Trying to give away my past

We are packing up Mum’s things so we can sell her house. I have no particular attachment to that house. She moved there with Dad long after I left the family home. It was never mine. But her things… oh… her things. Look, I’m not into stuff. I get a little sentimental from time to time, but I’m not particularly interested in things, or even places. For me it’s always been about people.

So it has come as something of a shock to realise that things sometimes contain echoes of people. That memories can hide as easily in the smell of a camphorwood chest as in the face of a loved one.

I thought about keeping some of Mum’s jewellery, but there was too much sadness and anger wrapped up in each piece, so I turned my back.

I want to keep it all, and I want to burn it.

I want to hug the blankets that were kept in that chest, that smell of my past, and I want to shred them and scatter them on the wind.

I want to scour the house clean of the pain and anger that dwelt there for so long, and I want to preserve it as it is – a snapshot of history. An instant in time.

I sometimes wish I had kept my family surname, having since developed a relationship with my relatives that my Mum, in her pain and confusion, taught me was permanently out of reach. But I still want to reject my history with a visceral strength I can’t explain.

I thought this packing up, this moving on, was a mere technicality. An effort, certainly, but without emotional cost.

I know better now. Pain and rage are ties as strong as love, and harder to process. And these things from my past contain echoes of the pain, but also of the smiles – because, of course, there were smiles. Few lives are wholly bleak. Few families entirely traumatic. Although I can’t always reach it behind the drama, there was happiness. There was love.

And taken as a whole it made me who I am. Quick to anger, hard to fathom, but also overwhelmed by love and compassion. I fix things. I help people. That’s who I want to be. But I don’t know how to fix my memory, or my heart.

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Things I didn’t know could go wrong with Aged Care

Regular readers may be wondering about the extended silence about my Mum. Last I wrote she was in a nursing home and there was hope, however faint. Well. That went downhill really fast. I will fill you in, but I want, first, to give you an overview of the process of actually finding a place.

First of all, we were looking for a place in a dementia unit. But all of the patients I saw when we toured dementia units seemed much worse than Mum. I saw some places that made my skin crawl. They stank. They were miserable. I could not have put my mum in a place like that with a gun at my head. And although it sometimes felt as though there was, in fact, a gun at my head, I had to draw the line somewhere.

So we found a dementia place in a very lovely nursing home. It was expensive, but lovely, and we are lucky that Mum could afford it. There was one free bed. It was perfect. I filled out all the paperwork, filled with hope, and then the clinical care coordinator rang me to say “We can’t offer your Mum a place. We can’t look after her.” This, bear in mind, was a dementia ward. If they couldn’t look after her, who could? I didn’t even know this was a class of thing that could happen: that a patient could be too demented for a dementia ward. It threw me into a spin.

So I kept looking. Since Mum didn’t actually seem bad enough to need a dementia ward we tried for an ordinary place. I was very up front with them about the fact that Mum refused to see a doctor, and hadn’t been fully assessed. Their clinical care coordinator, Kate, met us for coffee in Mum’s favourite cafe, so as not to alarm her. Mum was delighted to see her and invited Kate to stay at our holiday home. Kate took it gracefully. And the next day we moved Mum in.

It was a disaster. They were calling us every day telling us they couldn’t cope, that she was literally climbing the walls (or at least the fences) and trying to escape. They tried to get us to take her home, but there was no way we could take Mum home knowing now, fully, how impaired she was.

So we frantically searched for another place. In desperation we called an advocacy service that a friend had recommended to me, Signpost Aged Care, and they practically saved my life.  The advocate we worked with, Margaret, made it very clear what our rights, and the nursing home’s responsibilities were. She took careful note of our wishes and found us a list of places with a bed free in a dementia ward who she was confident could handle Mum. My sister checked them out and chose one. We were ready to move.

But: before we could move, the first nursing home held a fire drill. They took the residents outside. Knowing Mum was trying to escape, they did not monitor her. So of course she scarpered. It took them a couple of hours to even notice she was gone.

Eventually the police found her a couple of suburbs away and an ambulance brought her back. The next day she was in her new home, which was amazing. The main nurse in the dementia unit, Marie, is a beautiful soul and she manages Mum incredibly well. Mum is now as close to content as she is capable of being, I think. She still gets aggressive – ironically now it’s because she is so well settled she wants to know why these other people are in her home. She won’t let anyone clean her room, and is happiest when the staff let her vacuum the hallways – which they do frequently.

When I visit she thinks I am an old school friend, or a former staff member, or who knows what else. When I took my girls there she thought they were my grandchildren. In truth, I always feel I age at least 30 years when I visit, so maybe it makes sense.

It’s still surreal. But she is safe. She is cared for. And now that we are cleaning out her house I am finding diaries with the saddest, most paranoid and distressed notes in them that make it very clear she has not been truly happy for a long time. I think we have to accept that this is the best we can do now.

It makes me sad.

And clearing out her house makes me sad. Because it is further evidence of how impaired she has been, and for how long. It is a mess. And things there are bizarre. But we’re getting there.

So she is as close to settled as she can be. And we pack up her things and ready her house for sale, and try to farewell her through her possessions, and little slices of our family history, in a way we can no longer do face to face. Because she is no more present in her body, these days, than she is in her house.

She hasn’t even gone back to her childhood the way many dementia patients do. She is adrift in a sea of incomprehension and fear. She asks for her parents, but doesn’t seem to remember them. The staff at the nursing home give her as much comfort as they can, and she manages, but this is no sort of life.

I tell you this: I don’t want this to happen to me. I don’t want to be looking for my mind like a lost set of keys. I don’t want to know, on some level, that my own self is leaking away, and that I can’t possibly stop it. It is a cruel and torturous death, and I don’t want it. I will not have it.

So don’t tell me palliative care is enough, and that euthanasia is unethical. I have the right to choose, and I WILL NOT GO THERE. Maybe I’ll be lucky, in spite of the family history, and it will never be an issue for me. But if it comes, I tell you clearly, I will not be taken. I will die on that threshold, by my own hand, before I will let this happen to me.

 

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?