Hard Sauce

24th December 2012

Nearly midnight - too late to write -  so some random moments...

The familiar voice at the end of the phone makes my heart stop - for a second I think it’s my father...it’s his brother - my dear uncle  - concerned about the flooding in the West Country and are we alright?  Although they are so different it’s just that he reminds me so much of him.....as if he was still alive..... 

He tells me about their Christmas and that he’ll make Hard Sauce to have with the pudding. Which is the same recipe we use - my sister will make it tomorrow for us -  because it comes from his mother - creamed butter and castor sugar flavoured with vanilla essence, spiked with blanched almonds like a hedgehog and with a cherry on top. It hardens in the fridge and then melts into a sweet rich sauce in the heat of the pudding. I love it that we are carrying on a family tradition down the generations, a Christmas ritual - a way of keeping those precious people alive in our hearts.....

All day it’s been hard not to think about other Christmas Eves - I used to wrap presents with my brother.....my husband and I didn’t really make many rituals....he says he’s mostly looking forward to going to church with my brother-in-law tomorrow......whereas for me it’s all about the family....I think the socialising maybe too much for him now....

Safety Net

23rd December 2012

Sainsbury’s is heaving at 10am but by the time we have filled our trolley with double cream, Parmesan cheese, walnuts and loo rolls and a few other things not on the list the queues at the tills have shortenend and we zip through easily. I keep saying to myself this is the last Christmas I’m going to spend this much money as we won’t have it next year.....I can see that food is the area where I’m going to find it hardest to budget....

On the way home we call in at some dear friends to take up their offer of some Skimmia cuttings with lovely red berries to substitute for the dearth of holly in our garden....he offers me some coaching for my ‘Christmas stress’ which I will also take up.....

While my husband walks in quiet damp woods I stay in the warm kitchen and conjure with mincemeat and melted chocolate, marzipan and honey, walnuts and cherries.....

And I take great comfort and reassurance from phone calls, emails and cards from my family, from dear friends, of such support and understanding of however sad and bad and weird it gets with me and my husband, I feel the safety net of their love like a constant spinning web around me ....  precious golden threads....impossible to fall through without a hand, a voice, reaching out to catch me....even in their own pain and darkness.....

This Long Slow Shadow

22nd December 2012

I can’t get into my day - very late morning I clear a space on the mess of the kitchen table, open recipe books, to-do lists which are not done, a tray of cooling almonds, a spent incense stick holder. My husband brings in the post. Lots of Christmas cards and letters. We open them while eating our lunch  -  poached eggs on toast. My husband doesn’t recognise any of the signatures in the cards. Except the beautiful hand designed one from his niece and nephew. I explain who all our dear family and friends are and then mostly he remembers. Some are from his ex-clients and I don’t know who they are either.

Also in the post are some long forms from the DVLA about re-applying for his driving licence. One of the questions is -

Do you have serious memory problems or confusion?

I want to know how serious is serious. Not serious enough to impair his ability to drive.

But serious enough to alter his life forever. And mine. I suggest we get some advice form his consultant before filling in the answer.

After a while I clear away the plates and just for a moment I stand still and look out at the dripping garden with a tight knot in my stomach. I want to smash my fist through the glass door. I want to see blood. I want to feel shards ripping my skin. Hard evidence of pain.

Anything would be better than this long slow shadow stalking me from behind - stealing my normality inch by inch ....

Solstice Dance

21st December 2012

Tonight would have been a good way to go if the world had ended......

twenty of us in the lovely home of dear friends.... starting with a Deeksha meditation..... a glass or two of Prosecco....... the hot comfort of Moussaka and Dauphinoise potatoes, fresh seedy bread, salads and dips.....followed by raspberry crumble, profiteroles, ice cream and chocolate fruit and nut rocky road......writing down on slips of paper what to let go of this year (the tyranny of my judgements) and burning it in the fire bowl on the patio - the flames still bright in spite of the splashing rain.....talking and laughing..... and then wild and wonderful dancing and singing along to Abba and Tom Jones......

And my husband joining in  - singing even louder than the music and dancing like he always has  - as if there was no tomorrow....

Jack-In-The-Box

20th December 2012

My husband comes shopping with me. I usually go alone  - potter in the market, sometimes meet a friend for coffee, do things on my list and things that aren’t on my list - like looking at clothes I don’t need.

Today we are focused on buying Christmas stuff. I’m grateful to my husband for carrying the bags heavy with potatoes and carrots, seedy bread and eggs, Romanesco cauliflower and red cabbage. I argue a bit with the fishmonger about the size of the salmon fillet I want for the salmon en croute I’m making on Christmas day. He convinces me to buy a much smaller piece than I was planning - he says it’ll be enough. for four. He’s in a grumpy mood as he has just had bad news about something on the phone to his wife. My husband makes some jokes about it which I think are inappropriate. I’m embarrassed. Something I have to live with now - that ever present tension - waiting to spring out like a jack-in-the-box....

I love looking at the racks of baby clothes in Debenhams - I’m on the hunt for something for my great niece in the section 3 - 9 months. The little dresses and coats and babygrows are all so cute - I want to buy them all. I can tell my husband is getting bored with my indecision. I try and imagine her from the photos, but she lives in Beirut so I'll have to wait till next year before I can meet her -  which I’m longing to do.

I spend this afternoon with chocolate - the almond macaroons I make for my husband’s aunty are a disaster - they burn on the bottom and look dark and unappetising. I want to bin them but my husband likes them. The chocolate dipped almond filled dates look better. So I hope she’ll like those instead.....

They say the world will end tomorrow - but I don’t believe it.

A Pale Empty Void

19th December 2012 Wednesday

 A strange thing happens this afternoon. I take a break from standing in the kitchen as my back is aching and I lie down on the sofa. I don’t remember falling asleep but when I wake, just for a few seconds before I open my eyes, I have no recollection where I am, what room I am in, what country I’m in, if I’m in bed, what day it is, if it is day or night. Nothing. Not a single anchor or clue - like being suspended in a pale empty void, trying to guess where I could be. Or even who I could be.

Then the instant  before I realise I’m in the sitting room, I remember - THE CAKE. There is a fruit cake in the oven and I leap up convinced I’ve been asleep for hours and it’ll be burnt. It’s not and I’ve only been out of the kitchen for five minutes. Five minutes when I lost myself to a space with no address, no time, no identity and no fear....

I wonder if that’s what it must be like for my husband when he hits a word he knows but it has no meaning - it’s just a void which plunges him into nothingness. And where there are no clues to pull him out. To return him to the familiar.. No enticing cake aromas to rescue him from certain blankness...... 

Chocolate Comfort Blanket

18th December 2012

Got a bit scared  this morning having coffee with a dear friend whose husband has semantic dementia like mine but he has had it for years and doesn’t speak now or understand very much. She says she is exhausted. She has carers for him in their house and some respite care in a home. She advises me to get our money sorted out and to think about applying for disability living allowance even though we may not need it yet.

I was going to do Christmas baking this afternoon but the sun is shining and I want to be outside. I want to walk with my husband while there is still time, while he knows me and our life. He drives us out to Haldon Forest where we walk along muddy paths lined with fir trees. I ask him if he thinks about his future - if he imagines it  - if he’s scared like me. 

He says he spent all his life trying to predict and control the future and there is no point now. So he tries to stay in the present. But he does feel a bit lost.

Back home he sleeps for several hours while I mess around in the kitchen with recipes for Christmas gifts. My way of staying in the present, keeping  terror at bay in the achingly sweet comfort blanket of melted chocolate, brown sugar and sweetened condensed milk......

Trusting Gandalf

17th December 2012

This afternoon the veil is thin between me and my ancestors. I find myself stepping into the energy of my two grandmothers, my two grandfathers imagining the people they were, imagining what they would say to me now if I could bring them back to my world. And my parents are there too making up a family constellation. They are represented as shells and pebbles and crystals spread out on the table that I can move and remove - place them near me and faraway from me - a small spiral shell in the centre, in a way I couldn’t do in real life. They are all bigger and shinier and bolder than me.

It looks like a game but the purpose is healing - I don’t trust men is one of my stories. I’m looking here for clues - among these big men and among these strong women who shaped the lives of the ones who shaped mine - to understand them and maybe to re-write my own story.......

Tonight we spend in the company of Bilbo Baggins and Gandalf and Thorin Oakenshield. I take a risk my husband would enjoy it. He has read The Hobbit and seen The Lord of the Rings but doesn’t remember it. He says he got the gist of it but didn’t understand what anyone said and he didn’t like all the killing. Which there is a lot of and very much in your face in 3D....

But I’d trust Gandalf with my life.....

Coming home and watching Nigella whip up a Cappucino Pavlova is soft pillowy relief....

Roasting and Finding Another Way

16th December 2012 Sunday

I start and end the day with a pan of vegetables roasting in the oven.

Blearey eyed this morning I toss small cubes and slices of our potatoes, parsnips, butternut squash, carrots, beetroots and red onions in olive oil and scrunches of sea salt. When they are melting soft, blackened at the edges and all stained pink by the beets I turn them in chopped corainder and coarse-ground toasted cumin seeds.  For a dressing I grate a knob of fresh ginger into a thick slick of tahini paste, thin it down with lemon juice, pack it all into an insulated bag and drive over to my Course in Miracles Group in a litte village outside Exeter. 

The shared lunch is always a treat at the end of our meeting but for me it’s the place where for a few hours I can let the constant noise in my head come to a standstill and with my dear companions untie some of the stories I make up in my mind, release the pain I put myself through and find another way to perceive it all. Which is mostly asking for help in the silence from a Higher Source than my bogged-down ego which knows nothing useful at all.....

Much later while my husband rests in bed after his long drive this afternoon I roast more roots, chop purple sprouting broccoli, put brown trout cutlets under the grill for supper and start writing Christmas cards.......wondering how I got to the week before Christmas without wrapping a single present or making a single mincepie....and not really minding at all....

Shopping War

15th December 2012

We live near Exeter Football Ground, walk past it on our way into town, get caught up in the crowds flooding the pavements in their red and white striped scarves. Above us two whirring helicopters roar so low in the sky that we can’t hear each other talk. The High Street is thick with people and their umbrellas and their bulging carrier bags. 

I feel like I’m in a shopping war zone.

I never come into town on a Saturday and never on a Christmas Saturday but I’m on a train-set mission for my great-nephew’s present. And my husband is singing in a carol concert with his Global Harmony choir raising money for Wateraid. I sit in the dark auditorium and watch his dear face in the back row with the tenors - or devons as he sometimes calls them, and the shining faces of our friends as they sing. I’m glad the lights are down as most of the songs make me cry - John Lennon’s Imagine and Jessie J’s’ Forget about the price tag/we want to make the world dance’ and The Judd’s  ‘Love can build a bridge between your heart and mine/don’t you think it’s time’, and an African one  - Never Give Up.

We arrive home dripping wet - even my socks in my boots are wet. We have cheese on toast, olives, pickled garlic and sundried tomatoes for a late lunch the sky already getting dark over the soggy lawn and the blue tits snacking on the fat balls in the naked apple tree.

And I’m so grateful I don’t live in country really at war - or in Connecticut.

Struggling

14th December 2012 

All a bit of a struggle today - what with Christmas shopping in the endless rain, my husband in pain, the utility roof leaking again, slow progress with the cards, picking bones out of the red mullet fillets that don’t want to leave their fleshy home and wondering how Nigella makes it all look so breezy and sparkly and easy on the telly.

And my heart all in pieces about my husband’s pain tonight -  which isn’t only in his back....

How Well Did You Love?

13th December 2012

Tonight, sitting in a wonderful performance of The Messiah with the Bournemouth Symphony Orchestra and in the Festival Chorus, the face of our dear friend beaming down on us, I’m flooded with memories, with tears - the music whisking me back in time to other Christmases......to a younger time when I could never have dreamed that my husband would say to me - “What’s the Messiah?”

But the name doesn’t matter as he’s sitting in the dark next to me loving every note which he knows in his cells. He’s also wincing in pain every time he moves his left leg. I expect the worst - sciatica. I’m not very tolerant of my own pain but even worse with his - sympathetic but annoyed at the same time....how mean is that.

Maybe I’m grumpy  because we missed supper and I’m hungry and it’s too late to eat...

Maybe I’m sad  because I keep thinking about a saying in a Christmas letter from my dear Uncle who holds a special place in my heart being my father’s only remaining brother. He says he and my aunt often quote it to each other...

What matters most is -

How well did you love?

How well did you live?

How well did you let go?

If I put that in the present tense instead of the past then it's not too late....I could just feel for my husband in his pain and take out my judgements.... now that would be loving and living and letting go well......

Hope I Got It Right

12th December 2012 Wednesday

12 /12/2012    Looks like a magical configuration of numbers....

I forget to seek out magic today and lie low nursing my sore throat and don’t make much headway on the Christmas card front. As my husband is going out anyway to his ceramics class he takes the cards to be posted to Canada and New Zealand and Switzerland. Even though I could send emails instead, Christmas cards are such a familiar ritual that I don’t want to give them up. But maybe I will next year when I’m stretching the pennies....

My husband signs the cards but I have to remind him who everyone is - sometimes it takes a long time.... ‘Where’s Middlesex?‘  ‘What’s Brigadier?‘ ‘They live in London? Are you sure?’

We haven’t spent much time together today, even our ten minute soup lunch is snatched between appointments.  I thank him for doing a wonderful job hoovering the stairs and mopping the floors. He says, ‘I hope I got it right.’  Breaking my heart....

After our grilled salmon, leek and cabbage supper he counts up the calories and says he still has 75 left. I know a flapjack is much more than that, and it would be stretching the limits of our ‘fasting’ day but I say have it anyway. I savoured two illicit squares of very dark chocolate this afternoon so I’ve already gone into the f*** it zone.....

The Budget Game

11th December 2012 Tuesday

I wake at 5am with a raw sore throat, thinking it’s 7am and I need to get up - so don’t go back to sleep.

Our lady decorator arrives to finish the second coat of paint on the woodwork. She’s quick and neat and cheerful - leaving her gentle  presence in the walls.

I make a rooty vegetable soup for lunch, poach a thick slab of smoked haddock for supper, and peel potatoes and leeks to have with it.

My sister arrives to spend the day with me working on how to live  on a budget while my husband spends the day with her husband walking in the frosty Quantock Hills.

We pour over the figures and make up guesstimates of how much I spend on food and loo rolls, haircuts and shoes, books and therapies, gifts and face cream and reduce it and reduce it to make it fit the monthly income. Like most people have to do. My sister holds my hand when I wobble, says it’s just a game we have to play. 

I don’t know how to win this one but I’m going to try. Even though every time I think about it  my stomach knots with shame and fear... the spectre of becoming diminished and mean hearted always hovering in the wings...

A Bit Weird And Wonderful

10th December 2012 Monday

Hard to type with splits at the ends of my fingers - such tiny cuts, so sore.....it’s my dry, dry skin protesting the cold weather and my hands always in water....

My husband doesn’t come to our yoga class this morning - we thought it would be something to do together, with friends. He doesn’t enjoy it - he wants to get it right but the poses hurt  his body.....I find I can let it go - my disapointment....

While I bend and stretch and salute the sun, our sweet decorator paints the downstairs cloakroom -  a soft, pale greeny-blue like the shimmering inside of a paua shell from New Zealand...

I  stab holes in the Christmas cake with a knitting needle - and dribble it with brandy  - I’m sure I’ve overcooked it again.........no way of knowing till it’s too late and we cut it on the day....

I fill four fat glass bottles with the speckly mincemeat I made on Saturday and slosh in more brandy and orange juice as it looks like it needs it...

I don’t even like brandy....

The date for posting Christmas cards overseas has been and gone. I feel at a loss about how to write about this year to our friends and family  - how to put it in a few sentences  - how shock and grief and disbelief transmute into practising acceptance, giving up resistance and guilt and finding out what a budget really means.....with no idea where to start.......

And with the person I love becoming a bit weird and wonderful at the same time... 

Fairy-Lights Necklace

9th December 2012 Sunday

Not sad today..... in the company and cradle of dear friends......in a lovely, ordered peaceful home.....celebrating two birthdays..... flowers and homemade food on the table..... mulled glug wine on the stove....messages of love and wisdom and humour in 80 prayer flags for the birthday pair, strung up in loops in the window, bright bunting - each one so creative and colourful and unique....

I love it how we are all so different and still so connected - like a glowing necklace of fairy-lights.....

And this is what I’m giving up for Christmas - oughts and shoulds and comparing myself....

like wanting to go for a walk and wanting to stay in the warm as well -  and forgiving myself for choosing -  and loving -  the latter. 

Trusting I can still shine in our rainbow fairy-lights necklace...

Still Crying

8th December 2012 Saturday

I cry a lot today. They just come, the tears, and I can’t stop them....in the garden this afternoon hacking at the honeysuckle and pulling up the slimey trail of nasturtiums - reminding me of the summer and my mother - she’s always somewhere near by when I have secateurs in my hand......

.......in the kitchen stirring the Christmas cake mixture, listening to the Messiah.....making a huge batch of mincemeat as if there were lots of people to eat it.....

.......in the bedroom listening to my husband who is feeling lost and miserable.....longing for him to hold me.....as if his arms could make me feel safe .....like they used to......

.....clearing out the pussy cat’s cupboard - throwing away his medicines, his brushes...ringing the Cat Protection League to see if they want his food, his basket.... remembering all those times he sat near me like a calm and quiet king while I squatted on the floor weeping.....

.......reading the newspaper about the people having their disability living allowances cut.....and realising that that’s us.....those words could be in our future...... 

Now the cake is out of the oven and the house smells of Christmas.....this one without my father or the pussy cat......I”m always telling my husband to think about all the things he can do instead of all the things he can’t do anymore.....easy for me to say... no wonder he doesn’t take any notice ......while I’m still cryng for the past....still raking through the ashes there , searching for remnants of him....

Treats, Territories and Speaking in Russian

7th December 2012 Friday

I like this quote by Iris Murcoch in ‘The Sea, The Sea’

The secret to a happy life is continuous small treats.

 like refuelling at a pit stop with gulps of stardust...

which means I’d have to slow down long enough to even notice I was gasping and I’d have to change my mind-set that is fixed on when this is over then I’ll......

The thing is, is that when something is over there is always the next thing waiting in the wings to sweep into centre stage - like Christmas -  and for me all its attendant guilt-inducing I’m never enough thoughts......squeezing out treat thoughts...

Another pussy cat, youger and bolder, crapped on our pussy cat’s grave this morning  seamlessly colonising his vacant territory. So I cover the bare soil with a wide fan of arching fern fronds...a fragile boundary fence.

It takes me all morning to wash up last night’s wine glasses and make two birthday cards.

Then I remember a wonderful unexpected gift from a dear friend last night, waiting for me in the fridge - a delicious cheesy, garlicky nutty scone the size of a cob loaf, ready to put in the oven and bake. It feels like all my unallocated small treats rolled up into one lovely fragrant lunch.

I drive to a meeting with two women I haven’t met before whose husbands are at different stages in their journeys with dementia. I wait for half an hour at our agreed rendevous  - the coffee shop of a garden centre. Then discover there are two garden centres with the same name....I give up and  go home refuelling at Sainsbury’s instead, using my money off voucher so it only costs me £37 to half fill up my tank instead of £41.

Tonight while I peel a bright orange squash to roast for supper my husband reads the TV guide out loud to me, stumbling over each word. This is what it says,

An Island Parish - The chair of the carnival committe encourages people to take part in the annual scarecrow committee.

Afterwards he says, I have no idea what that means.

Carnival and scarecrow floor him. I explain, but he says he only vaguely understands. 

Luckily neither of us want to see the programme anyway. I realise I can’t really and truely imagine what it must be like to not know what words mean - unless I think of reading in a foreign language. What must it be like to be living in his world where the people he knows and loves are the same but we have all started to speak in Russian?

Knackered

6th December 2012

Too knackered to write anything coherent tonight after my husband’s exhibition of his Weird and Wonderful......just full to the brim with gratitude for all the dear people who braved the icy evening air and found their way to Unearth studio bringing their love and support and gifts.... and just for entering into the spirit of it all.....

Now the rain is slashing on the windows, no smoked salmon triangles or cheesy sesame biscuits left so we snack on left over peanuts and the cut off burnt bits of chocolate brownies and watch the news with our aching feet stretched out on cushions and the lovely feeling there is nothing more to do tonight except go to bed....

Telling People Now

5th December 2012 Wednesday

My day starts early in the kitchen with our heating engineer draining the boiler while I roll a hundred little cheesy balls in sesame seeds and flaten them into biscuits to bake tomorrow for my husbands’ private view of his Wierd and Wonderful Ceramics.

He says,’You used to have two bells outside your front door.’

I tell him why we only have one now. The other one was for my husband’s office. His face goes completely still when I explain that my husband has Semantic Dementia is. He says the father of a friend of his has developed Altzheizmer’s disease. As if it was the same thing.

I’m searching for olives in Sainsbury’s when my niece rings to say goodbye. Tonight she is on a plane to Katmandu in Nepal where she is volunteering for three months in a very isolated village. I can feel the hugeness of her journey in her voice. Her leaving stirs up echoes in me of all those partings in my life, those wrenching separations, and all those journeys I won’t make now...

In B & Q I dither in the paint section trying to find a colour to compliment the tiny mosaic tile in my hand. It shimmers pink or green or blue depending how the light catches it. I plump for two shades of a pearly sage colour which the assistant mixes up for me in minature pots, spinning them in his machine which looks like a microwave.

As soon as it opens at 4pm I sign up for Susanna Conway’s e-course called Blogging From the Heart and get in a muddle with my email address but she is lovely and friendly in her email and says it will be sorted out. It starts in January - it feels so supportive - something to help me out of my flounderings here on the page. I get so taken up with it that I let the chocolate brownies overcook and burn on the top. 

I start rolling the little sticky balls of fruit and nut truffles in cocoa powder while I wait for our man to come and finish the tiling in the bathroom. He never makes it as he’s stuck in traffic on the M5 after an accident. My husband gets caught up in the same traffic and never makes it to his piano lesson. The builder comes to look at the roof which is still leaking. I told him about my husband yesterday. He asks how he is today.

Later I take a bottle of wine to one of our neighbours as we missed their drinks party on Sunday. Standing in her lobby with the cold blowing in, I tell her about my husband and explain if he sees her in the street and doesn’t say hello it’s not that he’s being rude but just that he won’t know her name even though she may look familiar.

She thanks me and says it’s really helpful to know. She hugs me. It’s feeing harder now, as I tell more people, to not let my husband’s disease become a kind of identity instead of the disability it is....which diminishes both of us.

Siren Call

4th December 2012 Tuesday

I’m not really home yet. Part of me is still lodged in last week, walking along the sea shore with my dear sisters, hard cold sand under my soles, waves slushing in my ears, seagulls ripping through a cornflower blue sky above me, anticipating the salty, smokey golden bream I’m going to eat on the terrace of our favourite beach cafe, with the sun freckling my arms. In a place where I know how to be happy.

And home isn’t how I left it. No dear pussy cat to love and take care of and agonise over.  Leaving a huge pulsing space in my heart and in my kitchen and in the hours of my days.

I’m wondering what will wash up on the tide and fill that cave.  If I let it, probably just more of too-much-stuff-to-do. But I can also feel the tug of my husband’s need like a siren call from the future  - threatening a shipwreck in my reclaimed seascape...

I wasn’t going to blog tonight - feel I’ve lost the point of it. I’ve been reading Susannah Conway’s moving and inspiring book ‘This I Know’ - Notes On Unraveling The Heart’. I want to do her e-course about blogging. Her tips are to write what you care about, be honest, and don’t try and be wise. Her courses are so popular - her last one was fully booked up in ten minutes so don’t know if I’ll get on....

Now I can hear the rain directly above me, pounding on the sloping attic roof over my desk and the sound of my husband coughing in the bath. The smell of hot mincemeat shortbread I baked earlier is still lingering on the stairs. I keep thinking I can hear the pussy cat squeaking in the kitchen - calling to me, needing me.....