Sidmouth Birthday Boy

My husband's birthday today..... our EFT friend in Sidmouth baked him feathery light chocolate chip buns - he chose the Winnie The Pooh candle. We 'tapped' for new beginnings, new life.....asking to trust the gifts of his brain disease - however they appear.

We walked along the sea front into gusts of ear-numbing wind,

and sparkling sun, to the Clocktower Cafe where we had 

goujons of cod and fat chips for lunch followed by this giant slab of Pavlova for my husband. I could hardly finish my Blueberry Lemon cake it was so sticky sweet...but somehow I did - don't know why I find it so hard to leave cake on the plate...

On the way back to catch the bus I snapped this little boy chucking pebbles into the waves and who reminded me of my sweet great-nephew about the same age....

We rode on the top deck of a double-decker bus to Sidmouth this morning  - a beautiful 45 minute journey through the spring countryside flashed with reams of daffodils and heart-waving Magnolia blossom. I realise I haven't been on a bus in Devon since we came to live here 14 years ago. As both our cars are out of action - my husband's Renault Laguna sold for parts yesterday since it broke down irretrievably the night before we flew to Portugal...... and mine waiting for a new clutch in the garage - the bus was the best way to keep our birthday appointment in Sidmouth.

I feel unreasonably nervous, trapped, limited without the car ( even for a few days) which for me isn't just a convenient way to get about, but has always been a symbol for escape - a quick getaway if ever I need it. But I also see that adversity is an opportunity to seek for other solutions, to ask for and receive help. In our carless state - walking, catching a bus, hailing a taxi, accepting kind offers of lifts has expanded my world - made me realise there is more than one way out. Running away which is what I want to do at some point every day doesn't seem like much of an option anymore....

I read somewhere recently that the only way to heaven via Divine Love is to go through hell first which for some reason I find comforting.....

Going On Holiday

Getting ready to go on holiday for a week tomorrow. My flip flops have gone mouldy  - I scrub them along with my husband's shoes which are covered in mud after his walk this morning. I wash my summer scarves and hang them on the line in the sun - first time this year to have washing outside - makes me feel hopeful.

The fridge is nearly empty - I've been deliberately running it down. I find big bunches of dill and sage and parsley in the salad drawer and chop them up to make an omelette aux fines herbs which we have with the last of the rainbow bright Swiss chard leaves, speckled with chips of garlic and ginger and a sweet earthy beetroot. My husband would rather have toast and jam for supper but my faith in green vegetables as a cure for all ills is unshakeable - non negotiable even. I know he'll have a huge plate of biscuits and sweets afterwards so I try and get in there with a little dose of nutrition first.

I'm probably wasting my time and energy - at least my attachment to being right about what's good and bad food is more likely to raise my blood pressure than the poison of sugar itself....one more battle to give up..... one step closer to surrender.

Meanwhile I have to negotiate my way through the piles of T-shirts and trousers and long sleeved tops laid out on the bedroom carpet and whittle them down to fit in my suitcase....and try and remember that going on holiday is supposed to be fun......not the ordeal I fear it may be, however beautiful the country....finding ways to fill the long hours after lunch when my husband must find something to do.

Back soon.....

The Sunshine Changes Everything

So lovely to feel the sun warm on my back at the allotment  this morning.  No-one else around - only me digging and the robin singing in the budding plum tree, clear against a blue blue sky. And the sound of the cars in Prince Charles Road running the full length of the allotments. As I tug out the weeds the first joint of my middle finger twinges - I don't want to believe it could be arthritis - notice how much I fear the idea of not being able to use my hands. I find myself thinking about my father - he always feels close by when I have my fork in the soil.

 The sunshine changes everything - lifts my heart -  helps me to be so grateful for these few precious hours. It's such a beautiful day I take my lunch outside - Pak choi salad boats which I  eat with my fingers - roll them up like crunchy green tortilla wraps - let the luscious Italian lemon oil drip down my chin. 

My husband is out with his walking group - possibly eating sugar lumps. Or not. But I'm only thinking about the last piece of lemon polenta cake I made at the weekend.....wondering if I'll eat it now or save it for later with a cup of tea.

A Cool Wind Coming

Gorgeous sleeping goddess by Tati Dennehey

This morning, with lots of hand-holding, I slosh around in the mire of the new Care Act of 2014. Trying to decipher what it could mean for us. Trying to work out if we'll be better or worse off.  Trying to find out who - of many people - to talk to find out more. 

On paper it looks positive, hopeful for all carers - giving us different options. The wonderful service( greatly subsided by the local authority) that we've been using from Age UK, called Take A Break, when my husband goes out with his lovely be-friender, is coming to an end. We'll be financially assessed....but may still be able to buy in similar services.  A change coming....a cool wind blowing through the network of support which feels threatened, weakened by the government's need to save money. I want it to mean the weak will still be taken care of....but I'm afraid for some people that won't be true.

Tonight I want to curl up like Tati's gorgeous sleeping goddess and disappear into sweet dreams. 

Watching Poldark on Iplayer is my next best thing .....

Respite

 Dictionary Definition of RESPITE -  1. a period of temporary delay, esp a reprieve.

2. a period of rest or relief

What I really want is respite from my incessant thoughts - mostly fearful ones. The next best thing is to go away from home for a few days leaving my husband in the care and kind hands of my brother-in-law and dear friends. 

 So, this weekend, deep in rural Dorset, in a warm barn conversion on a muddy farm, surrounded by ancient barrow hills and in the company of good and caring people I noticed that I could calm my thoughts a bit, let the tiredness and tears rise to the surface, indulge in lumps of Rocky Road Tiffin cake, cook vegetarian supper for 20 people with the gift of my sister, stride out into the wind, listen to wise and loving words, sleep long in the morning and suspend my usual life routines...... a reprieve - even a temporary one -  bringing me solace.

And today I had another reprieve in the company of two old friends - coffee and cranberry brownies with one, rich lentil soup and salty focaccio bread with the other -  followed by a wonderful escape into the darkness of the cinema.. So when I came home it was somehow easier to tolerate all the idiosyncrasies of my husband. We even played a game of Scrabble, with a dictionary at hand, which he won....

Now I know that respite isn't just a nice idea for someone else....it applies to me, in a vital way that I never thought it would......and there just may be a way of taking it out of the realms of a lovely dream, dependent on the kindness of my family and friends, into another level of respite care.....which could save both of us......

Hang In There....

My husband does know why he ate the sugar lumps. He doesn't like feeling controlled. His way of protesting....he's not in control of much else in his life any more....so understandable...so painful...so infuriating...

I'm end-of-tetherish all day...short with my sister on the phone this morning...rude to the woman from my car insurance company when I complain about not receiving my certificate - she is rude back to me...I snap at my husband for eating the biscotti biscuits he made before they cool down....I'm frustrated by interruptions this afternoon while I'm cooking Thai Fish Curry and Coconut Chilli Chutney for the weekend by the men coming back to put a long ladder up the front of the  house....by phone calls from the charity who want me to make another donation to Syria.....I'm mostly irritated with myself for crying so much and so often about so little. 

 A friend sends me a sweet text - Hang in there...( you are OK)..... and I am.....thanking God tomorrow is another day and I'm still here.

A Bowl and a Half

I'm really tired. 

Really loud music blaring out from a student party a few houses away.

The drum beat drumming into my chest.

My heat drumming faster when I think about my husband and the sugar lumps this afternoon.

The care worker  from the walking group says he ate a bowl and a half of sugar lumps in the cafe when they stopped for tea. She and the other care worker couldn't stop him.

She says to me he mustn't eat so much sugar.

He says sorry....doesn't know why he did it....says he can't promise not to do it again.

I ask him to try. Then we talk about something else - how much he enjoyed the walk and the lemon  drizzle cake I'm making to take to the ACIM workshop I'm going to at the weekend.....which he won't be able to eat.

I feel as red inside as the flaming tulip.....burning up with the unanswerable question of control.

I phone a friend with experience. She says he wouldn't want to do it if he didn't have dementia....so it's more a question of helping him by controlling the environment  - not controlling him.

 Because it's so late I can't work it out any more...too tired and sad to be loving and good tonight....

Big Beauty

Underwater pebbles....

Big sky

big sea

big mountain.......big beauty......The Cape, South Africa.

Photos not related to this post really - just wanted some water - been drowning a bit today and then coming up for air.

 This morning three men are scrunching about on my plastic kitchen roof again - searching for the mystery hole that lets the rain in, lets it run down the kitchen walls, discussing endless possibilities, gazing up at the roof, standing on ladders, gouging out the sealant, poking the camera on the end of a flexible cable down an air vent, fire hosing the wall above it. When I get a crick in my neck and despair about the whole thing I go off and hand-wash some jumpers.

They are still there when my husband and I leave. We walk the 20 minutes to the dentist for his check up which was postponed 3 times for funerals. The dentist is young and pretty - my husband can't understand her accent. She knows he has memory problems and I'm there to translate for him - squashed on a folding chair in the corner behind all the hi-tech equipment. He opens his mouth, she starts checking his teeth with a long handled mirror. A siren starts blaring outside the open window. My husband screws up his face, clenches his fists, starts to cry. The dentist is alarmed she whips the mirror out of the way.

Did I hurt you?

No, he just reacts to the sound of the ambulance. I say.

My father died in an ambulance, he says.

Oh, sorry, she says.

Then he opens his mouth again and she carries on with the mirror journey. And says everything is fine - gum recession no worse anyway. Nothing to do. My husband is aghast at the £18.50 NHS charge. I say it's cheap and would be much more if it was private.

This afternoon we drive to Sidmouth for his EFT session which he always loves. He has forgotten he knew our Tapping friend 15 years ago - she says how much he helped her as a financial advisor, how kind he was to her. And now she is helping him - being kind to him.

Afterwards in the car I feel wrung out with trying to answer the unanswerable question - 

Can my husband control what comes out of his mouth?

Can he stop saying the same phrases over and over again? ( Not too bad. As we say in English. Ha ha ha).

Can he change the volume and pitch of his voice?

Can he stop calling himself a f****** a*******?

Is it a case of he won't rather than he can't - if it gets him lots of attention and he thinks it makes people laugh?

Is it all his brain disease or is there a little boy in him having some fun - still trying to be loved- whatever the cost?

I don't know. Probably never will. What I'm remembering though is that it doesn't really matter what comes out of his mouth - what matters is what I say to myself and what I say to him. 

Good kind things. Like It's OK.

 I love you when you say inappropriate things. And I love you when don't.

What a big beauty that would be.

My Garden Tribe

The allotment in April 2009  - all my husband's love and care poured into it. Now it seems lost to him  On Saturday my sister comes with her secateurs and the bolster of her encouragement - helping me to weed out the loss of him in every bed and path.....helping me to see how much I could do....how much I might grow ....fill out the skeleton of all his hard work in the past......the beds which were broken and grassy and parched ......by 5pm are restored and hopeful and waiting for seed....thanks to her magic hands and our father's guiding approval in every clod of earth turned and every spadeful of compost spread. Thank you my Garden Tribe.....

And thank you to this sweet Robin singing to us all day while we worked.

On Sunday we tackled the garden - my sister and I....tidying and ordering, emptying the summer pots, pruning  and weeding and re-planting until I could see the shape it used to be....could be again.And my husband filled the car with all our de-clutterings and took them to the dump ......taking his high loud voices with him....drowning out the music on the radio....

Much later in the dusk we walked in the University parks - my husband and I and the voices.....

which seemed calmer in the quietness of the tall old trees and the towering pink of the camellias lining the path...reminding me to stay in this cold spring of 2015 and not to stray into that other county of the  unappreciated past...... 

It's OK, I Love You

This afternoon we walk along the banks of the River Exe at Duckes Meadows. Instead of having a bad hair day my husband is having a bad voices in the head day.  Except the words he doesn't want to say don't stay in his head and come out of his mouth instead in a funny voice. Then he calls himself names in the same funny voice.

 These are some of the tactics we've tried to help him stop. 

Say I love you to the voice ....be kind to the little boy inside instead of beating him up.

Do a quick EFT tapping technique on his hand saying "Even though I'm talking in a funny voice, I love and accept myself".

Say "I'm thinking it but I'm not saying it."

It helps for a little while but the voice seems to have a mind of its own beyond his control.

Today I thought of another tactic - surrender. Let it be - don't try and stop it - take the pressure of him. 

What if it was just OK to talk in a funny voice and say inappropriate things, and to be upset about it while it's happening?

At least what if I let it be OK with ME? All of it. All my irritation and upset and fear and shame and embarrassment and wanting to not witness his distress. What if I  knew somewhere deep inside that I really, really can't change anything about him but just feel my own seeming unbearable pain....live along side it instead of trying to rid myself of it like something disgusting stuck to the bottom of my shoe.....what then?

So this afternoon while we walked under a blue winter sky by the river,  under the branches of wild cherry trees in full white blossom, I held my husband's hand and it was easy to say It's OK every time his funny voice broke out, every time he said,

  I'm sorry I'm being an arsehole,  I could say,

 It's OK. I love you.

Out loud to him, silently to me.

And feel the truth of it softening my heart.

....dance all night.

Just got home from being treated to a late performance of The Second Best Exotic Marigold Hotel..... wonderful feel good movie.....funny and poignant....marvellous acting.....all my favourite people ageing beautifully.... but I could  also watch the young Dev Patel dance all night.....might make him  my screen saver......

Ikea Ordeal

The sky from my window this evening - I love it that it's not dark at 6 pm any more.

I'm so glad to be home after our expedition to Bristol Ikea. My husband doesn't remember ever going to Ikea. I warn him about how big and confusing  and tiring it could be. I tell him about flat pack furniture, and cheap and cheerful and the culture of streamlined wood in the Scandinavian countries and what Swedish Meatballs are.  He just says he loves going shopping with me. We put the address in the Sat Nav, I write my short list - a round rug for my room to go with the new curtains which haven't come yet, a swivel desk chair to replace my broken-armed one a and a footstool to go with my snuggle chair.

And I try and re-frame my pictures from wrung out shopping ordeal to possible satisfactory outing.

I suppose you could say in the end it was a satisfactory ordeal. I came away with a pack of tea lights, lime green paper napkins, two water glasses, some hand towels and pillowcases and a turquoise rug which I'm not sure about.

 My husband patiently pushed the trolley around while I dithered in the aisles of the Market Hall but he perked up hugely when we reached the tills and the sight of rows and rows of  clear plastic boxes full of brightly coloured sweets and chocolates and fudge and marshmallows. 

While I paid for all my unnecessary purchases he lifted the lids of each box and smelled their contents....till I stopped him and showed him the red plastic scoop instead to dig into the rainbow candies..... and he filled up a paper bag with pure sugary glue...

He ate some of them in the car going home on the slow back roads avoiding the traffic jam on the M5....I'd already lost the will to live - especially after the most horrible fish and chips lunch ever..... which I barely ate.....and felt wrung out with the pointlessness of trying to help my husband not to cough and spit..... or swear at himself and other drivers in the high falsetto voice he uses more and more now.....

Probably won't be going back to Ikea for a while....unless it's with homemade sandwiches and no list....and a more resilient heart.

A Journey of a Thousand Miles

Some moments from the last 10 days.....

A sweet duet - father and daughter - my husband's brother-in-law and fast growing niece  - making music together.

My sister-in-law's scrumptious roast veggie spaghetti lunch.... not her daughter's favourite - luckily there was some left-over scone pizza that we'd made together the day before....

 Gorgeous brunch at our friends' house in London - re-newing the richness of a long time tradition in their company....the delight of sitting round their kitchen table  - something we've done for many years....the agony of the splinter between us four now as my husband can only sit with a big smile on the roundness of his face asking for more toast and more toast like an open beaked cuckoo certain we'll feed him....which of course we will.

 Orange Chocolate Polenta Cake for a friend's birthday and housewarming party...

 On the morning I dashed to Morrison's for candles and inspiration to decorate it -  chocolate orange something maybe? To serve with the cake I bought tasteless out of season strawberries, blueberries and raspberries ( something I said I wouldn't do -forgetting my mission to be seasonal and low air - miles this year)  and forgot all about the chocolate orange decoration....which is why the raspberries ended up on top of the cake instead of in the fruit salad.....as if anyone minded.....

A  bitter cold walk along the muddy banks of the River Otter on Saturday, the wind shaking my camera.....

 By the  Church at Otterton this open hearted single daffodil in a bed of long leaved Leucojum...

My flower book says they are also called Summer Snowflake - maybe the ones I saw weren't those as summer is so far away -  but they are too tall to be snowdrops....

and I'm not really hungry for this cream tea at Otterton Mill - but eat it greedily anyway - glad to escape the knife blade of the wind.

Other moments......

Wednesday -  in the church after the thanksgiving service for my lovely uncle.....crouching down beside my aunty's wheel chair.....holding her small familiar hand...... she can't see me very well but her voice is strong, uncomplaining.....she says the days are very long now....

Thursday - all those tears in the night - wondering how to mend a fence that got shattered.....someone we love and who loves us both.....knowing his words which hurt only come from his own hurting heart which is also huge and full of kindness...then he rings to say sorry.....me too....mending the fence with grace and courage.

Friday -  at the crematorium after the service for our dear friend who died last week, laying an open hearted daffodil on the top of his woven wicker coffin already covered with the scented blooms of  all of us who loved him....then taking my husband's hand and as we file out of the door, whispering the names of all our friends who he's already hugged......

Saturday - pulling on my socks, sniffing  away more tears that just seem to come anytime, anywhere, wondering how I'm going to get through the whole of my day - with nothing terrible in it -just walking into the town holding the hand of my husband, trying to remember it's me tormenting myself not him.....remembering a journey of a thousand miles begins with a single step and kindness -  especially to me -  is the only guide on the way....