Thursday, 31 May 2012

Tell Me Not To Be Scared

31st May 2012 Thursday
You’d better read this for me, says my husband. Not sure I understand it.
It’s in a fat brown envelope from the job centre......lots and lots of words on lots and lots of pages.....appeal unsuccessful.....not in the category of limited ability to symptoms of ‘overwheming fear or impending death’ in social situations...benefits denied......will go to tribunal.....
Tribunal sounds scary. My husband goes to his ceramics class. I phone my sister,
Tell me not to be scared, I say.
You don’t need to be scared, she says.
Forms......the system.......authority figures - it’s like opening a drawer full of snakes for me - I must have done something wrong. And the person who used to read all the forms and fill them in for me is lost.
I make an appointment for us at the Citizens Advice Bureau - but not till the middle of June.
Driving home from Mindfulness tonight I think about supper and dream up a plate of rigatoni -  slippery hot with pesto and garlic, chesnut mushrooms and spinach. 

A plate of safety.

Wednesday, 30 May 2012


30th May 2012 Wednesday
We are sitting in a light bright room at the M S centre where they offer Hyperbaryic Oxygen treatment - also supposed to be helpful for people with brain conditions. My husband is signing up for 15 sessions in a sealed chamber where he’ll breathe in 100 percent oxygen through a mask for an hour for 5 days a week. I discover the woman explaining the process to us is a neighbour who lives a few doors down the road but I’ve never spoken to her in the nine years we’ve lived here.
She gives us huge amounts of information which my husband says he mostly follows. Except for the word sprinklers in the context of ‘in case of fire’.  And he doesn’t know what the Jubilee is. I already feel drained from an emotional session with our lovely clinical psychologist first thing this morning.
Not sure why I’m writing this tonight. My day has been mushy with thoughts of shoulds - the house feels messy and chaotic and needs cleaning, the garden needs watering and planting, emails need answering.  My enthusiasm for any of these things is zero. We escape to the dark womb of the cinema and a box of popcorn. 

And I'm trusting I will feel different in the oxygen of a new day. 

Tuesday, 29 May 2012

Too Hot

29th May 2012 Tuesday
It’s too hot (24degrees) to walk at midday after our scrambled eggs, toast and dark gold marmalade brunch. So we wander along the estuary and stop at a bench in the shade. The water is a sheet of mirror glass, which parts into ever widening, shimmering ripples when a little boat chugs past. 
I could have stayed there forever in the still hot air, letting the peacefulness sink into my skin. But I thought we were hogging the only shady spot with a wonderful view and should give it up to someone else.
So we drive to the garden centre and stock up on bedding plants - pots of pansies and begonias, trailing nasturtiums and red geraniums. And a tray of zinnnias  - all clashing candy colours -  because they remind me of my mother and my African childhood.
I can't tolerate the heat like I could then so I’m going to wait till it’s cooler to plant them out in the garden. If I can find a place where the cat won’t pee on them or dig them up. At least he’s not being sick any more - which is a kind of miracle.

Monday, 28 May 2012

Switching Off

28th May 2012 Monday
I have received a form from Devon Carers - a Flexible Break Grant Application. It’s some money to spend on me - “ to enable you to switch off from your caring responsibilities by taking a short break from caring”.

I don’t know how to fill it in. Don’t think it applies to me yet. My husband doesn’t know where the Ukraine is or the name of the pub he walked to today with my brother-in-law - (the Turf Locks.) But he drove them both and was out of the house for at least five hours. That was a break for me.  Knowing he was safe and happy and in good company, while I sat in the sunny garden of a dear friend and drank tea. Maybe my brother-in-law should have the grant.
I don’t think I ever switch off though. There is always a little red warning light pulsing in my  inner field of vision - keeping watch, keeping me awake  - just in case. I don’t think you can apply for compensation for that. You can’t take a short break from your own heart beat.
But sometimes when I lie still on the sitting room floor, like I did tonight, with my hand on my belly and feel it rise and fall, I can imagine a place of brightness instead  - dimming the fear of that glowing red light -  one soft breath at a time.

Sunday, 27 May 2012

Coconut and Marigolds

27th May 2012 Sunday
I find cooking and making food such a comfort at the moment. Sharing it with a group of dear lovely women like I did this morning is even more nourishing. My contribution to the laden table was a garlicky, gingery, almond, parsley and coconut pesto ( thank you, Nigella, for the inspiration - based on her spicy green coconut chutney) and roasted Provencal veggies. I forgot to bring the grapes for dessert so we had flapjack instead - made with more coconut oil - not just good for my husband’s brain -  hoping it’s good for mine too.
Being with my sisters today, I miss my father more than usual.
My husband comes back from the allotment with two huge bags of marigold seedlings which he hasn’t got room for. They grew wild in my father’s front garden - clumps of orange and gold welcome stars as you walked down his drive in the summer. I’ve got lots of gaps in our front garden since all the pruning, so I’ll plant them there. A better place than at his grave, and my mother’s, which I never visit now.

Friday, 25 May 2012

Not Bearing It

25th May 2012 Friday
I keep forgetting that we can’t do ‘normal’ any more. Our Friday night plan is to go out for a  meal and then watch  a DVD  - The Taming of The Shrew with Liz Taylor and Richard Burton - ( who are they? asks my husband.)
I have a money off voucher for a pizza at Bel Italia but discover it doesn’t apply on Fridays. We go to another restaurant. My husband doesn’t like the location of the table which is squashed in a corner. The manager offers us a free glass of bubbly to compensate. It comes with a long fat loganberry bouncing on the surface. My tomato tart is crisp and sharp with a balsamic dressing. My husband coughs and sneezes and blows his nose all through the meal. The music is so loud and the tables so busy we have to shout to hear each other.
Back home my husband says he needs to lie down. He looks exhausted - keeps taking deep breaths, says he’s tired and stressed. We lie on the bed and I stroke our thin, half shaved pussy cat who got there before us. I feel dislocated -  like I’m staring down a tunnel with no light at the end - at a loss of how to do this, how to be with this person who I love, who is changing into someone I don’t recognise.....
After a while I make him cup of tea and he says he’ll come down and watch the DVD in ten minutes.
When he does come it’s too late and we watch the news instead. Pictures of fighting in Beirut where my pregnant neice and her husband live. I couldn’t bear it if anything happened to them.....

Thursday, 24 May 2012

Thoughts Are Not Facts

24th May 2102 Thursday
I wake early and compose two difficult emails in my head. Then get up and send them - my heart fluttering.
Coffee and catch up with two dear friends in busy cafe - why is it so nice?
Mix up left over cold new potatoes with mustard and lemon mayonnaise for our avocado lunch - too hot to eat outside.
Warm, understanding responses to my emails about changing our financial advisor. All that worrying for nothing.
The pussy cat laps up his chemo tablet crushed up in yogurt - bitterness disguised with drops of honey.
Talking to a dear friend on the phone about diets - we decide the best sort is the Kindness Diet.
Tonight, driving back from Mindfulness Meditation class, an orange ball sun hangs low in a hazy sky just like a Monet sunset painting. The perfume of the May blossom blows into the car through my open windows and the hedgerows are a frothy mass of cow parsley.  My husband has cut me a bunch of pyracantha blossom from the allotment  -  a gift of scented white lace to welcome me home.
This evening I have a new mantra from Jon Kabat -Zinn - 
So when I say to my husband tonight, standing by the sink,  ‘Don’t leave me’, it’s just an old fear rooted thought. Nothing happened in the kitchen - just a mental storm in my head.  As light and insubstantial as May blossom stars falling into the wind.  

Wednesday, 23 May 2012

Spilt Wine

23rd May 2012 Wednesday
A bit too grumpy to write much tonight.....sad about the pussy cat -  he’s started the chemo - I’ve decided to trust the vet - asked for nutritional supplements to support his immune system while the drugs are in his system. We’re just buying time for him. His appetite is better -  he hasn’t been sick.
My husband’s aunty comes to lunch. We sit at the table with the double doors wide open onto the dazzling garden - it’s too hot to sit outside without the umbrella which is broken. I grill our allotment asparagus and toss it in olive oil and crushed garlic - lovely with the first Jersey Royals. She eats less than the pussy cat.
Much later we sit on the sofa and listen to a Mindfulness Meditaton CD. I keep dropping into sleep, wandering off in my head, my attention as slippery as hands on a greasy pole.
My husband drops a full glass of red wine in the kitchen. It smashes on the counter, splashes up the walls and down the cupboards and spreads like a pool of pale blood across the floor.  He’s much more upset than I am. He says he’s had a bad day and dips into a spiral of ‘everything I do is crap’.  Which I find hard to listen to. I can’t work out if he’s getting worse or if he’s just beliveing his negative thoughts .....he can’t follow one conversation so he thinks he’ll never follow any conversation ever again....
I give up trying to talk him out of it. I can feel his depression seeping through my skin like spilt wine..... tonight I can’t make room for his sadness while I’m brim full of my own.....

Tuesday, 22 May 2012

Half A Mohican

22nd May 2012 Tuesday
The doors and windows have been open all day letting in the hot blue sky - and the flies. There’s a demented black one now swirling round and round my head  then getting frantic inside the paper lantern.
My husband says, ‘ I don’t know why I’m so shagged out.’
I think, Maybe because you had a colonoscopy yesterday - after waiting for three hours in a hospital gown....maybe because you’ve just been working on the allotment for four hours in the hot hot sun....with no water to drink.....maybe because it’s emotional having a brain disease and a stressed out wife and a sick pussy cat.....
At 7pm tonight the vet rings. It is a T cell lymphoma. The pussy cat can start the chemo tablets tomorrow. He’s sleeping now  - all curled up on the sofa so you can’t see the gaping grey patch in his side where they shaved away his fur to do the scan - like half a Mohican....
My husband has already gone to his ceramics class. I dissolve myself in two back to back episodes of ‘Mad Men’ that I took out of the library. The glass of wine doesn’t help but the fat squares of Waitrose dark chocolate are a numbing antidote. Which doesn’t last.

Sunday, 20 May 2012


20th May 2012 Sunday
On the phone the vet says he found an abdominal mass inside the pussy cat. A tumour.
It means lymphoma or carcinoma. Can’t be sure which till the results of the bioposy come back on Wednesday. Carcinoma is the worst. It’s treatable with chemotherapy in tablet form. Three to nine months life expectancy.
My husband’s is typically eight years for his disease. But it could be much longer if he stays healthy. I can’t think about it like that though. No one knows the length of the future.
I just want to hold the little bony body of my pussy cat in my arms and feel his silk ear against my cheek. It would only be for a few seconds - he won’t let me hold him for longer than that. 
In the kitchen this evening after I put the phone down to the vet, my husband holds me in his arms for a long slow time. His jumper isn’t as soft as the pussy cat’s fur. But I like listening to the sound of his heart beat next to my cheek.

Saturday, 19 May 2012

Home Alone

19th May 2012 Saturday
All day I’ve been home alone. My husband leaves early with my brother-in-law for a fishing trip off the coast at Weymouth for my nephew’s stag do. I make him a smoked salmon bagel for the picnic on the boat. 
I’m restless - waiting for news of the pussy cat. When the vet rings he wants my permission to do another X-ray and more blood tests. It’s not just the worms. Could be inflamatory bowel disease or a lymphoma.
Usually I love being on my own with the house to myself - pottering, feeling into my own rhythm. But I’m never really on my own with the pussy cat somewhere snoozing on the bed or asking for a drink or squeaking round my ankles while I make lunch. Or throwing up on the carpet.
Today I imagined what it might be like with no little furry creature calling me out of bed in the morning or padding down the stairs when I come home or running to the fridge when he hears me opening the door.
I had a glimpse today of life with no pussy cat at home. And then I tried to imagine a life with no husband at home. And I wonder how they do it, those people I know who live alone - even from choice. What kind of extra root of courage you need to step into each day, and to climb into bed each night knowing it’s only you. Knowing it could be me.
It’s midnight silent now and I keep thinking I can hear the pussy cat meowing outside - calling to me. Letting me know he’s there.

Friday, 18 May 2012

Worm Burden

18th May 2012 Friday
Tonight the pussy cat is in the vet hospital on an IV drip. From the blood tests and X-ray they found a worm burden, anaemia, dehydration, and weight loss.
I’m trying to forgive myself for not going back to the vet sooner. For letting him get in such a bad way. For neglecting his symptoms for so long  - trying to treat him myself with homeopathy and distance healing not knowing what was wrong, disagreeing with the vet’s original diagnosis of pancreatitis. 
And it may not only be the worms - we have to wait and see tomorrow .
I’m wondering what else, who else I’m neglecting. What burdens I could put down. Who I need to forgive. Me for starters.

Thursday, 17 May 2012

Angel Delight and Acceptance

17th May 2012 Thursday
My friend from Sidmouth is held up in the Devon County show traffic. So instead of going to buy curtains for her new home we settle in with cups of tea and the open tin of flapjacks on the table between us, a big jug of lilac blossom scenting the kitchen. We decide talking and crying and laughing are better than shopping. 
After lunch of  left over mushroom risotto I forage in the aisles of Morrisons for the most refined foods I can find like white bread rolls, Rice Krispies, lemon and lime jelly and wine gums. From tomorrow my husband has to have a no fibre diet for two days, then liquids only for two days in preparation for his colonoscopy on Monday. So no vegetables or fruit or wholemeal bread or even jam with pips in it. And no red jelly in case it stains his insides.
I didn’t realise my commitment to fresh and whole and living food was so total .My dedication to organic spinach so religious. I discover, while searching for jelly, that you can still buy Angel Delight - my favourite thing in all the world when I was a teenager, newly arrived on the ship from Africa, and going to school in Bournemouth. I remember the sweet frothy empty texture of it  - but I wouldn’t be able to put it in my mouth now.
When I open the front door tonight after my Mindfulness Meditation class my husband is playing Handel’s Messiah full blast in the kitchen and breaking eggs into the poacher.
One piece of toast or two? he asks with a glass of wine in his hand.
We aren’t supposed to be drinking in the week. In the class tonight we were talking about the practise of acceptance and allowing and letting be. A first step is to stop trying to make things different and just notice how they are - or ‘Don’t argue with reality’ as Byron Katie says.
So I say, ‘Two pieces, please. And thank you for making supper’. And I give him a hug while the steam from the saucepan floats around us  -  a warm, clean mist, dissolving those judging words I nearly said.

Wednesday, 16 May 2012

Losing The Battle

16th May 2012 Wednesday
7am - it’s possibly a mistake to try and make a wild mushroom risotto while at the same time getting dressed, washing my hair and dealing with pussy cat vomit and making sure the asparagus doesn’t overcook......up and down the stairs wooden spoon in one hand, hairdryer in the other....trying to get lunch cooked at breakfast time, before my friend comes at 11am.
9am at the hospital for my husbands preliminary endoscopy appointment. These questions trip him up - 
Do you wear dentures?’
‘Have you got any metal plates in you?’
‘Did you have barium last time?’
Back home I carry on galloping round the kitchen while my husband goes upstairs and lies on the bed. When he doesn’t come down I go and see him. He looks tired and miserable.
It’s a beautiful day why don’t you go down to the allotment and do some weeding? I say.
He says he feels bleugh...doesn’t want to..... but he might later.
My patience deserts me. I’m so sure I know what would make him feel better. I want to scream and throw saucepans against the wall. I wash up very spashily instead. And I say he can’t eat a flapjack because they are for lunch. Then I know I’m being ridiculous. He leaves for the allotment 5 minutes before my friend arrives - and I dont’t know who is more miserable  - him or me.
My friend is kind and symathic...we walk to the allotment and find my husband weeding the parsnips - he’s smiley and cheerful - offers her lots of rhubarb which she loves. After lunch  - including unctious risotto and coconutty flapjacks he gives her the tour of his ceramics which she also loves.
Tonight I’m left wondering what battle I think I’m fighting....all I know is that it’s losing one - trying to be right  - swimming up the river against the current....instead of listening with my heart.

Tuesday, 15 May 2012

What About You?

15th May 2012
A lovely woman from the carers support team at Age Uk sits on my sofa and tells me about all sorts of things that are available to us. Like Take a Break Vouchers and Walking Groups and a Men in Sheds Scheme and an advice service about how to navigate through the benefits warren. 
She’s sympathic and says my husband is so young to be going through all this. This charity usually deals with much older people. I cry a bit.  Especially when she says,
What about you - what do you need?’
I don’t know. And I don’t know how much of what’s on offer we’ll use yet -  but I’m so moved that it exists at all. I still can’t quite get used to the idea that I qualify as a carer - that’s not what I am in my head.
While I’m finding out what it might mean my husband goes off to buy lettuce seeds. He discovers the hand brake in his car isn’t working. He has to leave it in the garage for possibly three days, which complicates all our separate travel arrangements. I try and imagine what it would be like if we had to share one car. Although it’s probably an extravagance to have two cars, at the moment it feels more like a life raft on a violent sea - keeping our independence afloat.
Luckily my husband has a bicycle too.....

Monday, 14 May 2012


14th May 2012 Monday
The  pussy cat throws up again and again. I spend hours on google researching chronic vomiting in cats - all a bit inconclusive, easy to misdiagnose. I ring another alternative vet in Crediton. They don’t ring back. The pussy cat sleeps all day on our bed. He’s out in the night garden now, supperless. The less he eats the more I do.
I think about the word chronic - long standing, always present, constantly troubling. Like  grief. Or my husband’s brain disease.  It’s the opposite of acute which is sudden and severe -  like death. There is something hopeless, inevitable about chronic. Like the word degenerative. At least when something is acute you know it’ll be over soon.
But then I suppose, unlike death, you at least have another chance to find a way to live and love differently however chronic the situation appears. Tonight the tag on my Yogi tea bag said 
Heaven is in the depths of patience.......
I think I also suffer from chronic procrastination. Like making jam from the strawberries in the freezer which have been there since last summer......even though I like making jam.

Sunday, 13 May 2012

Art And The Tart

13th May 2012 Sunday
We are sitting in the narrow courtyard of a cafe in Ashburton waiting for our food. I’m regretting it - wishing we had left the minute I saw the ashtray - a scallop shell -  overflowing with cigarette butts on the table next to ours. Sweet wrappers and more cigarette butts litter the ground.The flowering shrub overhanging our chairs is humming with wasps. I start reading a Sunday colour supplement magazine to take my mind off it. My husband lays down the Observer after glancing at the front page, sits back and turns his face to the sun. It feels unfair to read when he can’t. Something we don’t do together any more.
Later we wander around open barns and another courtyard - clean, bright and cared for and full of wonderful paintings, photographs, and quirky clay models - part of the Devon Six Days of Art Exhibition. My husband is enthusiastic, he talks to the artists, tells them how impressed he is - again and again. He’s inspired by the paintings of clouds. Today I am overwhelmed by his exuberance - wanting to distance myself, wanting just to look and absorb and wonder and not comment. Then I catch myself wanting it to be different from the way it is....take a breath and try again....
To blot out the memory of our horrible lunch this is the tart I make for supper  :
Roll out a sheet of puff pasty as thin as you dare. Smear the base with a black olive, garlic and parsley pesto, slather on a layer of long and slow fried onions, scatter a mixture of asparagus tips, their chopped stems and fine sliced courgettes over the top and finish with crumbled feta cheese, Parmesan shavings and some drizzles of a fruity olive oil. Bake till the pastry is buttery crisp,the asparagus is tender and the cheese is molten gold.
We eat it in front of the TV watching Glenn Close being the wicked red-lipsticked Cruella de Vil in A Hundred and One Dalmations. Or as my husband reads it as One O One Dalmations. And asks me who Disney is.  But he really likes the tart - especially as he grew all the asparagus spears himself.

Saturday, 12 May 2012

Best Bath

12th May 2012 Saturday
The best bath ever is the one you sink into after a whole day in your garden, pruning and lopping and weeding and planting.... especially in the company of a wonderful woman garden mentor.....  when the hot water stings the stratches on your arms and you realise your nose is sunburnt....and you know there is a pot of savoury rice on the stove for suppper, all sticky with leeks and mushrooms, pink speckled with the stems of ruby chard..... your husband brings you a glass of  cold white wine..... you feel your stiff back dissolving in the scented steam......and you don’t think about what if?.......for at least an hour.....

Friday, 11 May 2012

Clear Light

11th May 2012 Friday
I share an emotional bowl of porridge ( plus honey, hazalnuts and banana) with a friend in a delicious new cafe in Exeter. She helps me to plant some signpsots in the desolate landscape I see stretching into my future.Ones I can read in the dark.
What if I  chose this journey at this juncture of my life for a reason, to learn how to love, to give something back, to wake up? To accompany my husband on his journey - all the way? As if there was nothing else to do. And to give up all those things I thought I wanted for us in our mythical Happy Ever After. That this could even be better than that. Athough it doesn’t look like it right now - unless I’m wearing magic glasses.
I spend the afternoon in the garden with the slugs and snails which have come out after the rain like a crunchy rash all over the hostas and hydrangeas.
This evening the sun sparkles into the kitchen highlighting all the smeary marks on  the patio doors. While I’m waiting for the potatoes to roast I get out the clever window cleaner gadget I’ve had for years and wipe away all the grime.
Letting in clear light.

Thursday, 10 May 2012

Before Another Year Goes By

10th May 2012 Thursday
My husband is up early to make a phone call to the Dept of Work and Pensions. He’s had a letter saying his unemployment support allowance is coming to an end since he’s only elegible to claim for one year. But they will re-asses it. I offer to be part of the conversation in case there is anything he may not understand. He says he doesn’t need me to. He hangs on for half an hour but  they say call back at 8am tomorrow as they are on strike.
May is the 'hungry gap' month at the farmers’ market  so I only buy white sprouting broccoli, salad leaves and a quarter of a Crown Prince squash. And a tall bundle of midnight blue irises.
I’m trying to leave the house on time to walk with friends and notice the pussy cat has been sick on our bed. On the cream bedspread. I shove it in the washing machine - feel hopeless about him ever getting better.
We are three drowned rats after our walk by the Otter River, which rushes by us like a sea of coffee. We are talking so much I don’t notice the rain seeping in under the cuffs of my jacket. The dampness brings out the perfume of the May blossom and violets hiding in the green banks.  And our apetites for lunch. 
Later my sister visits me after her shopping expedition to buy an outfit for her son’s wedding. We imagine our big sister on the plane to Beirut to visit her daughter. She is taking her some maternity clothes from one of her friends. 
She also brings me eight letters written on airmail forms in my handwriting. She found them in our father’s papers that she’s been sorting out. They date from 1962 to 1982, all except one to my Grandmother, written to him when I was at shcool, on an exchange in France, at university, on holiday in Cornwall, in London starting a new job.
One starts,
Dear Pa,
Tomorrow I am 17, so I think I owe you a letter before another year goes by!
I’ve been wondering what else I must do before another year goes by. 

Wednesday, 9 May 2012

Hell Hole

9th May 2012 Wednesday
The wind is rattling my window like a child having a  tantrum. It’s late, too late to blog... don’t know why but I start reading an old diary from October 2007.
On October 10th there are two entries.
This is the first - 

Yesterday at Amnesty International in Taunton Pa stands in front of twenty people and talks for an hour, with no notes, about the beginning of the colonial era in Africa. And then his days in prison  - in The Hell Hole - in Harare in 2003.  He never ceases to amaze me.
This is the second - 
In the bath last night R says how terrible it is for him not to be able to remember words. He says his vocab is going. I’ve noticed it too. What he has relied on all his life - his ginormous vocab and memory......and now he can’t recall words - words he knows he knows. I’m beginning to feel an aura of fear around us. What if? What if? What would it be like if? I can’t imagine it.
I’m glad I couldn’t imagine it then. I had no idea -  that my own personal Hell Hole could ever become reality.

Tuesday, 8 May 2012

Biscuits and the Heart

8th May 2012 Tuesday
Blogging in bed tonight - sort of cross legged - the pussy cat is curled up in exactly the place where I want to stretch out my legs.
My husband is out on Dartmoor making another weird and wonderful creature.
Earlier I succumbed to a piece of hot buttered toast with raspberry jam after my baked bean supper. We had sea bass fillets for lunch with a gingery, garlicky, spring onion and sesame seed relish and roasted squash with aubergines and Pakchoi. We usually have a salad lunch but I miscalculated at the market this week  - we’ve run out of green leaves already.
One of my Mindfulness homework exercises this week is to write down an unpleasant experience and notice all the thoughts and feelings associated with it. This is what I noticed today.
My husband and I are walking by the river and talking - about communitation.
I say, I think it’s intrusive and annoying if you keep offering someone a plate of biscuits, or slices of ginger cake if they have already said no. Making him wrong.
He says, I think it’s helpful and makes them feel looked after. It’s a way in to have a more meaningful conversation.  Deflecting the attack.
I feel hopeless and despairing, judgemental and rightous....
Then we unwind it a bit more and I realise that the plate of biscuits is a substitute - a longing for contact.....for emotional connection......he just doesn’t know how....
I say ‘You could try just saying how it is for hard it is to be part of a conversation when you don’t know what people are talking lonely that is....
You could try offering your heart - instead of biscuits.
He says he’ll think about it.....and my heart melts.

We look out over the estuary and wonder where all the birds have gone.

Saturday, 5 May 2012

Being Happy

5th May 2012  Saturday
 At the allotment tugging clumps of weeds and grass out of the carpet paths between the beds - sounds like hair being scrunched from a scalp....
A blackbird singing to me out of a cloud of pear blossom while I bend and dig and shake  showers of soil from matted hair roots.....
Not saying to my husband  Aren’t you planting those tomatoes too close together? - but still thinking it.....making him wrong.....and then forgiving myself.....remembering  those words - 'Would you rather be right or happy?'
Loving using my new purchace  - a super sharp mandolin ( inspired by watching Rachel Khoo in her little Paris kitchen)  - slicing up a salad of slithers  -  red peppers and carrots, radishes and cucumbers in super quick time.....
Resting my sore back on the sofa, reading the mouthwatering words of Tessa Kiros in her jewel of a recipe book - Falling Cloudberries - wanting to dive into the photos and dip a spoon into her Lemon and Vanilla Jam, fork up some Champagne Risotto.....
And this evening, heart stopped by the sight of next door’s Montana Clematis pouring over our side of the fence like a cascade of gleaming white stars..... and the apple blossom  - a canopy of pearly moonlight in the nearly dark garden - shining like hope.....

Friday, 4 May 2012

An Echo In My Blood

4th May 2012 Friday
Up till now I haven’t met anyone else with semantic dementia, or their partner. Everything I’ve heard or read about the frontotemporal dementias hasn’t really fitted my husband’s symptoms - except the loss of meanings of words. Which isn’t nearly as bad as some of the things he could have. So I’ve felt in a sort of protected bubble.
Today I met a lovely woman whose husband has had semantic dementia for much longer than mine. They are 8 years further down the line of this ‘living bereavement’ as she calls it. Her husband now needs much more care -  which he has at home. Some of his symptoms are similar to my husband’s. Only worse. Or better depending how you look at it.
We talk in a noisy cafe with lunch aromas wafting up the stairs. She is kind and helpful, offers her experience and support.  And for the first time I hear an echo in my blood, a faint pulse calling from a future that I’ve told myself won’t happen. Now I see that it could.
And it makes my heart go out to my husband - who I think is struggling much more than I realise - the effort it must take to try and understand everything, all the time. Which may explain why he gets so tired. So this afternoon, when we come back from our walk, he says,
I’m just going to have a little lie down. You can come and join me if you want. 
And I say I will. It suddenly seems more important than doing the hoovering.

Thursday, 3 May 2012

Backing Off

3rd May 2012 Thursday
I’m stuck behind a learner driver in an annoyingly bright yellow and black car. She’s bumbling along at  much less than 20mph like a slightly drunk bee. I’m usually patient with learner drivers - I was there once, leaning, making mistakes etc etc -  but this afternoon all my reasonableness flies out of the window. I drive too close to her.
Then I suddenly realise what’s in my face. I’m the learner now. Trying to find my way on a new bumpy road, crashing the gears and not looking in the rear mirror. But no-one is sitting on my bumper saying you should be going faster. Just the opposite - they are loving me, letting me go at my own pace, holding my hand, pointing out the bollards, the stop signs.
I back off from the car in front of me and although she doesn’t hear me I tell her I’m really sorry and wish her well.
Which is what I need to do with my husband - back off, say sorry -   because I learned today that when I’m being too responsible for him, imagining I know what’s best for him, wanting him to be different, then I lose sight of us both. 
And that is the road to hell.

Wednesday, 2 May 2012

How Do You Live From Your Heart?

2nd May 2012 Wednesday
We have been told about an amazing man from Mexico who performs miraculous healings. He’s visiting Newton Abbot this week. Our friends say, ‘you must go.’
I imagine him laying his hands on my husband’s head...... and then he’s all better -  like he used to be.
We wait for him - this healer -  about thirty of us squished into a very small hot room with the strains of Ave Maria playing round our heads. When he comes in he’s wearing a mask across his mouth and a heavy woven blanket. His eyes are pale and fierce. We all join hands and he walks around to each of us, tapping, jabbing at a chest, a leg, a stomach and holding his hand on a head, looking into our eyes. 
Afterwards he asks, through an interpreter, if anyone has questions. He replies to one woman that she must live from her heart. My husband asks him,
‘How do you live from your heart?’
You know,’ he replies.
My husband says he doesn’t.
After a bit, when it’s clear my husband won’t be satisfied, the healer says,
‘You must work on yourself.’
After he leaves the room a sweet woman talks to us about the best diet to eat - basically vegan but allowing some eggs and honey. We are invited to come back again.The mission of the healer is not just to heal us but to heal the world.
I guess today’s miracle was realising that when I accuse my husband of resistance I don’t want to face my own.....noticing how often I want to be right .....and how marvellous that I have another chance in the very next moment to live from my heart instead. Even if I don't always take it.

Tuesday, 1 May 2012

Cheese Straws? What are They?

1st May 2012 Tuesday
You were not meant to suffer and to die’.
I read these words this morning and they help me to remember what really matters - practising loving kindness for a start. And so I begin to climb out of yesterday’s dark tunnel where led I myself- all by myself - imagining the worst. Smiling at my husband is the first thing to do even while he’s still drowsy on the pillow.
The second thing to do is to take a deep breath with no resentment, and describe to him where Moretonhampstead is on Dartmoor, where we are going later today. We have found a tag for this word to help him locate it by saying,  ‘it’s that little town where we buy those cheese straws in the delicatessen in the main street.’
But now he says, ‘Cheese straws, cheese straws - what are they?’
 I take another deep breath.
He does recall them though when we arrive outside the shop and then walk down the street with a greasy bag of high baked, cheesy, pastry sticks, the sun like a blessing on our backs.
He also remembers the walk up to Bellever Tor which we took last year and even the group of school children we met and which route led us back to the car.  He leads us again, through planted pines and up waterlogged tussocky paths, climbing to the top outcrop of rocks, stopping to give directions to two Dutch tourists on the way.
On the way down he slips on the lethal mud and falls backwards into a brackish bog. He’s wet but not wounded. I wonder if we should use that as the tag to remember Bellever Tor. For the next time we come.
Back home I take the advice of the lovely woman who talked to us at Age UK  this morning. I pick up the phone and register myself as a carer.