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.

Cherished

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.

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.

Shrinkage

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.

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.

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.

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.

http://www.leader.co.za/article.aspx?s=43&f=1&a=3090

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.

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.

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.

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.

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.

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.

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.

Ninety Two Today

7th November 2011 Monday

I wake up with a streaming cold.

I talk art with my hairdresser as she snips away at my head with her scissors.

I try on a pair of brown leather ankle boots. They remind me too much of Chelsea boots men wore in the sixties so I leave them in the shop.

We eat last Saturday’s fish curry for lunch with my husband’s green tomato and chilli chutney. At least he eats it - too pungent for me.

My sister and I meet in the car park of the new home my father is going into. The manager is warm and soothing. We choose one of the two rooms available and discuss where to put his recliner chair and TV. You can see sheep in a field from the window.

At the hospital my father is lying on the bed in a crooked way. He has been fitted with a catheter and he says he’s afraid to move in case the tube comes out. We call a nurse who reassures him. His visitor doesn’t stay too long and he opens our presents including a soft fleecy dressing gown in blue stripes. Throw the other one away, he says. He blows out the two candles on his birthday cake and doesn’t seem to mind that it’s raw in the middle. But I do.

Back home my husband makes cheese on toast for his supper and peels a whole bulb of garlic for me to chop up and throw in with the tomato quarters I’m planning to roast. I’m afraid my cooking is lazy at the moment - not doing anything new - going for what I’ve made a thousand times before. So I don't have to think. I put the sticky ginger birthday cake in the oven under the tomatoes and bake it for another hour.

Last night I slept in the spare room because my husband was snoring. I’ll probably sleep there again tonight because I’ll be snoring - my nose all blocked up. But at least I won’t be worrying about my father in wet sheets.

Hug Quota

6th November 2011 Sunday

For a little while yesterday my father had all of us around his bed - three daughters and a grandson. He opened some cards and presents from his other grandchildren.

As we were leaving he said,

What I miss most in hospital is hugs.

Tonight my husband and I are driving back from an art exhibition which didn’t inspire or uplift me in any way, and just before we turn into our road I say,

I wish I could go and give my father a hug.

Well I’ll take you, says my husband.

But in the end I decide against it. I remember my sister is with him and I’m so grateful she is.

I wonder how long a hug can last though. A dear friend told me that we need at least five hugs a day. My father hasn’t had his quota then. But I’ve had wonderful hugs all day from lots of gorgeous women and my lovely husband. So I will have to save up extra big hugs for my father tomorrow on his 92nd birthday.

Pile Up

4th November 2011 Friday

It rains all morning. Before breakfast I hoover the floors, make up the spare bed for my big sister coming to stay from Luton, and bake my father’s birthday cake. It’s his favourite - my own recipe for a Sticky Ginger Cake with three kinds of ginger in it - ground, fresh and crystallized. I replace the grated apple in it with carrot though - I think the apple makes it too gooey. My husband sits at the table and glues his broken lizards.

In the car driving to our first couples counselling appointment my husband says our tax situation is worse than he thought. He’s negociating with the accountant but it sounds mind bogglingly complicated.That old tight anxiety about money twists my gut.

The two counsellors are lovely - we talk more than they do. At the end of the session they ask what do we want to focus on. They leave the room to talk about us so we can talk about us too. I say I want to explore our loss of intimacy. My husband agrees. The councellors agree. But I feel inexplicably angry and depressed.

We visit my father in hospital. I want to talk about his situation but he wants to talk about how much noise the chairs make when they scrape on the floor. My husband takes a swig of my father’s Dandelion and Burdock juice. It doesn’t matter at all but it annoys me beyond measure. We leave him playing scrabble with one of the other patients. And I put in a call to the doctor.

In Sainsbury’s we bump into my husband’s colleague who took over a lot of his clients when he left the company. The colleague says how much my husband is missed. And what interesting people his clients are. And he’s making a lot of money. I feel my husband’s pain like a black waterfall coursing through him. He buys six bottles of wine.

At 9.30 I pick up my big sister from the station. She helps me park the car in a tight space as the back windscreen is misted up. But then I can’t close the passenger window. It’s jammed open. The lovely RAC man comes and can’t mend it - needs a new motor - but he jams it shut. He says there has been a terrible pile up on the M5 - people killed. I know my sister and her husband are driving back from Bristol. My big sister calls her on the mobile - they are stuck in the tail back. Safe.

The RAC man say he’s heading over there now. I’m thinking about those people whose lives will never be the same again. Selfishly I’m glad it wasn’t our turn tonight. Broken cars can be mended.

Seductive Cookware

3rd November 2011 - Thursday

I am invited to a cookery demonstration tonight. It turns out to be more about what you cook the food in, what gadgets you use to prepare it, than the recipes. The stoneware casserole dishes, the spatulas, the melon ballers, the chopping machines, the saucepans and the knives. It’s all high quality - seductive cookware. I can see why you’d want to buy it. Or even better host a party and get some of it free. It taps into my love of kitchen shops - on a par with my love of browsing in bookshops, and the stationery department of Smiths. And Waitrose.

But I also know that you can do most things in a kitchen with a chopping board and a knife. Of which I already have several. And I know that if I made a baked Camembert with a filling of chopped pecans, green chillis and apricot jam ( which was the demonstration recipe tonight) it would taste just as horrible cooked on a stone plate as cooked on one of my old baking trays.

Mind you, there was a glass batter bowl/jug with a handy lid which I thought would be very useful. I might just order one of those - or several of different sizes. And a percentage will go to the charity Age Concern. And I did win a raffle prize of a cheese knife which could be a gift for someone who eats a lot of cheese......I think my husband had cheese on toast for supper tonight - that delicious savoury smell was hanging around the kitchen when I came home - making me hungry.

Pyjama Saga

2nd November 2011 Wednesday

Feeling guilty about not spending much time with my husband - my father consuming all my spare head space. Last night I said ‘let’s go for a walk tomorrow’, but this morning I succumb to my sore throat and stay in bed with the pussy curled against my back till nearly lunch time. My husband says he doesn’t mind - he’s working on his clay creatures - glueing broken limbs and toes.

When I arrive at the hospital my father is asleep so I creep away and sit in the car, the rain pounding on the roof, the windscreen steaming up. I could go to Tescos but I don’t want to lose my parking space. He’s surprised to see me even though he’s not really confused any more. But the peeing thing is bad. The pads aren’t working. The lovely nurse has to change him and the sheets twice while I’m there. I drive back to his room and pick up more pyjamas and later drive away with a big bag of wet clothes, leaving him in the hands of another lovely nurse helping him off the bed.

I load the washing machine and as soon as the spin cycle is over I shove all the damp pyjamas into a plastic bag and we drive to the cinema to meet my sister and her husband. After the film I hand the bag over to her. She’ll get them dry tonight and take them in to the hospital tomorrow. And so the pyjama saga begins.

I’m so grateful for this little hospital and the doctor and the nurses and the NHS. But I’m not holding out much hope for a solution to this flowing pee. Which I didn’t think I’d be writing about in a blog. I hope my father doesn’t mind. He's always been so encouraging about my writing.

Safe Hands

1st November 2011 Tuesday

Tonight my father is in a hospital bed. It’s a cottage hospital - small and friendly. His own doctor will visit him - do blood tests, adjust his medication, relieve the peeing situation. Just for three days. When my sister and I leave him this afternoon he is trying to learn the names of all the nurses who are looking after him.

Later, after a toasted sandwiches in a draughty cafe, we walk along the sea front at Sidmouth with our sweet niece, the sun blinding us, the sea a churning red clay cauldron. I’m holding on to the feeling of lightness, relief that my father is not alone - in safe hands. But of course he always has been - it’s just that I forgot they don’t need to be mine.