas. But he hasn’t. I’m not hungry and say I don’t want to eat. He looks crestfallen. He is painting his ceramics at the kitchen table and in the utility room. I was going to make a Chocolate Rocky Road fruit and nut loaf but I feel squished out of my space.

I go upstairs and lie on the bedroom floor and cry a bit. Then I start wrapping his Christmas presents. And wish I could be more gracious - feel more grateful than I do.

Thursday, 22 December 2011

After The Solstice

22nd December 2011 Thursday

We spent last night - The Winter Solstice - when the light disappears for the longest time - among dear friends in a beautiful Christmassy candle-lit home. In the garden courtyard we stood round a wide rimmed fire bowl, crackling with logs and rosemary branches and threw pieces of paper into the flames - letting the old year’s pain and sadness go up in smoke. We drank mulled wine and hot spiced apple juice and feasted from a table laden with the all the deep-earth food of mid-winter - carrot cumin soup, chestnuts and red cabbage, garlicky potatoes and butternut squash, sticky parkin squares and chocolate gingerbread.

This morning I sat in a traffic jam in the middle of Exeter, late for my appointment, and despaired of ever getting to the end of my Christmas list. I lay on a couch and felt the magic fingers of a wonderful man kneading away the knots in my lower back - deep in my right side where I carry my father and my husband.......

This afternoon I made a cinnamon custard for ice-cream and rolled out pastry for mince pies. I cobbled together the trimmings into an apple turnover - and remembered my mother who always made jam crescents with her leftover pastry......

And all day I have been so grateful for all the love and abundance in my life which holds me up, sustains me like cupped hands offering me water.

Tuesday, 20 December 2011

What I Talked About Today

20th December 2011 Tuesday

What I talked about today......

Bereavement - in the office of our lovely clinical psychologist - he says we are bereaved but no one died. Like grieving for the baby we didn’t have. He gives us a graphic demonstration - joins his two hands together - like you do when you pray or entreat - removes one hand (a death) and the other is left alone - twitching, gaping - where the fingers of the other were nestled.

After my husband’s diagnosis our hands are still entwined but there are uncertain gaps between them now, the snug fit destroyed. So it is up to us to find a way to rub along together in the spider’s web of loss and change, fear and hope. And our CP reassures us that it is still early days - just over a year now since we heard the words ‘semantic dementia’ and didn’t know they were bullets from an unfired rifle, waiting to explode into the plate glass of our ordinary lives - leaving neat holes and no-going-back jagged cracks.

What else I talked about today......

Recipes for sea bass with my hairdresser....

My father’s cracked ribs with my uncle in Yorkshire.....

The best toy to buy for a six month old baby - my sweet great nephew - with the owner of a toy shop which is closing down tomorrow....

The ingredients of my version of Colcannon ( our supper tonight) with my husband - potatoes, leeks and cabbage.... but I know he won’t remember them....

And there must be other stuff I talked about but it’s already tomorrow - and only four days till Christmas....

Monday, 19 December 2011

Not Dying today

19th December 2011 Monday

Not Dying Today

I’m in Marks and Spencer’s buying soft socks when my husband rings with a message from my father’s home. He is better, not so confused, the district nurse has taken blood samples, the doctor may come or not, he won’t be going to hospital, the home can manage him for now. So I feel a space in my ribcage. I can do my shopping with the alarm bells off. Even so the crowds on the pavements, the insistent rain and my indecision send me home before I reach the end of my list.

My husband makes us lunch - garlicky mushrooms on toast. I watch the blue-tits hanging from the bird feeder. The garden is sodden - a single pink rose on a long stem waves in the wind like a flag of surrender. Or hope.

I can’t face any more shopping but my husband offers to drive me to Morrisons where we buy non-Christmas stuff like washing powder and cling film. And a huge three kilo salmon on special half price offer which I have to bend into a fat slippery collar to fit in the freezer.

Later my sister and I sit with our father in the downstairs lounge at his home - no-one seems to know how he got there - and we read him his Christmas post. One card is signed George but he doesn’t know who George is. Mostly he is transfixed by four tropical fish swimming in the tank across the other side of the room - burbling oxygen bubbles breaking the surface like showers of glass beads.

He says ‘Those sheep are watching me’.

I say, ‘It’s a good job no-one can hear you or they’d think you were loopy.’

And we laugh because today he doesn’t look like he is dying. Like he did two days ago with his eyes all vacant in the black hollows of his skull.

Sunday, 18 December 2011


18th December 2011 Sunday

They tell us that my father is refusing to eat and drink and he will need mouth care. But we watch a determined carer give him a cup of blackcurrant juice which he sucks up with a straw. She leans in close to him and asks,

‘What would you like for tea?’

He looks as if he’s reading the newspaper but without missing a beat he replies,

Squirrel’s liver’.

‘I don’t think we’ve got any of that,’ she says, deadpan. ‘How about some chips?’

When she’s gone I peel him a banana left by his afternoon visitors. He takes tiny mincing bites and flaps the skin in my face,

if you can’t tease family,’ he says,‘who can you tease?’

They called the paramedics and an ambulance to him this morning because he ‘wasn’t responding, and was talking gobbledegook’. The duty doctor examined him - blood pressure etc all OK - still bruised from his fall two days ago, probably a cracked rib, but very confused. So now he will be re-assessed by his own doctor tomorrow.

Tonight before we left and I asked my father what he was thinking about, he said,

the four festive horsemen.’

I’m guessing he means the Four Horsemen of the Apocalypse - and his feeling of death approaching.

If you listen carefully he usually makes sense - it’s just that some people confuse that with gobbledegook.

Friday, 16 December 2011

Flames Leaping and Laughing

16th December 2011 Friday

Bright moments from today dispelling gloomy skies and the feeling of Christmas hurtling towards me unblinkered.....

the faces of two dear friends across the cafe table as we share mushroom and cheddar tarts and exchange sparkly bags of sweet smelling gifts.....

in my sister’s kitchen a big wok full of stir fried vegetables - purple, red and yellow glistening jewels, swirled with green pak choi and fat pink prawns - her surprise supper for us...... reward for stuffing my father’s Christmas letter into 150 envelopes......

a fire in the heart of their sitting room - flames leaping and laughing in a glass framed cabinet - keeping the night at bay - knitting us close.......

Thursday, 15 December 2011


15th December 2011 Thursday

I’m sitting on a deep soft leather sofa in Cafe Nero, wet shopping bags of vegetables by my feet, the umbrella leaning against the side of the chair opposite me. My husband is in the queue to buy us coffee. It’s not even eleven o’clock but I feel as if I’ve run an emotional marathon already - wading through streets of Christmas shoppers. I gaze out of the window and watch the people passing by in the squalling rain and wonder what kind of Christmas they are having. I want to stay on this sofa forever.

The young attractive woman on the table next to us is talking on her mobile phone. She says,

‘Ok Daddykins I don’t want you to eat or drink too much on Christmas day. Promise me?’

I don’t know what Daddykins replies but I think about the big box of luminous coloured drinking straws we just bought for my father. To help him drink his tea and his coffee and his ribena out of the china cups which he is finding increasingly difficult to lift to his lips. So he forgets to drink at all.

I’d like him to be at our table on Christmas day but I think he’d be the dormouse in Alice in Wonderland at the Mad Hatter’s Teaparty and fall asleep in mid-sentence. Like he did this afternoon in his chair. When he woke up a bit later he said,

‘Where did you come from?’

As if I had just sprung out of a teapot.

Wednesday, 14 December 2011

Right or Happy?

14th December 2011 Wednesday

Tonight when I get back from seeing my father, who is vague and distracted and sleepy, I find the pussy cat has been sick on the bedroom carpet. Later he’s sick on the bed. We have a cream coloured counterpane. It’s the sort of sick that stains. It has seeped through to the duvet. I strip off the cover and the sheets. When I hang the duvet over the towel rail in the bedroom to dry it’s too thick and heavy and the rawl plug comes away from the wall. The pussy cat watches me calmly. It hasn’t stopped him eating again. But later he throws up his tuna on the welcome mat in the hall. I’ve been thinking we need a new mat.

When it’s dark. And cold. And late. And I’m tired. And sad about my father - all this ordinary stuff takes on silly upsetting proportions. My sweet husband offers to cook supper so I can write more Christmas cards. I lay a selection of allotment veggies on the counter. He says the beetroot will only take twenty minutes to cook. I say it’ll take much longer. When he says supper is ready and a I spear a knife into the beetroot it’s raw hard but the squash is mushy. So he pours another glass of wine and cooks it some more. Much later we pile our plates high and watch Masterchef on the TV. All this time I have a phrase running through my head - a quote from a wise book -

Would you rather be right or happy?

I was right about the beetroot. But so what? I was even more grateful that my husband cooked the supper. And screwed the towel rail back into the wall. And now we have clean sheets on the bed. Which is supposed to be the number one thing that makes people happy. Thank you, pussy cat.

Tuesday, 13 December 2011

Hole in the Ozone

13th December 2011 Tuesday

I was going to go shopping today. There was a nearly full moon in a thunderous slate sky when I pulled the curtains in my study this morning. At the same time the giant skeleton of the poplar tree in next door’s garden was shining like a beacon in slanting sunlight. Just before it all went squally black a pale rainbow appeared over the rooftops, a statement of faith painted over the dense cloud.

Then rain and hail waterfalled out of the sky and I gave up shopping plans - stayed at home and wrote Christmas cards instead - remembering, re-connecting to all those dear people in my address book - throwing me into their lives briefly - wondering how much you can say in a space not much bigger than the palm of my hand.

While I cook up the last of the apples stored in the shed - a bit wrinkly and pappy - but beautifully peeled and chopped by my husband, he takes a phone call from Littlewoods. It appears he has been the victim of identity theft - the clue being the two bottles of perfume ordered in his name that arrived yesterday. Even with his brain disability I knew he wouldn’t have ordered me Charlie by Revlon. It has been reported, the mobile phone also ordered by the thief to be delivered to another address, cancelled. No money lost. Just a sense of insecurity, something breached, lingering in the ether.

Like a hole appearing in the ozone layer. The opposite of a rainbow.

Monday, 12 December 2011

Love From X and Y

12th December 2011 Monday

Christmas cards spread all over the desk and on the floor of my study. A long list of addresses by my elbow. I planned to at least write the overseas ones. But I let the day sweep me up in other things - hand washing jumpers, cooking risotto - the buffeting wind and rain unsettling me - my excuse anyway. Maybe I just don’t want to write about my husband’s brain disability to our friends who don’t know.

When we receive a card with love from X and Y - my husband says,

Who are they?

And I paint word pictures, snippets of the lives of the people we know and love, memories of things we’ve done together, till he says,

Oh, yes of course I know who you mean.

I’ll remind him again when we hang the cards up on long red ribbons on Christmas eve.

This afternoon I sit on my father’s bed and read him the Christmas letters he has received over the last week. He knows who love from X and Y are. But he doesn’t know if he had a bath yesterday or not. Or if December is the last or the first month of the year.

I have a feeling I’ve missed the last posting days overseas anyway. I could always write emails......

Sunday, 11 December 2011


11th December 2011 Sunday

Last night at my husband’s exhibition of his weird and wonderful creatures I talked to friend who is a very talented and prolific ceramicist. She said,

‘I just like making things.’ As if she didn’t have a choice about it - as if it was her reason for being. She also communicates her passion by teaching and inspiring other people to make things.

I’ve been thinking that the whole point if being creative - making a torso in clay, a bangle of beads, a table setting, a cake, a friendship or peace in a home - is to share it. Then the joy, like a boomerang flung into the blue sky of trust always comes spiraling back to you in the smile on the face of the other.

Tonight my husband made my father laugh. He said he’d tickle him to make him stand up from his chair. It still took him ages, the effort of lifting his granite weight exhausting him. As I kissed him goodbye outside the communal dining room he said,

Sorry about the bristles. Do you think they make beard softening cream?’

His imagination is still as wild as it always was - a kite dancing on a thermal.

Friday, 9 December 2011

A Tethered Kite

9th December 2011 Friday

This morning we wrapped and packed up and dismantled all furniture and belongings in my father’s old room.

Bedding in black plastic bin liners, pictures in soft towels, the TV in a duvet, books and files in cardboard boxes, shirts and coats in suitcases, bleach and loo spray and glass vases in carrier bags, mayonnaise and walnuts and frozen roast beef in cool bags. All masterminded by my sister, carried down the stairs by my brother and my husband, loaded in the van by my brother-in-law. And driven away to be stored at their farm. Just leaving the big round table and the bed in the middle of the empty room.

We have told my father he won’t be going back to the life he had in this room. It takes all his energy and breath now to walk from the bed to the chair in the small space where he finds himself confined. He says he feels like a ‘tethered kite’.

I know it’s not my job but I wish I could cut him free.

Thursday, 8 December 2011

Surviving or Thriving?

8th December 2011 Thursday

Tonight my head is swirling with pictures of a tropical island in the Pacific ocean. My brother has just come back from Fiji where he has been on retreat in his spiritual community. The slideshow of lush green photos and his enthusiasm transport me out of my tiredness and remind me that nothing is impossible. Everything just feels harsher now when the wind is rattling at my window, nights are long and dark and my energy is a weak flickering flame.

This afternoon I made rich chocolate brownies for my husband’s ceramics exhibition on Saturday and supper for my vegan brother - a hazelnut roast spiked with cumin and allotment sweet potatoes like long pink fingers. My husband dug them up when I was in Portugal - a huge bagful and a big surprise as he thought they hadn’t grown at all.

Maybe it shows that a tropical plant can live in a northern country - but not grow big and fat and healthy. Like me in the winter - uprooted from the red African soil where I was planted as a child - surviving but not thriving. And I can see that it could be the other way around - if I flicked that switch in my head. Nothing is impossible.

Wednesday, 7 December 2011

Ghandi and the Dictionary

7th December 2011 Wednesday

Although it’s too cold for salad we are having it for lunch. We are talking about arrangements for next year. My husband says,

I’ve bought a dictionary for 2012.

Do you mean a diary?

Yes, what’s a dictionary then?

It’s what you look up words in for scrabble.

Oh yes, but it does start with the same number.... I mean the same letter.

We both laugh but he hits his forehead with the heel of his hand. As if that would jolt the the words back into order like unsticking the wheels of a stopped clock.

Tonight driving home from the cinema I say that the actor Ben Kingsley,( who we have just seen in a film called Hugo, which neither if us enjoyed ) played the part of Ghandi in the film of the same name.

But I know before he says it, and his face goes blank, that he doesn’t recall who Ghandi is. I’m tired now and it takes a few minutes while I try and jog his memory of everything I can think of to explain who Ghandi is and realise how hopeless I am at facts and dates - how shallow my knowledge really is.

And how much I used to rely on my husband to know stuff that I don’t. And how that loss used to feel like a knife twisting in my gut every time, but now it's a thorn, buried in my thumb, always throbbing. Better to snuggle up close on the sofa, my cheek against his heart beating under the rough wool of his jumper.

And not talk too much about things that could cause inflammation.

Tuesday, 6 December 2011

Plenty of Time

6th December 2011 Tuesday

Back from lovely sister-time in Portugal with freckles on my shoulders and lemons the size of small grapefruit in my bag.

Tonight with rain lashing against the windows and the central heating turned up I’m struggling to hold in my cells the memory of wide blue skies and white painted houses, the hard sand under my toes and the smell of salty grilled bream in the shade.

Although he wasn’t there I carried my father with me - a constant rolling wave crashing on the beach of my mind - wondering, wondering about him - and with the help of my dear sisters - starting the long journey of letting him go.

Yesterday, my hand on his back, I walked with him from his chair to the door - another kind of long slow journey - one step at a time, one swollen foot in a blue velcroed slipper in front of the other.

‘I’m sorry I’m holding you up’, he says.

Not at all,’ I say,’ I’ve got plenty of time.’

Which is true. If only I could wear it well - a necklace of precious moments strung into forever.

Now it’s the time to take the flapjack out of the oven - Christmas flapjack - with a layer of last year’s mincemeat sandwiched between the oaty mixture. An experimental recipe and a way to stop my husband eating the mincemeat out of the jar before I get a chance to cook it.

Friday, 25 November 2011

Cut to the Quick

25th November 2011 Friday

When my husband and I arrive this afternoon my father is lying on top of the bed. He hasn’t shaved for many days, his hair needs cutting. His teeth are on the bedside table. I can tell immediately he’s different from yesterday. He is confused - he thinks I have been here all the time and he sent someone to look for me. He says he thought it was teatime but they told him it was lunch time.

A lovely carer - a man who has had a catheter himself - helps my father empty his bag and says he’s not drinking enough and if he doesn’t the pipe can get blocked and it’s very painful then. But there doesn’t seem to be a routine in place for checking my father’s liquid intake.

I pour him a plastic glass of ginger beer. He only sips it. I say he has to stop talking so much and drink instead. He laughs but finishes the glass. He drinks two more glasses of blackcurrant juice. We try and work out a chart in his diary for him to tick when he’s had a drink but I don’t think he’ll remember to do it.

My husband cuts my father’s finger nails with clippers - but too close to the quick.

I don’t know how to do this - leave my father in the hands of people who are supposed to care for him. And they are but just not how I would do it. And it’s this that is cutting me to the quick.

Last blog for a while. I will be in Portugal after tomorrow with my dear sisters. Leaving my father in the care of the angels.

Thursday, 24 November 2011


24th November 2011 Thursday

No great words tonight - feeling emotional and tired.

This afternoon I’m in the middle of reading a poem to my father by Thomas Babington Macaulay called Horatius( “Hold the bridge with me!”) when he starts to cough and says,

‘I want to be sick’.

I can’t find a bowl in the bathroom and the wodge of tissues I hand to him doesn’t do the trick. We ring for a carer. She takes away his shirt and vest and cardigan to the laundry. I take away the arm chair covers. After a long time, when he’s back in his reclining chair he asks me to finish reading the poem which has seventy verses. He says he has known and loved it since he was 14 years old and,

‘It still stirs my blood’.

I suppose the poem is about heroes and saving the day....

Tonight my husband is my hero - he cooks the supper so that I can write emails. He even grills the smoked salmon which I’d never have thought of doing. It tastes particularly good with his pasta and tomato sauce. And I feel especially cherished.

Wednesday, 23 November 2011

Blood in the Snow

23rd November 2011 Wednesday

Brief moments from today....

I nearly fall asleep on the massage couch of our lovely pussy cat healer, wrapped in perfumes of burning scented oils and the light touch of her very soft hands on my clenched back.

My husband buys me a cup of hot chocolate in an olde worlde cafe. I send it back because it’s luke warm. It comes back piping hot with two marshmallows on the saucer - a sweet apology.

Late afternoon I walk with my father round the grounds of his temporary home. He’s wearing thin jogging bottoms and his coat and pushing a four wheeled trolley in front of him. His cheeks are spotted pink with the cold. It is the first time he has been outside for two weeks.

In the car park of B and Q where we are buying compost I make my husband wrong for criticising another driver. I want to stop doing that - judging him, and then me - even thinking it is like drinking poison.

I don’t feel like cooking tonight - find smoked haddock kedgeree in the freezer and bulk it out with lots of poached veggies - mushrooms and purple sprouting broccoli, green and red tomatoes and a tin of sweetcorn. All slathered with a tahini garlic dressing.

Watch David Attenborough’s Frozen Planet - but I don’t turn away soon enough in the bit where the wolf and the bison start fighting. I keep seeing the blood staining the snow and the white coat of the she wolf who won’t give up.

And later the haze of tear gas hanging over Tahrir square - I wonder how much more dying there will be before the desperate wolves bring down the military bison in Egypt.

Tuesday, 22 November 2011


22nd November 2011 Tuesday

We are on time for our six monthly appointment with the consultant neurologist but he thinks we are twenty minutes early so we wait till he comes to find us. A psychology student, a young woman who looks about fourteen, sits in on our session. He asks my husband how things are. My husband itemizes the things he does. He makes them sound fun. When he says it’s harder to recognise faces the neurologist pricks up his ears. It’s an indication that there is a change in the right side of the brain. All my husband’s language loss is related to the left side.

I say there are no personality or behaviour changes that I’ve noticed in my husband -almost as if there isn’t anything wrong except he says things like ‘pick up the beans’ when he means ‘pick the beans’. The neurologist says it can be very slow - the progression of this disease/disability. He doesn’t say it won’t progress at all. Which is what I want him to say.

Afterwards we walk by the river in golden sunshine. My husband watches the clouds while I tell him about seeing my nephew yesterday. I noticed how engaged he is in the world with a wife and new son, how full he is of young-man energy and enthusiasm. And how afraid I am that without the stimulus of work and people and desire in his life my husband’s world will shrink into small domesticity.

But it’s me I’m talking about - the shrinking bit. My husband is fine. I haven’t got an exhibition of wierd and wonderful clay creatures, starting tomorrow, like my out-of-work husband with his diminished vocabulary.

Monday, 21 November 2011

Doctor's Orders

21st November 2011 Monday

My father’s doctor rings me this morning in response to a message I left him about re-arranging a prostate implant appointment. He is really annoyed. He says I don’t need to keep phoning him, he has everything to do with my father under control and I should relax - ( ie. let him get on with it and stop harassing him.)

I feel shocked and told off - ‘‘ticked off,” as my mother would say. I feel ashamed, like a schoolgirl who got too big for my boots. I expect he has picked up that I don’t trust him. But recently I thought we were getting along. I didn’t know he had re-arranged the appointment because he didn’t tell me - or the people at my father’s home. I think he just feels unacknowledged for all the work he’s doing. I find myself in tears as I hoover the carpets and look for our travel insurance policy and weigh out ingredients for the Christmas cake.

I feel nervous driving my husband’s car to visit my father. Mine is in the garage - waiting for a new clutch - I stall at the lights and for a moment I can’t remember how re-start it. At least the car behind me is patient and doesn’t hoot.

My father has had bad night - with an agency carer and a leaking bag. He doesn’t know who to complain to or even if he should. I explain again the hierarchy of carers to him but he can’t remember who is who. After this morning’s conversation with the doctor I resist the temptation to go and sort it out for him. I leave him downstairs for his supper talking to a senior member of staff who says he’ll come and discuss it later. I hope my father remembers that. I drive home in the dark and drizzle, not crying, and only stall the car once.

Christmas cake in the oven now - the warm spiced aroma scenting the whole house. Time for supper - left over risotto - it tastes even better the second day. Especially if you meld it into balls and deep fry it. Which I’m not going to do tonight. But it’s nice to think about for another occasion. Sometimes it keeps me from going mad - thinking about things like risotto balls.

Sunday, 20 November 2011

Into the Guilt Gutter

20th November 2011 Sunday

I leave for an impromptu breakfast coffee with a dear friend in town. My husband waves me off. He says he’s envious - makes him think he doesn’t have any friends. Not true but I feel my guilt - abandoning him on a Sunday morning - stabbing me in my gut. But I’m learning to breathe it out, discard it in the guilt gutter - like a piece of litter - as I walk to the car - trusting in a bigger plan - for both of us.

He' s still at the allotment when I get home. I start making lunch. I’m suddenly tired of the relentless march of gorgeous, English, home grown parsnips, carrots, Jerusalem artichokes and squashes marching through my November kitchen. I want Italian. I want the hint of summer but the comfort of winter. Risotto of course. But I must rely on the store cupboard. No porcini mushrooms or celery in the fridge so I make a sofrito from chopped white onions and leeks, garlic and a handful of sundried tomatoes using ladlefuls of the soaking stock to stir into the half packet of Arborio rice in the pan. Thank goodness I had some left from last month’s rice pudding fest.

The sun-dried tomatoes make the risotto look as murky as a muddy Devon lane at dusk. Emerald chopped parsley, parmesan and a slab of butter lift it to the heights of deliciousness and we sit at our kitchen table, loving our Italian Sunday lunch. My guilt dispelled for now.

This time next week I will be in Portugal with my two dear sisters. I'm looking for ways to re-frame it - I'm only leaving my husband for seven days if I look at it through my abandonment glasses. Instead of my opportunity glasses - my love glasses.

Friday, 18 November 2011

Dust and Love

18th November 2011 Friday

Today, helping a dear friend clean and pack up her cottage, where she has lived for twelve years, I’m amazed how sticky dust is. Especially the cobwebby dust behind pictures, and the dust glued to the wooden frames and the filmy dust on the glass. Which you don’t really notice when you are eating your meals and watching the TV and not looking at the pictures on your walls. I’m thinking now how long it’s been since I even whisked a cloth anywhere near a picture or a mirror in our house.

Probably even better to wipe the dust off our light bulbs. In our book about 365 Ways to Save The Planet it says doing this increases the amount of light they give off by 40% to 50% and so provides better lighting for the same cost. Obvious really - I knew about keeping your car headlights clean but didn’t think about light bulbs.

I don’t want to write about dust any more. I’ve just watched a U-tube clip which made me cry and which helped me put all the little niggles and perceived problems of my life into perspective. I pass it on to you - with love.

Thursday, 17 November 2011

What If?

17th November 2011 Thursday

What if?

What if I loved it all? Every moment.

The cool, weak cup of tea with my father that I drink to be sociable?

The odd sound of my car engine at seventy miles an hour - could it be the clutch slipping?

The hot black radish that my husband offers me, that burns my tongue?

The bones of the pussy cat’s spine under his soft fur, under my hand?

The voice of the beautiful Indian healer telling me the truth?

What if none of it was good or bad. It was just so. What if I stopped letting fear constrict my heart? How much space there would be inside me for a soul to flourish and shake its blossoms into the world.

Wednesday, 16 November 2011

Deep Rooted Like Tulips

16th November 2011 Wednesday

A quick blog - my sister says she has read research about sleep and that it’s good to be in bed by eleven. It’s already past that - I’m tired, but I notice how I don’t want to give up my late nights alone with myself and this writing space.

This morning I spend time with a lovely woman who tells me about my soul journey, over many lifetimes. She says my heart is tender and that I feel everything can be both a gift and a heavy weight. She says there are many possibilities for my husband and nothing is set in stone. I feel lighter and burden-lifted after her gracious and loving healing, releasing old grief and betrayal. And deep rooted in my heart. Like the red tulips I planted yesterday in black earth.

At home I make a call to my father’s doctor who says the pains he feels in his chest at night are most likely to be re-flux and not angina. I pass the message on to my sister who is sitting with my father in his room and she reassures him. I love mobile phones.

I finish making the mincemeat I started yesterday - stir in more currants and cranberries and slosh in more brandy. I cut up brussel sprout tops and leeks for supper and cook the two huge pans of apples that my husband peeled and chopped this morning. He says he likes projects to get him out of bed. Even if it’s just the washing up. I haven’t washed up for ages.

We sit together on the sofa for our ten minute Mindful Meditation and pay attention to the noises in the street outside - a car revving, children shouting, the rain hitting the window panes. And breathe in and out. Intimate moments before we head out into the dark and wet and the womb of the cinema.

Tuesday, 15 November 2011

An Inbreath, An Outbreath

15th November 2011 Tuesday

Our eyes are closed. My husband and I are sitting in a light, bright room in a building which is part of the hospital. It’s the centre for Clinical and Community Psychology Services. The double glazed window is jammed open with a box of tissues. Our lovely clinical psychologist - he of the exquisite listening - is guiding us through a Mindfulness Meditation technique. It’s about managing stress. Stress as a response to my husband’s brain disease or disability or gift. However you look at it - it’s not going away.

He suggests we practise this simple but difficult exercise for ten minutes a day. Preferably together. Just agreeing to do it feels like taking the first step on a rope ladder, leading up and out of a dark guilt pit. My track record for new routines isn’t great, so after the appointment, eating brunch eggs in our favourite cafe, we discuss how to slot this precious ten minutes into our so busy and so separate lives.

Starting with an in-breath and an out-breath - it feels such a fragile, intimate route to healing.

Monday, 14 November 2011

Elvis And The Echo of Me

14th November 2011 Monday

The house is cold when I come back from my father’s tonight. I pull on my Ugg boots (or rather my cheaper M & S version of Ugg) and several jumpers. My husband leaves for his choir evening and Elvis and I make supper. I turn up the volume of ‘Heartbreak Hotel’

I get so lonely I could die

and start chopping the red chillis and ginger. I take time out to dance to ‘Hound Dog’ -

You ain’t nothing but a hound dog

crying all the time

and strip off a jumper.

The leeks and peppers start sizzling in the pan and I shoot in broccoli florets and the slightly tough kernels of the last allotment sweetcorn, while Elvis croons ‘Love me Tender’

I’ll be yours through all the years

till the end of time.

I stir the pan, swirl in garlic and pak choi, soy sauce and toasted sesame oil and sway and stamp my boots on the kitchen floor to the rhythm of ‘Jailhouse Rock’

Let’s rock, everybody, lets rock.

And while the vegetables in my pan meld and soften into our supper and Elvis thrums in my belly, I hear the faint echo of a woman calling to me. A young woman dancing to her own tune. She hadn’t seen a catheter bag strapped to the thin white leg of her father, she couldn’t imagine explaining to her husband what a drainage survey is. She didn’t know it was the little details that break your heart - and sustain you too.

Like the smile on my husband’s face when he lifts a forkful of stir fried vegetables to his mouth and asks, Is this the sweetcorn I grew?

I say ‘Yes.’

And it’s enough for now.

Friday, 11 November 2011

Moment in a Room at Dusk

11th November 2011 Friday

Today a dear friend reminded me in an email that our lives are felt in moments - and significant moments are simply the ones we remember. When I trawl back through my day to write this blog - to choose a moment or two - I realise how often I’m not even present in my moments or I’m judging and criticising or fretting and complaining.....

A moment I do remember today..... I knock very softly on my father’s door and push it open. The room is almost dark. I can make out his shape in the chair, his head fallen to one side, his legs stretched out on a stool. I can hear his breathing, his sleeping breath. The floor boards creak as I walk towards him, so I stop and wait. He doesn’t wake. I sit down in a hard chair at his feet and look out of the window. Although it’s so gloomy in the room and it’s drizzling outside there is a glowing light coming from the red and gold and yellow leaves of the bushes in the garden below us. And a pale grey sheen in the sky.

I’m afraid the carer will come in with his afternoon tablets. I’m like a guard dog with twitching ears ready to leap up to the door to stop her waking him. I stay like that for a little while keeping my father company while he sleeps. It comforts me to imagine him opening his eyes and seeing me - finding he isn't alone after all.

Wednesday, 9 November 2011

A Peak in Darien

9th November 2011 Wednesday

Tired tonight - can’t write much. Wish I was a poet and could get to the heart of the matter in a few beautiful words.

My father sits in the wing back chair in his new empty feeling room and looks small and white faced. He says my sister and I look like giants compared to the carer who comes to check his catheter. We know her - she worked in the home where our mother lived the few years before she died - a familiar, friendly face.

He says his only problem is that he can’t remember who

looked, silent, upon a peak in Darien’.

It’s a line from a poem which has been snagging at the edges of his mind while he was in hospital. He says my husband would know, at least he would have known - before. But maybe not - he didn’t ever study Keats' poetry. It’s just that my father has this fantasy that my husband knew all sorts of things he never did.

I Google the Keats poem later - it’s called On First Looking Into Chapman’s Homer.

It was ‘stout Cortez’ who looked at that peak.

I’m sure my husband was not familiar with that poem. But he would have known who Homer is and what stout means.

I wish, like my father, that I could be that easily distracted by poetry.

Tuesday, 8 November 2011

Right Place, Right Time

8th November 2011 Tuesday

‘You are always in the right place at the right time.’

This is true - living or dying - it’s thinking you could be somewhere else that makes it stressful.

Today I expected we’d move my father to his new home. When my sister and I arrive at the hospital this morning to pack him up the staff nurse says the doctor has seen him and he needs to stay in another twenty four hours. So we repair to the Boston Tea Party for flapjack and mint tea and re-jig the day.

Tonight in misty drizzle I drive up the M5 towards Taunton. Around Junction 25 I think I can smell smoke damage in the air from the accident on Saturday. Inside the Odeon cinema my sister and I wait for our friend - it’s our farewell evening to her. She doesn’t arrive. I call her. She thought it was tomorrow. Maybe there was a good reason she didn’t drive the M5 tonight.

Back home, while my husband is out making his clay creatures, I unwrap a new cake of birthday soap and soak in a scented bath with a glass of red wine. Definitely in the right place at the right time.