Life Saving Green Smoothies?

7am I am up making green smoothies to take to Robin .

9.30 arrive at Lucerne to meet new GP who I've ben told comes between 9am and 10am.

Nice carer still getting Robin dressed.

He sits in new battery powered wheelchair at table by the window and I feed him a bowl of mashed banana and peach yoghurt. Our view is of the back of the building and lovely green trees including an apple tree dropping its fruit .

 He takes sips of the green smoothie that I brought in small plastic water bottle. 

 To pass the time we look at the photos of the family and friends in his album. He knows who everyone one is even though he can't say their names.

The doctor is delayed. Robin is frustrated. He wants to go out for a drive. Instead I take him on a tour in the new super duper wheel chair, of the downstairs rooms, the dining room and physiotherapy room, the TV lounge and the small courtyard garden.

11 15am the doctor arrives but needs to see other patients first. 

I get Robin to play chess on the computer and listen to Carmina Burana at the same time. Using the cursor is painfully slow for him. He has a 'camera eye' programme installed which uses his eye as the cursor - he just has to move his head - but he doesn't want to do it yet.

Then he says, I want to lie down.

 I say, the doctor is coming very soon although I've totally lost confidence he ever will.

When he does finally arrive at 11.45 he's a bit stressed and looks about 12 years old.  I give him a quick potted history and how Robin's conditions affect him and he asks about his end of life requests and about not doing any invasive procedures. Which Robin doesn't want.

He just wants to go to bed. So the doctor leaves, the nurse calls for a carer to come, but they don't so I get Robin undressed and into bed. He is exhausted.

Later, talking to the nurse in the tiny office she says the doctor was very impressed with the green smoothies and that Robin should definitely have them and they are much better than the prepared, vanilla flavoured or strawberry flavoured high calorie drinks he could prescribe.

I like this doctor. But now I have a green smoothie job for life.

 I don't mind - so long as Robin drinks them. For as long as he can. And if he doesn't it's OK too  because I'm not trying to keep him alive. Even though it looks like I am.

I just don't want him to suffer. But I suppose it isn't my job to prevent that either.

On the way home I stop and do some shopping at Waitrose for the small anniversary tea  we are having tomorrow here at home. Although the actual date isn't till next week when we will have been married for 30 years.

I would never have imagined in a hundred years that this is how we would be celebrating it....with Robin drinking out of straw.....and a wheelchair in the hall.

Early Days

Teignmouth this afternoon.

This is the view from the car. .....in a disabled parking space next to a cafe on the on the sea front at Teignmouth. I am feeding Robin small plastic spoonfuls of coffee ice cream out of a tub. And encouraging him to drink the rest of the vanilla flavoured fortified vitamin/protein drink I brought with me - a free sample from the nutritionist after his diet was assessed a few weeks ago - to get him to put on weight.

When I rang Lucerne House this morning nurse J said he hadn't eaten or drunk anything much at all, all day yesterday and refused breakfast. At first he would only have one sip of the vitamin drink. I told him what would happen if he stopped eating and drinking. I'm just thinking about de-hydration/ urinary infection/confusion/ blood electrolytes going bonkers....but I explain it simply. I think he understands. In the end he drinks the whole 200ml.

They are keeping a chart of his food and fluid intake but I can see they are concerned. I am too. Tomorrow I will take in a supply of the fortified green smoothies that I make him for breakfast and see if that works. Maybe refusing to eat is all that is left for him to feel any sense of control.

 At least he is happy in the car when we are driving. Last night he just wanted to walk around the corridors of the home and didn't go to bed till midnight...it will take time for them to get used to him....and for him to settle....I hope.....trying to remember it is early days.

Views from the bottom of the garden this evening when I came home.... started to bring in the sheets and pillow cases from the washing line, still damp from this morning... noticed how beautiful the light was.....wanted to capture it....knowing I could take my time with all the night hours stretching ahead....just me and all the things I still have to do....without being torn in two ....without being called away....without being interrupted...without despair and frustration and weariness....a new and lovely dimension to relish. 

This End And This Beginning - And Still The Loss Of Him

Robin sits on the perching stool in the paddling pool at the kitchen sink -  I wash him for the last time.

While I'm feeding him mashed up banana and coconut yoghurt lovely friend arrives with mate and pick up truck. They load up the computer and all its tangle of wires, the table and lamp, the little chest of drawers and the huge heavy riser recliner chair. They have to work around the other 2 lovely men dismantling the hospital bed and taking it out in parts to the other pick up truck also parked on double  yellow lines in the street.

Lovely P.A. arrives, gives Robin the last of his banana and then takes him for a drive with the instruction not to arrive at Lucerne house before 11 am where I will be unpacking his suitcase and hopefully they will have put up the bed.

It's like a miracle when I arrive in his room and it's all set up - computer working, chair in place and bed being mantled. I unpack Robin's things....put up photographs and the clock and his diary by the bed so it's familiar like it is at home.

When PA brings him perfectly on time, all he wants to do is get into bed and sleep. The lovely nurse J and another carer help him and I have to translate about how he insists on taking most of his clothes off..... Then we leave him with the curtains drawn and I say I will come back later ...( with his double duvet and sheets as their bedding isn't quite up to what he's used to.)

I call in at the house of a dear friend who lives very close to Lucerne house and she restores me with  frothy coffee and the best chocolate brownie in Exeter.

I buy salmon steaks and light bulbs on the way home as if it's just an ordinary day.

Back home I start clearing up the mess in the upside-down dining room...then suddenly it all hits me...this ending and the loss of him ....this beginning and still the loss of him.....this  new relief and still the  loss of him....and I hollow myself out with crying ....tears soaking the carpet. Then I get up and start sweeping up the dust balls smudging the empty space that was occupied by his bed.

When I return to the House Robin is still in bed, although he has had lunch and tiny walk outside, and I switch on the computer, play him songs recorded by the choir he used to sing in which  he loves and which makes me cry some more and makes him sing Poo Bum Willy ( but not very loudly) to the tune.

Then we drive off to Mortonhampstead on Dartmoor with Beethoven's ''Emperor" piano concerto streaming out through the open windows, startling the sheep and  remembering my mother who loved  the waterfall sound of this piece and took me to listen to it at the Bournemouth Winter Gardens when I was a schoolgirl.

And although it's still really annoying  - Robin's constant teeth grinding - I don't let it spoil anything because I know that in a little while I will take him back ....and someone else will get him into bed....and take care of him ...not like I do...but well enough....more than well enough...

And then I will drive home where my sister is waiting with a gorgeous supper for us ....and we will watch The Great British Bake Off...right to the very end with no interruptions and no-one calling me....and then I will go to bed in my big empty silent house... breathing into this momentous end and this unknown beginning all at the same time.

And now, tonight, there is no rustling of a baby alarm and it's only my own quiet breath sighing into the air in the bedroom.

My sister's gorgeous supper.

Sharing The Load

The estuary at Plymstock on Sunday morning.

Too late ....too tired .....to write anything sensible....too busy still packing and sorting things for Robin to take tomorrow. But my heart it light after meeting with J, the staff nurse in charge of the unit where he's going. She is so lovely and re-assuring and experienced and tells me not to stress or worry about anything as he will be well looked after. And I believe her.

We sit in her tiny office just next to the room Robin will have, with the door open and people coming and going who are sorting out his dietary needs  and his bed which needs to be longer, and and putting up the new TV so that they will be ready for him tomorrow. And I discover he won't need WIFI in his room just yet as he can play his games and listen to his music without it.

I have written screeds of notes about all his needs and his routines and his habits and likes and dislikes and she takes it all down and says there will be lots more paper work later. And that it will take a little while for them to learn him and his ways and he will get used to it ....and so will I .....

And I will. Already I feel as if a great weight has been lifted off my shoulders and I can breathe for the first time .....I've forgotten since when....I just have to get through this night ....with one ear always open to the sound of Robin breathing through the baby monitor....breathing and coughing and sighing....in his own world on his own path.

And  now I will be walking beside him but with many other hands and hearts - professional hands and hearts  -  sharing the load with me. 

Longing To Be Free

2am Saturday. The passage of the moon outside the bathroom window. 

I couldn't sleep for thinking about my freedom.

All day I make arrangements about Robin going into Lucerne House on Wednesday.....getting the furniture delivered ( thank you, dear friend, with a pick-up truck), getting him a TV ( thank you, dear friend, for doing it for me -  ordering it, buying it, collecting it) finding out about getting WIFI in his room ( thank you, dear friend, with local knowledge).

 And I cancel and re-schedule appointments. And wait for calls back about the finances and the care-plan and write emails and speak to the GP and the hospice nurse and the community nurse and the occupational therapist. And I make lunch which he doesn't eat.

  And this afternoon at the hospital we sit with the respiratory nurse while she demonstrates how to put on the breathing mask, attached to a small machine which will help to regulate Robin's erratic breathing. Thankfully he can start by using it in the day and if he has to use it at night I won't be the one to worry about it. He says it helps a bit.

Tonight I know for sure why I can't carry on looking after Robin at home. He breaks my heart...not just because he sounds so breathless, and has to keep clearing his throat, or that I can't understand what he says, or that he's so stooped and slow and looks as if he's going to fall over any minute,  or that he can't get off the loo without help, or that he takes so long to swallow a mouthful of anything and I'm afraid he's going to choke.... not just because I'm afraid for him all the time....but because I'm afraid for me.

That if he calls me one more time to blow his nose or have a pee, or have a crap,  or change the TV channel or scratch his ear, or to get out of his computer chair, or get out of bed or do his teeth ....when I'm trying to wash up or have a bath or write an email or watch a programme.... trying to have some moments alone... ....I'm afraid I just might shout or scream or break something....or hurt him.....or me. 

You'd think I could bear it because it's only two more nights....but what's more unbearable is saying goodnight to him with his heart so full of love and gratitude and mine so full of guilt and sadness...and longing to be free.

Thank You God

Someone else's heritage tomatoes and apples.

This morning Robin is so precarious on his feet, and  I'm so afraid he is going to fall, 

that after breakfast I get him into the wobbly, dusty wheel chair.

I phone the home, Lucerne House, where he's on the waiting list. They say they will call back.

The hospice nurse phones. How is everything?

Not good, I say.  I need a proper wheel chair.

She says, 

 I'll get in touch with the Occupational Therapists, and get you one and some training about hoisting and transferring.

I say, I have an appointment with them next Friday.

 She says, You need it sooner than that.

When young, strong, responsible PA arrives to take Robin out we wheel him to her car and load him in with the handling belt. And then she says, 

Go to your lunch. I can do this. 

I dither ...should I go?

Yes,  she says, Go. And don't rush back. 

I love her,  and her can-do experience. Robin loves her too.

So I grab my cool bag packed with the spring onion and courgette omelette I made earlier and the jar of Dukkah and the bowl of green beans and tomatoes and head off to my lunch to share ....only 10 minutes away where my sister and I are meeting our friend.

I tell them the saga of this morning. They say, call Lucerne House again.... and then start looking up on the internet all the homes in Devon who take people with MND.

When I get through on the phone the manager says.

Oh, I was going to call you this afternoon. I have a bed for Robin. He could come next week. Someone will ring you on Monday to discuss the finances.

I can hardly believe it. My world - and Robin's - changed in an instant. I have told him  - for 2 weeks to start with. He says, 

We'll see how it goes.

Just now when I tucked the duvet round him and asked him how was your day he said,

Probably fine but I can't remember. What are we doing tomorrow?

Whatever we do tomorrow is fine with me. The relief is like winning the lottery...... an answer to my prayers....... a get out of jail free card....a miracle and a gift. I hardly dare even think about it. How blessed and lucky I am.

Thank you God.

I Am His Memory Keeper

Late roses in Robin's aunty's garden.

This afternoon I have the patience of Job - or a pussy cat crouched at a mouse hole.

Because I have had some sweet space and nourishing time for me while someone else has been looking after Robin all day. His lovely carers at the Mede say how much he has changed in a week....lost his confidence about walking.... more stooped....much quieter....very tired....breathless.

Tonight  after his few mouthfuls of supper, I sit beside him on the profile bed with the pillow end raised up. (The electric mechanism helps to get him half way up but he still slips sideways and panics and thinks he's going to fall off.So I have to find a way of hauling him into a sitting position without pulling on his weak shoulders or straining my back.)

And I say,

I can't go on looking after you at home. Because I think you are getting worse and you need more help from professional people like nurses. We can find a nice place for you. It's basically long term care. And I can visit you every day. What do you think?

What about the money?

We will find it. Because you worked so hard for us all those years

.

If it works for you, he says. We can see how it goes. I want you to have a wonderful life.

We had some good times didn't we, I say. And some rubbish times too.

He looks at me over the top of his glasses and says,

Yes, because I screwed up.

No, it's just what happens between people - good times and bad times - no one's fault.

But I'm crying.

Will you blow my nose? he says. I want to lie down now.

So I help him turn on his side and  cover him with the duvet. And then I go into the kitchen and cry some more. And start washing up, trying not to feel that I've somehow failed. That I'm not abandoning him. 

But still, I am his memory keeper.

 So I just feel terribly sad - for his whole big life trickling away. And the guillotine end of ours.