To The Moon And Back

Sweet Robin redbreast in the vegetable garden at Knights Hayes Court.

We didn't mean to find ourselves at Knights Hayes Court  near Tiverton on Saturday lunch time.  

 I planned to get to Dunster Castle near Minehead in Somerset. But when it said ROAD CLOSED AHEAD at Cove and no clear diversion sign, we took a left turn anyway, off into winding narrow lanes, did a huge circular detour and ended up  at exactly the spot where the road was CLOSED  at Cove. 

As Knights Hayes Court was so close it seemed the obvious solution. And I'm so glad we took a tour around the  peaceful walled vegetable garden  there - still very bare and wintery  but with last year's greens still going strong.

If we hadn't we'd have missed this sweet Robin chirruping on a fruit cage pole. He was so friendly....let me get closer and closer with the camera...... and even flew down right to the concrete path at  my feet and then hopped off into one of the newly tilled beds looking for worms. He felt like a glowing reward for all that driving round in circles.

Today this Matt Kahn quote spoke to me because I was feeling bad about being impatient and irritated and withdrawn and resentful at the weekend....thinking that meant the end of love instead of just another chance to love myself.....and Robin...... more not less...to the moon and back.....even though I'm wired up and tense and tearful more not less of the time.... this is also the reality of love. 

 Phew. I'm glad we've got that sorted out as Robin would say....

Featured Teaching: The Reality of Love

By Matt Kahn

From a spiritual perspective, love isn’t an emotion you feel all the time. It is anunwavering depth of compassion and empathy that reaches inward to embrace yourself – no matter how mixed up, shut down, or overwhelmed you seem to be. When rooted in the vibration of love, you don’t have to feel better in order to bring forth the kindness and care that already dwells within you.

Instead, love inspires you to embrace the innocence within your heart that wishes it felt something other than how things are. 

Love is a selfless and harmonious response of greater support, not an emotional high of any kind.

Robin's Trousers and What Happened To Me?

As we walk around the gardens at Killerton house this afternoon the wind bites and stings my face. It feels bleak and miserable and dull.  Swathes of daffodils marching across to the grassy slopes are the only brightness. Robin continually hoists up his trousers - the elasticated ones with a pull string at the waist. Today we tried them without the braces.

But we end up in the disabled toilet again. This time Robin can't undo the zip on his jacket or pull his sweat pants down. I help him but my heart sinks deep when I imagine the consequences of not being able to go to the loo on his own.Then I realise that the waist band is pulled too tight - he wants it like that to keep them up -  but if he has it looser but wears the braces at least he only needs someone to undo and do those up. So we'll try that tomorrow.

And  also tomorrow I'll collect his pair of jeans which  I took to be altered  - zip and button replaced with velcro. Who knows - that may be the answer. But I'm not holding my breath.

 Sometimes I take a little step back and look at my life as if it was someone else's. Sometimes it doesn't feel quite real or right that my thoughts are all about Robin's trousers and nothing else. And I ask myself what happened to me?

We have a cup of tea in the cafe at Killerton but my cheese and chive scone ( not at all gluten free) is heated up in the microwave so is tough and hard to swallow.  I struggle to find any hint of either cheese or chive in the gluey dough.

The highlight of my day is having the lovely PA come for her first visit. We talk about the possibility of her helping to get Robin up and dressed two days a week- instead of the agency carers I've been offered -  which I feel much better about. She also leaves me with a sparkling clean kitchen floor.  Which lifts my dull spirits no end. 

I'm making a butternut squash, spinach, leek and tomato sauce to have with the pasta tonight. It's rice pasta - gluten free. My own logic about avoiding gluten defies me  - I can't seem to do all or nothing or be consistent about anything. Just the way it is today.

Emergency Toilet Stop and My Clan

The sky was often just like this driving to and from Sheffield the last two days  - great bolts of shimmering silk streaming out from any gap in the clouds - a giant fan of light and hope.

Tonight I had the best hot bath ever after driving five and a half hours back down the motorways from  Sheffield. We stopped twice - once  for a cup of tea and  half chocolate dipped cookies at the excellent Gloucester Services and Farm  Kitchen Shop. The second time was for an emergency toilet stop. We were stuck in roadworks on the M42....rather a hairy drive to the nearest services which were not very near. Luckily I had 'equipment' with me and  was very grateful for the spaciousness of a disabled toilet.

Apart from the distress of all that Robin was mostly quiet on the journey. Even with the radio on, we had very few PBWs , mostly teeth-nashing and burping instead.  And lots of requests about when he was going to next see the family and our friends.

Although there has been too much recent illness and loss and dying in the family it was so good to be with my cousins and their families today at the services for my aunty who was nearly 95. She was an amazing, formidable, deeply caring and inspiring woman. She studied geography at Cambridge university in the days when they didn't award degrees to women and had to wait till her eighties to receive it. Hard to believe that was ever the case.

All the women in my big extended family are amazing. And so are the men.  Today I was reminded how much I love my clan and how proud and privileged I am to belong to them. 

He Needs Me To Tie His Dressing Gown Cord.

Budleigh Salterton yesterday afternoon.

The nice man from social services says he'll start the process of getting an agency carer to come in every morning and get Robin up and dressed.  He'll work out a budget. We'll have a financial assessment and will have to contribute to the cost of it. I don't like the idea of a different person every day. He says that once it's in place he'll get someone from another team to talk to me about the possibility of a personal assistant for Robin through the direct payments option. My head is all fuzzy after the meeting - so many questions to answer but it's clear Robin is not eligible for Continuing Health Care. You have to be seriously out of control for that.

 Half way thorough we are joined by another nice man, an OT, who measures Robin's leg and the height of the  sofa and the bed and the loo and looks at his office chair and the shower and says we may need adaptations later on but not yet.

 Afterwards all Robin wants to do is go for a drive, which we do, and end up in a cafe which is about to close, with a tepid cup of coffee and a slightly stale biscuit. And I try and explain what's going to happen which he seems to understand.

Now he needs me to tie his dressing gown cord and make him a cup of tea and he'll watch the news for a bit which he won't understand.

 Tomorrow I'll get up early to have a new tyre fitted on the car and later we'll drive up to Sheffield and spend the night there. And the next day we will remember and honour my aunty at her funeral in Dore where we went this time last year in memory of  my uncle, her husband.

All day I've been thinking about my brother who lives in a spiritual community in Fiji. The hurricane  on Saturday devastated the island of Naitauba where they live. All the organic vegetable gardens he's responsible for have been destroyed as well as the two boats they use to get supplies to and from the island.  There is no way to contact them but today I found out that at least he is alive and well. For which I'm truly thankful.

  

Wall to Wall PBW to Budleigh and Back

At The Barbican, Plymouth Harbour, on Sunday when we finally made it to The Rockfish Cafe - a place I've been trying to eat at for more than a year. I had the catch of the day - a grilled fillet of whiting and a little bucket of excellent chips. I had to lean over the bottles of vinegar and chilli sauce in the middle of the table to feed Robin with the slippery chopped up lettuce in his prawn cocktail which he couldn't scoop up on his fork.

Today the lovely OT came at 9.30am to watch Robin get dressed  and see if she could offer any tips to make it easier for him. She suggested two things - to sit down when he's trying to pull his shirt on and to use his worst hand ( his right) first. She noticed, like me, that although he's clearly struggling he gives up very easily.

In town at the CO-OP bank we arrange to cancel Robin's credit card. We go to the desk at the back of the counter and the nice clerk puts me through on the phone. I explain Robin's difficulties but the man on the other end says he has to speak to him to go through security questions. He says, You mustn't prompt  him. He asks Robin for his memorable name. Robin says, Do you want my full name? The man repeats the question in a rather exasperated tone.

I whisper to the clerk that Robin won't remember it. She whispers back, I can check it on my system.

Then I remember what it might be - the name of our fluffy pig (I bought it for a friend when she had her baby 30 years ago but couldn't part with him) .

I mouth it to her. She nods. I whisper it to Robin and he repeats it to the man on the phone. Result  - the card will be cancelled. 

The rest of the day is a Poo Bum Willy day. Robin sits at the kitchen table doing his word search puzzles, singing PBW to the radio - and then apologising - while I make marmalade -  pushing the squishy bitter pulp and seeds through a sieve with the back of a spoon.  I'm  also waiting for the plumber to come and fix the drip in the hose in the down stairs loo before we can have lunch.

After lunch, samosas, onion bhajis and salad, we drive to Budleigh Salterton- Robin singing PBW to the radio all the way. Today I find the constant apologising harder than the constant PBW. It doesn't matter what I say about it's not his fault and he can't help it and it's all OK , he's doing his best and I'm doing my best and if we could do any better we would. But nothing makes any difference and it's just wall to wall PBW to Budleigh and back. 

So I'm glad today is over and tomorrow I'll have another chance to do my best.

A February Friday

I'm writing this at the kitchen table. The sky has only just darkened

 beyond the glass doors and the undrawn curtains.

I see these daffodils  - double headed -  and  orange centred narcissi, dumped rather than arranged, in a tall glass vase on the table. They need greenery but I didn't have time to cut anything from the garden this morning before the estate agent arrived.

I hear the oven extractor humming over the pan of simmering brown rice on the hob. The central heating has just clicked in and there's the other faint hum of the de-humidifier in the hall.

I smell the comforting earthy aroma of the rice, the almost meaty one of almonds and cashews roasting in the oven and the nail varnishy perfume of the narcissi.

I taste the residue of a couple of raw almonds in my mouth that I snaffled before I put them in the oven.

I feel the cold coming up from the kitchen floor telling me I need to put more socks on.

This morning a dear friend comes to collect Robin and drives him away to visit her mother in a nursing home.

The nice young enthusiastic estate agent says the house ticks all the 'sell as seen' boxes and we don't need to do anything except paint over the stained patch on the wall in Robin's office where the damp came in from the roof last year.  He says the market is good, for young families. Our area is protected from any more multiple occupancy conversions and it's worth more than I expected. We aren't selling it yet - just getting figures for my mythical future.

After he leaves, lovely PA arrives and we talk about what she can do for both of us. She's so nice I want to cry with relief at the thought of her helping with Robin and helping me with the house and my chaos  - even for a few hours a week.

After soup and toast and blue cheese salad lunch, and after Robin's sleep, we drive over to Crediton to have tea with a dear friend who was also a client of Robin's in the early days. She tells the story of arriving at Robin's office the first time and he said to her,

" What you need is a cup of tea." 

Which is exactly what she did need.

 When he gave her a big hug as she was leaving, she was sold, and he was her financial advisor till the end when he couldn't be any more. She says she still misses him and especially his hugs.

 I'm losing the internet connection now and have to go back upstairs to my study.

This is the view now from my big snuggle chair - my  food photos on wrap-around canvas - I love them. 

And the one above my desk takes me instantly back to Armenia when we stayed with Robin's cousin and his family, and where we watched some wonderful women bake Lavash, their paper thin flat breads. And then especially for us they made this sweet simple tart, Gata ,straight from the oven in the ground- I can taste it still. 

I can hear Robin waking up now and will make a start on supper.....something with rice and almonds and spinach ....I'll concoct it as I go along - trusting the luscious ingredients to give me inspiration....I'm thinking Chinese now...ginger chilli garlic soy. Just another February Friday.

Lambs, Appointments and One Blissful Hour

Lambs already.....and it's still light at 5.30pm.....half term too...maybe the slow dark march out of winter has started.

I made three appointments today. The first, for a team from the social services to come on Tuesday and  re-assess Robin in the light of his different needs - and mine. The walking group - the one where they don't walk - is being phased out and they want to discuss other options as well. One to one is better for Robin.

The second appointment is for a lovely Occupational Therapist to come on Monday and watch Robin get up and dressed.... see if there is anything she can advise about making it all easier. Like shaving at a table with a bowl of water so he doesn't have to raise his arms so high......how to pull a jumper over his  head, get his socks on. She came yesterday with lots of helpful suggestions and now I'm looking into buying an easy-grip handle spoon and fork, a tall drinking cup, velcro fasteners instead of a zip on his jeans, and a bidet toilet.

The third appointment is for an estate agent to come and value the house....for that hard to imagine future when I may need to sell it....for Robin's care.

This afternoon, while Robin was wrapped in the tender loving care of the marvellous women at The Mede, I lay on the bed in the spare room with the sun filtering in through the blinds and read my book -  Brooklyn by Colm Tolbin -  escaped into America and Ireland in the 1950's -  and  forgot about everything for one sweet blissful hour.

Sidmouth on Monday