Friday, 29 April 2016

Old and Silly

I don't remember buying these tulips or even planting them.  Must have been last winter.But there they are in a big blue glazed pot in the garden surviving hail and wind and sun. Bringing me huge pink pleasure every time I look out of the kitchen window.

A dear angel sends me a beautiful picture with these words printed across it

focus on ways to love yourself.

 They filter in and out of mind...wondering how on earth I can do that as I hurtle and bumble through my day.....not sure I can remember what it is I love.

 I'm knocked off balance by a letter from the consultant saying his diagnosis is "Probable MND" and has booked Robin in for another 5 days of IVG in hospital to rule out the other diagnosis. However he says clinically everything points to MND.

I give up.  Robin is out with lovely brother-in-law so I plan to walk into town to have my haircut. But then I get distracted by looking up Elephant Jokes on the internet to send to a friend who needs cheering up. They make me laugh too - I remember them from the sixties - they are old and silly. I decide it's loving myself to laugh rather than walk today.

This is one of my favourites.

Q: Why did the elephant cross the road?

A: Chicken's day off.

Thursday, 28 April 2016

All Over Again

Too knackered to blog anything sensible tonight.

Listened to Matt Kahn this morning with one ear cocked for Robin's waking up  noises.
About Respecting The Shadow. Respecting the angry me. Saying I'm sorry you feel like that. Instead of squishing her away in shame.

 Felt restored and nourished by coffee and TLC from dear angels at my table.

Had curettage and cautery on a small lump on the back of my right hand at local surgery. Worried I wouldn't be finished in time to pick Robin up from the Mede. The procedure was by the same beautiful red haired, fair skinned surgeon who removed a BCC from my leg on the same day my  great-nephew was born nearly 5 years ago. My hand is still numb which is odd since it was many hours ago.

This evening I had a long conversation with  lovely woman from the MND  Society with one ear cocked for Robin's waking up noises.  She'll come and visit us. Advise when the next thing needs to happen. Feel so supported.

Feeling emotional from the shock and sadness in Robin's family - they are losing  a brother and an uncle, a nephew and a cousin. All over again.

Wednesday, 27 April 2016

Please God

 A  warm blue and yellow spring. Although we had a brief hail storm this afternoon -  a rattling racket on the plastic roof of the kitchen.

I wanted to make the phone call before Robin woke up this morning. I'm waiting to be connected to the DWP - Dept of Work and Pensions.To apply for a higher level of Disability Allowance for Robin. I have a magic form signed by the GP - a special measures form - for people with a terminal illness. It speeds everything up.

I hear Robin getting up and going to the loo. The woman on the end of the phone starts asking me questions.  In a very official way. I'm close to tears the whole time. She says it'll take about 15 minutes. Robin calls me from upstairs. I say I have to go and wipe his bum. She says no problem -  Take your time I'm not going anywhere.

I tell Robin I can't shave him yet as I'm still on the phone. He says he'll play on the computer which is just what I need him to do. So I can concentrate on the answers like, How far can he walk without difficulty - the length of 3 buses or only one?

Later on when I say to my friend on the phone that I feel numb and can't feel anything she says it's because I'm probably at the beginning of a  new grief cycle - disbelief, denial  etc.  I'm not sure what the other stages are but I think anger is in there somewhere and acceptance comes at the end.

This evening I jump right into the anger stage - my own personal hail storm.  A tiny thing -  but I'm enraged by not having what I want when I want it.  Robin wants something else - so we have deadlock. Usually I let it go. But not today. I do that childish bargaining/blaming/ranting thing - fortunately in my head.

I do all this for you all bloody day. Why can't you do one tiny thing for me just this once? It's only 10 minutes. 

I don't know if he can't -  because of his illness -  or he won't. 

Anyway he doesn't. And that's that. He says he's really sorry but I'm left to boil over uselessly. Knowing I'm  only hurting myself.  That horrible feeling of powerlessness. Of being angry with someone who depends on you. I want to  use my power and say I won't help you if you won't help me. But I can't say I won't take his shoes off or leave him there in his coat just because he won't have supper when I want it. Impossible and mean.

And how can I be angry with him when he has a terminal illness?  It feels unforgivable. I lose my appetite for supper anyway. Don't know where that fits in the grief cycle.

 I know that the thing that's missing in all this is perspective. And kindness. To me and to him.  I know it's there somewhere. I'm just trusting I'll feel it tomorrow....and my hard heart will soften again. Please God.

Tuesday, 26 April 2016

My Day Is Surreal

Somerset on Saturday -  in the gardens at the NT's Lytes Carey Manor and at Coburns Farm.

The two lovely Community matrons sit at my dining room table and talk me through the intricate maze of applying for Continuing Health Care funding and the options for now and later.  My mind fades in and out. They say Robin won't get it now but maybe in the future. It seems they are going to be the ones co-ordinating  his care - and  mine. I'm so so grateful to them, lightening my burden, and  to our NHS, stretched as it is to breaking point - the first ever junior doctors strike today.

My day is surreal..... as I make the next phone call,  arrangement, appointment, leave messages on answer machines, send emails, chop up avocado and tomatoes for lunch, put out the rubbish, watch Robin on the stairs, blow his nose .....and all the time there is this feeling of time running out.

 I feel numb, can't cry like I usually do.  I'm just carrying on as if everything is the same when everything is totally different.  I don't know how to balance on this shifting ground inside me.  I can't think about stairlifts anymore so I watch TV and eat squares of dark chocolate. Later, on the sofa, I hold Robin's hand, carefully because it's so swollen,  while he watches the News at Ten that he can't understand. And leave the washing up till tomorrow.

Monday, 25 April 2016

Something To Keep Him Here

The nice South African consultant with the kind eyes says that Robin's symptoms indicate Motor Neurone disease not Multifocal Neuropathy. He says in his heart of hearts he  always thought it was but had to follow up the results of the tests which showed it could  have been the other.

He asks Robin if his hands responded to the treatment. Robin says a bit. The consultant looks at me and I shake my head. They've got worse. But he says to honour his pact with Robin he will offer him one more round of IVG  treatment in hospital. But he will also contact the MND nurse specialist who will open up the door to loads more support.

He shows us the X-ray of Robin's lungs and some damage to the nerves in the right lung which explains his shortness of breath.

He says Robin is only one of three or four people in the world to have two such rare conditions. That MND ( his type is Progressive Muscular Atrophy affecting the lower neurones in the spine) doesn't usually occur in conjunction with his type of FTD. He says that makes him very special  - not necessarily in a good way. But special.

I ask if it will affect Robin's legs. He says yes. And he may need to be fed through a tube into his stomach. He looks at me and says it's something I could do easily - change the tube etc. He doesn't know me very well then.

He asks if we have any questions. Robin says, 

Am I likely to die in the next few minutes?

He says,
No, unless you are struck by lightening. But that's a brave question.

Of course he can't give a prognosis. But he did say it had progressed quicker than he expected.

Our wonderful archangel MC sits there with us and makes notes and asks very pertinent questions while my mind swirls into mush.

Afterwards he drafts a letter to our GP and the team of OT's and Physiotherapists and community nurses and asks for a meeting to organise  Robin's care and what to do about adapting the house. I couldn't have done this without him.

He rides off on his bicycle from the hospital and I drive us into Topsham for lunch in the same cafe where we went in December 2010 after we got the diagnosis of Robin's Semantic Dementia.

 But  before I drive away I ask Robin if he understands what it all means. That there isn't a cure for the  disease he has. And he may not live for as long as we thought. 

He says, Yes, and I may have to go into long term care.

But  he also says that his arms could potentially get better.

We sit in the cafe in Topsham and I cut up small pieces of his open toasted sandwich of stilton with fig chutney and walnuts and feed them to him on a fork- a hungry bird.

I eat my horrible tuna melt sandwich - tasting nothing. Gagging on the thought of what  darkness stretches ahead of us. 
Smiling at the man beside me who says that now he wants a chocolate brownie.

I wish there was something else I could give him. Something that would last longer than a few sweet mouthfuls. Something to keep him here a bit longer. Without hurting so much.

A few days ago.

October 2008

Friday, 22 April 2016

Very Unreal

Llancloudy - Tuesday.

The stairlift man suggests two options - a swivel chair and a perching stool - 
 as our stairs are quite narrow and Robin is  6' 2. He's on his way to Wales for the weekend so I say I'll get in touch next week.

The phone rings. It's the man with the hospital bed. He asks when I want it delivered. I panic as I haven't made room for it and ask him to hold on to it till I've sorted out the spare room. Our friend MC says get it all done as soon as possible. It  feels very unreal.

Robin goes out with lovely friend this morning and with lovely brother-in-law this afternoon. Lovely PA comes to sort out the new phones and arranges for a cleaner  to start in May.  Then she makes the shower and the bathroom sparkling clean.

 I  write an email to the consultant neurologist we are seeing on Monday. I read reams of stuff about MND on the internet. Then I catch up on an episode of Indian Summers on Iplayer. A stolen hour in the afternoon.  It feels very unreal.

Robin has just come to tell me that I left the back door open and he can't lock it. He's very out of breath. I try and imagine him strapped into the chair of a stairlift in our house. Very unreal.

Thursday, 21 April 2016

A Good Day

Wild mushroom arancini  ( risotto balls) - and fried quail's egg at the excellent Salutation Inn  in Topsham - treating a friend to a late birthday lunch.

Followed by this Chocolate Box -  a divine confection.

It was all delicious and civilised and normal - with the person opposite me feeding themselves so I could just enjoy my own food.

This morning we have an appointment at Exeter Mobility centre where they make/order in prosthetics and orthotics and wheelchairs....where they know what it's like to not have or be able to use a limb. The young curly haired therapist with a strong Scottish accent ( Robin doesn't understand him) measures and lifts and examines Robin's arms. He shows us pictures in  a catalogue of strap supports to go round the shoulder and upper arm. The aim is to make sure the ball and socket joint is supported. The muscle wastage and weight of Robin's arm could cause it to tear/slip. 

Curly haired man says he'll order in different options for Robin to try. I'm impressed. This is all on the NHS. When I get back from picking up Robin from the Mede there is a message from the Community nurse saying she has spoken to the OT and ordered a single profile bed - which is like a hospital bed with an electric riser mechanism  - for Robin to have in the spare room so he doesn't have to go up any stairs.And when would we like it delivered.
I need to talk to her tomorrow as I'm not sure he's going to go for it.

No crying today. Just those few respite hours make me feel normal, stronger, resilient . All the dressing and undressing and tieing and untieing the shoelaces feels manageable. And I still get to  shower him and make supper and feed him in time to watch Masterchef. 

So that counts as a good day.

Wednesday, 20 April 2016

Driving Falling Crying

I loved the purring of these rescued chickens waking me up every morning at The House Of Bread where we were staying near Coleford in the Forest of Dean.

Robin woke earlier and earlier. Before I finished dressing. I learnt to shave him. I've only ever shaved legs before so I'm not great at chins yet. Every day we drove further and further afield. I abandoned  visits to  areas of  outstanding natural beauty as walking rough ground is no longer an option. Robin prefers streets and shopping and churches anyway.

 First day -  Monmouth  - our nearest big town - famous boys' school,

 where all the signs are in English and Welsh.

 And Abergavenny - first trip into Wales. Ate in the wrong cafe - skinny dry chewy brownie - inedible.   Afterwards spotted gorgeous home made cakes in window of cafe next door - too late.

Evening drive to Symmonds Yat

and beyond.

Next day - Gloucester.

Down memory lane - stumbled on this old pub which I frequented in my early mis-spent youth when it was a Bernie Inn. My oldest schoolfriend used to waitress there. I learnt to smoke and drink Irish coffee and fell for a young man who made eyes at me....

The Cathedral...

From Gloucester to Ledbury for lunch... excellent baked potato and ratatouille.....

and back, stopping to catch late sunshine over the River Severn.

Next day  -  Tewkesbury - new leaves on giant beech tree in the grounds of

 the  Abbey.

On to Cheltenham for lunch - very good superfood salad in the Slug and Lettuce.

On the way home next day we call in to visit my cousin's partner. Nearly a year since he died.

She gives us coffee and delicious walnut cake. We talk of loss and loneliness and keeping on keeping on. Robin wanders around their wild garden bursting with blossom and new growth. Then sits on the sofa and keeps nudging me that he wants to leave.

Walking around  all those new or familiar places Robin stays upright and doesn't trip or fall once.

Last night at nearly midnight I hear a terrible crash and a shout. I find him lying on the carpet on the narrow landing between the bathroom and the bedroom. His electric toothbrush and one slipper beside him. He's on his left side his arm trapped underneath him. I manage to haul him into a sitting position and then push and slide him to the top of the two steps outside the bathroom where he can rock himself forward and up. He's shocked and shaken but I can see nothing is broken.

I lie awake a long time and think of ways to adapt  the house to make it safe for him. This morning I make an appointment with a man to come on Friday to look at fitting a stairlift.

 I cry on the phone to my friend. I cancel my cranial therapy appointment. I cry on the phone to my sister. I cry with relief when the lovely V comes to take Robin out for 2 hours. It's the first time for 6 days that he's been out of my orbit.
 When the speech and language therapist visits  this afternoon I ask her about the changes in Robin's speaking and why it is so nasal. And what if he can't swallow or eat. She says there are ways to help him - like a tube into his stomach. I cry then and she gives me hug. 

I've had such lovely messages and phone calls and emails today from people with their own troubles and pain. I'm blown away by such thoughtful kindnesses in all this awfulness  - makes me cry with gratitude.

Thursday, 14 April 2016

Praying For No Falls

Yesterday was like opening a window into a long ago self. I played Freddie Mercury very loudly in the kitchen with the doors open onto the garden while I ate my very late lunch of asparagus with a cold glass of bubbles and read my book with the sun hot on my skin. Feeling the bliss of more quiet hours to come stretching like a silver ribbon into the night.

Today the window slowly closed again. It was harder to stay out of the pressing details of my life and 4 o'clock was always going to arrive. 

When I rang  the Mede last night  Robin's lovely carer said he'd had a fall so it wasn't a shock to see the graze on the side of his head. He was with both the carers down by the quay in Exmouth when it happened.  No obvious reason - no rough ground or step to trip on. They called the paramedics who got him up off the ground. Nothing broken. Just a very sore elbow and right shoulder. They said he was OK and he even had a short walk last night.

I'm giving him dissolvable paracetamol and gentle arnica ointment for his graze. He seems slower and more tired like he was after his other fall last Monday. Still him but bruised inside as well as outside.

Tomorrow we are going on a little holiday to the Forest of Dean, staying in the same lovely cottage called The House of Bread where we stayed in September 2014 - which feels like a lifetime ago - Robin was driving then. Internet connection is not good so I won't be blogging till next week. I'm praying for no falls.