Keeping It Together/Losing It

I see sunflowers everywhere - in supermarkets, in gardens, by the side of the road, in allotments. In the absence of  the ones which would have been on our allotment I'm posting these - taken in the  Cevennes region of the South of France 

in  June 2010 where we were doing a writing course. Hard to imagine such a thing now.

All day I  manage.

I keep it together

I discuss the merits of slippery sheets 

for Robin's bed

with two Occupational Therapists 

who come this morning 

and watch as he manoeuvres himself in and out of bed. 

He grunts and slips and slides.

We abandon the sheets.

Dear friend arrives 

drives off with Robin. 

Cleaner sparkles the house 

while I complete tax returns and

pay invoices.

I make avocado cheese salad lunch while Robin sleeps

in not slippery sheets.

In the supermarket he wheels the trolley round the isles 

while I pick  

asparagus and razor blades and Greek yoghurt off the shelves.

Half way through my list he says,

I want to sit in the car.

I abandon the trolley, take him to the car

leave him with Classic FM playing on the radio

 and rush back to retrieve and finish the shopping.

We visit dear friend for a cup of tea

and Robin eats three of her very nice biscuits

even though they aren't soft.

I want to stay in her bright company

but Robin nudges me to go.

We drive miles through steep and twisty country lanes 

tiny glimpses of summer fields and sheep 

beyond high hedges.

I'm still keeping it together. 

At home Robin sleeps 

I write emails,

eat a packet of crisps and start making supper

Then I lose it. 

A misunderstanding with someone unravels me.

I'm so sure I'm right.

I'd go to the stake on it, 

as my mother used to say.

Although we all knew she was mistaken.

And it turns out I was wrong. Mistaken.

But in the middle of trying to sort it out

Robin chokes on his supper.

I don't blame him - 

a rather over cooked veggie sausage 

and baked beans and broccoli

and hummus to stick it together.

Like the shopping trolley, I abandon it and feed  him a bowl of

mashed banana and black cherry yoghurt instead.

Then I go back to sorting out my mistake

and apologise a lot in long texts.

But I'm afraid I've done damage.

Being stressed and burdened is no excuse. 

All this time I'm trying to watch the final of Celebrity Masterchef

but like the shopping and the burnt sausage I abandon it.

And continue to sort out my mess.

I can't stomach my supper and eat another packet of crisps instead.

Robin thinks it's his fault  that I'm irritable and crying and impatient with him.

Even though I keep telling him it's my mess and nothing to do with him.

And I catch the end of the final cook-off. The Greek did great.

Tomorrow I'll put myself back together

When I'm not so tired.

Re-launch myself into the tasks of the day. 

And I'll manage because I know that the wound of a mistake can heal in time.

And it's me I need to love, to forgive, to say sorry to...

 

 October Sunflowers in New York in 2010.

PS As we are going to visit Robin's family next week I will be back here next Tuesday.

Summer ....softened at the edges.

The colours of summer. Even when everything is hard and horrid it's all somehow easier, softened at the edges when it's summer ......the time of no coats and bare shoulders, and the windows wide open at night.....and the gardens bursting with the red of geraniums and the pink of  dahlias and the blue of lobelia, and the thick green hedgerows brushing the sides of the car in hot narrow lanes.... with the music turned up loud.....and mint and cucumber slices float in jugs of water and the tomatoes taste of tomatoes.... and BBQ smoke drifts in the streets... and the faces of my friends, my loved ones, are touched by the sun. I love it that there is still more summer to come.

Today, a Thursday, which is always special to me, while I'm  buying eggs in Waitrose, I bump into a friend I haven't seen for ages. Her husband, who is the only person I know who has semantic dementia, like Robin, now lives in a home and although he doesn't have MND he has difficulty walking and speaking.  It seems that dementia doesn't only hurt the mind. My heart goes out to her.

Later I take a roasted veggie and feta frittata and my ubiquitous Lemon Polenta Drizzle cake to a gorgeous summer lunch with lots of beautiful women to celebrate a birthday.  I feel so blessed  and nourished by their company. Like summer, their love and care and acknowledgement softens the edges of my burden and makes it all lighter and easier to carry.

The Whole of Me

On Dartmoor a few weeks ago.

I'm feeling a bit dazed and stunned after today. A moth caught in the headlights.  My space all invaded and  upside down. Everything out of its place and in other unfamiliar places. I don't know where to keep my keys anymore.

The Angels came - one drove Robin off and the other de- constructed the hornets' nest of wires under his desk and brought all the bits of Robin's computer downstairs and set it up in a corner of the room.

I made up the hospital bed.

When Robin came back he said no, he didn't want to get in the new bed. He wanted to go upstairs to bed. I explained why he couldn't and in the end we got him in but he can't press the buttons to make the bed go up and down so I will have to do that. And he can't get the duvet over himself so I will have to do that. But at least the bed gets him into a sitting position so no more hauling him up.

Afterwards he said it wasn't as bad as he expected. Which I consider a result. I tried to make lunch in the kitchen as quietly as possible. Even with the dining room doors closed he could hear me but didn't complain. Don't know what to do about making the breakfast smoothie in the morning without waking him up. I could do it at night but too knackered now.

He did play on the computer this evening after supper. And played his favourite music - a recording of his niece singing Away In a Manger which he loves. Although his left hand is getting worse and he can't fill in the password so I have to do that. If he can get his hand up onto the desk he can use the mouse. Sometimes he can and sometimes he can't.

Now I want to go to sleep but I need to wait up for him to finish watching Family Guy so I can get him into bed by midnight. I just hope he sleeps through the night. Unlike last night. Which is why I'm so tired now.

I know there is a way to do this without trying to rescue Robin. By letting him go. By letting him feel bored and scared and lonely - which he is anyway. Just be kind without thinking I must mend his broken heart. Like I tried to mend my mother's broken heart.

 And step back into mothering myself, taking care of the scared and lonely parts of  me......which after all are not the whole of me.

But the whole of me needs to sleep now.

Enough Now. Going Going Gone

I didn't know if this was a moth or a butterfly..... peering into  the kitchen through the  glass of the back door this evening.

When I opened the door she flew off into the mass of clematis leaves rampaging over the fence  - showing me the  beautiful zebra stripes of her wings. How can her inside be so different from her outside?

I didn't know the beginning and the end of my evening would be so different either.

6.15 pm. Supper is made.  On the counter a cooling pan of roasted sweet potatoes, carrots and butternut squash. Another pan of orange and red peppers, purple onions and  yellow courgettes. A feast of sunsets. Waiting for wilted spinach and a fried egg on top.

I'm going up the stairs to wake Robin after his usual early evening rest after his two outings today.

I hear him shouting for me. I hear distress.

I'm coming.

Can you help me - I can't get out ....I'm falling.

He's lying across the mattress, his feet on the carpet but I can see he's nearly slipping off the edge of the bed.

I get him to hoist his bottom  backwards but he can't sit up, can't do his usual rocking movement using his stomach muscles. I get the handling belt and strap it round his waist but it's not the right thing. I get one of the fat foam wedges that the OT left me and shove it behind his back. It does the trick and gives him some leverage. I  push him from behind with my knees and once he's sitting up he can stand up easily.

After his shower he wants to lie down again. I say No, not tonight. It's only 15 minutes till supper time. He says he'll play on the computer. I follow him up the stairs to his office on the third floor.

 Then he slips or trips and falls forwards and sideways, bashing his nose on the stair and hurting his shoulder.  He says he's falling. I say You are OK. Take a breath. I help him to turn and he manoeuvres himself onto the bottom step and stands up. He's shaken and shocked.  The side of his nose is bleeding. The first blood of all his falls.

I say no more.  Enough now. No more stairs.

So tomorrow he agrees he'll sleep in the hospital bed in the dining room.  I will make the room ready.  I phone a dear friend who will bring Robin's computer downstairs and set it up on the new table he assembled for me a few weeks ago, in anticipation of this day coming. His wife will take Robin out while we make preparations.  Two more angels looking out for me.

So another ending...the end of an upstairs life for him...the end of the life I live in my kitchen - which is attached to the dining room ,where he will be - for me. My last safe haven going, going, gone.

Not Free But Tasting Freedom

At the weekend - my last two days of respite, I sat in stunning gardens....in flower gardens and vegetable gardens and gardens with amazing views. I was invited for supper.... for lunch..... in the company of delicious friends....surrounded by beauty and kindness and bounty and abundance. 

And I let myself breathe into the clear space around me knowing Robin was safe and looked after. Even knowing he was bored and restless I still clung to my unencumbered hours - stretching them long into the night, staying up too late...putting myself back in the middle of me....for one last time.

And now it's over....I didn't sleep as much as I thought I would, I didn't cry too much, I didn't watch a lot of TV..... I didn't go for long walks or start yoga again.

 I  had a massage and a haircut and bought new glasses and went to the chiropodist and painted my toenails red. I hand washed winter jumpers. I made gooseberry fool and lavender shortbread and lemon polenta drizzle cake ( cooked twice) to share.

 Sometimes I felt blessed and grateful and sometimes I felt scared and lonely.

I tried to imagine if this is what it would be like to be really alone. To live alone. But it's not something you can practice when your whole life is still consumed by another.

I brought Robin home today but first we drove through our beautiful Devon county side, rolling itself up in the harvest of summer.  He slept a long time ....I made him a big salad lunch and chopped nectarines and my sister's strawberries into a bowl of  natural yogurt for his dessert....we drove to Sidmouth for his hands-on healing session with our lovely intuitive friend .....I immediately fell asleep  in the chair while she worked her magic on him.

Afterwards we sat on a windy bench by the sea and shared a tub of chocolate ice-cream - me feeding him with a plastic spoon. I couldn't help remembering years ago  bringing his mother here and helping her to eat a melting strawberry ice cream on the same bench.

Back home he slept again while I made supper -  a mess of  tomatoes, garlic, courgettes and  pattipan squash with grilled halloumi cheese and salsa verde.

  I kept asking myself, 

Is this easier now that I've had a break? Am I more patient, more resilient? Can I bear it now?

I'm not sure. I'm knackered now like I always am by this time of night. 

But  even so I loved my week, not free but tasting freedom..... a will o' the whisp glimpse into the future still knowing there is a long boggy road ahead. So it's back to one small step at a time.....which often means chopping an onion to start making supper. 

Day Five The Purse, Computer Games and Trusting

I'm at the till in Lakeland buying a box of latex rubber gloves. 

Except I can't find my purse. I rummage in all the pockets of my big wide open handbag.

I know it's not there by the weight of it.  My purse  weighs  more than the whole handbag. Rising panic. What was the last thing I paid for? Which shop was I in? Has it been stolen? I never close the bag properly. I'm totally trusting .......like not remembering to lock the back door.. The thought of having to cancel all my cards....doesn't matter about the cash...makes me sweat.

I leave the  latex gloves on the counter and re-trace my steps. I bought a tin of dark brown shoe polish in Timpson's but why would I leave my purse there?

Did I leave my purse here? I ask the man behind the counter in Timpson's.

Is this it? he says, reaching up to a shelf at the back of the shop.

I could have kissed him.

Then I remember - I took my shoe off and gave it to him to match the colour and I must have put my purse down to put it back on as I was leaving.

I'm so glad it was me and not a thief....right to trust after all.

This afternoon while I'm  driving Robin to Sidmouth I ask him,

How are you?

He frowns.

It doesn't work for me being there.

What 's the problem?

The people are very nice.....it's wonderful going out with everyone ....but there's nothing to do otherwise.

I realise I made all sorts of assumptions about how it would be for him.  At home he plays games on the computer or sleeps. When we discussed his care plan at the assessment the manager said they could set up games like solitaire and chess for him on the computer there. I said he would need a mouse because he can't use a touch pad.

 When we arrive back I ask to see the manager. She's away for a few days. As is the nurse who's in charge of Robin.  Another nice nurse says she'll come and talk to me when she has done the medication rounds.

I take Robin to his room. Ask for someone to come and help him go to the loo. No-one comes. So I help him. I ring the bell and ask of someone to help him get into bed. The nice nurse comes and says she'll see what she can do about the computer but it's the weekend now and the handyman won't be back till Monday. She says someone will come to help Robin get undressed and into bed.

I sit with him and we play Wordsearch games - waiting. No-one comes.

I want to go to bed, he says.

I ring the bell again. And just when I think I will have to undress Robin a male carer arrives and so I leave them to it.

I'm tempted to feel bad about not making sure Robin had the computer set up. But I didn't and it's probably too late now. I'm learning to live with the uncomfortableness of letting him be bored and trusting he'll find a way to cope and not blaming myself for it.

Trusting it's all working out for the best, for the highest good of everyone even when it doesn't fit my pictures....trusting and letting go...like I do about not locking the back door and not closing my handbag.....and that I am totally loved and protected whatever happens.... 

Day Four - Precious Days of Me Time

It's already late. I stayed up to watch "Love Actually"  the Richard Curtis film  I've seen loads of times. I practically know the script and sound track by heart. But I love it and tonight there is nothing to stop me indulging myself.

Guilt took a back seat today. 

I cry a bit into my almond mocha coffee this morning, sitting in a pavement cafe, when my friend counsels me to love my heart as much as I can...especially the little girl in me I have abandoned....when all the time I think it is Robin I am abandoning.

At Boots the Chemist I buy new glasses and sunglasses as my prescription  has changed in the last 2 years.  The optician says I have started cataracts in both eyes. I'm horrified. He says it's normal and not a problem and will take years to develop.  When I say how long? He says it could be in your seventies or eighties. I'm still horrified. He looks about 22 so wouldn't have a clue that my seventies are not that far away.

Cataracts, like dementia and MND only happen to other people.

I also buy a cardi in the White Stuff sale. The label says the colour is Pickle Green - a sort of muted lime colour. It makes me feel rustic and  autumnal.

Although Robin has already been out with a dear friend this afternoon,  this evening I  drive him around local country lanes and we stop for a carton of Happy Monkey strawberry smoothie, in this recently cut wheat field outside Silverton.

And although he can't tell me where he has been or what he had for lunch or what he's been doing this morning  it's so easy to be with him and just listen and give him all my attention. Because later I will take him back and someone else will feed him and wash him and undress him and turn on the TV and help him into bed and take care of him. And my evening stretches ahead of me with only me to please - a lovely lovely gift.

When I come home and I'm getting out of the car I notice this furry bee feasting on the lavender bush by the front gate. And because I'm not rushing in to make the supper, or Robin isn't waiting for me to take his shoes off or go to the loo I can capture him in my camera. So happy I didn't miss this one brief  perfumed moment in these precious days of me time....

Day Three - Running Free and Wild

I was electrified, watching this herd of wild horses at the Combe estate last night, running and chasing, kicking up  dust, nipping each other, playing or challenging, following  the instinctive rules in the hierarchy of their horse world. Running free and wild within the cradle of that boundary.

Today I made jam.  From gooseberries and strawberries and black currants that I found in the freezer. Picked last summer from the allotment. The end of that now.

I bought sweet scented stocks from Waitrose and lots of other delicious things I didn't need. And felt guilty for a while about spending too much money on treats for me.

For some of the day I felt sick with guilt about changing an arrangement to see Robin this morning. Another dear friend took him out instead and I will visit him tomorrow. But I couldn't get his face out of my head when I told him the change of plan.

No, I want to go out with you,  he said , all crumpled.

It felt like a betrayal. I did talk myself out of it but it shaded my day.

 I also had the follow up letter from the consultant neurologist we saw last week which threw me back into the whole question of Robin's capacity. Later I had a very helpful conversation with our archangel M about it. But it leaves me daunted and burdened. I see how there is no escape from any of it - respite or no respite.

The lovely carer who took Robin out this afternoon  texted me and said he was fine and was enjoying the five star hotel. I spoke to him twice on the phone and he sounded like himself, his voice more slurred maybe, but he said he wasn't too bad.

I notice what a powerful hold guilt has on me. Even though I know all the theory about it, and how it's a waste of time and it's only hurting me but it just plugs into a belief  that I've done something wrong somehow and I just find ways to prove that's the case.

Even so, for a while today I did relish my sweet freedom..... and sat outside in the garden for a long time, the evening sun still warm, with a cup of tea and a new book to escape into. My version of running free and wild in the circle of my respite boundary.