Making that move

On Thursday I put my mum into a nursing home. It did not go well.

The human mind is a strange beast. Even in the absence of dementia (and I don’t think I qualify for a diagnosis just yet, although sometimes it certainly feels as though I do) , the brain tends to paper over the cracks of reality and try to shoehorn the world into something that makes sense.

So even though my mother doesn’t know who I am… even though she talks about how she lives with her parents (who have been dead for over 30 years)… even though she says we went to school together… even though she had 3 raw sausages and a handful of strawberries in the microwave and was calling them dinner… even though she forgets that my dad is dead… even though she says the same things a hundred times in one 10 minute conversation – each time thinking it’s the first… I thought she was in some way still… her. Still… I don’t know… normal, for some twisted and barely comprehensible meaning of the word.

So the morning I put her into the nursing home, I dropped by her house around 10am, and told her that we had bought her a treat. That we were taking her to a hotel for a few days, so that she could enjoy some luxury. And it was plausible, because the nursing home really looks like a hotel. Things have certainly changed in the aged care industry.

She was excited, and happily fussed about, trying to get ready, and wondering what to pack. “It’s so unexpected, I didn’t know this was coming, did I?” she would say, at least once a minute.  I’d reassure her it was a surprise, she’d shove something random into the back and then say “Gosh! You’ve thrown me. I didn’t forget, did I? I didn’t know this was coming?”

So far it was going better than I expected. “We’re just going to stop at a cafe, mum, until the room is ready.” “Oooh, lovely! Are we going to your place?” “No, we’re just going to a cafe, then to the hotel.” “Ah! Ok. Are we going to your place?” and so on, around the merry go round.

While we waited for our coffees, my husband, Andrew, took some key photos and personal things to the nursing home, to try to setup the room to look familiar.

“I’m a bit flustered. What’s going on? I didn’t know this was coming, did I?”

As Mum got more agitated, I texted Andrew. “Run for it, she’s getting anxious, we have to move.”

The home staff could not have been nicer. They got us a cup of tea, while Mum admired the decor and said how posh it looked. But when we got to her room, things started to go rapidly downhill.

“Why is there a single bed? Where will you be? I don’t want to stay here on my own!” the questions were coming thick and fast, and she was starting to get really freaked out.

“I want to go home! You can’t keep me here!! Take me home! My parents will come and get me!”

The staff came to try to help me settle her, and brought us another cup of tea. Typically, now the threats came. “I’m going to call the cops! I’m going to tell them you brought me here without my consent. WHICH IS A FACT! You can’t keep me here! I’m not sleeping in a single bed! I’ll fall out of it! THIS IS CRUEL. HOW COULD YOU LEAVE ME HERE ALONE? This is so cruel. How could you want to leave me here alone? I’m not nuts. I’m going to call the cops. You’d better take me home, or I’ll call the cops!”

And on it went.

A truly lovely staff member named Lea came and persuaded Mum to go to lunch before she came home. She settled at a table with a lovely old guy and was soon chatting happily, but every time she looked at me she got agitated and started shouting about how she wasn’t staying. I made an excuse to get up from the table and suggested to the staff that I should go. In a move worthy of a slapstick comedy, the staff sneaked me out while mum wasn’t looking, and I scuttled downstairs feeling like a criminal.

Lea looked at me as the tears started to flow and said “Don’t you worry.  This isn’t unusual. You might have to bring her in 5 or 6 times before it works.”

The horror of that vision nailed me to the floor. I had barely survived doing it once. No way could I do it again.

So let the light guide your way, yeah
Hold every memory as you go
And every road you take, will always lead you home, home
It’s been a long day without you, my friend
And I’ll tell you all about it when I see you again
We’ve come a long way from where we began
Oh, I’ll tell you all about it when I see you again
When I see you again
–Wiz Khalifa, See You Again

 

There followed days of screaming and trauma. I was craven – I didn’t go back. My sisters spent a lot of time there, and when someone is with her she is generally almost calm, but constantly asking when her parents will come to get her. Left to herself, though, she freaks out. Nights are the worst, but there’s no actual good time. I have to keep reminding myself that it’s only been a few days. It can take weeks for a new patient to settle. There’s hope.

But now I know how much my own brain has been papering over the cracks in my Mum’s behaviour. This frightened child – crying for her parents to come and rescue her, while she shouts about calling the cops – this is not my Mum. I knew she was impaired. I knew there wasn’t much left. But I really wasn’t prepared for the descent into madness that the unfamiliar surroundings would trigger.

She wasn’t safe in her own home. This is the best possible place for her now. But it feels as though the only thing left that was truly her was bound to the shell of her home. Taking her out of her home feels as though, in trying to save her, we have lost her completely.

 

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The brain that destroys itself

There’s a lot in the news these days about how the brain can cope with injury, rewiring and recovering using neuroplasticity – the ability of the brain to remodel itself.

If our brains are neuroplastic, then it seems to me that dementia is the opposite. It’s some kind of corrosive substance that eats away patches of the brain with random, impersonal cruelty. Faster then neuroplasticity can possibly manage.

How else can I explain that my mum tells me the same story, every time I see her, about her Dad sitting on a seat that didn’t even exist 30 years ago when he died?

That it is fixed in her head that there is a swimming pool in a nearby property because it had a “Danger, Swimming pool under construction” sign on it for a few months several years ago, when they were digging out the underground garage. The house has been finished for a long time, but the fictitious swimming pool remains front and centre in what’s left of her brain.

Me, though… I am gone. Well mostly gone. She knows she knows me – today, wonder of wonders, she even knew my name, which is rare – but she asked me if I knew her children: Sally, Jane, and Kerrie.

When I arrived at her place she told me she wouldn’t be living there much longer. I asked her where she would go, and she said she had parents nearby.

A bit later she told me her parents had died and that’s why she was living alone. I don’t know if she remembers my Dad at all. I didn’t have the heart to ask. Anyway, it changes from moment to moment.

Why does the swimming pool stick in her head, when I am gone? It’s not long term and short term, or early memories vs late. It’s far more random than that.

We went to Red Brick, as usual, and Chris and Bruce were lovely. I don’t know how I would survive these visits if it weren’t for them. Within the space of a few minutes she said she hadn’t been there for years, and that she goes there often.

As the visit went on and she bounced back and forth through time like a confused pinball, I think Chris could see I was struggling. When he brought me my coffee he gave me a pat on the back that nearly broke me. Sometimes when you’re only barely keeping it together, someone being nice to you can tip you over the edge, have you noticed that?

She is deaf as a post and doesn’t hear one word in five, but it doesn’t matter because the words she does hear mostly don’t make sense to her. She has got to the point where she tends to fill in the conversation in her own head a lot of the time, which is almost restful. I try to let it all wash over me but it breaks my heart and pulverises my brain. Being with her is devastating and exhausting, and I feel as though I am losing myself in her frantic confusion.

Mum doesn’t see me anymore, whether I am there or not. And maybe it shouldn’t matter. Even before dementia took her away, she never saw me clearly. I was never who she wanted me to be. Maybe now I am easier for her to accept. As for me, I struggle to wrap my head around this new reality. My mum is dead, and I don’t know what to make of the stranger who inhabits her skin. She is dead, yet she dies a little more every day. How do you process that?

Sometimes Mum peers through the fragments of her personality and I can tell she is terrified by what’s happening to her. When I leave, she says fearfully “I didn’t do anything wrong, did I?”

I reassure her as best I can, and I cry all the way home.

This everlasting twilight

There’s a huge amount going on in my life right now. It’s all very exciting, and every day brings a new challenge, a new opportunity, and often a few things that make me – let’s be honest – squeal. Just a little. One of those things is the Superstars of STEM programme, which is an awesome opportunity to learn how to get the message of STEM and Computer Science Education out there into the world. I’m so thrilled to be a part of it, and I have a feeling it’s going to open a lot of doors. It’s incredible.

Even before the Superstars were announced, I was getting amazing opportunities to speak to scientists and create collaborations. My work has started to snowball in a way that means I get to pick and choose the best opportunities for my students, and I have to prioritise the things that will have the biggest impact. Professionally I seem to have stepped up a few levels in what I can achieve. It’s making me a little breathless. I’ve just hit the end of term 2, and right when I should be collapsed in a heap moaning about how exhausted I am, I find myself leaping around like the energiser bunny, making things happen.

Just as I was putting the finishing touched to a presentation this evening, I had a sudden urge to call Mum and tell her all about it. When my best friend died in a car accident I felt like that all the time – I would go to call her and then be hit afresh by her irrevocable absence. Eventually that settled, but with Mum it’s so weird. Because she’s not dead. Physically she’s actually in pretty good shape. But there’s no telling her things. There’s very little “her” to tell.

The other day she rang me (which I didn’t think she still knew how to do), and it took me 5 minutes to get her to understand my name. (Yes, you read that right. She called me, but she didn’t know who she had called.) When I used my family nickname she didn’t understand it at all. Once I spelt out my name she got it, but still didn’t know I was her daughter.

On the surface, we had a perfectly sensible chat. She told me she was thinking of retiring.

(She hasn’t had paid work in over 30 years)

She told me she hadn’t told her family yet.

(what does that make me?)

She told me she was thinking of travelling abroad.

(She gets lost 2 blocks from home)

We’ve lost her.

But she’s right here.

She looks like my mum.

She even sounds like my mum.

She’s right here.

But she’s gone.

That sharp pang of grief. The coming to grips with losing a loved one. It’s a dreadful thing. I know it too well.

But this? This everlasting grievous twilight?

This is the sharp pang of grief renewed every time I see her.

This is a new loss every day.

This has no end in sight. No relief. No closure.

Oh, I know they will come. But who knows when? There could be ten more years of this. Of having her right here. And losing her over and over.

So I can’t tell her. I can’t hope that she might be proud of me. She was sad when I left academia and became a teacher. She thought it was a step down. Maybe now she could see how far I’ve come. If she could still see anything at all.

Instead we share this everlasting grievous twilight. And I try to turn my face towards the sun.

 

 

 

 

Feelings I don’t want to write about

I don’t want to write about this because I am ashamed. I feel a terrible, monstrous guilt, and I’m so busy judging myself that I can almost find no space in my heart to worry about how you might judge me. Almost. But what I’m about to tell you is pretty shocking. You might judge me. I wouldn’t entirely blame you if you did, because I’m certainly judging myself.

But it occurs to me that, although it feels incredibly lonely to me and my family as we go through this, this is actually not a rare story. So maybe there are other people out there feeling guilty, and ashamed, and believing they are utterly monstrous for feeling the way they do.

Maybe baring my soul will help them. Maybe it will help me. Maybe, even now, I’m putting off admitting the truth.

So here it is:

I wish my Mum would die.

Without context, those words are pretty shocking. I can’t quite believe I feel them, much less write them publicly like this. And I condemn myself, so strongly, for their callous truth.

But the truth is, we lost Mum years ago, and we haven’t the luxury of mourning her. Of accepting her passing, learning to live with our grief, and moving on. Because we are compelled to maintain the shattered shell of her brain, and her surprisingly robust body, regardless of how little of her remains inside it.

She doesn’t know her children. She certainly doesn’t know her grandchildren. And she is terrified of what is happening to her. She is unbearably confused and distressed. She wants to go home to her parents – perhaps to a time she felt safe – although even if they were alive she probably wouldn’t know them.

She used to have lucid moments, but I don’t think they happen anymore. She is easier to manage now as some of the rage and paranoia have eroded, along with the last of her personality. She used to remember – or create – fragments of her past, but even those are gone now.

And this is the best she will ever be from now on. Every day she will get worse. Every visit will be more traumatic. And we mourn her even as we keep her alive. We fight her to find ways to take care of her, and she resists them, every one, because it’s all so confusing and terrifying to her.

Every day another small window into ways that we can help her squeezes closed. Every moment she becomes more lost, more alone, less herself.

And all we can do is keep her alive. Even though she died so long ago.

I don’t want this to happen to me. I don’t want to put my children through it. I don’t want to go through it myself. Who benefits from dragging out her terror? From maintaining the trauma that is her – apparently – sacred life?

There is nothing sacred about the rigid enforcement of laws that promote infinite pain and endless sorrow. This is not about the value of life. This is callous, unfeeling, and fiendishly cruel.

We talk about quality of life as though it is something we have control over, but there comes a point where quality of life goes irretrievably negative. Where maintaining this life is no longer the ethical thing to do. Where keeping someone alive is simply torture.

Who benefits from this hell Mum is going through?

Making sense of dementia

I hope you didn’t read the title expecting a solution. Because we are not in a solvable state. Dissolving maybe, but not solvable.

How do you make sense of dementia? How can you explain to someone the profound desolation when your own mother doesn’t know who you are? When she asks you whether she knew your Mum?

How can you possibly convey the heartbreaking trauma of having your 78 year old Mum begging to go home to her Mum and Dad? The Mum and Dad who died 45 and 30 years ago. Of knowing she is ill but being unable to get her to see a doctor?

How can you explain the soul shredding mundanity and frustration of the sheer volume of paperwork and complexity around a million little things like not being able to get her gas meter read, because she doesn’t hear the doorbell and is utterly paranoid about locking the gate?

It’s impossible to describe how agitated she gets when we try to fix something around her house. How difficult it is to do simple hardware jobs when she is overflowing with anxiety about what it means, how it happened, and whether she is going to get into trouble. And hovering over you begging to go home to her Mum and Dad.

I’ve heard people say it’s like caring for a child – that the positions are reversed and the children become the parents. But that’s far too simple. Far too benign. Because children learn. Children have hope. You can explain things to a child. At the very least, children can understand when they have gone too far.

Children grow and progress, but dementia is taking my Mum inexorably down. I lost her years ago, but there has been no funeral. No wake. No flowers. And every time I visit I lose her again. When Dad had cancer I was waiting for the phone call that would tell me he was gone. Now I wait for the next crack in the increasingly empty shell of my mother’s brain.

Imagine not being able to continue, but getting up every day and doing it again.  Imagine a soul as lost and helpless as a child, but as strong and angry as an adult. Imagine losing your mother over and over again. Imagine a death that takes a decade.

 

 

The day the front fell off

I can’t bear the idea that John Clarke is gone. Goodness knows there is plenty in the world to be disturbed by, and I have been closing my eyes and breathing deeply and, I admit it, turning my face away from the news. But this – this death of a 68 year old I never met – this is what broke me.

John Clarke and Bryan Dawe had a way of taking our lives, our politics, our society, and lampooning them – with straight faces and the driest of wit – so that even the most rabid fan of a policy or faction could see its absurdity, its unfairness, or its incompetence.

I will never forget the hundred metre track from The Games. When we don’t want to answer a question around here, we always say “Not that I recall,” “not to my knowledge,”, or “can I have a glass of water?” They’ve made me laugh until I couldn’t breathe more times than I can possibly recount.

When world events were more horrendous than I could bear, Clarke and Dawe always gave me hope, because not only did they get it,  they could communicate it so clearly, so eloquently, and so incredibly wittily, that it seemed that it had to be obvious now, even to politicians.

Death and I are old foes. He has come too close too often. I have railed against him through long and desolate nights. I have been shattered by him unexpectedly, and I have seen him coming and been unable to dodge him. He has taken people close to my heart, and who knew me inside out. John Clarke didn’t even know I existed, but his death comes surprisingly close, because he meant more to me than I even realised until this moment.

Isn’t that the cruel irony of death? That sometimes in losing someone you suddenly know how much they meant – too late to let them know. I wish I had emailed, or tweeted, or written to him somehow. I suspect I’m not alone in knowing now, in this moment, sharply and painfully, how priceless he was, and how grievous a loss this is to our public life, and our understanding of the world.

John Clarke made the world a happier, more bearable, more intelligible place. He helped us understand it. He made us laugh. He made us think. He made us better.

Who could ask anyone for more?

 

 

 

Maintaining the Rage

Things they don’t tell you about dementia, number 542: Rage.

Not Mum’s rage. That does come and go – but it always did. It’s hard to tell where Mum ends and dementia begins. I’ve been a target of Mum’s rage as long as I can remember. That’s not new. But it used to go on for months. Now she forgets within minutes. There are upsides.

No, the rage that’s a problem is mine. I want to kick, punch, and scream until my throat is raw. I want to throw things at the world. I want to tear something down. Blow something up. Beat myself senseless.

Do not, at this point, tell me that everything happens for a reason. There is no reason for this. Dementia has no logic, no reason, no plan. Dementia is a senseless, random trauma that crushes the breath out of me even as it eats away the life of my mother.

I want to scream into the face of the world that it’s not fair, but the world couldn’t care less. I go home, go to work, care for my children. I do the shopping, take my daughter to swimming and answer my email, when all I want to do is fling myself at the floor and kick and scream “THIS IS SO UNFAIR!” But life has no time for tantrums.

Break all the records, burn the cassettes

I’d be lying if I told you that I had no regrets

there were so many mistakes, and what a difference it makes

but still it shouldn’t surprise you at all

You know

I said it shouldn’t surprise you at all, You know

Don’t look now but you have changed

Your best friends wouldn’t tell you

Now it’s apparent, now it’s a fact

So marshall your forces for another attack

It was always within you, it will always continue

And it shouldn’t surprise you at all

You know

Billy Joel, Surprises

I am so angry. I hate this. I want it to stop. I want it to end. I want relief. I want to know what’s coming and how we will handle it. I want to pretend it’s not happening. I want someone to bloody well fix it, and now. I want to be held and told it’s ok. I want to push the world away. I want to make it stop. I want to run away. I want to stay home and hide. I want to drown my sorrows in chocolate and icecream. I never want to eat again.

I can’t do this anymore, and I can’t stop. It hurts. Don’t tell me how to help her – she won’t let me. Don’t tell me to remember the good times, there weren’t many. Don’t tell me you’re sorry. Just stand well back while I implode. She would hate this, but she left years ago. There’s no connection. No parent. There’s nothing left but rage and fear. But I can’t walk away. I shouted at her today. God knows she provoked me, but she crumpled like a child.

I need to be angry. It masks the fear, the guilt, and the sadness. All I can do is maintain the rage.