Mending My Life

White garden light.

Everything goes wrong today from the beginning......when Robin wakes early - an  hour before the carer is due to get him up....what to do? I suggest games on the computer.....discover the computer is defunct.....despair at the thought of him not having anything to occupy him in the evenings. I ring  our lovely computer man and leave a message. Make Robin's breakfast smoothie while waiting for the carer.

Different carer from yesterday. She's young and sweet. But I have to go through Robin's whole 

routine again. Amazingly we aren't late for The Mede. What a godsend that place is.

In the market I can't remember what's still in the fridge and what I need to buy. So I end up with too many tomatoes, no beans and one beetroot. I leave my list at home for all the other things I need like  E45 cream for Robin's itchy, flaky skin as the nice calendula cream doesn't seem to be working. 

Lovely restorative coffee with friends and then back to the relentless list....ring speech and language therapist to ask for Robin to have an assessment for some sort of communication aids as his speech is getting worse. For the first time this week I find it hard to understand what he's trying to say. I leave a message.

The hospice day care nurse rings to say she is trying to get a "navigator' for Robin to be with him if he attends one of their sessions. Someone else will ring next week to make an appointment to come and assess him. I'm pretty sure he won't be suitable for day care. But I'm grateful for the offer.

I change Robin's sheets and put a double duvet on the bed as an experiment to see if it solves the problem of him getting entangled in the single duvet or it slipping off which it is doing at the moment.

The computer man rings. He can come this evening. Which he does. And while Robin sleeps on in the bed under the double duvet the computer man identifies and solves the problem in 5 minutes all for £10. A huge relief.

Later I drive Robin round the country lanes for an hour then make a spinach and Parmesan  pasta supper  -  comfort food  - sticky with garlic and olive oil. 

 When a young man with a strong northern accent comes to the door selling dusters and gardening gloves and cleaning cloths - poor quality and expensive....because he's "done wrong" but is trying to go straight....I feel sorry for him and buy two things I don't need because that means he get's 20 % off  the cost of his accommodation tonight.

I've been weepy and impatient and self critical all day but that young man inspired me with his courage and resilience....knocking on doors....to mend his life.

 Whereas all I have to do to mend mine is to open my heart to myself...day in and day out,

Harvesting all that love...

The harvest. 

The harvest. Summer fields south of Castle Drogo, up on Dartmoor, where we drove this morning. But only to the car park there. Then turned round and  came back. At least I made a stop in Moretonhampstead at the deli to buy the famous cheese straws that Robin used to love.

I heat them up to have with his salad lunch but actually they have lost their place in the annals of the cheese straw olympics. They are stale and a bit small and mean on the cheese  and overloaded with chilli. He appreciates them even if he has forgotten their provenance in our history.

That's the trouble - it's almost impossible to go anywhere now without remembering how different  it was last year.....last month....last week....yesterday.

August 2015 Robin was still doing the washing up. Driving the car. Picking tomatoes at the allotment. Making Biscotti. I could leave him on his own for a whole evening. To get his own supper.

And we had started the tortuous mystery tour into the realms of what could be the matter with his right shoulder and arm and hand....I knew in my bones ( and from Google) it was more than a frozen shoulder - our brilliant body worker had alerted us to the fact  that it was something neurological - but it took forever to get the medics to rule out everything else....their job I suppose.

But like the tight fat bales of hay all that is rolled up in last year's harvest and there's only tonight and then tomorrow to live through. 

So now I must go and do Robin's teeth for him - standing and spitting out at the kitchen sink -where he will be tomorrow morning - only someone else will be doing it then. Which I don't mind at all. And more importantly neither does he. For which I am truly grateful. 

This afternoon the dear friend who took him out for a drive, bringing back a trailing red begonia, said "It was fun....he was no trouble at all..."

And this evening, as he was leaving, after driving him and feeding him, dear friend/carer says "I enjoyed it - he is so appreciative.."

Something else I  never imagined....just a different way of making a contribution ....the round bale of hay rolling on .....getting fatter and fatter....  harvesting  all that love in its path.

Hot and Blue and Beautiful

Paddling pool ( young cleaner with lots of puff helped me blow it up last week) drying out in sunshine this morning after same nice carer came  - much earlier thank goodness - to get Robin up.

It looks more at home on the grass than in the kitchen with a perching stool in it.  But it's better than wet towels everywhere. And Robin likes it.

I was going to do some gardening this afternoon while Robin was in the tender loving care of dear friend driving round verdant county lanes, all views obscured by our high Devon banks and hedges thick with summer growth.

But it was too hot and blue and the light so beautiful.....I had no energy to pick up the secateurs so I sat in the shade of the umbrella ....ate an almond Magnum ice-cream and dipped in and out of a new book I've just started called The Past by Tessa Hadley....alternatively mesmerised by her marvellous prose and the burning brightness the garden all around me... the reds and golds and oranges of petals constantly swished by humming bees and chasing butterflies..

I kept wondering if this could be the last summer here....kept remembering how we planted this garden...and all the gardens we've grown from the beginning -  our first little square garden at the back of our flat in Streatham.... when Robin knew what a begonia was long before I ever did. He grew heavenly lilies in old blue plastic tubs I remember...

Tonight I cook my feta fritters again - this time perfumed with chopped Greek Basil - seems to have become my  easy signature dish this summer....in the absence of the allotment and my usual supply of green beans to make stews of green beans tomatoes and garlic.

We eat them in front of the TV watching the incredible leaping and dancing bodies of world class athletes. I wonder what it must be like to win a gold medal at the Olympics at age 19...a bronze at age 16. Where to go after that...

Getting Used To It

Carer arrives half and hour late at 9.30.

 I'm going up the wall. But she's so nice - a chatty grandmother. Lovely with Robin - says she thought he was a famous person. I say I think that was Robin Cousins - not to be confused with John Curry - both ice skaters. 

I show her the ropes....Robin yawns on the perching stool while she gently washes him. She takes longer than me though. Says she's never shaved anyone one before. I can tell. I demonstrate ....finish it off while she takes a phone call.

This evening lovely friend carer takes Robin for a drive in my car. I leave them supper on the table, flooded with late sun. I can hear them talking while I'm upstairs...on the phone... doing emails...reading my book.

I could get used to this....letting go of doing it all myself.

Replicating Me... New Grey Hair

Single late rose in the garden - red velvet beauty.

Frankly, it's you I'm more concerned about than Robin. You are looking very stressed.  Says lovely MND support person. I'm shocked it shows so much.  Every week I notice more grey hairs.

We make a list of 7 things to do. 

She arrives with her big kind, practical heart and leaves me with  a wheelchair for Robin - a bit dusty from her garage but worth trying. The OT said it could take 12 weeks to get one from the NHS so this is a bonus.  Although it is a bit small he can at least get in it....getting out is a bit more difficult as he is so tall. 

This morning we have our complementary massage at the Hospice Care centre. One each. For Robin,  his arms and hands. For me, my back. Soft oiled hands in my knotted muscles. Lovely at the time but hurts now. Probably nothing to do with the massage. 

This evening lovely friend/carer arrives to replicate me for a few hours. He waters the garden while Robin sleeps. I show him how to  get him up and dressed.  Take him to the loo. I make supper while he sits with him in the lounge. He takes my chair at the table and feeds him while we eat savoury nutty rice and salad - he is vegan. He shows Robin how to watch Family Guy on Iplayer but Robin wants to go to bed.  I show him how to use the electric bed and how to place Robin's arms across his chest so he can turn over.

Just his presence makes me feel  that I don't have to do it all, all the time. And I can wash up, uninterrupted ,while someone else blows Robin's nose, scratches his head, takes him to the loo. He will come back on Sunday - hooray.

Tonight I nearly fall asleep in the bath to the sound of Carl Orff's Carmina Burana wafting up through the open window. Robin is playing it on his computer. I remember buying it as a LP all those years ago....and now he has no idea what it is .......doesn't matter.....he is occupied for half an hour...which gives me half an hour.

 But probably not enough to slow down the rapid growth of my new grey hair.

Rapid Response or Not....

Instead of browsing in the farmers' market this morning we head north to South Molton.  We don''t get that far and instead of stopping for coffee and cake we pull in to a picnic spot on the way for the snack I always carry with me now - just in case. 

Then we turn round and drive home.

Robin sleeps while I start making lunch.

But I get distracted by a phone call from the social services.  Our lovely occupational therapist rang me at 8.30 this morning after I emailed her on Monday saying Help, can't do this on my own now.

 She says she can instigate the Rapid Response Team and get me some  assistance every morning to get Robin up and dressed. To start by the weekend.  I ask for 8.30 am or 9am. Rapid response happens when someone is at risk of going into hospital. And is funded by the NHS.

Later it transpires that RR doesn't have capacity for 9am. Hence the call from the Social Services. He says it is almost impossible to get care at that time, especially in Exeter, but it seems there is a care agency with capacity at 9am but I would need to speak to them and fund it myself. Which I have been doing all along for any services as we are above the financial threshold regarding income to qualify for support.

In the end I arrange for a carer to come every morning next week for 45 minutes to get Robin up and dressed. Except it may not be at 9am  - could be before or after - within an hour anyway - and it wouldn't be the same person every day.  When I realise that I want to cancel the whole thing - it feels more stressful than me just doing it myself. I agree to a week's trial.

When I tell him Robin says it sounds supportive....anything to support me is good.

I abandoned the paddling pool this morning. After spending 20 minutes trying to blow it up  and Robin patiently padding around the kitchen waiting for me to make the valve work, I want to throw it into the bin. So I return to sponges and  bath towels on the floor.

Supper tonight..... fork mashable  with fusilli pasta...

An evening nasturtium....it's the most relaxed I've been all day.... 5 minutes in the stillness of the garden...when it's too late to make any more phone calls or arrangements......  just me and the plants and the apple tree....till I hear Robin calling me to get him up.....one more time.

Wakeful and Weary and Thursdays

At the Great Western Canal at Tiverton this evening. Robin stayed in the car while I walked a little way with my camera. Remembering my father's 90th birthday here with all the family in 2009.

Very weary now. Not sure why then remembered I had a very wakeful, restless night. And Robin woke early.

 I have tiny painful finger splits again but at least I now have some magic cream meant for cracked heels but works wonders in a few days.

This morning, while dear friend looked after Robin, I escaped into town and bought a kiddies' blow up paddling pool for him  to stand in... or even put the perching stool in it...to make washing more of a shower experience. Will try it out anyway. It was only £3.

On our way to Morrisons I delivered the ADRT form to the doctor's surgery - Advanced Directive to Refuse Treatment. And sent one to the MND nurse.  I double checked Robin knew what it was first, knew what he had signed, or rather I have signed on his behalf.

Delved into the bags of wonderful fresh veggies just picked from my sister's garden and made supper -  a pan of green beans, courgettes, carrots and ruby chard all sticky and soft and flavoured with a chopped clove of elephant garlic, Greek basil and roasted cumin seeds. To accompany new potatoes slathered in butter and a feta chive omelette.

Although a dear friend - (thank you dear friend)  -  has stepped in to take Robin out tomorrow afternoon I'm mourning the loss of my favourite day, Thursday, my respite day, when Robin usually goes to the Mede - but it has been unavoidably cancelled. He is disappointed too.

Somehow it's just getting easier to live with disappointment ....nothing seems to matter so much now....although all the little losses sometimes build up into some big out of proportion upset.

Fortunately I'm too knackered to be upset and there is bound to be something good come out of it.  After all Thursdays are always special...