Thursday, 30 June 2016

Little Breakdowns

Tonight I have 'a little bit of a breakdown' in the words of Paul his song Gumboots...

I was having this discussion
in a taxi heading downtown
rearranging my position
on this friend of mine
who'd had a little bit of a breakdown
I said hey you know breakdowns come
and breakdowns go so
what are you gonna do about it,
that's what I'd like to know

I don't know what to do about  mine.  I was on the involved pee in the slippers again ....and this time I knew it would happen and asked him to stand and pee... but he wouldn't so it was a flood on the floor again....and then my own floodgates opened ....while I'm mopping up....

At least I'm feeling it...all that rage and hopelessness.... the harshness of it .... telling myself I can't do it any more when I know I can...know I will carry on....just soaking my pillow....nothing to do about it....breakdowns come and breakdowns go.....

And I never got to finish my conversation on the phone which is even more upsetting....nothing rational about little breakdowns....

Wednesday, 29 June 2016

29th June On This Day....

29th June . It's Robin's niece's birthday today. She will be 12 years old....or is she 13...awful that I don't know.

On this day 29th June 2105

Tiger - the pussy cat from next door. Our neighbours told me yesterday that she died last month. She was only a few years old.

29th June 2014
Our neighbours told me that our allotment has been taken over by a nice South African woman who already has an allotment and is using ours as a community project  - lots of people using it  - which makes me happy to know it is in such good hands.

29th June 2013

Making pink elderflower cordial - that is one thing I miss from the allotment -  the huge elder niger tree there. Another year I will go back and ask if I can pick some lacy blossom heads...but I haven't got the heart for it this year.

29th June 2012
Supper in the back garden.

29th June 2011
Aberdovey in North Wales on holiday 
 with my family including my nieces and nephews and my new born great nephew only a few weeks old. It was the day Robin stopped working for Barchester Green Investments...the end of his career.

29th June 2010 

Lumch in the garden...Robin was about to be diagnosed with dementia a few months later.

29th June 2009

Supper in the garden....we had no idea what was coming.

29th June 2016 - no photos - cool, windy, raining off and on.

Everyone is late today. The hospice nurse we are expecting doesn't arrive at 11.30am  Only an answer machine when I ring. Robin is anxious and restless so at 12 .15pm  we go out to lunch in a garden centre. I buy him a jelly drink in a pouch instead of a coffee. Thicker liquids are better - he seems to cough more on water now. We share a cheese and tomato panini. At least I eat most of it. 

Back home there is a message from the hospice nurse left at 12. 27. She came but we'd gone. I make another appointment. It seems the person she saw before us was very poorly so that's why she was late. So I don't feel so cross.

Robin's carer is also late - stuck in traffic. I ask her to buy some jelly drinks for Robin on their way to Plymouth. She can't find any in the supermarket but comes back with some yoghurt  drinks in pouches instead called Suckies  meant for children but perfect for him.

I rush back from my dental appointment on Ottery St Mary to be in time for the MND co-ordinator who is coming to talk to me about the PEG feeding. She's late but I don't care any more. She's lovely and helpful and informative and I feel clearer about what to do. I explain it to Robin but he says he doesn't need it. I say not yet but we will see the respiratory consultant next week and he will advise us.

Then I give him one of the Suckies - horrible name - which he really likes. The  nice MND woman says he needs more calories now  - more fat and sugar. The PEG feeding tube would be a way to get more nutrition into him if he continues to lose weight.

The days of the summer allotment..... and wine with supper in the garden..... and proper plates of food and an appetite ....for anything.... seem long ago now.

Tuesday, 28 June 2016

Tired...No Room in my Head...Last Straw.

This afternoon while a feisty wind blows the plastic chairs around the garden I sit at the kitchen table with Robin.  He's had a busy day without me. My cup of tea is  Earl Grey in a china mug. Robin's is Roibosh  in a plastic beaker raised up on a stack of CDs so he doesnt' have to bend this head too far to reach the straw.  I'm feeding him a delicious moist cup cake made with cooked quinoa and raisins  - a gift from our healer friend.

It's rare for us to sit together now and have a cup of tea  - I'm usually doing ten other things between his mouthfuls of cake. But this afternoon, after huge baked potato lunch and  lovely catch up with my sister and my cousin's partner in Taunton, I come to a full stop. 
I feel too tired to even keep my head up. I rest it in my hands and cry a bit and tell Robin I'm very tired.

He asks,

Any particular reason?

Too much to do. And I go to bed too late.

I'm sorry - I'm screwing up your life. I don't want to do that.

It's not your fault. And everything is a bit much when I'm this tired.

So we won't go out now?

Only to deliver a letter to the place where  you are going to go for a week. To have a holiday so that I can have a holiday too. 

He gives me a look. Yesterday he said it was going to prison. Well it's a 5 star luxury prison then.

And we need some bananas from Morrisons.

I notice that I have no free attention now for anything like art or music or ideas or opinions or things of the world or spiritual things. I tried to read the Guardian on Saturday and couldn't get further than a headline or two if there's no room in my head for anything except things like must buy more bananas.

 As I write this Robin's slippers are spinning in the washing machine. Best not to know why. Bit of a  last straw tonight.

Monday, 27 June 2016

Putting Off The Day Of The PEG

Damian Hirst's Verity statue in Illfacombe in North Devon - our destination on Saturday. I can admire the feat of it ....the skill.....but I don't like it.
Last time we came here,  co-incidentally a year to the day, 27th June 2015, we had a picnic on the sloping grass bank, walked from one end of the town to the other and up the steep hill to St Nicholas's chapel and licked ice cream cones sittings  on the harbour wall.

 And we had no idea that a year later  Robin would not be able to either sit on the grass, or hold a plate on his lap.

This time we parked by the statue, had lunch in a nearly empty pub - Robin had a few mouthfuls of a huge plate of macroni cheese - I had a few myself while I was waiting for them to bring me a second plate of fish and chips as the first one was cold. We bought ice creams - in tubs this time - but I ended up eating Robin's( blackberry) as well as mine( strawberry). He said it was too cold. I think his tooth might still be sensitive after the nightmare filling. Then we drove home again.


In Sidmouth today after Robin's hands-on healing session with our lovely healer friend. Robin says he  always feels better afterwards.  She says she can only trust it helps him. I always doze off while she's doing it, so it helps me too. 

This morning, the phone rings the minute we get back from doing some chores in town. It's the MND co-ordinator I've been trying to speak to for ages but we keep missing each other.  Then the door bell rings. It's the woman from the Care Agency come to interview us about setting up some morning visits for Robin to get him up and dressed so I can have a break. I let her in, the phone in my hand.

I  suddenly feel overwhelmed and wobbly and  find myself crying into the phone to the nice MND woman.....trying to talk about the possibility of PEG feeding for Robin ( tube in the stomach) .... and when should we do it. She says when is a better time to call back...I look in the diary ...there isn't a better time because it feels like every minute of every day is already booked up with appointments. In the end I say I'll try and ring her back her tomorrow after I get back from my visit to Taunton and before Robin gets back from his outing with his carer.

 Then I make tea for the woman from the agency and we start filling in the forms which take an hour and a half. After a while Robin says he has to go and lie down so I take him upstairs and undress him and get him into bed and go back to the woman from the agency and explain Robin's routine and what he likes to eat and where he went to school and how often I want someone to come.

 I say 3 mornings a week but there is a waiting list so it may not be till August.

After she leaves I make lunch and hang the washing on the line and then go and wake up Robin and get him dressed and feed him the feta salad while I wash up and gulp down my own lunch so that we won't be late leaving for Sidmouth.

We are late in the end because we get stuck behind a  mobile home on the back of a lorry going at 20 miles an hour.....and my neck is ramrod tight.

After the session  I'm amazed how far Robin walks along the sea front....but then there was the lure of tea and cake at The Clocktower Cafe at the top of the hill. I don't mind what he eats now. He's lost 2 more kilos when I weighed him this morning. So blackcurrant cheesecake is fine.....putting off the day of the PEG a bit longer.

Friday, 24 June 2016

Irrevocably Changed

The best thing about today -  which was relentlessly brimming over with caring - was being in the garden, in rain and sunshine, with a dear friend who made magic with all the bedding plants I bought recently. She brought colour and design and beauty to the patio, and much more, while I  stood on a ladder and hacked at the tenacious ivy stems creeping into the gutters and around the air vent for the boiler.

It helped to numb the feeling of shock and sadness I woke up to this morning to learn we have left the EU....although I knew it in the early hours watching the referendum results come in.....still not wanting to believe it. Then the PM resigning.... the stock market crashing.....the rescue by the Bank of England.....all this separation and division and divorce...and all feels  intuitively wrong to me.....and to 48 percent of the  people in the country as well.

Maybe something good will come of it ....52 percent of the people think so....but tonight all I can feel  is my country wounded, untethered, severed, bleeding.....irrevocably changed.  Or maybe it's just me.....seeing out there what's happening in my Robin loosens his grip on his own life....irrevocably changing mine.

Thursday, 23 June 2016

Trying to keep him safe....

No hot water this morning. I wash my hair in cold water and boil a kettle to shave Robin. It says low water pressure on the boiler.  I call our nice engineer at 7.30 am and he comes round this afternoon. He is about  to top up the system then I tell him that while I was sitting on the hard hall floor last night  next to Robin lying propped up on the stairs, keeping him distracted while we waited for the ambulance, I noticed that the pipes to the radiator were bent at an angle.

When he examines it he shakes his head in disbelief. The whole radiator has moved several inches to the right, off its brackets, and one of the pipes is leaking water as the valve has loosened.What he can't believe is that Robin did the damage without hurting himself. Don't know yet the repair bill damage. Just grateful it wasn't worse - he thought he might have to take up the floor if the pipes were cracked below.

Robin has a lovely day in Exmouth on the river with his carer from the Mede.  The OT comes and measures the space and I ask her to order the hospital bed which will come next week.I make plans for changing and moving the furniture in the dining room. And de-clutter some of the stuff. Already the big chest of drawers and bookcase have gone to Hospice Care.

All evening I go up and down the stairs with Robin as I've said he can't do it on his own now. Horrid and restricting for both of us. Trying to keep him safe.  Not really working. The place I feel really unsafe is inside....need someone to hold my hand in there.

Wednesday, 22 June 2016

Into This Quiet Quiet Night

I started to write this a few hours ago.....long past midnight now...the ambulance crew have just left....such lovely people. Even though it took them nearly an hour and a half to come.....Robin wasn't an emergency, wasn't dying....just sitting at the bottom of the stairs covered in two blankets ....lying back against several cushions. He fell.....tripped on his slipper which wasn't done up properly ( I was in a hurry... wanted to watch Masterchef) and fell forward into the hall. Not a bruise or a scratch  just a  little skin scrape on his knee from the radiator edge.....but he couldn't get up and I couldn't get him up this time. Time to call 999.

Time to get the bed downstairs.

 Luckily the OT is coming at 8.30 am tomorrow so she can advise.

Not sure I'll sleep much though... I can hear Robin coughing...into this quiet quiet night....which in a way I've been waiting for.....something to happen to force the next stage.....thank goodness it was without blood.