Friday 29 March 2013

AUTUMN





CHANGES

1937 Freyberg Apple Tree
 This is our special apple tree, not only because it's the same vintage as I am but because of its abundant supply of beautiful cooking apples.  Bart has just finished preserving more than 40 jars of apple sauce (in Dutch: appelmoes) which should last us well into next year by which time we most likely will have shifted to a retirement village.  I can't bear to watch him when he climbs the ladder to pick the yearly crop - he doesn't mind. Friends and neighbours get a good supply and they (and we) cope with the occasional creature that has managed to crawl into the apples although the green 'thing' hanging in the tree is supposed to prevent coddling moth doing its destructive work.
  For people outside New Zealand: the grey metal 'bandage' around the bottom of the tree is supposed to prevent possums sneaking up into the tree at night and enjoying a feast.  Oh, yes, it works!  Just perhaps as a matter of interest in case you've read last year's blog 'A Certain Hill' (15 October 2012, about the view from our house here in Opoho) - you can just see the 'town end' of this hill.  The name of the orange rose is Matawhero Magic which we planted in 2010 at the occasion of having lived 50 years in Dunedin.  It's been flowering magically.

Miriam has now been in the McGlynn Home for more than two weeks and she is doing well.  It's hard for her to accept that this has been a final move.  She keeps asking me: 'two weeks'? which has been her respite care time all these years  and I'll have to tell her that later this year we probably have to shift and that it would be hard for her to cope with the mess (Dutch: rommel!) in our home.  On the surface she accepts this but how much of her doubt is painfully internalised we don't know and most likely never find out. 

I still find this final change hard to accept but it's getting better.  The day after she moved into her new abode, I kept looking at the clock, wondering what time I could ring the supervisor at Miriam's new home to see how she'd been, had she slept well?  Had the taxi been on time for the Learning Centre?  The phone went and there was Nylla's voice, reassuring: 'Miriam slept well, had a good breakfast and was happy when she left in the taxi.'   Such relief.  Twenty minutes later the phone went again: Trudy Scott of the Learning Centre, 'Miriam has arrived in the taxi, she looks well and happy.'

I was allowed to cry, wasn't I?  Tears and gratitude for the care and support of everybody involved in this shift - the two people mentioned above; Margaret, the McGlynn social worker and not to forget Zena, the ISIS social worker who helped us in so many ways.  What a thrill to meet up again with Katherine who now works at McGlynn but had been Miriam's wonderful and intelligent personal carer years ago.  McGlynn are fortunate to have her expertise.  And we, we do count our blessings.

 During this process of adjusting I was not prepared for the intensity of grief I felt.  In an email to my friend Beatrice Hale I wrote about these feelings:
'I thought I had not made Miriam MY life, have written a book about her but still have kept my own life [and interests] all these years. Does caring have this effect on most people when they have to let go?  But I'm keeping the Dutch province of Zeeland's motto in mind: Luctor et Emergo -  feeling (and being) overwhelmed but still managing to survive which the inhabitants of the Dutch province Zeeland have had to do when facing the overwhelming power of water.  And I will manage.'
Here is Beatrice's wise answer.  She knows what she's talking about as she and two other experts have written a book about caring for carers - Family Care and Social Capital: Transitions in Informal Care.  It is hoped that this book will be published later this year (watch this space!).
'You wouldn't be you if you didn't grieve so intensely, and of course you will!  Why shouldn't you?
You are so right, you have made a wonderful life for yourself, and done so much of value, for you and for others.
Yes, caring does have this effect on most people … its the nature of the thing, I'm afraid.  Grieving for loss, with such intense love … why shouldn't we grieve when we all have to move on?  Love and care doesn't switch on and off like a light or a tap.  
Take care of YOU.'
Miriam will be home for Easter lunch.  It will be good.

March 2012: Miriam, Katherine and Bart at Miriam's new home in South Dunedin.







Monday 11 March 2013

LEAVING HOME AGAIN

Tomorrow our daughter leaves home. We know she'll be well cared for in her new place of residence where six people live, four of whom are in wheelchairs.  As Miriam has had regular respite care in different places, she seems to accept this change and will, this time too, soon adjust to her new abode. When she left home in 1995 to go flatting in an IHC flat it was hard enough but as time went on we knew she would be all right.  The following is an excerpt from The Madonna in the Suitcase where I write about Miriam moving into a supported flatting situation.
"Inside my head the internal dialogue accelerated to top gear: How selfish of us, you are no trouble at home.  She needs to become more independent.  How can we let you embark on this just because we want to have an overseas holiday?  It’s time to let go; you deserve a break.  What will happen if your medication for the hypothyroidism runs out?  There will be proper supervision.  But will it be proper supervision?  Let go, let go, let God.
We loaded everything in the car, drove to South Dunedin.  Together we arranged your room.  A mosaic image: your face showing your concentration as you fold your clothes and put them in the drawers of the dressing table.  You sort out your books on the wee table next to the bed and carefully hang your clothes in the wardrobe.  You held on so tightly as we left.  I said, ‘You and Janine will have to come for dinner soon.’

‘I’ll ring you, Mum.’

Driving home was a nightmare.  I imagined you waking in the night, missing us and crying yourself to sleep.  Visions of you burning yourself while you were cooking vied with ones of strange men coming into your flat and damaging you forever.  What if there was a power cut?  We had supplied you with a torch but would you know where to find it in your flat?
During this time I worried about what would happen when we wouldn’t be ‘on earth’ any more.  What would happen to you?  How would your needs be met?  And then I thought of you as a toddler, sitting in your high chair, grinning while you were eating spinach and spilling it all over the chair and over yourself.  I thought of you in our tiny house on Signal Hill Road, moving yourself around in the walker we’d bought.  Friends said: ‘It’ll damage her legs when she uses the walker.  She should only walk when she’s ready.’

But even then I realised that we had to help you and that you were strong, and that you would know when it was time to sit down in your little walker.  You see, darling, we trusted you then and now we had to trust you too.  We knew that this decision had to be made and that we had to let go of you to see how far you could stretch yourself."

Miriam at Lake Tekapo, March 1995. Photo by Janice Rowley


 And so tomorrow we'll go through it again, knowing that this time leaving home will be a permanent move.   At the moment my Heart wants to follow its own beat of a mother letting her disabled child go while Reason tries very hard to come up with the right answers.  The meaning of 'Right' in this case being translated as, Oh, yes, you are getting on, you can't keep this up, your husband is ill, you need time for yourself.


  In 1995 many questions went on in my mind.  Since then I've learnt that it is better to live the questions and not worry about the answers.  And I've learnt to  ask for grace, courage and strength.

 Tomorrow we'll also say goodbye to Pauline, Miriam's personal carer for the last eight years.  We will miss her dedicated support and her stories.

Miriam and Pauline

 I wrote the following poem after Miriam's stroke in 2001.  I have changed the ending.


Leaving Home

I see my daughter lying asleep in her bed,
her life force reduced.
I remember her
as a woman who knew
determination:
going to town, taking a bus,
buying a Lotto ticket,
a cappuccino and a muffin
at the Muffin Bar.

One day she rang:
I’ve got fifteen books from the library,
I can keep them for three weeks.

Her hair spreads on her pink pillow,
her damaged hand lies still
on the lovingly made
wine-red handmade quilt.
Fingers gently spread,
the thumb apart,
the index finger slightly curved,
the same way she held her paintbrush.

Even in her sleep her presence
demands acknowledgement
of herself, her energy,
her understanding.

Tomorrow I'll have to let her go,
she'll sleep in a new bed
in a new place and her warm night-time smile
may be for someone else.


Huberta Hellendoorn
March 2013




Monday 4 March 2013

IT IS A MIRACLE

Miriam's Sarah Cake

 Last year Miriam turned 50 and I followed the Dutch tradition of making her a Sarah cake. It was massive.
Bart and Miriam at 50th birthday party

Tomorrow she'll be 51.  It will be a quiet day with friends popping in.   Today her birthday was celebrated at the Learning Centre.  As Miriam now has been diagnosed with Coeliac Disease I made two large cakes for the party today, one Gluten Free chocolate cake and the other a Full of Gluten marble cake, both made with gorgeous Dutch cocoa.  It seems they did turn out all right.

 Wonderful news!  Today the ODT printed a short news item on progress made to keep the Dunedin Community Learning Centre open

 What a relief to know that they're on their way again for at least the next few months and hopefully for another year and more.  One worry less.  Right now there are quite a few other things in our family that need to be worked out and thought about.  Whenever that happens, I have plenty of time to read in the middle of the night or wander throughout the house.  I made a poem and will add it below.


Nights

In darkness
I walk throughout the house

It is quiet
in the middle of the night

Shifting my feet I listen
to sounds of snoring, stirring, turning.



On the balcony possums thud 
Nibbling bread meant for the birds

I look outside
But my reflection prevents me
From seeing what’s out there

I want to touch my memories
But they stay as elusive
As the ghostlike shadow
Of my night-time body in a dark window.


Huberta Hellendoorn
May 2012