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....