It's not as if I didn't know....

This bridal froth adorning all the Devon lanes this spring is cow parsley..... or wild carrot...... or Queen Ann's Lace.....I love it what ever it's called. All this beautiful May blossom lining the roadsides lightens the chore of all the driving I do now with Robin....so that it isn't a hardship at all ...like driving through a wedding arch...again and again.

I didn't drive out today..... although Robin did with his lovely care workers....out to Uffcolme  this morning and then to Torquay and Paignton and back this afternoon.....while I buried myself in paperwork and filing and sorting and form filling.....my sister holding my hand through all the difficult making decision bits.

All day in my headI've been keeping at bay the soft voice of the consultant neurologist, Prof Z, who we saw this morning before 9 o'clock. He's the one who made Robin's first diagnosis of Semantic Dementia. We haven't seen him since last September. He works very closely with the consultant  neurologist Dr H who has diagnosed MND. He says they are connected, the two diseases - at least they have the same pathology -  but it's almost unheard of for MND and Semantic Dementia to develop together as it is usually the behavioural variant of Fronto Temporal Dementia which Robin doesn't have.

When Robin asks him, When will I die? he leans forward in his chair with his arms on his knees and says that it depends on each person how quickly the disease spreads, but commonly people with this disease die within 2 to 3 years of diagnosis.

Robin says, Really?  

And talking to him later I realise that he doesn't believe the consultant. He just thinks that is one option, that no-one really knows.....  that he could live for  another 20 years.... and  he says we'll see anyway. 

Which is true - we will see. Even if it's two different futures we are gazing into. What matters is living in the present....which I think is Robin's gift. He's much better at it than I am.

Now I just feel torn and tired and confused .....and very sad.....it's not as if I didn't know ......

I Decide It's Time......

A little swan blessed stroll by the river on Sunday evening.

Saturday  Lunchtime - in a tiny cafe/deli/bakery opposite the Pannier Market in Barnstable Robin cough/chokes on his ricotta spinach turnover.  The waitress brings over a glass of water. The owner comes and asks if everything is OK. The other tables have gone quiet holding their breath while Robin regains his.

 I  decide it's time to give up eating lunch in public.

Saturday night - half past midnight. I have turned the light out. Then I hear a terrible crash and shout. I find Robin on his back in the hallway downstairs.  No blood, no bruises, no broken bones -  a miracle. Between us we manage to haul him onto the bottom step of the stairs and from there he can stand up. 

He  had turned the light out with his elbow and then missed his footing on the first step. At least I think that's what happened.

I decide it's time to get rid of the furniture in the dining room and order the hospital bed.

Sunday morning in the bright sunny garden of a cafe in Dunster Castle in North Somerset, Robin cough/chokes on a gulp of coffee and soft iced coffee cake.

I decide it's time to give up coffee and cake in cafes.

Today in the beautiful green peacefulness of my sister's garden I feed Robin with tiny spoonfuls of chopped up avocado and grilled Halloumi cheese and her own grown asparagus and lettuce. He doesn't cough or choke once. On that or the glass of  still water.

I don't know what to do now. Only eat at home? Risk soft food, soft drinks in a cafe? Walk with him on the stairs ( but not in front of him)? Stay up till he's in bed? Play it all by ear? 

Trust in God but tie up my camel?.....

Asking For Help

The first 'Tequila Sunrise' rose bud and bug in the garden. I can't write those words without remembering The Eagles song of the same name and all those memories it evokes..

And full blown perfumed roses flinging themselves off the fence on their long waving  stems.

Nameless roses  - as they were  already well established  when we moved to this house and garden - 13 years ago this month.

This morning, as the cleaner isn't coming till 11am, I steal the last luxury of staying in bed later than usual and listen to Matt Kahn's UTube video. Another luxury ( which is really a necessity), that  I've abandoned in the last few weeks as I've slipped into the habit of hurtling straight into the busyness of my day, determined to get myself up and dressed before I need to help Robin do the same....never quite sure when that will be.

Matt says exactly what I want to hear this morning.  The core spiritual concept -  Admit that you don't know how to do it and call on The Universe/God for help. Trying to do it on your own is just ego madness. 

It means you still make the same decisions but without being stressed and exhausted in the process.

I ask for help about all these tricky forms I have to fill in for Robin's benefits. Then I read  through them, write a couple of emails and stop worrying. Much later this evening I get a reply to one of the emails form the nice woman at the CAB who has been marvellous to us over the years, who says yes to my request for help. Not exactly when I need it but that can be sorted.

Robin is waiting for me in the corridor when I arrive at the hospital to pick him up. He hasn't slept. He has the beginnings of a bristly grey beard and has lost weight.  His right hand and lower arm are very swollen. I'm afraid he's dehydrated as I know he's hardly drunk anything in the last few days. He wants to go for drive even before we go home. I suggest Killerton House and a cup of tea.

It's a beautiful warm May afternoon...everything is green and white - white lilac candles, white  hawthorne blossom,  clouds of white cow parsley all along the lanes. We drive with the windows open and whoosh away the claustrophobic smell of hospital.

Back home Robin sleeps. I have to help him get out of bed - I watched the physiotherapist do it earlier.....later I give him a shower.....feed him a few mouthfuls of supper which takes a long time now, and he goes upstairs. But he can't press the light switch on in his office or press the button to turn his computer on, or turn the handle of the bedroom door. He could do all those things before he went into hospital. It may just be the effect of the treatment weakening his hands initially.

I need to ask for help with this one.

Respite Over/Circle of Love

A fire bowl at The Cider Press Centre at Dartington where we had lunch on Sunday at Cranks Vegetarian restaurant. A mediocre salad, heavy on potatoes, and a good roast butternut squash tart. I think the food was better when I used to work there 37 years ago.

Feeling sad that my respite days are over. I've revelled in the quietness of the house, my unrestricted hours, the space to fill or leave empty with my plans or my dithering or my pottering.

I sleep for a while before I go back to the hospital. The kind of sleep you never have enough of.

  I'll collect Robin tomorrow along with the "cough assist" machine. He slept most of the afternoon after his treatment. His arm is sore. Especially his hand where the canula is attached. I sat in the chair next to his bed and read while the cleaner mopped the floor around me. We chatted a bit.

She said 

You'll be glad to have him home.

I have to wake him up for the physiotherapist to go through the process of breathing into the cough assist machine and I have to sign lots of forms to say I've understood how to use it.

While his lovely carer form the Mede visits him tonight I go to my Deeksha meditation group. I haven't been ever since I decided it wasn't OK to leave Robin on his own in the house. I let the familiar music wash over me, I can feel myself nodding off and let myself rest in the circle of love.....not thinking great spiritual thoughts ....just looking forward to the fresh mint tea, lovely homemade flapjacks and catching up with dear friends afterwards.

A Mask And A Tube And A Machine That Beeps

I wake at 5.30 am. It's light. I get up because I can and my time is my own today. I write emails and feel alive.

9.30 am -  I lie on a massage couch and my cranial osteopath, the man with the magic fingers, releases the bumps and knots in the muscles in my shoulder, my back, my hip.And prescribes stretching exercises to keep them smooth.

Over the years he has worked on both of us many times.  Last summer he was the one who alerted us to the tremors in Robin's arms - knowing that they were neurological symptoms of something other than a frozen shoulder. It took months before we finally saw the consultant. Now I think I should have gone private to get a diagnosis sooner. But it probably wouldn't have made any difference to the outcome. Just saved some of those anxious waiting weeks.

When I arrive at the hospital this afternoon Robin is sitting in the chair, dressed in the same clothes he's worn for 3 days.  But at least they shaved him at last. He's attached to the drip so we can't go for a  corridors walk and play endless games of solitaire on the iPad instead.

 The lovely  senior African nurse says he didn't eat any lunch and he has been following her around all day asking questions. He says she's so beautiful and a genius and she laughs and hangs another infusion  bottle on the stand.

The Occupational Therapist puts her head round the door and asks to talk to me. She comes to show me how to work the other machine standing in the corner of the room. It's a cough/saliva clearing apparatus which involves Robin breathing in to a mask on the end of a wide tube.  It pumps air into his lungs and out again - I think. We will need to take it home and use it morning and evening to help clear excess saliva or if he gets a chest infection.

He says he doesn't need it. He says no a lot now. No to a drink of water. No to clean socks.  No to lunch. No to breathing into a machine. 

Suddenly it's all much more real. I  try and  imagine this breathing machine in the house. And a hospital bed and someone helping Robin to get dressed who isn't me. The visible apparatus of illness. Up to now it's just been him and me managing  -  with lots of wonderful people supporting us  - but  all looking, if not sounding, pretty normal on the outside. A mask and a tube and a machine that beeps - that I have to learn how to operate. That spells Oh Shit.

But tonight I'm not going to think about it. I'm not going to look at the long complicated forms lying on the dining room table that arrived in the post yesterday. Lots of questions to answer  about applying for PIP ( Personal Independent Payments) instead if Disability Living Allowance, and another horrible form from the DWP about Robin's eligibility for work which means assessments and interviews and proving that he deserves to have or keep the benefits he already has. Even though he's worse than he was.

I make my favourite supper instead - grilled asparagus and egg on sourdough seeded toast and avocado ( because I bought too many and they are all ripe at the same time) and read my book at the table with the sun still bright on the page at 8.30. Relishing the lightness of my freedom.

 Early the other morning I snapped the Robin and this magpie on the telegraph wire in the alley way at the end of our garden. A bird on a wire always reminds me of our friend John Crabb who takes the most amazing photos of birds, often in flight   - and now also paints them - beautifully. They are extraordinary  - a treat not to be missed.

 You can find him here.  See below the photo....

You can find him here www.johncrabb.co.uk

Contemplating The Daisies

I was  planning to get lots done this week while Robin is in hospital.

Buy geraniums and pansies and plant up the patio pots....

Start taming the wildness of the neglected garden....

in this beautiful weather.

But I find myself dazed....paralysed in the headlights of my 'freedom'.

This morning  I come to a full stop after an emotional session with my family constellation counsellor. I asked the question of the I-Ching Tarot Cards,

What should I be doing in these few respite days?

The answer came back very clearly in the Contemplation Card,

Let go of all activity, of old ways of being...contemplate the quietness ...be the gap between the in-breath and the out-breath.

In my case the old way of being is to respond to the pull of anyone who needs me and give my

self away till I'm hollow and empty. 

 Right now it's Robin. And I don't know how to nourish myself while I'm on the desperate mission to somehow keep  him alive.

In my head I know that's impossible and not my job. But because I've always done it - since I believed it was my job to look after my mother - even as a child - I'm at a loss as to how to do anything else. 

Except now the price is me. And since Robin's illness now is my chance to learn to love myself and so love him, love us all, without starving myself in the process.

So this afternoon I sit in the garden and  read my book in the sunshine  and contemplate the daisies growing in the lawn without jumping up to cut the grass, or prune the honeysuckle. 

Drip feeding myself with love while Robin lies in the hospital with another kind of drip filtering into his veins. Anti-bodies in a serum to stop his body attacking itself.  If that's what it's doing.

At least I can keep myself alive with my drip. The only thing I need to do.  And trust that the great  nourishing stream that is love is forever and always just a a breath away.

Hands And In The Hospital

Hands on the table- my great nephew and niece - making things, cutting things, imagining things -  bricks, snakes, the Great Wall of China. Helping hands from father and uncle. Mine feeding Robin a carrot cake - full of nuts so he shouldn't really eat it - in a rainy Glastonbury on Saturday.

Tonight I'm Robin's hands in the hospital. While he lies on the bed, pillow raised, the IV drip from the machine beside him seeps into his vein drop by drop. I prop the iPad up on the table slotted across the bed and he tells me which number to touch on the Sudoku grid, which card to choose in the solitaire game. It's slow because he can't get the words out and I'm not as quick as he is to see the solution.

We were asked to come to the hospital at 1pm as the bed was available. But there was a hitch, the side ward he was given had to be deep cleaned. We walked the corridors,  I had to stop him going into every ward,  in the canteen he drank coke and ate a nectarine yoghurt. My appetite was nil. Finally we got in to the room - for which I'm so grateful  - at past 3.30pm.  

I left  him at 5pm still waiting for the treatment to be set up and returned at 6.30pm.  He'd had supper - not much -  and I tuned the radio to radio 3 for him. He wanted to walk but  the nurse persuaded him it wasn't a good idea with the IV drip. I left him again at 8.15. Home again by 9pm with a bag of supper from Waitrose.

And now I have the big quiet of the house to myself.  Three more nights to come. Loving it.

Skewed with Blurry Bits and God's Grandeur

The professor of all things respiratory says Robin could have injections into his salivary glands to dry up the excess saliva which runs down the back of his throat a lot of the time.  The side effect is a dry mouth. He can also have something -  a pice of equipment  - to help ideal with the coughing choking episodes which the OT will prescribe. I can't remember exactly what it was as I was concentrating so  hard on what he was saying in order to translate it for Robin that I've forgotten it now.

The last thing he said was that Robin could have a breathing mask to wear at night but he doesn't need it just yet.  It is the same kind of mask he might need to wear all the time if his ability to breathe  gets worse. And to come back in 2 months time. Meanwhile he will arrange with Dr H for Robin to have the injections.

Afterwards we go shopping  in Aldi and then drive round lots of winding county lanes with the music  turned up very loud so it isn't the right time to explain it all Robin. It seems that it's breathing problems or chest infections which do for you in MND.

And now I've lost my glasses. Or rather mis-placed them as I was taught to say when I learnt The Silva Mind Control Method many moons ago. Meaning it's only a temporary loss. Whatever you call it I can't find them.  I often take my glasses off when I'm cooking and leave them in the fruit bowl or by the phone or on the windowsill - I usually don't remember where but always locate them in the end.

Not so tonight. I've dug out an old pair with slightly different prescription lenses and a pair of reading glasses but everything is a bit skewed with blurry bits. Possibly a metaphor for my life at the moment.

Except a dear friend reminded me this morning that in spite of it all I'm still finding beauty in the world with  my camera. She send me this lovely fragment from Gerard Manley Hopkins poem, God's Grandeur which has stayed with me all day.

               And for all this, nature is never spent; 

          There lives the dearest freshness deep down things; 

          And though the last lights off the black West went 

         Oh, morning, at the brown brink eastward, springs —

This Tiredness Robs Me....

Wisteria, iris and plants I don't know in the sunshine at Killerton  House yesterday evening.

The new occupational therapist and physiotherapist arrive in sunshine at 9am. We stand in the street outside the house and watch how Robin gets in and out of the car. Basically he's using his stomach muscles to raise himself up.  They arrange for us to make an appointment at The Independent Living Centre in Newton Abbot to get stairlift and swivel car seat advice and view some other equipment.

 I'm tired of talking about it all. Glad to take Robin to the Mede.  But he had a tricky day - two coughing/panic breathing attacks.  Thank goodness he has an appointment at the respiratory clinic tomorrow at the hospital.

The minute I sat down after lunch to read a chapter of my novel I fell asleep. This tiredness robs me of all perspective, inspiration or creativity. Just doing the basics interspersed with nurturing cups of coffee, phone calls, emails, and the occasional bag of Minstrels Chocolates and an anniversary or two keeps me going. 

Going to bed would be looking after myself .....so no more words now.