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.

 

 

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.

Down the Dementia Rabbit Hole

I don’t always write about my visits to Mum. There’s always something new, but often there’s no new emotion left to deal with it. Nothing left to say. Nothing new to feel.

Today was pretty normal at first, as far as dementia allows for any definition of normal.

Mum asked me where my parents live. “Only in my head, honey. Only in my head.”

Of course I didn’t say that, just answered lightly and steered the conversation to safer topics. But I’m used to that one now. Then she said I was her sister. That was new. She’s an only child. But she hasn’t reliably known me for months. I’m not greatly disturbed by who she thinks I am.

We went out to lunch. She was a little odd – differently odd, even for her – but nothing particularly radical. We walked back to her house, and I waited to see her inside before leaving. She fumbled with her keys and couldn’t get the gate unlocked. This is pretty normal for Mum these days, so I waited a bit in the hope she would sort it out, and then I got out my keys and tried the lock.

It was stuck.

I had the right key – I had opened the gate with it when I arrived – but it wouldn’t turn in the lock. The lock is a deadlock and the gate is one of those spiky ornamental ones. The house is really quite a fortress, so being unable to unlock the gate makes getting in a significant challenge.

Mum immediately started to panic. Her key chain is festooned with broken keys, and she was getting more and more stressed about trying to unlock the gate. I was worried she would break her key off in the lock and then we’d have no hope. To top it off it was getting late and I needed to get home to pick up my kids.

I tried to get Mum to stop wrestling with the lock while I figured out what to do. I couldn’t open the garage, as the batteries seemed to be flat on the keypad. There is no easy place to scale the fence. I tried my key in the lock again, to no avail – it was definitely the right key, but the lock just wouldn’t move. Meanwhile Mum was becoming increasingly agitated, saying it had never happened before and she never had any trouble with the locks, why was it happening now, what were we going to do, why was it happening now… her stress levels were sky rocketing and it was impossible to isolate myself from her panic. It was infectious.

I called my husband to see if he had any suggestions, which at least calmed me a little, and I worked out that if I put my foot in the letterbox slot I could get myself up and over the gate (lucky I’ve been doing all that weights work recently is all I can say!). I had to sit on the spiky gate to get my other leg over which was no picnic, but I managed it.

I jumped down the other side to find that the lock was indeed jammed. But it was jammed outside the latch-hole. If we had tried the other handle, the gate would have opened.

This is the rabbit hole of dementia. I’ve felt for years that visits to Mum took my brain and ripped it into tiny pieces. I’ve long suspected that I didn’t ever manage to collect up all the bits, and that with every visit I, myself, become less complete. Less coherent. It’s impossible to be around that level of dysfunction without becoming somewhat dysfunctional yourself. But today I failed to open a gate that was, in fact, not locked.

I saw Mum safely inside. She became calm as soon as she was inside the house, fortunately. But her panic, her terror, her anxiety? I took them home with me. I pulled over on the side of the road halfway home and sobbed. Over a gate. Yet not over a gate at all. Over the mess that this damned disease has made of my mother, and is making of me.

I don’t want to play this game anymore.

 

Surrealism, dementia style

You know what they don’t tell you about dementia?

Well, actually, nearly everything. But chief among them is how incredibly surreal it can be. I was at a cafe with Mum today. And it was fine. I was showing her photos from our holiday. She seemed to recognise my daughter, who was hanging out with me today. And as we chatted she turned to me and said “You can do the maths. How long have we known each other?”

It doesn’t matter how often this kind of thing happens, it’s impossible to get used to it. I stared at her for a moment and she said “I mean, I know we’ve known each other for a long time. When did we meet? And where?”

All the dementia literature says not to burst the bubble. Just play along with their reality. So I said “Well, it was 44 years ago,” hoping she would let it go at that. She exclaimed over how long we had been friends and then said “So where did we meet?”

I wasn’t sure whether to burst out laughing or put my head on the table and howl, so I said “we met at the hospital,” thinking that perhaps she would twig. She looked puzzled and said “did I come to see you did I? That was nice of me.”

I agreed it was indeed nice of her, while my heart quietly shattered. But she hadn’t finished with me yet. “Well hang on, you were in hospital, how did we actually meet?” oh yes. Nice time to use logic, Mum.

“We were in hospital at the same time.”

“Wow. That’s amazing”

“Yes, yes, it certainly is. I am amazed.”

It’s hilarious, really. Except it punched out my heart. That’s surrealism for you, I guess.

Half an hour after I got home she called me to ask when she would see me, it’s been so long.

When you feel my heat
Look into my eyes
It’s where my demons hide
It’s where my demons hide
Don’t get too close
It’s dark inside
It’s where my demons hide
It’s where my demons hide

They say it’s what you make
I say it’s up to fate
It’s woven in my soul
I need to let you go

Your eyes, they shine so bright
I wanna save that light
I can’t escape this now
Unless you show me how

Demons, Imagine Dragons

It’s not like this is new. She has forgotten me before. But the human brain, pre-dementia, is surprisingly resilient. It bounces back to its base state whenever possible. And regardless of how fractured, how flawed my relationship with my Mum has been, the base state of my brain is heavily influenced by that most primal of relationships: parent to child.

And that relationship was like two ropes. One from her to me, one from me to her. God knows those ropes were sometimes more like barbed wire. Sometimes they were so tight it was painful, while at others they were so thin and loose as to be almost undetectable. Ultimately, though, they were always there. But now her rope to me is unraveling. In fact that’s probably a lie I’m telling myself even now. Face it, it has unraveled. Evaporated. Gone.

I don’t know why that hurts so much. Her remembering me was usually pretty traumatic. When Dad was still alive their “remembering” moments usually involved threats of legal action, or screaming down the phone. But I still feel shocked and sick every time.

She still knows she knows me. But she doesn’t know who I am. There is no doubt a day coming when even that last flash of recognition will be gone.

I spent the rest of the day doing what had to be done. I drove home. Did the shopping. And halfway back from the shops I suddenly sobbed hot, desperate tears. It will only get worse from here. And I’m not sure I can do this anymore.

 

The Heartbreak kid

Have you ever noticed how, when things get really bad, sometimes it’s not the blows that knock you down? Sometimes you get hit, and hit, and hit, and stay standing, right up until someone asks if you’re ok – and then BAM! You’re down for the count.

This morning I got a package from a dear friend in Queensland. I shared a pattern on Facebook ages ago for crocheted sandals made out of thongs, and she had made me some. It made me a little teary. I’m very lucky in my friends. I had a visit to Mum planned, so I resolved to hug the thought of those sandals to me, to remind me to smile.

I knew when I called Mum this morning that it was a bad day. She couldn’t hold a thought even for a moment. Meaning eluded her. She wasn’t sure who I was, or what was happening. Her conversation, usually fragmented, was in a lot more pieces than usual.

I think I’ve already lost you
I think you’re already gone
I think I’m finally scared now
You think I’m weak
I think you’re wrong

“If you’re gone” Matchbox Twenty

When we left her house Mum pointed at the possum box in the tree and asked me if I knew who had put it there. “It was my Dad,” she said proudly. “It was a long time ago but he must have been quite old when he did it.”

Her dad died twenty years before Mum and Dad moved into that house. I’m pretty sure he never installed a possum box in his life, and he certainly didn’t install that one. On the way to the cafe she pointed to a bench that she keeps telling me her Dad used to sit on, but this time she had an elaborate story about how he helped them move in and then sat on that bench. It’s as though she’s papering over the holes in her memory with stories that never happened.

We had lunch. I ordered something I thought she would like, because she couldn’t make sense of the menu. Chris and Bruce, the cafe owners, know what she has anyway. They treat her like royalty – which is nothing unusual, it’s the way they treat all their customers. She kept fretting about whether she had enough money to pay for lunch. I showed her some photos and she remembered some people but not others. She must have told me 15 times over a half hour period that she had a dog called Toby when she was little. I smiled, nodded, died a little inside, and kept it together.

Then, when I went to pay, Chris quietly told me that Mum has been coming in every Sunday for some weeks now, looking to buy a paper and some chocolate. Chris was so sweet about it, he said he just takes her next door, to the general store, and makes sure she’s ok, but he and Bruce wanted me to know. We talked for a bit about how Mum is deteriorating, but because she won’t see a doctor or let anyone into the house there’s nothing we can do. Bruce said “as long as she’s happy and not distressed.” But of course she is distressed quite a lot of the time. I think she only ventures out of the house when she’s in a positive frame of mind.

And then Bruce said “and as long as she’s not causing you girls distress” and it broke me. It absolutely broke me. I joked that that was a much longer conversation that would need something stronger than tea, but when I got back to the table I had tears rolling down my cheeks.

Where do I even start? How can I tell him about the hysterical phone calls demanding to know where Dad is? How can I tell him about the tears when she is looking for her parents? How can I tell him about the way my heart shatters when she doesn’t know me? Or about the times she gets angry over things I can’t understand? How can I explain how desperately we want to get her help? How helpless and alone we feel, unable to access any support services, because we can’t even get her assessed? (We really can’t. Believe me. We have exhausted every avenue. Don’t even go there.)

Things with Mum are so hard. Others only see a fraction of the story, but there are so many people who look out for her, and for us. There is so much kindness woven through our trauma. So many hands waiting to catch us each time we stumble. But here and now, today, I’m not sure I can keep doing this. How many pieces can get torn out of your heart before it stops beating?

I’ll be over here, clinging to my slippers.