Amazing Care and Attention and One Walk in the Park at a Time

It's 6pm when I get up from the computer. I don't know how the afternoon can disappear so fast. I take my camera and walk to the University Parks - dusk already falling. I love it that I can just leave the house whenever I want to, for as long as I want.  Such a long forgotten, taken-for-granted freedom. The only reason to come back because it's getting dark, my fingers are dead white cold and I'm hungry.

I was awake in the night, my mind churning. So I overslept. At the home  they are getting Robin up after his second sleep, after his shower earlier. He says he doesn't want breakfast. I ask the carer to bring the green smoothie from the fridge and he drinks most of it. We are just about to go out when the teenage doctor comes in. He says not to worry too much about not eating and drinking yet and prescribes Movicol for constipation.

  As I'm manoeuvring the wheelchair past the bed the physiotherapist who works at the home arrives and wants to talk through all Robin's needs. He's lovely with Robin who doesn't understand a word he says as he has a strong Nigerian accent.

By the time we get into the car I can see Robin is already tired and we get as far as the turn off for Haldon Woods -  about 10 minutes -  and he wants to turn back.

I finally get him into bed and he's nearly asleep when the respiratory nurse arrives  - an hour early - and wants to demonstrate how to use the breathing machine to all the carers so that they can help Robin  to fit the mask, check the timings, take it off for him.. We went to the hospital a few days before he came in to the home for him, and me, to learn how to use it. But we never got the chance as everything else happened so quickly.

I can't decide whether to stay or not - but in the end I wake Robin up and warn him about what's going to happen and then leave them to it ...with all the carers gathering outside his door even through it's their lunch time.

I'm so grateful for all this amazing care and attention he is getting....releasing me to start caring for myself ....slowly, slowly....one walk in the park at a time.

  

A Great Cave Of Tiredness

Sunset outside my study window tonight.

I buy too much in the organic farmers' market this morning....forgotten how to shop for one person.

So  at home I make a big soup  - bright orange squash, carrots and sweet potatoes, ginger, garlic, leeks, loads of spinach and coconut milk. And I roast squashy tomatoes with more garlic and basil leaves.

Although I'm on time this afternoon Robin is waiting for me again in the wheelchair at the front of the house. I have brought him a green smoothie and wide fat straw to drink it through.And some small chopped up squares of chocolate brownie from the market. He refuses the cake but drinks nearly all the smoothie after several stops on the way. 

We only have a short circular drive in the lanes round Kenn and Kenford  - small villages close to the home -  as Robin starts yawning and wants to go back.

In the room I cut his finger nails and brush away the horrid white coating on his tongue with this electric toothbrush. I ask the carers to do the same morning and evening. 

Lovely staff nurse J comes back after going to the hospital for training in how to use Robin's cough assist machine. I'm impressed.The room fills with carers and I demonstrate the machine to them. Robin co-operates but he just wants to go to bed. So I leave him under the covers with the window open and the wide flat bell by his hand.

 And I go and sit in the tiny office with nurse J and fill out more forms for Robin and tell her his diary of visitors for next week. He has me and someone else every day. 

We've never had anyone like you before, she says.

I have a bowl of my soup for supper watching the Great British Menu. But as soon as I sit down I want to fall asleep.....it's all catching up with me...all those long nights on call, always ready to get up to Robin......now I don't have to. Now there's just a great cave of tiredness in the place of that deep well of duty and care.

Indian Summer...Going Off The Rails....Not Too Bad

On Sunday I suddenly realise I have time now so I walk in the University Parks. It's the first time for months. I haven't walked anywhere for months. It's a beautiful golden Indian summer day. Late September  sunshine - it always reminds me of my first job in London, after I left school, as a volunteer teaching assistant walking to the tube station at Kings Cross in a brown crimpline mini skirt....and my first term at University in Cardiff walking down the hill to my first lecture in new red suede shoes..

Pennsylvania hill, a few minutes from our house, on the way back from the park.

I haven't got used to this new freedom yet...my days still full of  Robin and arrangements and worry...but my mornings, my evenings all mine. I'm afraid I may get drunk on this little liberty and go off the rails a bit -  watch random TV, get fat on slabs of chocolate and bread and honey and stay up all night reading a novel.

Hasn't happened so far - as if I've forgotten how to let go....or rather just lost the taste for it.

All morning while the cleaner hoovers and dusts and reclaims the house for me, I work on the computer and on the phone, and try and cancel a holiday I booked for us back in March when I thought we could still travel. I'm waiting for calls back from the GP, the speech and language therapist, the hospice care nurse and the neurologist's secretary but suddenly it's time to go and visit Robin and I can't face eating lunch so I drink a green smoothie and take the other two to him in a cool bag.

I'm feeling encouraged about  him as he had a good visit and drive this morning with lovely P.A. She insisted he drink something and he ate flapjacks and chocolates that she had in the car. He's waiting for me out side the home, sitting in the wheelchair, in the sunshine, with one of his nice carers.

We drive out to Dawlish and I stop every now and again to take photos but really it's a secret motive to get him to drink a few more sips of the green smoothie I whizzed up for him this morning. He shakes his head but drinks it anyway.

When I ask him how he is, he smiles his crooked smile and says,

Fine, not too bad.

So I don't mind so much about the teeth grinding and I turn up the volume of Handel's Water Music as loud as he wants.

7 Chocolates Triumph.

Thirty years ago today. The beginning. Showered with confetti. Our little bridesmaid, my sweet niece, shares the same wedding anniversary today -  8 years ago for her.

This morning, while Robin is out with his favourite Age UK  enabler, my sister comes and helps me to fill out long forms for Lucerne House. One about Robin's life  history,  his school days, his career, the important people in life, his interests, so they know he was. And the other an Advanced Care Plan. About his wishes at the end if his life - does he want to be resuscitated  in the event of heart failure or kept alive with breathing apparatus....? He doesn't. I have already filled in a similar form and talked to him about it first.

All the staff at the home are very concerned that he isn't eating and drinking very much. And keep tempting him with different drinks and spoonfuls of food. Today he refused breakfast but ate a small pureed lunch. I didn't ask pureed what.

This afternoon I bring him red roses and chocolates. We wheel him into the lounge and show him the photos on my computer of our anniversary tea. I feed him a mango smoothie and my sister is a witness to him eating half the box of chocolates. I eat the other half just to encourage him.

All the carers are very happy about it and it gets written down in his food and fluid chart - 7 chocolates and 180ml juice.

Every ounce and millilitre  feels like a mini triumph.

Later the activities lady comes in with her dog, Lily. She and Robin have a silent exchange of looks.... Robin makes his funny faces at her but she seems to have a perfect understanding of who he is. No life history form filling necessary.

This was the beginning.....all that life history in the middle ....and the ending advancing now.....stalking us with food charts and breathing machines and wheelchairs .....but never touching all that love in our hearts .....beyond breath and bone.

Another Kind Of Marriage

Saturday morning - my sister arrived early to help me get ready and to stop me spinning on my whirling axis..

The family sent gorgeous flowers....I laid the table with the  beautiful cotton lace cloth my Aunty Margaret gave us for a wedding present....crocheted by the women of  South Africa. I baked two cakes. One decorated with cape gooseberries and one 

with my father's raspberries.   Our guests arrived, a friend picked up Robin from the home,

and they toasted us in Prosecco, drunk out of Robin's grandfather's precious green cut glasses.

 Robin drank an Innocent banana and pineapple smoothie out of another green glass with a straw. And said quite distinctly,

Enjoy your alcohol!

We opened  gifts and cards with loving messages inside and

tucked in to the anniversary tea ...sandwiches and biscuits and all things gluten and dairy free kindly contributed.... Robin ate an egg sandwich and a green olive and a spiced pecan nut fed to him by whoever was sitting next to him.

But what he really loved was the singing .....our friends sang to him in their beautiful voices.... his favourite song  Nkosi Sikeleli Africa..... he used to know all the  words....he doesn't remember the song now but he remembered something ....the tune....the feeling in the music.... the love in the room... which made him cry. And me too.

Then I cut the cakes and we fooled around with the roses.

 He ate one mouthful of the chocolate olive oil cake but then he was tired and wanted to lie down. The  hospital bed has gone to the home. He can't go upstairs so we bribed him with a short drive and my sister took him back.

Everyone stayed and helped clear up and wash up and we divvied up foil parcels of egg sandwiches and farina lavender shortbread and chocolate cake to take home.

And when they had all gone and I'd hoovered up the crumbs and the house was quiet I poured myself a glass of Prosecco and sat on the sofa and re- read all the cards and cried a bit.

 Even though it's the end of our 30 years I just feel so grateful for what we did have and so blessed by so much love and care and support in our lives now....an unexpected blossoming out of an unexpected axe blow...life shortening and life enhancing all at the same time. Another kind of marriage - a kind of miracle.