63 This Birthday

This morning Robin opens his presents and cards with a glass of breakfast - a strawberry smoothie. Oh no I forgot  - I opened the cards and presents for him because he can't use his hands easily.

I took the cake - coffee and walnut -  to The Mede so he could share it with his friends there.

He said he had a lovely day.

I discuss arrangements with his two lovely carers about the possibility of him staying a night there in a few weeks time. To give me some respite.  Like a birthday present for me.

This evening we drive back to Topsham to have supper in a pub by the river. Robin says he only wants something small and he prefers vegetarian food now.  I choose potato skins with Blue Vinney cheese and mushrooms for him. When the food arrives it's too hard for him to cut up or get on his fork so I lean across my own plate of hoki and chips and feed him discreet mouthfuls. I allow him a coke as it's his birthday.

I've just read my blog archives on his birthday  - 31st March  - for the last few years. On this day last year he was still driving. No sign of any muscle weakness in his arms. No braces or slurred words. No thought of stairlifts or respite.

Not an inkling of my world  - and his -  turned upside down again . Not by dementia this time. I'd never heard of Multi Focal Motor Neuropathy with Conduction Block a year ago. Now it seems there is nothing else.  And nothing else to do but make the next phone call, the next appointment, the next meal.

And keep loving him - and me - whatever is left of us. Whatever there is to come.

A Day In The Life...

Hellebores in Easter sunshine. I love them.

I had three things to do today. 

Make Robin's birthday cake.

Pay a big  bill.

Cancel a standing order.

I did all those things but around them and in-between them I washed the sheets, got Robin dressed, cut his nails, played word search games with him while we waited for his lovely not-walking group lady to arrive and take him out.

Went to Waitrose to buy him birthday goodies, (and special offers on cleaning products), worried he'd come back before I got home. 

Ate a bright green salad from my sister's garden. 

Took off Robin's shoes and jumper so he could have a rest and talked to the lovely not- walking group lady about coming to sit with him one evening next week when I'm going out to the Opera -  she said she could. Huge relief.

 Woke Robin up and got him dressed in time for the Neuro-physiotherapist and Occupational therapist to come and re-assess how he gets out of bed and the chair. They recommended a pillow riser and  raising the sofa legs to make it easier for him.

They also watched him walking upstairs and said it's a real concern as he's more wobbly now and he doesn't hold the hand rail. They say there are things other than stair lifts - like living downstairs.  But the shower and the bedroom and his office are upstairs.

The physio watched him breathing and said we should go to the GP and get his lungs checked.

I got an appointment with the doctor as soon as they left.. At least she said come in and wait. Robin doesn't sit and wait anymore so he wandered up and down and around the corridors of the surgery while I  chatted to the lovely physiotherapist who happened to be in the waiting room, who we saw at the beginning of all this, and who listened to me when I said it wasn't a frozen shoulder and I wanted Robin to see a neurologist. Finally.

The doctor listened to his chest and said nothing abnormal in his lungs. So his out of breath -ness even at rest, and which is intermittent, may be more to do with the neurological condition but she doesn't say there is anything to do.

 Robin wanted to go for a drive but I said no - too late  at nearly 6pm. 

So he slept while I made supper of roasted celeriac, sweet potato and squash, purple sprouting broccoli, onion bhaji, boiled egg and chilli sauce. 

And iced the cake.

Then I woke him up, gave him a shower, had a bath, fed him supper while I gulped mine down.

Made him a cup of tea and a plate of biscuits and carried them upstairs just in time for Masterchef to start - which is all I wanted to do - collapse in front of the TV.

At some point I wrapped his presents and wrote emails and now it's nearly midnight.  I notice my cold has come back and my nose is streaming. But there is nothing left to do except go to bed.

And it will start all over again tomorrow.....

Too Risky

Easter Weekend

I make a  Feta, Olive and Sun-dried  Tomato Cornbread -  gluten free of course - for friends coming to tea on Easter Saturday.  There is some left over which I take the next day to a lunch to share with more dear friends.

This is the beautiful centre table decorate made by our hostess - exquisite paper  peony flowers  made from coffee filters dyed with food colouring - so clever , so creative so full of love.

I make another batch of savoury cornbread on Easter Monday as we are invited to a family tea at my sister's where I watch two little cousins playing harmoniously ( mostly ) with this cheerful pig  money box- a delight to see. 

We spend the morning in Sidmouth with Robin's lovely hands-on healer who also made him a special  birthday bun with a Winnie the Pooh candle on it. Later we walk  by the sea  - all  sandy brown churned up waves and masses of shingle thrown up on the promenade  from last night's storms.

Today  I wonder if it would be better to give myself up to being Robin's carer - totally and whole heartedly. Instead of trying to have an independent life. Instead of always trying to escape. Which doesn't mean I can't still have time for myself. But only if I can get cover.  I'm getting more concerned about leaving him on his own - like I did today for two and a half hours. What if he chokes on his cheese sandwich or gets shut in a room because he can't turn the door handle or he falls down the stairs? While I'm having a nice lunch with friends. 

So I'm going to try it for a while, play safe, give myself a break from the anxiety. i.e. only go out, have my own life, if he's out with someone or someone is with him at home. Anything else is too stressful, too risky. I've never been good at taking risks. 

A Good Friday Moment

Good Friday - a bright blue day. Back at Killerton House this afternoon - our second home in the country.

These love birds are printed on all the canvas deck chairs dotted around the grounds for anyone to sit in and enjoy the view.

 Stained glass window inside the chapel a little way up the hill from the house. It's  freezing cold and has that old building musty smell seeping out of the walls.Robin remembers singing there with his choir Global Harmony, many years ago. He goes and stands in the very spot where he stood with the tenors on the black and white tiled floor in front of the altar. One of his favourite things now is to listen to recordings of the choir on his computer although he can't remember the words he remembers he loved it.

 A Good Friday moment.

After  a late lunch

while Robin sleeps,

I carry my book and cup of tea 

to the table 

 and pull one of the dining chairs

up close 

to the open patio door.

 I sit with my feet outside on the hot step

 feeling like the freckled centre

of a  wide sunflower

I lift my face up to the blinding light

in the ocean of the sky

and let the fire there

burn me

clean.

Not Enough Too Much

Duckes Meadow. Down by the river Exe the other evening in the company of solitary swan.

This morning I woke with a thought going round in my head.

I think I don't have enough respite. Or enough sleep. Or enough time. Or enough money.

I think I have too much pain. Too many shoes. I think I spend too much money on food. I eat too much chocolate. I think Robin talks too much. Or not enough. Or says PBW too much. Or eats too many biscuits.

But what if today I had exactly the right amount of respite. Exactly the right amount of sleep. Exactly the right amount of chocolate. What if it's perfect that Robin talks as much or as little as he does.

Or it's not really the right amount because there isn't a wrong amount. It's me wanting it to be more, less, better or different that is the real problem. It's me 'arguing with reality' as Byron Katie would say.

I suppose it's a version of being here now. Which I'm not good at. But if I just notice how pale and tired I look in the mornings, how cross and disappointed I feel most of the time, without thinking it's bad or I should be different - that would be a relief. That everything is as it is meant to be till it changes. Which it always does. Which is somehow not the same as just accepting it - more about observing it without judging it.

But  I notice at this very moment I'm feeling disappointed about something, and I think it's too late to still be blogging and I won't get enough sleep....and how pointless to have a great insight, to write about it and not to practise  it.

Oh well, maybe observing my judgement, with kindness, is a start.

Little Wave of Letting Go, Emergency and Rainy Day

 I feel so blessed by the song of this sweet  Robin redbreast  at Killerton the other evening - Robin  calls them his cousins..

This morning I visit a lovely woman cranio-sacral therapist. I lie on her massage table and she puts her  hands on my feet, the small of my back, my shoulder. She makes tiny imperceptible gentle movements, feeling into my tissues. I fall asleep and wake myself up by snoring.

Afterwards she says she can feel all the exhaustion, all the holding on in my body, tight and rigid like someone petrified in stone. And some clenching in my jaw( which I'm not conscious of) which might be the cause of the stiffness in my neck and shoulder. She says I'm starting to let go in little imperceptible waves and  that my resources to recover are all there underneath.

I drive home feeling washed out and sad. Robin is still out with nice woman from the not-walking group driving up and down narrow Devon lanes I'm guessing.

My lovely CPN arrives soon after and she says two things which help.  Firstly, when I say I'm always struggling to do the right thing by Robin, looking for someone to tell me what I should be doing next, especially as I think his condition is getting worse quite rapidly, she says you are already doing the right things and there isn't really anything else to do....just keep looking after him.

 But I should get in touch with the Speech and Language therapist and ask for a review about his swallowing and breathing. And call 999 if there was an emergency. Common sense really  - cutting through my what ifs? like a fresh breeze.

Secondly she says spend the rainy day money on respite. The rainy day is already here. I was earmarking it for Robin's possible long term care. But there will never be enough for that anyway. So tonight I have a good  conversation with Robin's lovely one to-one carer at The Mede and we start to make a plan.

I also phone the speech and language therapist. She says she'll put Robin on the emergency list which already has 5 people on it and she'll ring about an appointment at the end of next week. So I'll rely on 999 in a real emergency then.

I notice as I'm cleaning the bath tonight that my right shoulder isn't so painful. Maybe the first little wave of letting go is working.

No Time To Say Goodbye

Wandering along sunlit grassy paths at Killerton House yesterday late afternoon. My reward for GOING OUT.  Not such a hardship really  - all this free beauty captured in my lens.

I worried about leaving Robin on his own for a few hours  this afternoon after he got back from 

going out with his lovely Age UK supporter. But I needn't have as of course she helped him take off his jumper, and undo his braces so he could have a rest in bed. And he managed to eat the  lunch of cheese sandwiches and vegetable crudités I left him, all in bite sized pieces - no fork needed.

Ages ago, before Robin's arms got worse, my sister and I had arranged to meet up in Taunton with my cousin's partner -  my cousin who died of prostate cancer last year. We went to his beautiful woodland burial in the summer. They were together for 35 years. She is hurting and cut loose without him. Doesn't know how to be herself yet.....again.  My heart hurts for her. 

Although the man who was my husband has melted away too - slowly, relentlessly-  I'm still embroiled in the busyness of being his carer. She has empty rooms in her house. My house is still alive with him, another version of him.  Calling out for me. Needing me. A me who doesn't know how to be myself yet. A whole me  - a new me all in a muddle. Trying to untangle 30 years of a version of myself I hardly recognise now.

But more than anything tonight I'm thinking about those families in Brussels, torn apart, bereft  and unprepared for their loss with no time to say goodbye. Like I'm having.... such a long long goodbye.