Heavy Stones

This morning man arrives to fit shower seat and step riser into the shower tray. All on loan from the NHS.  Last week he was also going to raise up the legs of the sofa to make it easier for Robin to get out of. But today he says he's not allowed to as our sofa has a wicker frame and it's not safe.

Talking to him I discover he's been a carpenter all his life but he now has carpal tunnel syndrome and he makes driftwood art. But he has too much of it. Like Robin's ceramics.

He takes away the electric pillow riser that has been on the bedroom floor for a month or so as Robin doesn't like it. I'm shocked to discover that when we return some of this equipment, like the shower seat, it is just thrown away and not passed on to someone else.  Or even given to charity. He says it's more expensive to get it cleaned. How mad is that.

Tonight Robin says the step into the shower makes him feel unsafe and he won't sit on the shower seat. Luckily it folds up.

This afternoon we have a visit from a lovely woman from the local MND society. She's down to earth, straight talking, practical and very sympathetic. But she hasn't come across anyone in Robin's situation before as it's rare to have MND with FTD. 

She sits at the table with us and watches Robin cough his way through a cup of tea and a soft coconut biscuit. She gives him lots of advice like how to sit and to move his head slowly from left to right when he has a coughing episode.  Which is the best straw to drink from. Which seems to work. 

She says our OT can apply for a riser recliner chair from the MND society and they will pay for it. Provided Robin will sit in it.

She says don't worry about the question mark over the diagnosis. She looks at Robin's hands and the wasting of the muscles round his thumbs and says it is MND. She lost her husband to MND and has been running the local society for  26 years so I'm pretty sure she knows what she's talking about.

Later we drive to Killerton to see the glorious display of azaleas and  rhododendrons against a high blue sky. I cry in the car coming home  - I check out if Robin really understands what MND means for him. He says he does. 

 And suddenly it sinks in to me too. Heavy stones dropping to the bottom of my heart.

Our New Foreign Country

On the way back from Cornwall on Saturday we took a detour off the A30 at Roadford  Lakes.

Later we walked ( a little way) in Ashcombe  Woods with this wonderful view of the Exe Estuary and  the mustard yellow rape fields making it look like a David Hockney painting.

The beech leaves are so new and soft and beautiful,

shining with hope and promise as another spring unfurls.

 Today Robin comes back from both his morning and afternoon outings with lovely support workers saying how much he enjoyed them. He hardly rests at all and I give him a green smoothie for lunch. He seems to be getting used to the idea of moving downstairs when the time comes.

I do some more de-cluttering and sorting out of papers and books. Leaving drawers and shelves echoey empty. I also find stacks of old letters from my mother and pieces of my writings.  So I have been visiting that 'foreign country of the past' - dipping in and out of the life and times of an unrecognisable me.

I bring myself back to the present and make supper  - cheesy scrambled eggs, speckled with chopped wild garlic  -  a soft doughy roll for Robin and  granary toast for me. And I can't help remembering those Sunday night "Red Shelf"  kitchen suppers of my African childhood - on our cook's night off when my father took over, and made us cheese or eggs on toast. In my memory they were always flavoured with  the feeling of illicit fun and truanting from the 'proper' food at the dining room table.

 Like eating in front of the television now. Except that's more about not having much to talk about anymore. And harder anyway when one of us is feeding the other....getting used to our new foreign country of the present.

What Should I Be Doing and Huge Unconditional Love

I'm totally thrown. My Blogger page won't let me 'insert images' as I always do. So I'm going to try another way of posting photos. I don't like it - unexpected change. My least favourite thing. Happens every day now though. Never catch up with it.

 Makes me feel disconnected from myself -  always on the edge  - heart in mouth -  waiting.  Just doing the next thing -  putting a load of washing on, blowing Robin's nose, putting away last night's dishes. Not thinking about the big stuff.

The unanswerable question all the time in my head  - What should I be doing? What's the priority? I never know. So I just bumble on. I can hear Robin waking up. So the next thing is to shower him.

Have I got time to make supper? At least think about it. Better go and open the fridge and make another decision -  one of  a thousand I make every day - never knowing if it's the right one.  Even though somewhere inside me I know there aren't any right or wrong decisions - mostly it all just feels wrong and I'm lost in the weight of the burden.

Later - all done. Decisions made anyway. Spinach and ricotta tortellini for supper. Lovely note from my sister about how to prioritise the changes in the dining room to make it into a bedroom. All on paper in black and white  - clear and numbered and ordered. Replacing the foggy grey cloud in my head. How lucky am I?

 On Saturday we visited some dear friends who have recently moved to Cornwall. These amazing chequer board shortbread biscuits made by our hostess. My mind boggles when I try and work out the maths or rather the geometry of how she did it.

Their lovely dog wouldn't leave Robin's side - lay on his feet while we had tea. As if she knew everything, accepted everything with her deep brown eyes. A huge unconditional love.

In The Garden ....and Disappointment

 Over night the apple tree is suddenly in full white and pink blossom. A  soft luminous beacon at the end of the garden this evening.

I'm thrilled with my new lawn mower - bought last weekend with the help and advice of a dear friend. It's a cheap B&Q electric one and even though the wheels fall off occasionally it makes our ropey little lawn look almost manicured.

One of Robin's first ceramics - with a new head-dress.

This afternoon  I bake an olive oil chocolate cake  -  a house warming gift for tomorrow. Then I let go of all the things I haven't done or said or written and sit in the garden with  a cup of tea, and  to make up for yesterday, read my novel -  Jojo Moyes "The Last Letter From Your Lover', while the sun either blazes or disappears behind swirling grey clouds.

I think I have plenty of time as Robin is out with dear brother in law. But they come back within the hour. Half way to Tiverton Robin says he's tired and wants to come home.

My disappointment is all consuming. Later on I'm cross and irritable with him when he wants to get undressed to rest and then dressed again shortly afterwards to go for a walk.

I'm tired at the end of long week. He must be too especially as he doesn't sleep all through the night. Neither do I. The kind and reasonable part of me understands and sympathises with him, wants to make allowances for his conditions. But the deprived and disappointed part of me wants to scream,

Go away, leave me alone, I can't do it any more.

In the end I give in. Get him dressed. He goes for walk on his own and I bang about in the kitchen making supper - feta and spring onion omelette with boiled to death ( mashable) broccoli. ( Oh Ive just remembered the left over mashed potato I heated up in the oven and forgot to serve - it's still there - I knew there was something  missing).

I can't remember what Friday nights used to be like before all this....  a walk to the allotment, the cinema,  a DVD, a take away, a bottle of wine?

  Too tired to miss it all now.

A Bus, China and The Open Door

Exmouth promenade tulips.

Driving Robin to The Mede this morning we are talking about transport.

Do you know what a bus is?

Is this a bus?

No it's a car.

At that moment a bus comes towards us. I say, 

That's a bus.

Of course it is, 

he says, recognising  it immediately.

Unfortunately there aren't any handy passing trains to help me explain  about rails and carriages.

Later I sit in a cafe on the Cathedral Green having coffee and chocolate cake

 with 3 dear friends who listen to my troubles and make me laugh.

It's sultry hot and I'm not hungry for lunch so, inspired by my juicing sister, I make myself a green smoothie, zingy with spinach ginger and lime.

I write emails and make phone calls following on from the meeting with our Archangel M about the CHC funding and stairlifts. I leave messages on answer phones and no-one rings back.

There is a thunderstorm while we are having supper. I try and explain it but Robin doesn't seem concerned. I remember a time when he was frightened by the noise in the sky as he couldn't identify it.

When I'm undressing hin to have a shower he says,

Are we going to China tomorrow?

He means Cornwall, and I say not till Saturday.

As I write this I have the door open listening to the sound of his occasional coughing. He's having a cup of tea and a piece of ginger cake in the sitting room while he watches the news. He's supposed to have someone with him while he eats and drinks. I stayed with him for a while on the sofa but it takes him a long long time to eat anything now and I wanted to go to bed. The open door is a compromise. I can  gauge now if the coughing/breathing is getting serious and I can get to him quickly.

All day I've been longing to read a chapter of my novel. But I never made it. And now it's too late. They say sleep is your best medicine. I must start taking it then....just have to finish this first.....

Having My Cake

In Exmouth this afternoon after lovely tea with dear friends in Lympstone nearby. Our hostess made a crunchy crusted lemon drizzle cake and divinely decadent chocolate cake - being deliciously mindful of my request for softness in Robin's diet.

I could have stayed much longer in their company but now I'm ever conscious that Robin can't follow much of the conversation and although he loves the idea of being with people the reality of not being able to interact is stressful for him. So he's always nudging me to leave quite soon after we arrive anywhere. It's a bit like getting up from the table still hungry, looking back longingly at the half eaten cake you'd like to finish, not quite satisfied.

It's the same with walking now. When we arrive at the sea front in Exmouth Robin says he doesn't want to get out. So I leave him in the car with the radio tuned to Classic FM, take my camera and start walking  along the deserted promenade. I want to take my shoes off and run down to the mirror stillness of the sea and walk for hours and for miles along the empty beach stretching into forever with just a few crows for company.

But I said I'd be back in 15 minutes so I keep to the path and keep my word. And I tell  the bit of me that wants to fly away like a black crow,

 "Not yet. Not yet."

 There may come a time when I can just please myself all of the time. Imagine having my cake and eating it too. At least taking as long as I want to finish it.

No Biscuits ...Or Not

Wakeful restless night. Listening out for Robin when he coughs, goes to the loo, in and out of bed as he goes upstairs to play on the computer.

8am -  I ring the Speech and Language Therapist. She  strongly recommends a "Fork Mashable Diet". Coughing on dry, crumbly food causes the choking and hyperventilating and scariness. Which means no biscuits....or crisps or nuts or sweetcorn or anything whole and fibrous.  I explain it all to Robin. And to lovely Age UK worker who comes to take him out. Suggest soft moist cakes instead. 

My sister  arrives for de-cluttering and moral support. We drive to Sainsbury's ,buy bananas and carrots, tortellini and veggie sausages, raspberry yoghurt and coconut cakes. I mash up last night's left over veggies with egg mayo and avocado for Robin's lunch.  Child-size portions now as he always says he doesn't want very much. When he comes back it turns out he has insisted on eating a biscuit with his tea. But didn't choke this time.

Much later my sister drives away  - her car loaded up with boxes of our books, old videos and cassette tapes, cameras and candles and the unexamined, accumulated contents of a big storage chest in the dining room. Getting ready, making space for the changes that are coming soon.

Even later, while Robin sleeps after his outing to Branscombe, with lovely PA, Archangel M arrives out of the rain and sits at the table with me. We have tea and flapjacks and go through the long complicated application forms for CHC funding already filled out by the community matron making alterations and suggestions about how Robin's diseases affect him, what care he needs and if he has the capacity to understand and retain it all. 

Yesterday I  went to  the Solicitors and  collected copies of  the Power of Attorney forms we signed at the beginning of all this. It was in March 2011. It's so odd to see the  confident flourish of Robin's signature in black ink. I never imagined in a million years that 5 years later he wouldn't be able to hold a pen let alone write his name.

Must get some sleep now ....and trust he'll breathe safely though this particular night.... till it starts all over again in the morning.