Content warning: Death and grief
It’s muggy today in the way that overcast summer days often are, the air thick with it. I really want to put my hair up, get it off my neck, it is somehow not soft anymore, but scratchy, straw-like. I don’t know why. But I had it blow-dried at the hairdresser yesterday and they do some kind of magic that once undone can’t be recaptured, so it sits uncomfortable on the skin exposed by the summer dress I’m wearing.
My dad died.
I cry as I write that and the reason I don’t write about it or talk about it or think about it is because it makes me cry.
I look instead out at the world from my seat on this blue-grey couch, out into the dull day, the breeze moving the branches of the grandfather of hoop pines I can see from my window, a couple walking their dog, a young man running on the path. Later, I will go and look at the fairy door someone has built in the base of the tree, garlands of flowers surround it, children stop in wonder. It is a complete delight. Not only that it is there, but knowing that someone created it with love and kindness for strangers.
It was a short time from ‘old man living happily at home’ to his death. July it was, just before my birthday, that he rang me from his house 100 kms away.
“I’m not feeling so good,” he says.
In that generation this is what bad things sound like: A calm understatement where I know he resisted calling until he was in real trouble.
I get an ambulance to him in barely suppressed panic, keep him on the phone, hear the paramedics arrive and being unable to get into the house, trying not to lose my shit as he attempts to shout ‘come in!’ over and over, and it comes out feebly, barely a whisper. He doesn’t realise that the door is locked. He is able, finally, to get to the door and open it. I hear them talking to him, asking him questions he can’t answer, they don’t know I’m on the phone, he’s incapable of telling them anything. He’s incoherent, almost unresponsive by now.
He comes back out of hospital after a couple of weeks with no definitive cause of ‘his turn’, though the results were similar to a stroke and goodness knows he had chronic heart and kidney issues for years, so pinpointing ‘a cause’ is tricky. We fight hard to have him released, hospital is no good for anyone, and he was getting smaller and smaller stuck in that bed in that institution.
He is not the same, mentally or physically, when I carefully help him shuffle back into his home after that stint in hospital. I care for him then, move into his house, optimistically thinking he just needs a little support to get back on track and he will be right as rain, I will go back home, everything will be normal.
This is not how these things work.
Practical things. Because I need to force myself to do something, anything. I fixed my dining room chairs, cheap ones, with seats that had all but collapsed. New wood for support, figuring out how to attach it best to the frame, and then gluing the collapsed seats back on top. I made myself clean the flat that I was away from for weeks, months. My orchid is here in my peripheral vision, her stunning white flowers bloomed in my absence, proudly showing them off for me still.
It dawns slowly, when I am living there with him, the realisation that he isn’t okay. Watching this fiercely smart and stubborn man struggle to remember simple things that used to be second nature. His puzzled look when he tries to use the TV remote. Seeing him grab at walls as he loses his balance just walking down the hallway.
Facing the fact that he can no longer navigate the routines of life is so hard. While I’m trying to support him in continuing to live alone, I realise we are not going to get there. It is clear to me sooner than it’s clear to him.
Worse than that is how it diminishes him. That 6’4 childhood hero whose role was rooted in that of husband and father, of stalwart protector and provider. Asking for help hurts him, and I can see that and I know that, and I struggle so hard to offer it without taking away pieces of his dignity.
It is unbearable.
I’m finding it hard to come back to myself. I’m not sure why exactly, though grief is a tricky emotion that doesn’t present as it should in our minds, moving through neat little stages so you can tick each box in turn.
There is much to do in sorting out his estate, I have a literal suitcase full of his paperwork here in my home now. I am the executrix, a term my lawyer used and which makes me smile. I find solace in it, the doing. A busy-ness, research, forms, processes, the tracking of everything. Spreadsheets! I find myself reaching for these ‘things to do to get some feeling of doing something’, I don’t even know.
Trying to find somewhere to live near him so I can care for him full time is difficult. I’m not staying in his house long term, I can’t, for my own mental health. I am already struggling with the constant worry and anxiety and hyper vigilance to keep him safe and I need a space to retreat to and regroup. He is still mobile, doesn’t need personal care, he just can no longer navigate the normal life things. That’s okay, I can do that for him.
I have not yet found a place so I’m still living in his house when he has another ‘turn’, same as the previous, some general ‘unwellness’ where he loses himself, slumps into a chair, loses track of what’s going on. He is barely able to remain conscious while I’m trying to talk to him. Except this time I’m home, there is no waiting, the ambulance is there within 10 minutes.
Back at pilates, the regulars there have missed me. They are a lovely bunch of older women who all think I’m much younger than I am which is always a complete delight to me. One of them asks me where I’ve been all this time, I am vague but she sees my face, she knows already. She is a sweetheart, I like to have her beside me in classes because she pays attention so I don’t have to, we cutely co-ordinate our movements, and she quietly bitches to me about whoever annoyed her this week. She runs interference for me when other kind souls want to inquire about my whereabouts.
“She’s back, that’s all that matters!” she says, definitively shutting down any more questions.
My sister comes down, as she did when he was in hospital before. We are together now, in our childhood home, visiting our father in hospital every day, he is very unwell. Her method of coping is endlessly worrying at minutiae, I try hard to let her, to say nothing. It’s exhausting.
My method of coping is to get online to do research on all the things, to feel like I know what’s going on. I know she feels somewhat abandoned by this.
It’s tricky to handle our collective anxiety and distress.
There is a life happening here and I’m struggling to get a handle back on it. I clean the bathroom, mop the kitchen, try and talk myself into the daily yoga I was doing in the before times.
Today is the first time I’ve felt like writing at all in months. And this is what came out. Had to come out, I suppose. I feel like I’m doing grief wrong. I know that makes no sense. But I don’t feel right.
The hospital rings me. We’ve just been there to visit, my sister and I. We are taking a walk along the waterfront near our childhood home, it is pretty here, mangroves, views out to the bay islands. We are trying not to constantly and endlessly verbalise our worries.
I can’t even remember now what they said to me, but they asked if I could come in. They didn’t know how to handle him, he was distressed. I could, of course. They asked if I could stay the night. Yes to that also, of course.
I spend the night with him, neither of us get any sleep. He is manic, paranoid, delusional, hallucinating, belligerent, terrified, talking talking talking for hours and hours. It’s horrifying, traumatising, for both of us. I have never seen a hint of this before, not ever. Elaborately detailed scenarios that scare him are real in his head, absolute belief. He’s been kidnapped and ‘they’ are keeping him in a military installation in another city and plotting terrible things. He’s in his house and ‘they’ have broken in without his permission, moved walls, redecorated, they are all in on it.
I can see the edge of it wavering, that hazy place where he knows and wants to believe I’m not part of the terribleness that ‘they’ are doing, but he isn’t quite sure.
“Do you trust me, Dad? I won’t let anything happen to you. I’ll look after you, I promise.”
He looks doubtful at me, how can I not be part of the conspiracy when I’m standing right there, in the middle of it.
“How did you find me?” he asks suspiciously, but he doesn’t listen to the answer.
I sit by his bed, just holding his hand, whispering reassurances and fervently wishing he would fall asleep, he must be so tired, but his eyes dart around the room at things I can’t see, he mumbles to himself. At one point he starts to laugh.
“The man, he’s behind you,” he says.
The hair on the back of my neck stands up and he laughs and laughs.
My force of will always overrides whatever is going on in my head, even if I have to shout at myself to make it happen. It’s a given. That force is quiet now, its silence scares me, if I’m honest.
On a more removed note, it’s interesting to me that we never know how people experience the world in their own heads. We can’t. Of course we can’t. I imagine that therapists and psychologists get the most insight, both through training and through having so many glimpses into people’s heads.
It has occurred to me often that I don’t function like everyone else. Do we all think that? I think we do, special snowflakes innit?
Made myself laugh. I’m calling that a win for right now :).
He is in hospital for nearly three weeks. He improves from that hellish night to harmless occasional hallucinations. From not knowing where he is to complaining about hospital food. I’ve never been happier to hear him being a grouchy old bastard. He loses weight, a lot of weight for that short time, but he can get out of bed with little assistance, the physio introduces him to a walker which he accepts without protest, he can manage a walk down the corridor and is improving with that. His memory is shot and he has a lot of trouble finding words, but he reaches for them, he does.
He says to me, when he gets worse and he knows he is getting worse, when he struggles to find the things he wants in his brain, “I have a hole in my head and things keep falling out.”
“I know Dad, don’t you worry, I’ll make sure you’re alright.”
I don’t know how many times in how many ways my heart can break, but apparently the answer is ‘all the ways plus one more’.
This is long, I know. It is hard to chronicle such things, and I can’t (I can’t!) break it into digestible chunks as if I’m serving courses at a banquet. It is an excess, a glut, it’s not supposed to be easy to digest. You have to binge on it and then feel slightly ill, like you might throw up.
My sister and I recalibrate our idea of what ‘he’s okay’ looks like.
It is no longer anything close to ‘he can live alone with close support’, it’s ‘he’s able to walk with an aid, he’s processing information, he understands what you say to him if you don’t overwhelm him, he can communicate basic things’. We know he can no longer live safely at home on his own, that he needs the kind of care that I’m wholly unequipped to give.
We are adamant that he stay in his home even though in our heart of hearts, we don’t really think it’s sustainable. But we know he will deteriorate quickly if he goes into some kind of care facility, we know he doesn’t want that, will never want that. So we do what we do and find a way to bring him home. We line up a full time live-in carer, a physio, an occupational therapist, we buy a thousand dollars worth of mobility and home safety aids, we apply for various support services, we make detailed plans.
Covid hit (again) and the hospital closes to visitors. We’d been going in every day. That’s no longer possible. We’ve already put everything in place, we are expecting him to come home the following week. It’s okay, it’s only a few days away.
Since there’s no visiting, I take the opportunity to travel back to my own place, to have some space to myself, to breathe.
I got a counsellor for the first time in my life. I sought one when the months of endless worry and stress and fear became too much. I couldn’t turn it off, I wasn’t sleeping, my brain was too full of all the bad decisions I was making and the catastrophising that I was doing and the distress of knowing that my Dad was on the cusp of the exact situation he had feared he would end up in. That noise was relentless and I didn’t have any coping mechanisms left that could alleviate any of it.
I’m 100kms away when I get a call from his primary care consultant. We had been waiting for her to come back from a break to see him and declare him well enough to come home, so I’m happy to hear from her.
“Hi! How are you?! How was your holiday?” is the cheery start of that conversation.
The end of it is, “You’d better come now.”
She had seen him that morning and he was fine, his new version of fine: Awake, alert, happy to see her.
Then his heart went ‘nope’.
By the time I get to the hospital, within about an hour and a half of that call, he’s dead.
My sister was closer and arrived before he died and I’m grateful for that, that he didn’t die alone in a hospital bed where no-one had been to visit him for days because we couldn’t.
Even though it wasn’t sudden in the bigger picture, it was sudden in the minutiae. We were ready to bring him home, we were expecting to bring him home.
It was a shock that perhaps shouldn’t have been a shock.
He was blessed, I think, to die like this. Suddenly and quietly, and at a point where his life was no longer going to be his own. His greatest fear was deteriorating mentally and physically, and still being alive, being kept alive, because the body being alive is valued even when there is no life left for the person living in it.
I lean hard into thinking about it like that not just because it’s true, but because I am filled with guilt for being relieved, and that feeling of relief is not just for him, it’s for me also.
Relieved of the terrifying glimpse I got of where he was going to end up, not knowing when, but knowing it was coming. Relieved of having to make decisions that would be ‘for his own good’ and that he would hate and feel as betrayal. Relieved of seeing his distress in sliding down into helplessness and the loss of dignity that he would bear along with it.
I am not okay and can’t quite figure out why. Grief, of course, and I know grief manifests in different ways, but I don’t know what my brain is doing with it. I have cried writing this and I somehow assume that’s good for me because I haven’t cried much. That’s what grief is supposed to look like, right? You cry. You go through stages. Then you come out the other side.
But I’m not really doing that. I’m just full of the same fear and anxiety I had before he died, as if the anticipation of terribleness-to-come is something my brain can’t let go of. Or maybe it is just riding that wave and pretending it’s grief. I don’t know. But it’s exhausting.
So, it’s muggy today in the way that overcast summer days often are. I’m still here.