Bake Off....Corrosive Disappointment

Highlight : driving back from round trip to Killerton House this evening.  Past all the places where we used to stop and walk.

Robin stays in the car when I jump out to take photos of cows and ploughed up, shadowed fields, Japanese knot weed rooted in the river  bank, and a wide open gate. Beautiful Devon,  sun low on the horizon, last day of August.

 Looking forward to The Great British Bake Off - the only thing I want to watch on TV these days.

Lowlight: missing most of The Great British Bake Off - I don't see who won the Viennese Whirl competition - while I'm feeding Robin chick pea chilli and rice and broccoli...his nose starts running....endless tissues... he eats two mouthfuls.... refuses the rest ...eats two spoons of  chocolate mousse and our garden blackberries.... refuses the rest.....he wants to lie down....I get him into bed....2 minutes later he calls .....says he can't breathe....except he is ....I take him to the loo ....except he doesn't go....he sits at the computer....starts sneezing .... I blow his nose...endless tissues....and now the bakers are making gingerbread creations and my supper has gone cold.

 I want to be cool and unattached and think I can always watch it on Iplayer but  the moment has passed.... and the disappointment  is corrosive.... It's not really about the programme....I know it's  all out of proportion....holding on to one thing for me...wanting my reward for being so impossibly good all day...bound to fail...why would he suddenly stop needing to pee, to blow his nose at 8pm just because I want an hour for myself.

Sometimes I think I'm not really the best  person to look after Robin. Tomorrow I'll ring some agencies about getting some more help with him in the evenings. Especially on a Bake Off evening.

Me Too

This afternoon my Japanese friend comes to tea. She brings me this beautiful cloth printed with Katsushika Hokusai's "Red Fuji"... Mount Fujiama which is supposed to represent immortality. She always comes with little gifts from Toykyo's most famous department store, Tobu, always exquisitely wrapped.

I give her walnut flapjacks and Medjul dates and Earl Grey tea.  And strawberry and blackcurrant jam to take back to Tokyo. She has been visiting us since 2006 or 2007 and is shocked to see the changes in  Robin even since last year. 

Robin has his own Mount Fuji to climb. Me too.

All day people have been coming to the house....some of them late...throwing out the schedule.... my schedule which is about making sure there is enough time for Robin to rest....to eat ....in between appointments and visits. And of course there  always is. And I am so grateful for these people.... going the extra mile....caring for Robin ...and for me.....people who have their own lives and difficulties beyond us..... and have to cope with traffic and accidents and other people's lateness - just as much as I do.

I think that living with terminal illness makes us somehow special but it's no excuse for expecting miracles...everyone is  having a hard time....everyone is crying inside....everyone is doing their best. Me too.

Weekend Pass

Bank holiday Monday.

We drive right across Dartmoor beyond Princetown and the prison, to Yelverton and then on to the National Trust's Buckland Abbey near Crapstone. Robin is already tired after the hour and a half drive - his long getting up and dressed routine as well. 

Now that we have the Blue Badge we can park in disabled parking spaces which we do, and for the first time use the free buggy service to get driven to the Abbey down a short pebbly path.

We never get to see the Abbey....spend a long time in the disabled loo,..... spend a short time in the long lunch queue in the restaurant while Robin waits in the dining room as no tables outside with sun umbrellas....I give up - only one person serving with 10 people in front of me - and we catch the buggy back to the car park. 

We sit in the car with the doors open and Robin drinks half an Innocent smoothie and eats half a soft biscuit. I drink a whole smoothie and drive back home via Plymouth which makes him happy as he loves Plymouth .... he has associations of his parents who were there during the war and my nephew who lives there now with his family.

Luckily lovely friend-carer comes later to take Robin out for another 2 hour drive so I don't have to do it and make supper instead, in fragrant, garlicky, herby, kitchen peace.

On Saturday evening same lovely friend-carer stays with Robin so that I can go to my sister's farm and spend time with my visiting niece and her husband who recently celebrated their first wedding anniversary and my nephew and his family.

We sit in their beautiful end of summer garden in  late sunshine... treated to crisps and olives and Prosecco...and even join in a game of rugby/football the lawn - with no rules and 2 people on each team - the most important member being 5 years old and full of exuberant, laughing energy.

And later..... another delicious treat  -

my sister's salmon and sweetcorn quiche,

and own garden herb salad,

followed by my nephew's giant vanilla meringues to 

accompany her glorious sour cherry sauce - cherries picked by brother-in-law from their own tree only hours before.

It feels like  I've had a reprieve...a weekend pass out of the army....just a few precious hours which make all the difference to me ....so that I can carry on caring.....without breaking.

And  a lovely surprise -  when I return I find that Robin has been on a trip round Exeter on the local bus  - an inspired expedition with  friend-carer- making my evening even more complete.

Exclusively.....One Sweet Gulp

More inside and out at A La Ronde with a view of the estuary at Exmouth from the garden.

Even in his absence - with 2 dear people who take him out driving, my day has been exclusively about Robin.  And particularly intense in his presence tonight. Very hard for him to settle to anything for more than minutes before he wants to lie down...pee...turn the computer on or off....get up...have a   biscuit....a cup of tea...pee ....lie down without his clothes....and coughing all the while.

I start an email conversion about sleeping pills for him with the MND nurse and the neurologist. 

I phone the hospital to expedite an appointment with the respiratory professor.

I talk to the Speech and Language therapist about communication aids and make an appointment for her to come next week to re-assess him. Everyone who sees him now says how hard it is to understand him.

I wash all his semi shower/strip washing towels. And get them dry on the spinner in late August sunshine. Washing away the weeks of early morning carers.

I buy another cotton double duvet cover for his bed while I'm in town to have my eyebrows waxed.

I phone the computer man about a problem with his keyboard which is becoming slow and unreliable.

On a big piece of paper I draw out the days of the week and fill in all Robin's appointments with

visitors and carers and enablers and friends and family and healers and supporters and try and work out how or with who to fill the gaps.

So that I don't have to endure another nightmare evening like this one.

I did have a brief respite when I sat, stunned, in the garden in unexpected hot hot evening sun and watched this humming bee scouting flowers.

And I envied her just having one thing to do - to bury her face in a rose and collect pollen- a life's purpose fulfilled in one sweet gulp.

Surviving Each Day

It's been muggy hot all day. And showery. I sweat even standing at the sink doing the washing up.

I finally make the connection about why I've had  a headache all day....the humidity.

It's either that or there is too much stuff for my head to hold - too many arrangements to make, too much juggling in the diary, filling in all those hours to keep Robin happy ...to keep me sane. Impossible - it has to leak out somehow.

I love this time of year in the farmers' market. I buy 4 fat corn on the cob wrapped in their pale green paper skins before I remember that Robin can't hold the cob or bite the kernels because of his wobbly lower front teeth. But I can always slice the kernels off and feed them to him on a spoon.

Tonight he doesn't eat much supper - baked carrots and squash, silky soft roasted brandy-wine tomatoes and green garlic- because he ate half a packet of the Millionaire's shortbread squares - a gift from his aunty - while we were  talking to new friend-carer who is coming to support us on a Wednesday.

  He tells her, in his scratchy blurry voice, about his other life, his life before his diseases...as an actor, a clown, a green and ethical financial advisor, a ceramicist. When he was living a big whole life without knowing it was precious and fragile and short.

But as I'm not trying to save his life anymore, just accompany him on his journey, I don't mind how many biscuits he eats.

Not trying to save my life either - just surviving each day, trying to remember to be kind.

I came to a decision today....

I don't know what this gorgeous plant is ... taken in the gardens of A La Ronde near Exmouth on Sunday. It reminds me of hibiscus but the colour of morning glory.

I came to a decision today. For months I've been in a stew about what sort of care I need  for Robin and what sort of respite I need for me.

After 8 days of different carers coming in to get Robin up and washed and dressed every morning I  have cancelled the agreement. The relief is like emerging from a net of thick ropes which has been wound all around my common sense.

It hasn't worked on any level - although I kept trying to convince myself it would get better when I got used it.

Today a third person told me that the care agency I have been using has a bad reputation - especially how they treat their staff. Which clinched it and I made the phone call.

What I should thank them for is that it has helped me to get clear about what I do want. And that is someone looking after Robin - at home - for longer periods of the day and evening like our friend- carer has been doing recently. Not in the early morning and not at night or  staying the night, which I can manage - if I haven't been doing it all day.

So through my wonderful grapevine network, tomorrow someone is coming to meet us who may be able to stay for half a day from 2pm to7 pm on a Wednesday. And just be me all that time....so that I can get on.... and go out..... and not have to stop to blow a nose or wipe a bum or scratch an ear.

Or squeeze myself into tight corners of time to get everything done before Robin wakes up and needs me to be his right hand, his left hand ....his anchor....his tether to the world... as it slowly slips away from him. One shrinking nerve at a time.

Bakewell Tart and Boundaries

The new carer - another one - has just left.

He didn't have time to finish everything there is to do to get Robin up. But at least he is dressed.

So I'm giving  him breakfast - banana and peach yoghurt and a green smoothie.

I'm also making the almond filling for a Bakewell tart to take to the lunch we are having with my niece and her family at my sister's farm.

Before Robin is half way through his breakfast he says,

I want to have a lie down.

(The same thing happened on Saturday, just before we were due to go out, and with Nigella's olive oil cake still in the oven.)

I say,

You can - in your clothes.  Or you can rest in your chair with your feet  up. We are going out as soon as the tart is cooked.

He says,

No. I want to take them off.

I become a broken record.... but there follows a horrible half an hour.

In the end he does lie on the bed in his clothes. For 5 minutes. Then says,

 I want to go to the loo.

Meanwhile the Bakewell tart is browning in the oven. And I lose all heart, and confidence in trying to make boundaries for me.

Much, much later after sumptuous vegetarian lasagne, everyone says the tart is good, especially with the vanilla custard, but mostly all I can taste is the memory of conflict and despair.

Luckily it's a baking hot day in the garden ....rugs on the grass....a paddling pool... games and shrieks of laughter... my sisters, my niece and my sweet great nephew and nieces are an absorbing and delightful distraction.

 And kind brother- in- law takes Robin out for a drive so I can be blessed by their precious company for a bit longer in the brightness of the garden.

Blessed and Lucky

Supper tonight. Smoked salmon and prawn linguine with creme fraiche and spinach  cooked by my nephew - absolutely delicious.

I'm basking in the company of my family and three little people  - one of whom is my newest great niece - the sweetest bundle of mischievous  smiles. I have a conversation with her sister about the difference between dinner and supper and tea. In Italy where she lives it's always dinner but she knows that her grandma calls it supper, and her grandpa calls it tea, but really it's all the same and nearly always yummy.

I can only indulge in this precious evening  because three dear people are taking care of Robin, in shifts, giving me a wonderful gift....... Like these gorgeous surprise flowers that arrived on Saturday a bright burst of colour and love from two dear friends.....lifting my spirits every time I look at them  reminding me how blessed and lucky I really am...

Waiting

Waiting ....

for Robin to wake up

too early

for the carer to come

 half an hour late.

for the cleaner to come

and go again to pick up her daughter

and come back and go again.

Waiting for Robin to say

while we are driving around 

to keep out of the way of the cleaner

I'm tired. I want to go home.

Waiting for him to wake up 

to finish lunch before

 dear friend comes 

to take him out.

Waiting for him to finish peeing.

Waiting at the queue in John Lewis to 

pay for soft duvet,

 double size, summer weight,

so it doesn't slip off his bed.

  Waiting for him to wake up 

before evening friend carer comes

to take him out.

Waiting for him to finish peeing.

Waiting for a text so I can get the supper on the table 

for when they come back.

Waiting for carer friend to leave.

So I can have my supper.

Waiting for Robin to wake up.

So I can get a recipe book off the shelf in his room.

Waiting for him to finish peeing.

Waiting for him to call me 

to blow his nose

scratch his left eye.

Waiting for him to finish watching Family Guy

way past mid -night  

so I can do his teeth

and give him a mild 

sleeping pill.

Waiting for him to finish peeing.

Which sometimes isn't a pee at all.

Waiting for this day to be over.

Waiting for my time to come

forgetting that this is also my time,

my life.

Slipping down the cracks 

 in between

 all the waiting hours

of someone else's life.