Chapter 8: Identity

Draft #1

Hello there!

Thanks so much to everyone who shared their encouragement and feedback on Chapter 7: Relief earlier this month. It really spurred me on and gave me the lift that has carried me forward to deliver this latest instalment for you.

Chapter 8 of I Wish I Could Tell Mum is called Identity.

Your feedback has been integral in shaping this chapter. I’ve maintained the single voice, without the authorial framing that I used in earlier chapters. I feel like that this combination has enabled me to write a deeper and hopefully richer reflection - but I’ll let you tell me if that’s the case or not.

If you’re new here and would like to start from the beginning, here is the Introduction. If you’d like to look at all the previous chapters in one place, you can access all the chapters here.

Please note that this contains material that is difficult for some readers.

Now, on to the topic at hand…Identity.

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Ben, 42

I’ve noticed that I describe myself differently depending on where I am and who I’m with. It’s usually relative to others. I guess it helps others know where to put me. And it helps me remember where I fit. Sometimes I’m Nick’s mate or Sarah’s boss. Sometimes I’m a member of Kath’s team or Andrew’s tennis partner.

Often, especially when I’m up in Newcastle, I’m Gail and Brian’s son.

There’s a movie that plays in my mind when I say that. It’s from when I was a kid. I’m about 8 years old, and Mum and Dad are rushing to get ‘stuff’ done around the house so they can both come to my Little Athletics meet. I remember sitting on the couch, excited, frustrated, impatient, because I was ready to leave, but they weren’t. The drive there took forever. Cut to the meet. I'm on the start line, Mum in the makeshift grandstand waving like a mad woman. I told my mates I hated it, but I didn’t. I came second-last that day. Based on the sound of their cheering and the hugs I got at the end, you would have thought I’d won Olympic gold. That’s how it felt to be the centre of their universe. I’m not sure if that’s an only-child thing. Maybe I was just especially lucky.

I think about that feeling a lot these days. I miss it. Everything has flipped. Now, I organise my life around them. I realised it had happened when Nick and Simon asked me to go on a boys’ golf trip. A long, long weekend. Five days in Tassie. Playing Barnbougle. Drinking Pinot. It sounded perfect. And then my heart sank. I felt like I couldn’t go. Not at that moment. I didn’t want to abandon Mum and Dad. Not that they have asked me to hang around or give anything up.

I realise now that they need me more than I need them. Practically, I mean, maybe not emotionally. Or maybe both…It’s a big thing. It feels like being run over by a Mac truck. I knew it the instant it happened. A conversation with Dad about whether Mum needed to visit the doctor or if we could just call up for a new prescription. It’s something she would have decided. Or, they would have decided without me. Mum was there, but didn’t have a clue what we were talking about. Dad looked completely bamboozled, like I’d asked him to map the human genome. I could see it in his eyes. And immediately, I felt a drop in the pit of my stomach. I would have to be part of these decisions from now on.

Now that I know it, it feels like a weight I can’t put down. It’s like I’ve suddenly put on 10kg, and everything I’m doing takes more effort and puts a bigger burden on my body. Ironically, I’ve actually lost weight but feel heavier. There’s a new gravity that’s put them at the centre of things. I’ve lost my place at the centre. I feel kinda childish admitting it, but it’s true. I suppose it happens eventually, no matter how your parents age, but it feels like Mum’s dementia supercharged the swap for me. But it’s more than role swapping. It changed how they see me. It changed how I see myself. I hate both of those changes. I don’t blame Mum or Dad, but I do resent that the disease has put us in this position. Not that I’d ever admit it to them. They don’t deserve that, and it’s not who they raised me to be.

Mum knew all my stories. She knew a version of me that no one else did. The way I became me. The successes and failures. The scraped knees and the broken hearts. The ribbons and medals. She was there for all of it. Dad knows a version, too, of course. But his is different. I’m not saying that one is better than the other. I’m sure I’d feel the same way if it were him who was sick instead of her. But it isn’t, so here we are. The irreplaceable, unconditional ‘Mum’s version’ of me is lost. Mum’s version of me is the one I try to live up to, and it’s also the one I look for when my confidence gets dented. Seeing myself through her endlessly positive lens always helps me bounce back. I don’t know what I will do without it.

It’s a really strange sensation…this isolating feeling like I’ve lost both of them, even though my parents are right there in front of me. It’s more than isolation. I’ve lost Mum to the disease, and I’ve lost Dad to the need to care for Mum. It’s profound, the sense of losing the person who knew you first. Even if they aren’t the person who knows you best now, at one point, they did. I know that lots of people don’t have the same relationship with their parents that I do. Or did. I wonder how they deal with it…

I feel disconnected, untethered somehow. I don’t know what it will be like when she’s physically gone. This feels unbearable, and, as her disease inevitably continues to progress, I have to imagine that it only gets worse for all of us. As we lose more of Mum, the grief expands. Dad and I can see the toll on each other. It’s there, but unspoken when we look in each other’s eyes.

There were things that Dad and I used to talk about all the time. His fishing. My tennis. The footy. Whatever was happening in my team at work. Dad always seemed to be able to see around corners. He would tell me how he thought a tough situation would play out and what he thought I should do. Without knowing them, he recognised the characters and their behaviours like he’d seen it all before (which he probably had). He was almost always right. I don’t bother him with that stuff anymore. Our conversations are all about what Mum needs and which one of us is going to take care of it. Other than that, he just seems too tired to think about anything else. I don’t want to bother him.

You know that feeling when you see something, and it hits you hard. Bang. Out of nowhere. That happened to me the other day. On the train on the way to work. Mindlessly scrolling through Insta. Right there in front of me. A question I can’t let go of…” Who am I if I’m not seen through my mother’s eyes?’ I don’t know the answer. I don’t want to think about it, but the question just keeps hanging there in the back of my mind, reminding me that at some point I’m going to have to come up with an answer. Sometimes I think part of me is scared that I won’t like the answer I come up with. Other times, I’m more afraid that I will like it.

So that’s where I am. Sort of. She still sees me. She seems to sense that I am familiar, but she doesn’t know it’s me. She doesn’t connect what she sees today with all the versions of me she’s known for the 42 years of my life. So she doesn’t really see me. I think she thinks I’m some nice relative who has popped in on the way through to somewhere unknown.

I’m still me, but it feels like a part of me is missing. I used to try to fill in the gaps, to explain who I am and tell stories from the past. Even a “Hi Mum, it’s me, Ben” seemed to leave her feeling more confused, and me only more disheartened. Now I tell her stories from my week. Articles I’ve read. Podcasts I’ve listened to. How my tennis game went. It’s easier that way, for both of us, I hope. I keep showing up for her because that’s what she did for me. That’s the version of me that I want to be. Need to be. For her. For Dad. For me. Just once, I wish she’d react like the old her. I keep looking for a glimmer that she’s in there, but it never happens. It’s like I’ve lost her, and in losing her, I’ve lost me too.

There’s a blurring of who I am. I’m not who I used to be. I don’t feel free to make decisions for myself and my life. I’m suspended somewhere between my life and theirs. I feel like all my free time should be spent with them or doing something for them. I can’t remember the last time I did something fun that felt genuinely carefree. I feel guilty if I spend time doing anything fun, even though I know I need some downtime and that Mum wouldn’t want me to give up everything. If Mum knew about the number of work events I’ve missed, she’d be so mad. And when I do make it, I spend the entire time with one eye on the phone in case they need something. It’s not much fun.

I haven’t had the heart to tell them that Liz broke up with me because I wasn’t around enough (or at least that was the excuse she used). For a while, I thought we could really be something, but Liz couldn’t deal with the amount of time I was spending up in Newcastle. On one hand, I don’t blame her. I wasn’t around much. On the other hand, maybe it was a lucky escape. Liz’s relationship with her family is complicated, so maybe she couldn’t cope with how important Mum and Dad are to me. Who knows, maybe I’m just telling myself that to feel better. I don’t have the energy for dating apps or the time to hang out in bars. Occasionally, a friend tries to set me up on a blind date, but that just feels too hard. I don’t have anything fun to talk about, and it’s not like anyone is beating on my door, so the chances of meeting someone new are slim to none for now. I don’t want to think about what would have to happen before that changes.

My mate Simon rang the other day. He knew I’d be in the car on the way up to Newy and figured I’d have time to chat. He’s known Mum since our Uni days, so there’s a lot he doesn’t have to ask about, he just knows. That’s much easier for me than when newer friends ask me about what’s happening. It takes so much energy to try to put everything together for them in a way that feels genuine, but doesn’t overload them with details or make me look like I have no life. Simon asks about how I’m doing and then shuts up and lets me talk. Depending on how I’m feeling at the time, my answer can vary from “I’m fine” to “I have no idea” to “I have to tell you what happened yesterday”. I usually end up feeling a little better and sometimes hear myself say things out loud that I hadn’t realised before. I started talking to him about the things I miss from my old life, like our regular Thursday nights at the pub or even just feeling like I had done something, anything that sounded like a good answer when someone asks “what have you been up to?”. It made me realise just how torn I feel between my old life and where I am now. Simon can read me pretty well. He said, “If I were in your shoes, I reckon I’d be pretty angry, but you just sound sad”.

The truth is, I’m both. But even with Simon, I’m not sure I’m ready to admit it. Being sad feels like something I can handle. And something that other people can handle too. It’s what they expect in a situation like mine. Anger feels like a runaway train. Once I let it out of the station, it could show up anywhere, anytime, and it might end up directed at people who don’t deserve it. I don’t want to say or do anything that I can’t take back. So, even though I don’t want to lie to my friend, I agree with Simon and change the subject. It’s not who I want to be, but it’s all I can do. Perhaps that’s the part of me that got lost with Mum.

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Your thoughts and reactions are invaluable as I endeavour to reflect the reality of having a parent with dementia.

I’d love to know what you think!

1. Does this portrayal feel authentic to experiences you’ve witnessed or lived?

2. Which moments resonated most strongly with you, and why?

3. Is there something relating to identity that is missing from this story

I welcome your comments, whether public or private. Your public comments help open up the conversation, but please be mindful that this may be very difficult material for some readers.

Thank you.