Covid, like grief, doesn’t necessarily have an end

When you suffer a shattering loss, there seems to be an expectation – almost a requirement sometimes – that your grief has an end date. That it is contained, and follows some kind of predictable, regular path, with widely understood scope and processes. If you’re lucky, an outpouring of kindness provides casseroles and flowers for a week or two, and then life goes back to normal. Except, for the bereft, it never actually does. New foundations must be built. New coping mechanisms created. A new life constructed out of the ruins of the old one, perhaps looking much the same, but irrevocably different. And grief, of course, never ends.

Eventually you learn to incorporate grief into your life such that you can, for the most part, carry on. There will always be times, though, when it crashes over you like a wave. Sometimes pulling you under, sometimes merely leaving you cold and shaken.

Obviously that’s intense grief. Some griefs are smaller – more transitory – though they do tend to accumulate, and trigger surges of the griefs that came before them.

There’s no objective calculation that tells you how you will experience any particular loss. For some, the death of a parent is little more than a relief. For others, a devastating blow. Sometimes a chance met stranger becomes a fundamental part of your life in moments, and their loss is devastating. There’s no equation that can tell you how close a person is to your core, how connected they are to your heart.

A month ago I finally caught covid, after dodging it through a combination of caution and luck for over two years. It turns out that covid is a lot like grief. Some will experience it sharply, but briefly, while others are shattered by it indefinitely. Still others barely even know they have it. And we still expect it to have an end date.

Vaccination helps reduce the severity, but there’s always a risk of ongoing effects, and there’s no known way of calculating who is at risk. You can be young and fit and suffer for years. You can be older and more sedentary and be over it in days.

Yet it feels as though we have developed a narrative for handling the idea that someone we care about has covid. We recognise that everyone’s experience will be different. We check in diligently for a week or so, but just as quarantine ends on day 7 (except it doesn’t, as some symptoms require you to remain in isolation, although few people seem to know that), so, too, does our care and concern. Just like grief, we require covid to have an end date. To stop worrying us. To stop being difficult.

We expect workers to return after 7 days. We expect students to be back in class. We expect all disruptions, and causes for concern, to be swept neatly under the carpet. Secure in our smug “Only old people die” story, which is both untrue and deeply dubious from an ethical standpoint, we look away from the auto immune disorders, cognitive dysfunction, and heart problems that we know are accumulating, and bury our heads in the sand.

Peek a boo, I can’t see you

Everything must be grand

Book a pee, you can’t see me

as long as I’ve got me ‘ed in the sand

Peek a boo, it may be true

there’s something in what you’ve said

But we’ve got enough troubles in everyday life.

I just bury me ‘ed.

The Ostrich, Flanders & Swann

Just like grief, or climate change, or any other complex and terrifying phenomenon, it’s much easier to believe it will just go away. We’ll get over it quickly, or solve it with technology, or it won’t happen to us. The trouble is that there’s no way of knowing who it will happen to, nor even what will happen. It’s entirely possible, indeed quite likely, that there will be long term effects of having had covid that we don’t even know about yet.

It’s much easier, and more comfortable, to look away. To pretend this is just another flu. To “go back to normal”, as though we’re not facing a threat of unknown magnitude. As though there will be no consequences. As though we’re safe.

Five weeks post infection, I know that’s not true for me. Like grief, covid has left a heavy footprint on my body. Who knows what bruises I’ll find in a week, a month, a year. Perhaps I’ll find that new foundations must be built. New coping mechanisms created. A new life constructed out of the ruins of the old one, perhaps looking much the same, but irrevocably different. Just like grief, it’s possible this will never end.

We can’t keep looking away.

Fix me

Grief is supposed to go away. It’s supposed to have a time limit. It is supposed to get better. And there are normal responses to grief, and carefully graded measurements for how much grief you should feel based on how well you knew someone, for how long, and how closely related you are.

The above paragraph, of course, is nonsense. But it’s surprisingly pervasive nonsense. It’s built into our systems. We have periods of mourning, carefully calibrated by relationship. My last employer specified 3 days off for the death of a close family member. Nothing else. No leave built into the system for attending the funeral of a friend, or a parent or child of a friend. Of course attending funerals was tacitly allowed, but there was no provision in the leave statutes for it.

3 days of grief for a close family member before returning to work is, of course, ludicrous. But so is no time off for a close friend. Or any friend, for that matter.

Because there are no rules about how death will affect you. I knew Jacky for less than a year, but I talked with her nearly every day, and she was hugely important to me. Can you measure that? Can you argue I should feel less because of the newness of our friendship? Or because after those first few days our relationship was exclusively online, which many people will tell you is not a real friendship.

Hey, there’s not a cloud in the sky
It’s as blue as your goodbye
And I thought that it would rain, on a day like today.

Wendy Mathews, The Day You Went Away

Yet I reached out to Jacky when things were tough at work. When I was worried about my kids. When I was proud of my kids. When they were driving me nuts. When I felt inadequate. When I felt excited. When I saw something I knew she’d love. Walking around San Francisco in November I shared all the gay from the unbearably fabulous Castro. We shared book and film recommendations. We shared my kids. We shared dreams for the future.

Jacky’s death blindsided me. On the weekend I decided maybe I needed counselling – which has helped me many times, in remarkable ways – but then I realised I was trying to fix it. I wanted to get over it. I want to stem the tears, stop the pain, to fill the hole. Maybe counselling would help, but it wouldn’t make it go away.

Grief doesn’t go away. It is woven into the fabric of who we are. Of our relationships. Of our lives. It’s in the sound of a passing motorbike. In the colours of a rainbow. In a snatch of music or a scene from a movie. It’s in a moment we should have shared. In a trip we were meant to take together. In an achievement she’d have loved. In a book that would have made her at least as angry as it’s making me.

So sometimes there’s nothing for it but to listen to the sad playlist and hug your friends. To hold your face up to the sun and feel the tears of rain, even though there’s not a cloud in the sky. Sometimes you just have to cry. And it hurts more than it feels like it should, but there is no “should” in grief. There’s only your broken heart.

 

Grieving together

Grief and I are not strangers, but what nobody tells you is that each fresh grief builds on the ones before. It’s painful, and cumulative. It comes in waves. Sometimes you feel almost normal and then you collapse under the latest tsunami of tears.

Dealing with each fresh grief brings every previous grief closer to the surface. Every scar opens a little. Every wound bleeds afresh. Each new love makes your heart grow, and each new grief makes the surface of that heart a little more raw, the nerves a little more sensitive.

I’ve seen grief described as an amputation, because you never get over it. You can’t just grow another limb, but you learn to live without it. Always aware of the loss, but getting on with life and learning to deal with it. But I think it’s more like a wound that never heals. Sometimes it’s not actively bleeding, but it’s always open. If something touches it, it will always hurt. You just get used to the pain and work around it, until something causes it to bleed again. Sometimes just a trickle, sometimes a flood of pain that it doesn’t seem possible to live through.

Too often we hide away and try not to cry in public. But all that does it make it harder for everyone else who grieves. There’s no shame in grief, no shame in tears. They show the depth of our love, and that’s something to be celebrated.

This time I’m crying in public. The day after I found out I met a friend in a cafe, and my grief was so raw that a waiter came up to me with a small packet of tissues. “I couldn’t help it, I thought you might need these.” Which, of course, made me cry more, but also in a weird way made me feel better – complete strangers can be a fountain of compassion when you need it.

Tangible compassion

I’m also posting more on social media. I crowd sourced a sad playlist, asking my friends to recommend their favourite sad songs, because I can’t face anything happy and bounce right now. This, too, brought me connection and solace.

It’s hard to know how to treat someone who is lost in their grief. They are so raw, in so much pain, that it can feel as though just touching them might hurt them. It can feel safer, more respectful to keep your distance and not intrude.

But grief is a terribly lonely feeling. My normal MO is to tell everyone everything. I reach out and connect compulsively. But grief tends to shrink me inside myself. It’s as though it severs the strings that connect me to the world. I curl up and disconnect, even while I crave connection and desperately need to be hugged.

So my advice is to reach out. Text. Make a playlist. Send an email. Do things that don’t demand a response, but that leave the door open to one. I’ve received emails, and messages just checking in. Letting me know people care. And it’s only day two, but I know my community has me in their hearts. It’s those messages that are keeping me afloat. I’m going to need those hearts close to me for some time yet.

I hope she knew how important she was to us. Irrationally, I worry that maybe she didn’t understand what she meant to us – as though that really matters now – but we loved her so much, relied on her so much, and I truly hope she knew.

To love, loss, and remembrance

It’s too late now to fret about things we should have said or done. All we can do is hug our loved ones and make sure they know how important they are to us. To reach out. To connect. And to remember.

I hate Christmas

I love Tim Minchin’s “White Wine in the Sun”, but it makes me incredibly melancholy, because the words are all about how much he loves to reconnect with his family, and how these are the people who will make his daughter feel safe as she grows up.

That’s not the way I recall my family Christmas. My Christmas was a time of emotional blackmail, shouting, and trauma. Every year it got worse. Every year I dreaded it.

That’s a thing of the past now. Mum’s dementia has progressed to the point that she doesn’t understand the concept of Christmas (or indeed relatives) at all. She is physically well cared for, and emotionally absent.

We’ll have a small family Christmas with my in-laws, and it will be low key and fine, but the ghost of Christmas past claws at my heart and I find it really hard to relax. The whole “peace on earth, goodwill to men” thing has a hard time being heard above the screaming inside my head.

I was in San Francisco for Thanksgiving this year, and I went for a walk in the morning, before visiting dear friends for lunch. I had walked in that neighbourhood the previous three days but Thanksgiving was special. People took the time to wish each other – and me, a perfect stranger – a happy thanksgiving. There was a sense of breathing deeply, and being kind to each other. For the first time in days the air was clear, and it seemed hearts were too.

Christmas here is like that. If you walk on Christmas morning you will see kids trying out new scooters and bikes, roller blades, remote controlled cars and kites. People wish each other a Merry Christmas, and there’s a kindness and compassion in the air that has otherwise felt particularly absent in 2018.

I am a big fan of compassion, but I tend to find it very difficult to be compassionate towards myself. I get frustrated with my Christmas angst, and rail against the tension that ruins my Christmas, and if I’m not careful, the Christmas of everyone around me. Every time I get grumpy I get grumpy about being grumpy, and that kind of thing gets out of control fast.

So this year I have a new plan. I’m going to listen to White Wine in the Sun, and I’m going to spend the time quietly contemplating all of the people who have made 2018 a delight for me. Although I have nominally been working alone, I have never felt so supported. I’ve made amazing new friends, done speaking tours, been to countless conferences, and both I and my work have been hugged at every turn.

New friends and old have supported me and my work in ways I never dreamed possible. I took a flying leap off a crazy high cliff last year, expecting to succeed or fail on my own merits. It never occurred to me that I might wind up crowd surfing my way into the future.

So if, like me, Christmas is hard for you, see if you can turn away from the trauma and contemplate the people who love and support you. Call them, text them, send them an email. Let them know how much you appreciate them. That’s my kind of gift – something to feel truly festive about.

Death drawn out

I know from painful, devastating experience that grief is an experience with a beginning but no end. But when the beginning is death, grief only starts once. Over time it attenuates. Ever present, but incorporated into your very being, it does not lessen, but becomes, at least, familiar.

When the beginning is dementia, though, grief starts afresh every day.

Every encounter is a new loss.

Every visit, death stares me in the face. Still breathing, heart beating, but nonetheless quite, quite dead.

I don’t know how to process this. There are no cards or flowers. No ceremonial send off, or celebration of life. There is no date that marks the transition from breath to grief. It happens every day.

Everything she was is gone. Her personality has leached from her brain like the colour leaving her hair. Her face is slack. Only her rage, once her defining feature, sparks occasionally like a dying circuit. A small flash of the malice that once powered her body, now it can’t get her out of her chair.

Her father lay slack in his bed for long months before finally dying, years after he last recognised his only child.

She still gets out of bed, but only to sit by the table, staring blankly ahead. How long until she no longer has the urge to rise? Will she die the way he did, a huddle of surprisingly small bones under a white sheet?

Does she suffer, I wonder? Is there enough left to feel pain, even grief of her own? She doesn’t know me when I visit. Does it matter to her that my visits are rare? That I can’t contain my grief, or my fear, enough to look her in the eye?

I can be brave. I can be strong. I can deal with loss. I’ve had to. But I don’t know how to deal with a loss that goes on forever. That I have carried for a decade and must carry still. I don’t know how to deal with this. I don’t know how anybody could.

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.

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.

 

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.

 

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.