“…she went on all the same, shedding gallons of tears, until there was a large pool all round her, about four inches deep and reaching half down the hall.”
Alice in Wonderland – Lewis Carroll
I wrote about my Dad earlier in the week, and how he died, and the grief that ensued. Grief is a boring thing. It’s mundane, dull. I’m sure it’s very personal too. I can only write about mine, and mine is pretty run-of the-mill.
It hit me in the months after Mum’s death that I was an orphan, and that things would never be the same again. That I couldn’t ask Mum’s advice about what washing machine setting to use; that I couldn’t talk to Dad about work any more; that I’d never again be able to show Mum the bees dancing around the lavender. These are all very everyday things, but, when someone is irrevocably torn from your life, it’s often these seemingly little things that become overwhelmingly huge.
Although my grief was, and is, pretty routine, my Mum was anything but. I’ve written about Mum and Dad before. They were amazing people. Mum was a force of nature. I really don’t know anyone else like her, and I don’t think I ever will again. Mum had faced challenges with her health from early in life. In her 20s, in swinging sixties London, she was diagnosed with epilepsy (something she kept from my sister and me until we were in our late teens). Epilepsy was manageable for Mum, but a pain; thankfully the major seizures were kept under control. In her 40s she was diagnosed with MS, and then, terribly unluckily, she was diagnosed with another neurological condition that would eventually kill her: Parkinson’s disease.
The MS was relatively OK. Mum was diagnosed when I was fourteen. It involved lots of tripping up (rather than major falls), some stabbing pains particularly in her feet and legs, and other weird neurological symptoms. It was when Mum began to develop symptoms that weren’t epilepsy or MS-attributable that we worried. Initially the consultant delivered some earth-shattering news: it might be Motor Neurone Disease, and we should prepare for the worst. I was sixteen, taking my GCSEs, and more preoccupied with The Prodigy than complex neurological conditions. But even I, in my sixteen year old selfish self, realised that this could be dire. I was still (just about) going to Mass then, and I prayed for the first time in years. So, after months of tests and appointments and worry, the final diagnosis of Parkinson’s came as a blessed relief. But we had no idea. We thought Parkinson’s was a bit of a shuffly, trembly, old person’s disease. As Mum was diagnosed in her early 50s, we thought all was OK, pretty much. And, as I’m told by Parkinson’s experts, living beyond twenty years from diagnosis is remarkable. But Mum was remarkable.
I’m not going to go into detail here about Mum’s deterioration over a twenty year period. Safe to say, though, Parkinson’s disease is not just tremors and shuffles and forgetting the odd word. When the Parkinson’s got much worse, and tore Mum and us to pieces, it was us changing her nappies; laminating our photos and phone numbers and sticking them on the wall so Mum could remember; desperately trying to calm a terrified Mum as she hallucinated (a frequent Parkinson’s symptom when the disease gets more advanced); finding Mum bleeding out on the floor having punctured her lung with her own rib after falling on the sideboard; making Mum’s food into a mulch so she could just about swallow it, as the swallow reflex deteriorates. And this was almost constant for the last few years of her life. Parkinson’s flays the soul of dignity and tramples on it and laughs at it and keeps laughing and doesn’t care.
But, like my grief now, this unhappy regimen of what we did became usual, regular, mundane. My sister and I, and our partners too, became part of the routine. That said, it didn’t make what we did any less special or memorable – we have many, many funny memories (both my parents were hilarious – but that’s another blog). Dad had died, and Mum’s Parkinson’s-associated dementia had started to kick in, but it meant that she often saw Dad around their flat. We all found this comforting. Mum couldn’t write very well at all as Parkinson’s had ravaged her motor skills, but we left her a notebook and pen to use during the day because she still wanted to write. I came over one day after work and found her writing about my Dad (he was called Bernard, but she called him Bern – see below). This was often in a web of other fleeting thoughts and memories. If you know someone with Parkinson’s and with dementia, you’ll probably have to, at some point, accept the unacceptable: dementia knits tightly the neurological tangle of memories and thoughts and feelings: you can’t often work out what is real and what is not. It’s ferociously upsetting until you try to accept it.
As dementia tightened its grip and shook Mum like a ragdoll, Mum had a spectacularly catastrophic fall about nine months before she died, in the summer of 2014. She smashed her head, her ribs, her arm. This sounds awful as I write, but again, it’s what we were used to; we were familiar with the hospital patching her up and us, as a family, starting again. But this fall was different. Although Mum still recognised my sister and me, her speech had changed. She slept for hours at a time. She sometimes didn’t recognise our partners. We knew something was wrong; the earth was out of kilter. Mum was admitted to hospital after the fall in August 2014, and there was no improvement. Nothing. We were convinced she’d had a stroke. It wasn’t until the 3rd October, unhappily my Dad’s birthday (which is why I remember the date), that my sister and I were ushered into a bleak, anonymous room, to be told that Mum had entered “the last stage” of Parkinson’s. We had no idea what this meant, so I had to ask: was Mum going to die? The response: Yes. She probably won’t make it to Christmas.
Typically, Mum ‘dug in’. Both my parents were exceptionally determined, a trait both my sister and I have too; it was almost as if Mum refused to accept her fate. She moved to a hospice, but became even funnier, more animated, more beautiful. She made it past Christmas. She made it past my birthday (February), and my sister’s birthday (March). She made it past her own birthday (early April). The carers and nurses in the hospice were magnificent. Amazingly, just a week before Mum died, they managed to help her walk down the corridor, with a nurse on each arm. Although everyone knew Mum was dying, they never gave up.
Then, one dazzlingly bright April morning, with the sparrows chirping outside the window, my sister called. I knew what had happened before I answered the phone.
The next few hours were a blur. I remember calling work and explaining what had happened; traffic lights; that I didn’t have time to wash my hair. Stupid stuff, but concrete stuff. I remember feeling bereft. If you’ve read my last blog post, you’ll know that I decided that I didn’t want to see my Dad when he died; that I’d caught a glimpse of him through the door and that he, dead on the bed, didn’t look like Dad. It hadn’t even occurred to me that I’d have to make this awful decision again. I decided I would see Mum.
Mum was far more what I’d expected death to look like than Dad’s furious, angry departure. Mum looked completely serene. She even looked comfy. But, and what upset me greatly: she was cold. Again, it hadn’t even occurred to me that this would happen. After leaving her in her room, I remember little else.
So here I am: an orphan. I’m aware that sounds pathetic, and I’m definitely not asking for sympathy. I’m also not going to happily, piously accept Mum’s or Dad’s deaths. It’s not fair and, like I said in my last blog post, I’m pointlessly bloody furious about it. But my fist-waving at the heavens is completely futile, so I try to channel that energy, that fury, into what I do in a positive way. I’ll write about this another time.
And, as I said last time, Mum and Dad left a huge gap, an empty void. But I’m OK with it, because it’s a gap I don’t want filled: it’s a gap hewn by their love.