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.
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:
Love to all