Life After Caring

Six weeks have passed and Nick is still gone.
I've already got used to having more time, more freedom, more space in my day and my head.
The to-do list looks different: "Buy coffee" "Check car insurance" and even "take library books back" but there are also bills to be paid and a foreboding pile of probate forms to fill in with the required documents - birth, death, marriage and divorce certificates, inner leg measurement, IQ and shoe size.
Boxes of his things are piled up in my room and await sorting out. Diaries, letters, bits and bobs of memorabilia, pens and badges and old concert tickets. They will continue to sit there until I can face it, which isn't just yet.

It's Saturday morning and the physical memory of our Saturdays still tugs at me - I'd get his i newspaper from the shop up the road and then walk down to the flat. The carers used to come in early at weekends to dress and give him breakfast and he'd often have gone back to bed so I'd come in, put the kettle on and wake him up with hot coffee and a crisp new paper.
Saturdays are different now. The familiar path I took then and every day, several times a day, is no longer mine to walk.
I don't miss it and that surprises me, but approaching the door there was always a feeling of dread alongside the love and devotion for Nick - what was I going to find when I walked into the building?
So it is a great relief not to have that worry all the time. I'm gradually stretching in to the new expansiveness of it. But I miss him.

On that first frozen Saturday evening when we went to the flat to feed Smokey, the first thing we saw were his poor misshapen slippers, just kicked across the room where he'd taken them off before going out to his last lunch. My Christmas present from last year: stained blue corduroy with the stuffing leaking out from his perpetual chafing and scuffing, due to be replaced - or so I thought.
I can't bear to throw them away just yet.

His favourite stripy jumper, washed thin and holey, is mine now and it still smells of him. I don't want to wear it all the time but I do think there is a need for a "grief wardrobe" (again, the Victorians knew a thing or two) where you are allowed and encouraged to wear your dead loved one's clothes like spirit arms to wrap around you. And fairy tales knew this too, this need to warm your bones with the loved one's scent.

Anyway, we go on. I'm so glad that we no longer have to worry about the carers, about the availability of medications post Brexit, about whether the medications were right in the first place and if he was taking too many, about the increased coughing and choking and continence fails, about the horrible neighbour, about all the little big things that added up to daily anxiety and stress.
I'm glad he has not had to suffer further indignities and that he finally felt so lucky and loved.
But I miss him.

Sorry For Your Loss

Bereavement is another country, a place you didn't plan to go to. Even if you have been here before - and I have, so many times. You'd think a person would get used to it.
But you find yourself in this parallel universe of bereavement as dazed as if dropped from a great height. You've been here before but each time the landscape is a little different and the language of this country changes too, as alien as it is familiar.
Each new day here has things to navigate that simply floor you, like how to tell someone who doesn't know yet what's happened, or how to buy a newspaper without automatically reaching for the one you used to get for him. Or even (however much I want to) how to have a normal conversation about something else without bringing the subject back to the person you've lost.

I am clear headed about Nick's death, it was uncannily timely and as we've all said, he couldn't really have picked a better way to go, and for that I am beyond glad. We celebrated his life whole heartedly and every old photo reminds me of what a good one it was. And of course I did so much daily grieving while he was alive, we all did, seeing him gradually losing every drop of independence and physical ease, flattened by the monstrous illness. I'm so glad that's all over.

But I miss my brother. Not just the helpless person I've cared for over the last few years, but my friend and companero and partner in crime; the person who knew so much about me and I him, who
shared all that history and completely unconditional love.
And I miss our dad, and our mum, and Nana, because all those other losses suddenly swing into sharp focus in this strange but awfully familiar new landscape.
All my lost babies and my dear friend Dimi and my cat Delilah. When bereavement hits you, all these old heartbreaks come up to greet you.
Although I'm way through the acceptance stage of grief for them all, it doesn't stop me being sad.
I need the company of gentle people, or no company at all, and it is one of life's great ironies that at just this time, when the funeral is over, there is Stuff To Do.

In the first couple of weeks after Nick died, I had to keep going. So much paperwork, people to notify and decisions to be made. The flat to clear, funeral expenses to organise, speeches and sandwiches to prepare.
It was good as it only seemed like a variation of the constant shadow-boxing of the caring role and kept me focussed.
Now that the initial pressure is off but there is still a ton of admin to do, it all seems so difficult.
Even the simple things are like mountains to climb. A deep, melancholy tiredness is taking over and sleep is either as dense as falling down a well, or just not happening. I catch myself staring at phone numbers to ring and letters to sign as if they're in a foreign alphabet. It's exhaustion, of course, it's only natural.

Part of the tiredness does come though from having to steel myself yet again to talk to someone on the phone. I'd say 80% of the receptionists I've spoken to in the last month have not had a clue how to deal with a bereaved caller. Cumulatively it's quite shocking, though mercifully outweighed by the sheer loveliness of every single person who had had direct contact with Nick.
But I have had some really staggering conversations with people who have either not seemed to bat an eyelid at the news, or not even listened. Phoning one organisation to say that my brother had died, I had this dialogue:

"I just need to ask you some security questions. Did you say it's your son?"
"No, my brother."
"OK. And where is your son now?"
"er, Sorry?"
"Your son. Where is he now?"
"I'm sorry, I don't understand. I'm phoning you about my brother"
"Where is he now"
"Er...In the mortuary"
"Oh. I thought you said she'd moved house."

Yes, I complained, but fuck it, I shouldn't have to.

I've also had a couple of calls where I say I need to report a death and the receptionist says cheerfully, "That's fine, and how's your day going today?"

Imagine being really tragically bereaved and having to make these calls about a child, say, or a partner you expected to have the rest of your lives with, and getting these responses.

With my old campaigning head on I want to do something about this because it is wrong, wrong, wrong. All of us are affected by loss and no one goes through life without it.
We might not want to be reminded of this on a daily basis but can we not find a better way to treat each other?

A Life Less Ordinary

We had such a splendid send-off for Nick on Friday. As funerals go, it was a jolly good one and I was so touched to see people from all parts of his life there to say a last farewell. It was a day full of music and conversation and even laughter, a proper celebration for a life so well lived. 

It doesn't quite feel like goodbye; he's with me in so many ways and as we had to clear the flat in such a hurry, the memories are all around me and will be over the next few months as we slowly sort out the rest of his things. 

Everyone spoke so beautifully and from the heart. This is  part of my eulogy for him, thinking about the last few years together and what they have meant.

"...When I think of Nick in his glory days he seemed to collect watches, nice pens, designer clothes and girls without even blinking. He had to look good for his work as a hotel manager and he always had the sharpest suits and the repartee to match. 

He met a woman he adored who was more than a match for him and they got married and had two beautiful children and when you look at the photos from those years you can see how radiating with happiness he is. He really just seemed to have it all. 

So it was particularly hard that of the two of us, he was the one to inherit HD, one of the nastiest illnesses that anyone can have. It seemed so cruel when he'd already cheated death twice in spectacular style. I felt I should have taken it on, not my little brother. But the miracles were all used up and his luck had run out.

Little by little the effects of the illness took away everything - his livelihood, relationships, money, his mobility, his dexterity and his speech, the capability to wash or dress or feed himself, his ability with figures and words and his mental alertness. Even the quick-off-the-mark sense of humour that had been his super power. You could weep with rage about it and the pity of it all. Also, he was absolutely deaf as a post. 

"Somebody Up There Likes Me" might seem like a strange choice to play for someone who lost all his luck. 

Nick had asked for it to be played at his funeral, and I have to admit I raised an eyebrow. 

But then I started thinking about the real miracle of his life: The way he dealt with his illness and his courage to keep going. Although he had lost so much, he always kept his dignity. When he had lost so many of the things we think make someone a man, he became more of a man. 

Never complaining, always cheerful and stoic, grateful for everything anyone did for him and happy to see you. 

Despite everything that could have knocked him down he was still up for it, still engaged with life and looking forward to things. 

He made friends, he had family and children who loved him, he had his nice flat and his cat and his boys' nights out and lovely people taking him out to lunch; he had his wine and his Netflix and his hot shower every morning. 

The fact that not just once but twice, by pure luck he had ended up living just a few minutes' walk from me and my family. What are the odds of that happening with a council flat? 

I realised that he actually felt lucky, and yes, he really was. And the way he died was maybe the luckiest thing of all - happy, relaxed, out for lunch with one of his favourite carers at the pub he always used to go to as a lad with his friends when his whole life was just beginning - no pain, none of the terrible long drawn out deterioration I was secretly dreading. Instead his heart just stopped. 

He quit while he was ahead, but what has been clear through all the shock of sudden parting is this - his life was transformative. 

He inspired and encouraged so many people and every card and tribute we've had says the same thing. 

I feel so grateful that Nick had the life he did and felt as loved and connected as he did and that his spirit has so touched the people around him.

Somebody Up There definitely did like Nick, and it's why we are all here today to celebrate his life. What an extraordinary one it has been. You are an inspiration. Here's looking at you, Bro."