Clare Wise

Goodbye and Thank You

candlesWe gathered on Saturday 19th November to mourn and celebrate Clare, on what would have been her 52nd Birthday.

120 folk came together for the evening. Nobody there, apart from our dear friend in her box out front, knew everyone, so the evening was filled with people introducing themselves to others who they knew must be a fellow-traveller of Clare’s journey through life – stories told, tales learnt, new friends made, tears and laughter shared.

I worked out that we had 8 separate countries, 4 different continents, represented in the room. As a mark of the love for my sister, friends had come from mainland Europe, Africa, America, and even Australia.

And befitting our “Hostess”, Clare was there, at the entrance to the room, a candle burning in front of her. Everyone lit a tea-light candle from hers and created a glorious shrine. On a table next to that was a leather-bound album, where, over the evening, friends put down thoughts, stuck in photographs, jotted a few words. Some were not able to find the words at this time, but will send me their musings later and I will stick them into the book.

After a good deal of talk, the tables were cleared and 2 hours of pumping 1980s Disco ensued.

dad-dancing

 

 

 

 

 

 

Full-on “dad-dancing” with nobody complaining. Bliss…

 sabrina-and-warren

 

 

 

Special mention to our “Brother-from-another-mother”, Warren, who flew in from Sydney: glitter ball crash helmet, black jumpsuit and wedged shoes he had customised. Being naughty with dear Sabrina from LA.

 

By the end of the evening, a major flurry of exchange of contact details – very appropriate for a party hosted by Clare, who always wanted people she loved to meet other people she loved. I am certain that long-lasting friendships will have started that night…

Everyone there told me just how much Clare would have loved the evening – always one for a party – and I am sure she did. We said goodbye to her in the most fitting way and the love in the room was transcendental.

And having said goodbye to her, it is time for me to stop my writings.

I took over Clare’s blog primarily as a protection. For us both. As a way of not having to field phone calls, texts and emails from concerned friends. Neither of us had the strength, but knew that everyone needed to be kept abreast of where Clare was – thus I started blogging a purely-arms-length-summation of the events of the day. But it soon became something else for me – it grew into something more than a collection of words typed into a machine at the end of an evening. And I won’t try to deconstruct its greater meaning now, just to say that it became indispensable: a repository for my day’s thoughts, feelings, frustrations, epiphanies. It soothed me to write.

I spent a number of weeks in isolation. A kind of Retreat in many ways. On my own, unable to leave, mostly mute. But this time allowed thoughts to form, to gestate and to be expressed. Thoughts that I would otherwise not have had, or at least not have had the time to welcome and digest. And as I have written before – the narrative of these writings may have been about a Journey to Death, but I think the theme has been about the Act of Living. The two are the same thing, probably – can’t do one well without an understanding of the other.

I have been putting off writing this last post. The final full stop (“period” for you Americans) brings with it a more-encompassing “full stop” for me: the ceasing of collecting my thoughts, arranging them and trying to make sense of them; the laying to rest of this Magnum Opus – over 80,000 words now, two-thirds Clare’s and a third mine – and with this comes a nagging thought that I am laying my sister to rest as a result: wrapping her up, while I move on. Nonsense, of course, but the thought remains. I know I will continue my relationship with my sister. My healthy sister. But I know I must also remember her as a cancer-sufferer, and need to mark that and continue to support those who supported her.

I was honoured to be asked to open the Marie Curie Hospice Fair last Saturday – a fundraiser with lots of stalls selling jam, hand-knitted garments, cakes and bric-a-brac. It costs £6 million a year to keep that one building up the road from us going – that’s a lot of jam.

The Hospice was fundamental in helping Clare stay, and eventually die, in her own home. The support they gave – from all the kit they arranged, to sitting down with Clare and gracefully and kindly explaining the situation she found herself in. I would turn up at the Hospice every Friday over the last months – a sweaty mess, having just cycled up the hills, clad in my ever-more-grubby shorts and vest – to collect the prescription for Clare’s weekly medications. Often I would be pulled into one of the Doctors’ consulting rooms, sat down and asked how I was. I was terribly British to start with  – mainly just embarrassed that I was being focussed on when they should have been directing all their attention on Clare, but latterly was profoundly grateful to be asked. Maybe a little too forthright when told that a bed could always be found for Clare as an Inpatient if things got too much for me –replying that that would only happen over my dead body. And bless them: they gave me everything I needed to keep Clare at home.

The Macmillan Cancer Centre crowd were also wonderful. Always subsumed by the mass of patients, and thus often appointments running hours late, but always so caring. These people are at the Front Line in this battle. It is estimated that half of us will get cancer at some stage in our lives, and the number of people with breast cancer has nearly doubled in the last 40 years. It is reaching epidemic proportions, and the fighters need our support.

Help those who helped Clare if you can:

https://www.mariecurie.org.uk/donate

https://www.macmillan.org.uk/donate

Lastly, if you would like a thought to go into Clare’s Memorial Book, leave it on the Comments bit and I will print out and stick in.

Thank you all for following Clare on her journey. And I hope my taking over of writing duties was helpful to you in the last months. It has been a privilege for me.

Love to all, for the last time

Goodbye and Thank You

Greg

 

 

 

 

Phantom Limb Syndrome

How do you start to come to terms with something that has always been there, but now isn’t: like the loss of an arm or a leg? I suppose I am exhibiting a sort of Phantom Limb Syndrome – where people who have had a limb amputated can still experience feelings in the limb as if it were still attached to their body.

I am having odd things happening with my eyesight – keep thinking there is someone just at the edge of my field of vision, but when I turn to look front-on, there is nobody there. It’s Clare, I am sure – forever somewhere within my view.

And my dreams are huge: most of them with mum and dad in the Principal Cast of Characters – Clare has yet to make an appearance in this part of my subconscious.

I realise that I have no Touchstone to my distant past and all those memories. No Second Opinion (that thing that Clare was always so keen on). Nobody to jog a memory, remind me of a happening or root me in my 50 years thus far on this planet. I have no memory of life when Clare wasn’t here: I am 18 months younger than her. And she had the type of memory that could recall, in detail, what happened 40 years ago – I forget what I had for breakfast this morning. I once introduced myself to someone who then quietly pointed out that we had spent the weekend together not that long before.

Are we the sum of our Genetics or of our Experiences, or are we a combination of both Nature and Nurture – and if so, is it important to remember the Nurture bit? Or is that somewhere in our “muscle memory”, somewhere deep and shrouded in the firing of the synapses in our brain, somewhere beyond active recall?

I don’t know. All I know now is that I have no one who was there to bear witness to me as a tiny person, pre-teen, an adolescent – both parents and only sibling gone. So, what does that mean for me? Do we need a present-day connection with where we have come from? What forms us? Our physical selves are made from the stuff of stars (as I have explored previously in this blog) but what about the “Us” that is more mercurial, more spiritual, more indefinable?

As we get older, we hopefully unpack some stuff from the Emotional Rucksack that we’ve been carrying around for as long as we can remember – we see what is ours, which we repack and keep; what is stuff from our parents or our past that we never actively claimed, but have been carrying nevertheless, and jettison that; and what is stuff we’ve gathered along the way and see if it’s still useful on our journey. I did a lot of unpacking and rearranging after my dad and mum died. Very good to lighten the load at that point in my early 40s. But what am I carrying from the Fellow-Traveller who was my sister? It will take time to fathom that.

Is it Family that makes us who we are?

I know a little about all this because of the wonderful boy who appeared in our lives some 13 years ago: Tindy. A refugee from Rwanda, having been kidnapped, forced into being a child soldier, escaped, and finally found himself in the UK, aged 16. No family, no friends, a new country and a new language. Gently, over a number of months he became part of our family, and Gaia cannot remember a time without her brother at her side. And for Tindy, Aunty Bobs was a powerful figure: drove him around showing him his new country; introduced him to the sea (where he rushed in fully-clothed) and to his first gay couple; got him his first bike; taught him what a “holiday” is; taught him lessons about Family. And got on his case hugely about his African Time-keeping and making people wait; about professionalism in an office environment; about not allowing him to think of being a Porn Star as a suitable profession…

Tindy is as much a part of our family as any of us. Aunty Bobs treated him as a nephew in the same way she looked on Gaia as her niece. So maybe it is not that important where we have come from, but where we are now; who surrounds us now, who gives us love and comfort and a sense of belonging – and not so much to do with our past loves and comforts and belonging.

These are all “hanging thoughts” for me now. I have no answers. Maybe there are no simple answers. We are bits of everything. We are made from both the love that surrounds us and the love that has come before.

I think my favourite tree gives me the answer:

tree-1

This is in a local bit of woodland to where I live and I walk past it as often as I can. I find it so incredibly moving. An ancient old Oak tree, blown over in some great wind many years ago. Most of its roots sticking out of the ground, and only able to still be alive because the living part of the tree is being held up by the dead part. I find it a glorious physical manifestation of the thoughts tumbling around my head: that we truly are all propped up by those who have gone before – the living held up by the dead.

I am still spending a great deal of time in Clare’s flat. Sorting, clearing, passing-on, throwing away. Mostly, reasonably efficiently, but occasionally I will be thumped in the solar plexus and stopped in my tracks. Yesterday, on opening a children’s book and seeing in my best ink-pen handwriting, probably aged 6 or 7, our two names written on the flyleaf. It was “House at Pooh Corner” and I suppose we were Winnie the Pooh and Piglet – hand in hand… Clare was known by many as “Bear”, and I recently found out that Winnie was, in fact, female. So that must make me Piglet. Fair enough. Just with a more indistinctly-manifested Winnie, but she is there, nonetheless. Our relationships don’t end with the ending of the person with whom we have walked hand-in-hand for as long as we can remember, they carry on. Just in a different form.

I feel slightly shapeless now, ungrounded, untied, somehow. I am constantly asked how I am, and that I should be doing something “for me”, something I want to do. But I have no idea of my wants. I think I need to reconnect with my body and with the earth, so I am taking myself up to the cottage in the wilds of Scotland, on my own for a week. To touch the earth, to feel the weather, to walk up in the High Places, to reconnect to my body and  see how it can still serve me.

And because the jokes never stop, here’s one from a letter from our local Council. Very angry about an unpaid Direct Debit of Council Tax. The overdue amount was shown and the “Reason given by your bank: PAYER DECEASED

Almost as good as a similarly computer-generated letter we received after our dad died and we had cancelled his mobile phone contract –  headed “We’re Sorry to See You Go

Love to all

 

 

 

 

7

7 Heavens, 7 Deadly Sins, 7 days in the week, 7 colours in the rainbow, 7 Oceans, 7 Continents, 7 layers of skin, ocean waves roll in 7s, 7 holes in your head, 7 Dwarfs…

…and 7 of us on Friday afternoon to say goodbye to Clare.

I cut a huge bunch of lavender from her garden in the morning in glorious sunshine and tied it up with the drawstring of my shorts. The shorts that I had worn non-stop for all these past weeks. They came with me to the Crematorium.

The 7 of us (and Tindy who is still in Vietnam) had collectively designed the send-off. Clare is not your Oak-Coffin-With-Brass-Handles sort of girl, so we chose a Disco Glitter-Ball coffin – seemed totally appropriate for our 80s Disco Goddess. She was dressed in a beautiful red sari, with gorgeous high-heels, covered in bangles, wearing her finest shades and scented with her favourite Chanel No 5 perfume.

Our Funeral Director was totally unfazed by the request for four of the girls to carry the coffin – Philippa, Rose, Em and Fiona, perfectly in step, bearing their friend in to the accompaniment of the Bee Gees “Night Fever”.

For the next 45 minutes we all stood around Clare, taking it in turns to speak and to make an offering to be cremated with her. I put the bunch of lavender on the coffin to start with and then my shorts. By the end we had covered the coffin with a glorious mess of offerings. So appropriate for my sister – an aesthete, surrounding herself with beautiful clean-lined pieces of twentieth century furniture and then completely engulfing them in huge piles of clutter. I can’t remember a time when I could see the surface of her dining table…

Midway through our offerings I noticed out of the corner of my eye a jolt from the Funeral Director, sitting quietly at the back of the small chapel, when Em struck a match to light an Indian incense stick she’d placed on the coffin – there’s probably a Health and Safety regulation banning naked flames in a crematorium…

By the end we had a glove-puppet penguin, sandals, an Indian wrap, “It’s a Wonderful Life” DVD, a painting of a flower by Gaia, a carrot and a copy of the play “Waiting for Godot”, photographs of Clare, all the words that had just been shared and all the wonderful words that so many of you have written to me over the last fortnight.

And a large collection of scrunched up tissues we had all been crying into.

Clare then left us to the strains of Gloria Gaynor’s “I Will Survive

My Wife (who has been to a funeral or two in her time) said this was the best ever. And, although hesitant to use a word like best when talking about a funeral, I think she was right.

Afterwards we all went off to a private space in town and made Clare extremely proud: sharing countless numbers of very fine cocktails that Gaia had invented (including a Lavender Mojito), gorgeous wines, beautiful food, wonderful stories, much sobbing and laughter, a spot of kneeling by the loo and a very professional display of alcohol-induced-passing-out.

Gaia now has four new “Rogue Aunts” who will take over the responsibilities that Aunty Bobs had assumed thus far – between them I think they pretty much cover all her idiosyncrasies…

Esther wrote to me from Antarctica saying that they had had an amazing Aurora on the day of the funeral. And this, from Emma Clarke, the next day:

img_0002Clare’s ascending in her Glitter-Ball and rainbows

Oh, and as Death is the Joke That Keeps Giving… I must pass on a conversation I had on the phone last week with Clare’s mortgage provider:

“You have to go into our nearest branch with the Death Certificate and proof that you’re her Executioner.”

“I’m sorry?”

“Her Executioner”

“Are you implying that I killed my sister? Do you mean her Executor?”

 

Love to all

 

 

Funeral

Clare will be cremated tomorrow – Friday September 30th at 3.30pm

There will be only 7 of us there: me, Emma, Gaia and The A Team.

I am sure that you all understand that it would have been 7 or 200. Nothing in between. And I didn’t want to make an arbitrary “cut-off” point. So I hope you all feel that there is a fitting equality in this.

Funerals are such horrible things. Formal things. And Clare didn’t want formality.

We will all have a chance to meet up in November – talk, listen, share stories, tears, laughter, drink and dance up a storm.

I will write about the funeral at the weekend.

If I can ask that you find a quiet spot if you can between 3.30 and 4pm tomorrow and send a good thought out into the universe.

Love to all

Recurring Themes

Once again, The Universe is gently chiding me for bringing my sheet music to someone else’s recital. This, more than anything else over the last weeks, has been the recurring theme, and the lesson that I will take away as Homework, and have to learn. Eventually.

Don’t view another person’s choices from your perspective – judging them by the choices you have made (Goodness me – this sounds a bit Biblical, doesn’t it?)

Oddly, it is something I learned long ago in my work as an actor – not to bring personal morality to bear when playing a role. Don’t judge your character, just play them.

I know that this is a common trait in us humans: the terrible looking-down-ones-nose at others…

Married couples at cohabiting ones

Couples with kids at couples who decided not to have kids

Couples at Singletons…

Singletons, and Single Aunts in particular, are incredibly powerful beings in kids’ lives – so important to have someone in your parents’ generation who aren’t parents themselves – the “Rogue Aunt”. As an Aunt and a Godmother, Clare was a consummate professional: always remembered birthdays, always available for fun times, for trips, for holidays. And, in our set-up, Gaia’s roommate on so many of our excellent adventures. She was a powerful free-moving spirit in so many lives – both young lives, and lives lived alongside her for all those years. Not weighty, not anchored by having children of her own, but interconnected to so many children, so many families, so many friends.

And not wanting to embark on that kind of love meant that the love wasn’t at risk. All of us who have loved, and lost that way, know that the opposite of that love isn’t hate. It’s indifference (eventually – after the pain and the anger have subsided). And Clare never had to face that indifference.

Claire – the sister of my old friend, Simon, who drowned all those years ago – was a close friend of my sister as well. In a recent email, she wrote very cogently about this: She touched so many lives…she will be remembered with love – a love that will last longer perhaps than “that kind of love”

And an odd aligning of sentiments from another dear mate writing about a whole other friend of hers: It makes me think that love, real love is more about the constant friends in my life.

Who am I to judge the type of love that Clare gave? And the type that she received?

Love is love is love is love. We all give and receive it in a myriad of ways: healthy, unhealthy; successful, unsuccessful; affirming, debilitating.

Another recurring theme of these writings over the last weeks is the power of the “moment” – and the realisation that that’s all we have. A celebration of the ephemeral, I suppose.

golden-bark

This is on the path up from our family cottage on the west coast of Scotland. A patch of wild, rough hillside, and a walk I’ve done probably hundreds of times. But I was stopped in my tracks on the 14th February – Valentine’s Day – this year. This photo is of a piece of peeling silver birch bark; the sun at just the right angle; me approaching at just the right time from just the right direction… thinking there was gold leaf on the tree. And only a minute after I’d first seen it, it was over. I’d never seen it before. And I’ve never seen it again.

The combination of all these disparate things aligning, just for me, just for that brief moment, giving me an enormous surge of happiness, filling me with joy and wonder and then the moment ends.

Loss is an essential part of this joy and wonder – the beauty of The Ephemeral.

And by witnessing, marking and celebrating these fleeting moments, we are both celebrating their happening and mourning their loss.

So is loss as an essential part of truly being alive, truly being present?

We pass by the permanent things on our journey through life without a second glance (or, if we are able, we see them again, as if for the first time, through the eyes of our small, toddling children, and hopefully share their wonderment). I always banged on about the finite nature of things bringing us the joy of the thing – would we still enjoy eating this particular slice of cake as much if we knew that this cake was everlasting? That we could have this identical slice whenever we wanted it until the end of our days? We would soon stop eating the cake… we love it because we know it’s going to stop.

I am still letting the last weeks filter through me. They may filter through for the rest of my days. I don’t know. And if they did, that would be fine – I think this patch of time, this loss, I will carry with me always. It will find its place within me, it will permeate, fill some gaps, make me who I am.

All I know is the incredible potency of the fleeting moments that Clare and I shared over this time. And alongside this, I know, is the desire to be able to conjure up the memory of my sister as the vibrant, powerful, funny, gorgeous, able person she was before all this hit her. This last week I have been clearing through her study; going through all the papers, files, boxes – a few hours ago I pulled stuff out of an envelope and was stopped in my tracks. The wind knocked out of me. By this unbelievable beauty that is my sister:new-bobs-photoTaken by Rose, the same day as the photo recently posted of Clare with her hand over my eyes

People die. The love, the joy, the wonder does not die. The ephemeral nature of our existence creates this power, and we keep the joy of the fleeting touch within us, and carry it with us for the rest of our journey. I hope so, anyway.

And as I wrote some time ago – whatever Clare was made up of will soon go out into the universe again, to become part of something quite other, as we are just the short-term guardians of what forms us physically.

We are the embodiment of the ephemeral built of the eternal.

Love to all

Emma and Gaia

Nothing of what you have all been reading over the last months – the total immersive-care for my sister – would have been possible without the utter, unquestioning love and support of the two most incredible people in my life: my wife and daughter, Emma and Gaia.

No, that isn’t right. Not support – their equal shouldering of the burden alongside me.

Witnessing a Father and Husband absenting himself, by choice, from the family for so long, with total understanding and Grace.

I can write about this aspect of things, now that the daily care of my sister has come to an end. It did not seem right before this moment: muddying the waters in some way, opening up to view the primary dynamic in my life, running as a parallel story to this one, and necessarily “on hold”.

This “Holding Pattern” started last summer. Literally a couple of days before we were all meant to go off on a wonderful holiday to Greece – Emma, Gaia, Clare and I.

(Oh, dear – is it Clare and Me? Grammar was never my strong point… Quick story to illustrate: In my Year Off between school and University, after I had worked as the Community Service Volunteer, I applied for, and was given a scholarship by the English Speaking Union to go to Sydney Grammar School for 2 Terms. My first day there, filling out my enrolment papers, it was gently pointed out to me that I had spelt it Sydney Grammer…)

Anyway – Emma had organised a two-week cruise, just the four of us on a yacht, round some of the Greek islands – two days before we were all meant to go, Clare got the diagnosis of bone cancer. And that the treatment had to start right away.

I explained to Gaia that Clare just needed an operation on her broken arm (which was true, but only part of the story) so she wouldn’t worry, but to cut a long story short, Clare and I didn’t cruise round the Greek islands last summer…

Clare was originally diagnosed with Breast Cancer in 2013, her treatment continuing until the early months of 2014. We managed a wonderful 50th Birthday celebration for her that November (Ironically, the one who had organised it all was unable to be there – Emma was in New York, as her close friend, Mike, had just died). Within a few months, however, Clare was in pain again. For those of you who have followed this blog from its inception will know the story, but suffice to say that for many months she carried around a number of pathological fractures – all mistreated by the various professionals she visited, until the summer of 2015.

Since then it has been an almost constant stream of hospitals, clinics and procedures – the family focussed totally on Clare. And when I couldn’t be with her for whatever appointment, Emma was at her side.

By the start of this year, Clare was on oral chemotherapy, and thus not tied to regular Hospital visits. To make the most of this state of affairs, in February, Emma took her to an ayurvedic clinic in India: she stayed a fortnight, and Clare a month – a shame, in hindsight, that she didn’t write more fully about her stay there as it was such a powerful time: the day she got back to London I told her that I had never seen her looking so wonderful – beautiful, healthy, full of life. But she went to bed the next day, and never really got out of it again.

It was on this trip to India, just the two of them munching dhal and getting treatments that wonderful conversations happened: nobody else to get in the way and time to explore thoughts fully. Perhaps the most potent was Clare’s admission that she wished she “had let love into her life”. She had an extraordinary amount of love in her life – she knew that – but not that kind of love…

Clare protected herself from the hurt that she knew naturally came hand-in-hand with that kind of love. She allowed herself to love and be loved, but probably, and essentially for her, on her terms: the love of friends, her family, colleagues, Grably and me.

And our relationship, as I am sure you are all aware if you’ve been following this blog, is not your archetypical Brother/Sister one. Clare and I were brought to an incredible closeness by the reasonably tricky family dynamic we grew up in, but we went opposite ways as a result: me looking for that kind of love – Clare shunning that and going the route of self-sufficiency: with her brother on hand, of course, to do whatever “Man Things” needed doing. Probably the perfect set-up for her – someone to do the DIY without demanding a kiss afterwards…

She did, though, make demands of me – which I was always happy to honour. But having a family of my own meant their sanctioning of this arrangement – always given. Emma, and latterly Gaia, being so gracious, wise and understanding about the complex relationship that was Me and Clare.

Never more apparent than the moments after Clare’s death. Emma and Gaia at the bedside within minutes, and the start of our family-grieving. Oddly, or perhaps fittingly, the first real moment back as our family unit was the sharing of grief. An incredibly potent and positive thing for the three of us, and something that we will continue, as a family.

Emma lit scented candles and set them in the bedroom; Gaia cut flowers from the garden and put them in a vase on Clare’s over-bed table, and while we waited for Dr Miranda to come and do her paperwork, she went out and returned with pastries and coffee. She went into a food-creating frenzy for the rest of the day. Obviously well brought up, or well-versed with what to do in a time of death – we are all emotional, exhausted, our blood-sugar dives – we need feeding.

Over the next couple of hours she put together the most fantastic buffet at home, which we decimated over the remainder of the day. Practicality – that’s what is so important at these times and a true Act of Love.

And now we have to re-engage. Have to get back together as a family again. Start to repair the inevitable “Collateral Damage”. It will take time, as it has been a long time in the making. And I feel that the grieving process will be a large part of the healing.

Interesting thing, Grief. My close friend and flat-mate over the 3 years at Drama School, Simon, drowned when he was 25. I was in a play at the time at the Nottingham Playhouse – far away from any of our school-mates, far away from the city we had all shared. Very much adrift. I went to see a sort of Mystic lady in Nottingham, who told me that if I didn’t grieve I would get physical heart problems. But try as I could, grief would not come. I gave up acting, I took myself to Australia, a friend joined me a few months later and the two of us rented a car and did a 10,000km journey in 4 weeks (and of course she couldn’t drive…). Halfway through – on an endlessly straight road in the middle of the most enormous, flat, arid landscape I had ever found myself in, I started to cry… Maybe I just needed a sense of perspective. A sense of where I fit in the “Grand Scheme of Things”. I don’t know. But I grieved. Big Time.

Grief comes easier for me now, and I have found myself over the last few days, walking through Clare’s flat, carrying boxes, suddenly overcome by a vomit of tears. I wail, I stop, I continue to pack up. This will be a regular happening, I am sure.

Clare and I didn’t cry together. As far as I can remember, she only allowed herself tears in my presence once in the last weeks – and they were tears of frustration. I only cried in front of her in her last moments – my last words to her. I think that was important for her to know that I had gone beyond what I had always been – the brother facilitating her wishes; not upsetting the energy of the room; not bringing his own sheet music to her Recital.

She had carefully demarcated our relationship in this patch of time we were sharing; tried to keep it as “clean” as possible, as the true nature of what was happening was just too “messy”. She was always very organised.

I am finding myself drawn back to Clare’s flat (I am writing this there). It will be hard to break the rhythm that we have all had over these weeks – that Dad is down the road not really able to come home for more than a few minutes at a time as he’s looking after “Aunty Bobs”.

I don’t know how many of you know the family name she had: Aunty Bobs, Aunty B. And I can’t really remember how it came about – me starting to call her Bobs – a derivation, I think, of the Hungarian word for baby – baba. Maybe she was called that by some of our Hungarian relatives as a child. No idea. Anyway – from the moment that Gaia could speak, Clare was Aunty Bobs. And I always called her that as well – Dr Phil utterly confused on his first visit when I kept addressing her as Bobs, Bobsie or Aunty B.

I will save for another posting writing about the fourth member of our family – our son,  Gaia’s brother, Tindy. Aunty B was an incredibly powerful force in his life, and he in hers. Their story will be told at a later time.

This has been a bit of a ramble. My thoughts are all over the place – not so surprising, really.

To finish: Grably the Cat is in heaven at his new home at Ms Clarke’s. I have had all the medical kit taken away by Medequip. The radio is constantly playing in Clare’s bedroom – an 80s music radio station. Scented candles lit whenever I’m here. Now I have to try and disentangle myself from this place that has been my home for the last months, reconnect with my family and the wider world. It will be hard – the bungee cord keeps pulling me back: this flat, I think, representing a simplicity, a clarity-of-purpose that is now gone. The world has become large again and I have to step back into it.

And all that is left is to celebrate my glorious girls still with me, Emma and Gaia. And my other glorious girl, still with me but in a different way, Aunty B.

Love to all and profound thanks for all your words, in so many different forms, over the last days

Clare

14-sept-small

Clare died at 8.10am yesterday, September 13th, 2016

Ironically, or perhaps totally appropriately, within minutes of me posting the previous evening’s blog about the ‘sameness of days’ and that I was going to have to make a Unilateral Decision, Clare was busy making other plans.

She was not her usual self in the early evening – the rhythm of the days had always been that by 7 or 8pm she would have her smoothie, take the collection of meds, and then gently slide off into a big sleep. But that evening was different: she couldn’t get comfortable, kept ringing the bell and getting me to rearrange her pillows, change the angle of the bed-base, try and move her on the mattress. We had exhausted the possibility of more Opiates, so I gave her an Effentora – usually guaranteed to knock her out – but she was still bell-ringing for some time after.

At 10.30 I checked on her. She was asleep. I gave Grably his 15th meal of the day, he took himself to the door and I let him out for the night. I put myself to bed, hoping for as calm a night as possible.

I woke at 1am hearing noises and went to Clare’s room. She was in some distress. Wide-eyed with hugely-dilated pupils. Shallow, quick panting, every breath bringing with it a forcefully vocalised “I can’t… I can’t… I can’t…” I tried to talk with her, but she could not respond. I tried to get her to drink, but she was unable. I went to phone the Night Nurse, who said she would be over as soon as possible. When I returned to Clare, the words had changed to “Okay… okay… okay…”

Only with hindsight I realise that this was perhaps the frantic interior dialogue playing itself out.

15 or so minutes later, Heather and Emma, the Night Nurses, arrived. I had a collection of meds that had been ordered some weeks ago (when we had thought to give Clare a big sedative for her nights, but had decided against it). Heather concocted the sedative and pain-killers on offer, and gave Clare an injection. Within a few minutes she was calm and her eyes closed. I left her at about 3am, calmly sleeping.

By 7am or so, she was back to being wide-eyed. But now totally unresponsive and immobile. Just an indistinct vocalising on every breath.

We have an extraordinary back-up. The fridge door is covered with telephone numbers for nurses, palliative care, “Twilight Nursing” (until 11pm) and the Night Nurses until 7am. But, and I have no idea how this could not have been spotted, between about 7am and 9am, there is nobody available. I called a number and was told to phone our NHS generic helpline: 111. There you get an operator, who is not medically trained. She said she had to go through a list of questions with me – was Clare bleeding?? After a pointless number of minutes of mindless questioning I was put on hold and then told I was being transferred to a nurse. Finally we managed to speak, but all she could suggest was that I call Camden GP Cover. They may be there at 8am (not a lot of use to me at 7.30). On a whim I phoned Heather, the Night Nurse – she was no longer working, but would arrange a “Rapid Response” nurse to come.

8am now. Back at the bedside.

I wiped Clare’s face. I held her hand. I kissed her forehead. I told her I loved her. I said how unbelievable we had both been, but I said it was all just getting too fucked-up now. I told her that she didn’t have to worry, that everything was sorted. And I told her that she could go now, if she wanted to.

I kept her hand in mine, and she died about a minute later.

Of course, once again, I had not understood. Once again, I had thought that this was my gig, that I was the one who would make the Unilateral Decision. Which was nonsense.

The Unilateral Decision was always Clare’s to make. And she made it. Tuesday 13th was the day that would mark the change. The day of organising the Care Package. The day that medicalisation, procedures, professionals and strangers would start to creep in and take over our quiet space. Clare, obviously, could not countenance that. And I would like to believe that her leaving at this point was also an act of love for me, as she knew that I really couldn’t countenance this unfolding new chapter either.

So she wielded the only power left to her. The power to excuse herself from the set-up. And what extraordinary power that was to behold. The power of her mind.

Clare has always been driven by her mind. She never really had a relationship with her body, with her physicality. So it is no surprise that what was happening to her body, what terrible wasting and swelling and pain – even though that was physically so debilitating – was not what took her away. She took herself away. Her ‘self’, her mind, brain, intellect, whatever you want to call it. That’s what had kept her going for so long in this terrible disease, and that is what called the halt. With such Grace, Power and Spirit. All she needed was to know that I fully sanctioned her wish. And the extraordinary nature of her brain – that in this situation, seemingly totally unresponsive, she heard me, and acted with such swift decisiveness.

14-sept-2-small

And, of course, as Death and Comedy are natural bed-fellows, there was necessarily a few darkly-humorous moments afterwards:

To start with I had to make sure Clare was dead: that there was no pulse. I held her wrist: nothing. Just to be sure, I held my wrist: nothing. Exactly what had happened a few years ago when Clare and I were with our mum when she died, I was unable to find a pulse on any of us… and I allowed myself a laugh with Clare now, as we had both had a good laugh back then.

Within minutes of Clare’s death, the phone went. It was the Rapid-Response nurse. I told her Clare had just died: “Oh – and I’m already in the car!” I quickly assessed whether being British meant that I had to apologise for my sister’s death to someone I didn’t know as we had upset their travel-plans, but decided I didn’t have to.

And when Em was on the phone to our local Funeral Directors, she said who she was and was greeted by “Is it your mum?”

None of the above, however, gets close to the craziness when I went to register my mum’s death in York. It was the day after her death, and I had driven into town and parked in a big car park. As I got out, I bumped into her GP, who had signed her death certificate the day before. We talked for a number of minutes, and as she left and I turned to go to the Registry Office, I was accosted by a man holding a microphone:

“Greg? It’s Greg Wise, isn’t it? You’re live on BBC Radio York” (The car park is overlooked by the radio station) “What are you doing here?”

“I’m registering my mother’s death”

Without even the slightest pause “What’s in the Pipeline? Anything coming up? How’s Emma?”

Again, I had to quickly check my Being-British-Appropriate-Response –Do I thump him? Ignore him and walk off, or answer his question?

I spent the next few minutes “Live on Radio York”…

 

I hope Clare would be proud of me. Some weeks ago I gathered The A Team together and we went through her contacts, emails, my contacts and whoever the Girls could think of, and put together a “Phone Cascade” – apportioned between us. I was desperate that we do this properly, that nobody who ought to receive a personal communication about Clare’s death, should find out via Social Media, or any other public platform. I was, for a nanosecond, “Clipboard Greg”. Within an hour of Clare dying, the Cascade started, and the reason that I didn’t post anything yesterday was that not everybody who needed to be told had been told. Lovely Esther in Antarctica was still unaware… I managed to have a long chat with her this morning, but she already knew via the Aussie contingent. And apologies to whoever wrote in the “Comments” bit on the previous post, leaving their commiserations – I deleted them. Trying to manage the appropriate information-flow in this age is really hard. And, whoever reads this and feels upset that they had not been personally informed ahead of this public note – I sincerely apologise. We all tried our best.

So what now? Clare left her flat around lunchtime yesterday with a couple of lovely (and terribly well-dressed) gents from the Funeral Directors. I registered her death at our council Registry Office in town (where the computer system was down, so was unable to get a Certificate) and have arranged for Grably the Cat to go to his new home. He was, of course, was discombobulated by the day. We sat him on Clare after she had died, but he wasn’t interested – no Greyfriars Bobby he – instead went to sleep on his chair. But once Clare had been taken away, he left the flat, and has been in the garden ever since – just coming in for food, and then leaving. Luckily it is beautiful weather, still – 91 degrees yesterday (33 Celsius) and balmy nights. This evening the lovely Emma Clarke (one of the A Team) is coming to pick him up. She had Grably’s brother and sister for many years, now both dead, but still has 4 cats, down in the countryside, so hopefully our furry friend will be happy in his new home. I’ve got together all his “kit” – travelling basket, scratching post, bowls, litter tray to go with him so can feel some sense of continuity. Bless him – even I (by no means a cat-lover) have become very fond of this old gentleman. May he live out his remaining years in the same state of pampered-bliss that his first 18 have afforded him.

As Clare didn’t talk to any of us about Funeral plans or anything, we are having to work out what is most appropriate for this most unconventional girl. The feeling is that we won’t have a funeral. Instead we will have a Party. On her birthday – November 19th. A Saturday, fortunately. Start with an “Open Mike” so whoever can say whatever they want. And then major dancing and drinking. For those of you who didn’t know (can there be anyone?) Clare was a HUGE fan of 1980s Disco. So that’s what we’ll have. Start sorting out your outfits.

I’ll post everything when we’ve decided. Along with donations to charities, for those of you who would like to do that.

This is a long post. Which is fitting, as you have all been on our journey, and needed to know the ending.

I will keep writing, as I have found this to be so helpful on so many levels. The enforced stasis that this has brought, although so hard for me, has also allowed me to sit and think and try to articulate the myriad of thoughts bouncing around. And even though this has been, on paper, about the journey to Death, I think it is more about the journey of Life. About living, about people, about relationships, about the essence of all things. And, I think, has reinforced a few things that maybe all the noise and endless movement of my life has made me forget:

Live as honestly with yourself as possible; live to allow the moments not to go by unnoticed and uncelebrated; try and be kind both to yourself and those around you; try to find a way to love and be loved; keep asking questions, keep trying to find answers; but know when to stop.

And with that, I will stop. For now. But leave you with this. Pretty much sums things up:

hand-over-eyes-small

Love to all

The Roadie muses

After whatever latest moment-of-crisis has been overcome, our days meld seamlessly, one into the next. The rhythms of medicating, hydrating, emptying the bag, trying a bit of a conversation before the eyes roll back into the head, going to the shops for provisions, making up smoothies and watermelon juice, medicating, hydrating, emptying the bag…

I tried to mess with today’s rhythm by beavering away with phone calls and emails. I finally confronted Clare this morning with what she actually wants from her days. What those-in-the-know call her goals. Whether she wanted to see mates other than the A Team Girls, who pop in and out at will. It is her old friend Jules’ birthday today and I asked her if she were able at least to talk to her on the phone. So we did a test: putting the landline phone on speaker and calling my mobile. Seemed to work, and I called Jules, so they could have a chat. It went to voicemail. Ah well. We tried.

It is a question of a trade-off between sedation and pain. The drugs ease the pain, but being a blunt-instrument, they heavily sedate. Alongside this is the ‘burden’ of her illness bringing prolonged sleeping. So, my task today on our Krypton Factor was to try and find out whether there is a way of guaranteeing a moment of wakefulness in the day that can be shared. Clare is most available, clear and present between 3 and 5. In the morning. Not great, unless she wants to speak with her Australian chums. So is there a way of flipping this to 3-5pm??

Emails banged off to various doctors. Phone calls to the palliative nurse. And I await any form of guidance. Maybe I will simply be told what Clare has been repeatedly told by Dr Phil on his visits here: that there will only be “windows” which have to be seized. And we will never be able to plan when they will come.

I also attempted to raise what we want to talk about with Louise tomorrow. How we imagine we will use the care on offer. But Clare wasn’t willing to engage. I will try again. And it’s not just that she is finding it hard to sanction anyone other than her brother being here – she said to our friend Rose, this afternoon, that she is aware that I need time away. She hasn’t said that to me, though. Maybe she just can’t start that conversation, as she’s scared where it might go. So I have to start making unilateral decisions, which seems unfair, as she is desperate for a sense of control – at the same time unwilling to participate in the conversation. A dichotomy that I am unable to solve.

I’m being hard on her. I cannot even begin to imagine what she is trying to process in her head. And, once again, I know I am bringing my sheet music to someone else’s recital, and have to keep repeating to myself: IT’S HER GIG. I am merely her Roadie.

Sorry. This isn’t as much fun as yesterday’s post.

Love to all

Reality Mortality

There was a Game Show on the TV in the 1970s when I was a kid called The Krypton Factor – referencing (I assume) Superman’s home-planet of Krypton and thus suggesting that the contestants needed super-powers to undertake the challenges set – mental agility, physical ability, high-intelligence.

I’m thinking of getting in touch with Endemol (the crowd who make Big Brother) to see if I can sell them an Immersive-Television-Reality-Show. Called – I don’t know: Terminal! or maybe Big Sister (a tad too specific perhaps??) Reality Mortality – I like that one. Ok – Reality Mortality it is.

On Reality Mortality we will have a group of disparate folk – all living in a house together, all being tasked to care for a terminally-ill patient. Nobody can leave the house. Everyone has to do their share of washing up. New daily challenges – stretching their physical and mental ability and intelligence. A “Diary Room” where they can bang on about the stresses of Compassion Fatigue, and their personal difficulties with their fellow carers. (Maybe they are all dressed in a kind of Army Combat Outfit – called, for the purposes of our format, Compassion fatigues. Or is that a gag-too-far??). One by one they will be voted off by the viewers, for things like forgetting to empty the bag, not being able to work out how the two Physical Therapy “slider sheets” work in tandem (I had to show our nurses how to make the Hospital bed – they had never seen such sheets…), not being able to come up with ideas of how to open the individually-wrapped Effentora pills (see post from August).

It’ll be HUGE. I’m already working on my acceptance speech at the BAFTAs.

No, no, but seriously, folks…what Clare and I are going through is an hour-to-hour Krypton Factor challenge. We had the morning visit from the Carelink pair. I set them the challenge of washing Clare’s hair in bed (for someone who can’t turn their head in any direction). A challenge-too-far it seems. Clare was stressed, the carers were not allowed to put her onto the commode to wheel her to the bathroom, as that is not in her ‘Care Plan’, so I sent them away, and have cancelled any care until we have the Big Meet on Tuesday. I gave the sis an anti-anxiety pill, and went onto the Internet:

How…to…wash…hair…without…water…

Various things appeared: baby powder, rubbing alcohol, lemon juice, vinegar, spray shampoos. Then I discovered no-rinse shampoo: just rub-in, watch it lather, and towel it out. Wow. But it gets better – from a healthcare site: the “No-rinse shampoo Cap” – looks like a shower cap, but contains the shampoo inside. Just take it out of the packet, put the cap on the head, massage it, take it off and towel-dry. I have ordered 3.

Managed to get out for a few minutes to do some shopping. Went to big local DIY superstore and got rather confused at the various receptacles available. Didn’t quite have the courage to ask the passing Polish store-worker which one they thought would be optimal for collecting urine when I empty Clare’s bag.

I chose a washing-up bowl.

The lovely Fiona and her hubby, Richard, came over to throw me out this afternoon. Bliss. Until I got to Cocktail Hour at my house – opened up the fridge to get a beer, and was confronted with concrete proof that I have been away from home for too long: my beer drawer was full of salad. (I must ask Shebo what that is in Swahili, and add it to my collection of useful foreign phrases)

We had a gorgeous, if brief, moment together as a family again. Gaia cooked steak, had made a wondrous collection of side-dishes, and we shared a family meal. A quick trip down the road to give Clare her meds, and back up for a few games of Backgammon with Gaia, then a moment in my study. Which is in absolute chaos. I did, however, find an old newspaper article. “Relative Values” from one of the Sunday magazines that Clare and I had done, probably in the late 1990s. A couple of lovely photos:

relative-values-pic-11-sept-16

 

relative-values-2-11-sept-16

And a selection of what we said in the article, starting with Clare:

Greg is absolutely my best friend. I was 18 months old when he was born, and apart from university we have hardly ever been apart. He found my flat for me, he built my kitchen, and until 9 months ago, he lived with me. My mum can count on one hand the times we’ve argued, and in fact I can remember each of those times…I feel safer with Greg than with anyone else. If we were in Mediaeval times he’d be a good person to be with – he’d fight off the dragons and evil spirits. He likes to protect and he likes to love… and when I’m with him I feel special and loved too.

And what I said:

 She is possibly the most caring person I know. She’s got such a good heart that can easily be abused… she has to take everything on her shoulders and make sure everyone is alright. I think a lot of the time she is looking for approval. She has to realise that she isn’t responsible for everybody else’s happiness…To be honest, I can’t see anyone not liking her, because she’ll try so hard to overcome any problem…Boyfriends and girlfriends come and go, but we’re brother and sister for life, and you can’t mess that around.

So, there we are. A reaffirmation of everything. A serendipitous moment, to have come across this article. True then, true now.

Love to all

Compassion Fatigue

Compassion Fatigue
noun
Indifference to charitable appeals on behalf of suffering people, experienced as a result of the frequency or number of such appeals.

That’s what I always thought it was. But did you know that there’s a “Compassion Fatigue Awareness Project” – and nothing to do with the above indifference?

This is what they say on their website:
Caring too much can hurt. When caregivers focus on others without practicing self-care, destructive behaviors can surface. Apathy, isolation, bottled up emotions and substance abuse head a long list of symptoms associated with the secondary traumatic stress disorder now labeled: Compassion Fatigue

Well, I’ve happily ticked off all of their destructive behaviours. Especially the substance abuse. But then I was an abuser before I started being a full-time carer, so maybe I’m just a Drunk and should ignore that as a pointer…

That said, it’s comforting to know that I am exhibiting signs of an accepted secondary traumatic stress disorder – and not just being a grumpy old arse.

I suppose it’s not Rocket Science to realise that the carer can start to mirror the person they’re caring for. Purely the amount of time spent in a situation must create a transference between the two parties involved. If Clare feels isolated, not-in-control, feeling the loss of identity that an active participation in the wider world had given her, marginalized, it’s no wonder I’m feeling these things as well, (of course, in a hugely less existential way) after 10 weeks of 24/7…

So what can we do?

I’ve done a great deal of reading over the last months about terminal illness and mortality, and just now, stumbled across a paper called “Hope in the Terminally Ill”.

I think it’s interesting to share with you all a few choice words from it:

Mortality is suddenly confronted, and the concept of hope wanes as the unattainable goal of extended life vanishes…But a seemingly paradoxical question arises: because hope is frequently defined as the expectancy of good in the future, how can a future defined in hours, days, weeks, and months provide hope?

When first confronted with a terminal illness, most patients typically relate hope to a tangible treatment or cure that can prolong existence despite overwhelming information to the contrary.

The obstacles that hinder hope: abandonment and isolation, uncontrolled pain, and devaluation of personhood.

Sources of hope: including family, friends, health care professionals, and God or a higher spiritual being.

In the context of a terminal illness, hope can exist even when time is limited. Such hope is bolstered by appreciating the patient’s value, strengthening and reconciling their relationships with family and friends.

Although physicians may find it hard to comprehend, when everything seems to be lost, that hope may actually be stronger than ever before.

I feel that this is the key to our present situation. Clare went all-guns-blazing (it’s obviously a family trait) at treating this disease. She tried everything – all the chemotherapy and radiation; surgery; a month at an Indian Ayurvedic Clinic; seeing a Healer; being on a Clinical Trial. Even when she was so ill, a few weeks ago, she was still contemplating aggressive intravenous chemotherapy. All hope-based.

Being told that the time for treatment was over brought with it the loss of hope. This is clear. And try as I may, I am unable to focus her outwards in any way – no possibility of what was written about in the paper of strengthening and reconciling relationships with family and friends. And I cannot help with this. This is something that may or may not materialise. It will not happen, I believe, until she comes to terms with where she is.

I was wrong, I think, in yesterday’s post to say that Clare’s locked-in state is purely to do with her physical illness. I think now it is much more to do with the loss of hope.

And hope is so powerful. We had a Woody Allen quote yesterday, today another great comic depressive, John Cleese, from his film Clockwise: “It’s not the despair. I can take the despair. It’s the hope I can’t stand”

Amen to that.

We had our first visit this morning – bright and early, 7.45am – from Kyle and Laura from “Carelink”. Before Laura had even got through the front door of the building, she let loose: “I’m such a huge fan!!” I suppose I’d forgotten that I’d ever had an existence outside this flat… You see?? Loss of Identity

They gave Clare a proper bed-bath and then started to go through all the paperwork required to set up her Care Plan. Unsurprisingly, mid box-ticking, she fell asleep, so we did the admin without her. All very thorough. And knowing that we have professionals on call – 24 hours-a-day if we need them – is very comforting for me.

It’s not nice to feel grumpy with your dying sister, and I’m glad I’ve been able to discover that I’m not just a bad person, but that my grumpiness has a name: “Compassion Fatigue”. And maybe now there is some hope for both of us in the potential support on offer.

Although Clare had me cancel this evening’s visit of the Carers…

Love to all

« Older posts

Copyright © 2016 Clare Wise

Up ↑

Follow

Get the latest posts delivered to your mailbox: