From the Heart – A Relative's Perspective

"My brief here this morning is to reflect on the reality of changing minds from the perspective of a relative...

Palliative Care is the science...

Awhingatanga is the art form – hospitality, nurture, support...

Hospice from the Latin hospes originally meaning host – the host who would welcome the pilgrim, the guest...

Palliare the Latin word to cloak, to protect, to surround with warmth...

How might we apply these gifts to a much broader context?

The myriad complexities, for example, of chronic illness and its numerous co-morbidities...no single disease-pathway here - but the need for awhingatanga arguably greater and the cultural, ethical, legal and spiritual dimensions requiring great mental clarity combined with deep emotion...evidence-based medicine and grounded theory, science and art together for this patient, this family, here and now... awhingatanga...

Even though Carl Jung once said that 'all suffering is relative' it does seem somewhat ironic for me to reflect on dementia related illness from a relative perspective. For the last five years I have been visiting Dad at Manor Park Hospital and there are days when his suffering from end stage Alzheimer's disease has been all-consuming – he seems quieter today – his condition has deteriorated this week – a little bit chesty but much the same – hard to tell really – I'm not sure – he smiled today and said a word – hasn't spoken for weeks said Mum... hardly relative at all...

Jack died in his sleep at Manor Park Hospital – he was a patient there for the last six months... how lucky was he - only six months! Dad's done five years so far but he doesn't run away anymore – it was okay though when he did because people knew Pat McCabe then – the retired Senior Vice President of the Union - some even knew his mind was changing and would kindly bring him home – they knew Jack as well and they would help to find him also... But I never knew the cat was also called Jack – he was asleep on Dad's bed today – last week he was on his lap, asleep... strange really but Dad looked quite comforted by his company - especially when he didn't much like cats when we grew up in Naenae – some things are no longer that important – relative I guess...

Often when I visited Dad and held his hand, Jack sat alongside me... From time to time Jack would give me a banana and I knew his family or friends must have visited earlier that day. It's called regifting! Jack was a very successful builder and a cabinet maker but he didn't need that many cupboards to store his things now because his mind had changed so he got into this regifting - you know - give the gift to someone else – make them smile - regifting. Once he gave me some chocolate but I never told his grandchildren! At least not until his funeral...

Mary used to also share her chocolate cake with me – she always said hello and when Hamiora and Natalia the first of the great-grandchildren were introduced to Dad she went and got her teddy bear – a very special occasion and wonderful opportunity to re-connect with her child...She was so excited! Hers was a tiny funeral but I cried all through it, probably because I was down the back for a change, but, more truthfully, because her welcoming smile had gone, as had those kind words that are the hallmark of regifters everywhere, "have a piece of cake..." You never really forget those who welcome you to the table do you? Some days that's all you need to come back... even more impressive when you think that Mary had a lifetime in Villa K before that was closed at Porirua Hospital... then another ten years at Manor Park... couldn't really blame her if she didn't feel like sharing her chocolate cake because she had so many years away from relating to others – a piece of cake - sometimes its all you need to relate in this world of glimpses, this world of long goodbyes, this world of changing minds... Anne said something nice to me as I was leaving today, "love to your family Michael..." another glimpse... it's all you need, relatively speaking...to reconnect to your child...to come back...

I didn't know Mary had a family till the funeral – that is, apart from her teddy bear because she had introduced him to Hamiora and Natalia - well a half-sister anyway – you couldn't blame her for not coming – well what would you say? She was only a half-sister. How could she even half-relate? I guess that's just what the new lady meant today when she said to Kathy at reception – "well that didn't take long; don't know why I came really..."

Much like my nieces and nephews really – it's not the granddad we know – he's not there anymore... And yes, even if 'denial is more than a river in Egypt', you cannot say that, and you cannot judge, and neither can you blame them – we all deal with this sadness and grief in our own way and according to our own lights – and besides you cannot expect them to come if he's not going to speak and not going to relate. After all, some days he makes no effort whatsoever and he's let himself go a bit too. He no longer has any interest in the 'Pilates Program' on TV – likewise with 'Oprah', and she's worth millions - in the world of flat-abs and talk-back he's been left behind...

Such powerful emotions in grief especially the grief that belongs equally to birth and to death, the grief that 'carries the origin and the end', the grief that looks for the face, any face that says, "I know, I know..."

Margaret has one of those faces – each time I visit Manor Park she beams with a loud, "Good morning and a very happy New Year and God bless you!" Up and down she walks - all day. But once a year she is officially right on the button – New Year's Day - and for all of the other days of the year I need to be reminded of the ways God blesses me! Even though her mind has changed she still reaches out with love to welcome me, me who has become a stranger to my father. Funny isn't it another stranger with a changed mind telling me of fresh possibilities and how to relate each morning to new beginnings and new perspectives...

Dad had one of those faces – bright-eyed and bushy-tailed, a real good morning and a real God-bless-you face. I suspect he stopped relating sometime ago - but that was Ok then, because Mum could cover for him, and correct him. She no longer does that but still visits every few days and wastes time with him – once this year he even called her name, "How's my lovely Philomena?" She was on a high for so long after that – he was back - Pat was back and he hadn't really changed his mind – she was still his duchess, the lovely Philomena from Norsewood – just up the road from Scandy-Town – Dannevirke!

And besides he looks much the same – it's just his mind – it's the same old Pat – like Jack - so funny with his smart-ass replies – ever the story-teller - it would be great to hear one of those again but last week my brother Pat and his wife Veronique lucked out... Pat was stroking Dad's head, he loved that when we sat around the fire at home in Naenae. Clear as a bell, he said, "it's buggured!" Dad's changed his mind and "it's buggured" now ...and he knows... we don't need to keep it from him anymore...or be embarrassed when other's ask... or go into another room and whisper ...or roll our eyes and say what the hell was that all about? There's no more left-field from him now because he knows - and we know - and he knows that we know...

Left-field would be okay though – truly it would – welcome indeed – after all it wasn't that hard to deal with – quite relative really, like most suffering – and besides Mum's not so exhausted now...Those ready quips and smart-ass replies, yes, yes he looks just the same... even though his brain has shrunk and the nerve cell endings are longer communicating with each other – relating has nearly finished and the relatives find it hard...some don't ask about him now – it's just too hard...

Please, Please don't get me wrong – this is 'the long-goodbye', as Nancy once said ...but we have been blessed by the glimpses of love and by the regifting that occurs when minds and hearts change through openness...

And, so now when we are asked, "And your Dad? Is he still alive?" we all say, "Absolutely!"

You see we cope better now with his changing mind... five years ago we would never have even been here talking about him like this... but you see he's come alive in these last five years... and so have we as a family ... it's a heart thing... and today I got to give him a kiss, and you know something, I think he knew it was me – there was something in that look – I'd seen it before – long before he changed his mind..."

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Michael McCabe is the son of Philomena and Patrick McCabe and Director of The Nathaniel Centre

Footnote: Names of patients are either used with permission or have been changed to protect privacy.