Chapter 6: Inheritance

Draft #1

Hello,

Welcome to Chapter 6 of I Wish I Could Tell Mum.

If you’re finding me for the first time…Welcome!

Regular readers will know that this is a book about the emotions and experiences of having a parent with dementia. I’m writing in public because I want to make it accessible to everyone. If you’d 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…Inheritance

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Inheritance

So much of the conversation about dementia focuses on the present. The urgent. The here and now. What does Mum need today, this week or this month?

The unpredictability of the disease forces an anchoring in the short-ish term, mostly.

Then there are the quiet moments. Awake and alone in the middle of the night. Nothing but the sound of random, uncontrollable thoughts that bounce around, daring us to consider a different horizon. Taunting us with questions of what might happen in the future.

Some of those questions are about Mum. How quickly will she decline? Which of the array of possible symptoms will ultimately present themselves? When? Will she forget who we are? How cruel will her version of this awful disease be?

Then, there’s the other dark hole. The hole that no one wants to speak of.

The hole in which the quietest, most terrifying internal voice whispers, ‘Will it happen to me?’

Will this be the gene that determines my future? Is my fate pre-ordained? And, if not me, my siblings?

None of us has a say in the traits we inherit. There’s no takeaway menu of options to select and reject. There’s a genetic lottery, and the prize is an indivisible package deal we receive at birth that stays with us forever. We may never know the implications of the package in its entirety.

That’s the irony of inheritance. It is impossible to separate the good DNA from that which threatens our future.

From the time we’re born, the conversation about our inheritance begins. We’re constantly reminded of our origin in one way or another.

‘Gosh, you look like your Mum.’

It starts with the physical characteristics. The colour of our hair and skin. The thickness of our hair. Whether it’s curly or straight. The colour and shape of our eyes. Our height. The way we smile. The way we stand. Our body shape. Even the size and shape of our hands and feet.

As we grow, the comparisons of physicality and movement begin. How we walk. Whether we have rhythm or hand-eye coordination.

Throughout our school days, our strengths and preferences are inevitably compared.

‘Your Mum was good at maths too.’

‘You get your baking skills from your Grandma.

Sometimes the comparison is contrarian, but there nonetheless.

‘I don’t know where you get it from.”

These are the stamps of belonging. They create a space in the world that is uniquely ours. But they don’t come with any quality assurance or guarantee. We are all given a DNA package and left to navigate the good and the bad. The known and the unknown.

Ben, 42

From the time I can remember, the first thing I heard from anyone who knew my parents was “Wow, you look like your Dad”. I always knew where I came from. It was the thing people said, and as much as I used to shrug my shoulders, trying to appear indifferent, secretly I loved it. I idolised Dad, and people thinking I was like him was a badge of honour, which I carried silently inside me.

As I got older, my resemblance to Dad remained, but something new emerged. People started to notice how I was like Mum. I’ve got her hands, or more accurately, we both have her Dad’s hands. Pa had a gift for woodwork. I still use the desk he made for me when I was about 12. Mum and I both have his long fingers. Mum put hers to good use playing the piano. Mine were pretty useful on the rugby pitch, but playing music was never really my thing.

People tell me that my laugh reminds them of Mum, too. I don’t hear it, but I’ve been told too many times to ignore it. Mum doesn’t laugh so much anymore. I miss hearing it. I didn’t realise how much it set the tone for our house until it was gone. It’s like her laugh was a catalyst for all 3 of us. I think subconsciously, because I sound like her, I’ve been trying to fill the gap. But it doesn’t work. Not for me and not for Dad.

When I think about Mum losing her laugh, something that was so much a part of her, I’m ashamed to admit that I’m scared about what it could mean for me. I feel like I’ve spent all of this time trying to figure out who I am and how I want to be. Just as I’m getting to the point where I feel good and settled about all of that, I get smacked in the face with the prospect of some or all of it being taken away from me. I don’t know when, and I don’t know how much. It’s this sense of doom that I can’t shake. The feeling that out of nowhere, I’m going to get sideswiped by a Mack truck that’s gone through a red light at 120kmh. It doesn’t matter how much I look around me or check my mirrors before moving forward; there’s nothing that will stop the truck from hitting me if that’s my fate.

Sometimes I think about what I could do if I had the power to wish this away. Just wave the magic wand and make myself different. If I looked and sounded different, and I didn’t laugh like my Mum, maybe, just maybe, I wouldn’t worry so much about what might happen to me. In my darkest moments, that feels like something I want to do, but when I really think about it, I realise that it would be giving up a huge part of who I am. And giving up parts of Mum, too.

I haven’t shared this with Dad or with anyone else. It feels like tempting fate, that saying it out loud might make it happen. I know that probably sounds dumb, but it seems safer to leave the thoughts inside my head. I’ll bet Dad’s thought about it, but I can’t see the point in talking about it with him. We both know there’s a genuine possibility that it could happen to me, but there’s nothing we can do about it. Even if it does, we don’t know what I’ll keep or lose.

Donna, 57

Every time I look at my kids, I see our family history right there in front of me. Both our sons are the spitting image of my husband, Peter. They talk like him. Walk like him, too. Then there’s our daughter. Look at her from one angle and she’s Peter’s Mum. Then she turns her head and smiles, and she’s me...which means she looks exactly like my Mum.

The family resemblance was always a comfort. Until it wasn’t. The ability to see ourselves in each other created bonds, a kind of safety net that I’m not sure any of us could explain. Invisible, unbreakable connective tissue that meant we knew we were all part of the same thing. Now that interconnectedness is the problem. I’d love to be able to hang on to all the good bits, that sense of togetherness and just snap off all the illness and fear and let it break away. Imagine being able to let that go. It would be amazing, but it’s not my reality. It’s not that easy.

Now, the things that used to give me comfort trigger questions. Questions I’m not sure I’d want the answers to if I could get them. Like “Will it happen to me too?”, “Will I be a burden on my kids?” and even worse “, Will it happen to them?” I know I can’t get the answers, and I don’t know if I would want them even if I could get them. I just wish I could turn off the part of my brain that keeps asking.

Heather, 65

I’m standing, looking at all of the family photos on my living room wall. So many moments captured in our family history. Some I’m not sure whether I actually remember or it’s that I have been told the story so many times, it feels like I was there. I used to walk by the photo wall, barely noticing it, but since Mum’s been gone, I find myself looking, really looking at them, more often. I don’t know exactly what I’m looking for. Maybe, deep down, I’m looking for clues that I missed. Something that meant we could have helped Mum sooner.

I added some of the photos from Mum’s place to my wall. They’re faded now. The room where she hung them got direct sunlight, and it definitely shows. The old photo paper hasn’t held the colour, but it feels important to keep them as part of our story. They tell the stories of our family history.

When new people come to the house, they often stop to look at the photos. Sometimes they ask me questions about the people in them and the timeline of the generations. They can see baby photos that are clearly from 2 or even 3 different decades, yet the babies look similar enough to make them wonder if it’s the same person. The most common questions are about photos that are actually Mum, me and my much younger cousin Bianca. Photos of the 3 of us as babies and even toddlers would be hard to distinguish if it wasn’t for the picture quality and clothing styles.

I look at the photos of Mum, especially the ones where she is around the age that I am now. Were there any signs of her disease then? Did we miss something? It’s so hard to explain the feeling of looking at the wall and feeling so connected to the people and moments in each of the pictures, but at the same time wanting to turn my back on the sadness and the fear. I want to close my eyes and make the whole thing disappear. Then I feel guilty. It’s awful, but I can’t help but think about whether it’s going to happen to me, too. Or whether it’s already happening.

Ben, Donna, and Heather are all living under the weight of ‘what might happen’. All of their inheritance cues, like being told they are ‘just like their Mum’, are constant reminders of the possibility that they will be like their Mum in every way. That they might suffer the same fate.

Each of them ponders the uncertainty in their own way, yet they are united in the desire to protect those around them from the hard conversations that acknowledge it. They are silent in their fear, keeping it privately housed in its dark hole. Beyond protecting others, there is a sense of guilt or even shame that they wish to keep hidden. Guilt that, rather than dealing with the certainty of what is, they are partly consumed with what might be.

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

I really struggled with how to end this chapter. To me, it feels abrupt, but at the same time, there’s no easy solution to the challenges raised, and it would be flippant to try to wrap things up neatly when they’re not neat.

I’d love to know what you think!

I’m also keen to understand your thoughts on questions like:

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

2. Are there perspectives missing?

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

I really struggled with how to end this chapter. To me it feels abrupy

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.