Dementia isn’t just any disease, and writing about it is probably the hardest thing I’ve ever done

I’m about two thirds through my new novel, disease, and I think some of you already know by now that it is a story about living with Alzheimer’s. I’ve had personal experiences with this disease, as both my mother and several other relatives have died from it. But particularly following my mother has given me profound insights into the inner workings of this wretched disease that eats people’s brains from the inside out.

I’m not going to give away the plot of the book here, besides, knowing my own brain’s inner workings that would be utterly futile. I am, after all, only about two thirds through, and lots can happen between now and the end. I decided early on that I would write from my protagonist’s point of view, and I think if you know anything about dementia, that makes it pretty clear why it is so challenging.

My mother giving me a bath. This was decades before the disease took her. Photo: private

As the disease progresses, memories are lost, people no longer have the capacity to do certain things. My mom for instance wasn’t able to iron clothing any more, she’d just forgotten the different steps needed to e.g. iron a shirt. The same with cooking, something my mom had done with great pride (and excelled at) for decades. It goes without saying that my mom suffered from that, immensely, although, and that makes my mom’s case unusual, we never talked to her about it. This has to do with very specific circumstances in our family, but by the time my mother was finally and officially diagnosed, it was too late. She would not have accepted the diagnosis.

People often say that Alzheimer’s is not the patient’s disease, but the disease of the loved ones. And those surrounding Alzheimer patients often tend to undo much of the tell-tales. My father would for instance take mom out to eat to smooth over the fact that she was no longer able to cook. That way, it never became a “thing”, never got awkward. Mom could simply claim she didn’t have to cook any more. And similar tactics were used in a number of areas. And even we children were accomplices. How do you tell your mother she’s basically “a nut job”? Well, you don’t. You don’t tell anybody they’re “crazy” or “nuts”, no matter how incoherent they are, how little sense their statements make. You just don’t, and it is probably easier to tell a stranger they’re behaving strangely than your own mother…

I have lots of material. At the same time, I’m an author of fiction, not the author of an Alzheimer biography. And the challenge lies primarily in the decision I made early on, to write this story from the patient’s perspective. “Aaah!” I hear you think. And you’re right. This does complicate matters, particularly if I were to take it to stage III and the end thereof, where the patient ultimately succumbs to the disease, loses the ability to speak, the ability of their bodily functions until ultimately, the body shuts down. Needless to say, this is not the fate of all Alzheimer’s patients. Many pass away from various other illnesses and afflictions before that happens.

But, and this is really the challenging part. How do you write the challenges of things like aphasia, or losing your vocabulary, how do you write that which the character no longer remembers?

Well, here’s how I do it, and since I’m not entirely finished with the novel, there may still be changes that need to be made, both to the overall approach and to details. In the first draft, I’ll just write the story as it comes to mind. It’s how I’ve always worked and it’s how I’ll finish this one, too. I need to trust my instincts, my artistic talent (or lack thereof, if you believe the trolls online). Once that first draft is done, and I hope to be able to finish that first draft by the end of this month, I’ll have roughly two months to edit the story, and I think this time it’ll need some heavy editing, making sure the language is simplified as I move along in the disease’s timeline. I may even have to build in some inconsistencies, even what to a reader may appear to be plot holes. Because such is the disease. It’s going to be an interesting novel, for sure, not to mention quite the challenge for The Queen of Unconventional Happy Endings.

Speaking of queens… We are about halfway through the Big Gay Fiction Giveaway:

Go, claim your copy now and discover new characters to love and cherish!

Have you been to the website to claim your Instafreebie copy of all those amazing books that are available this week? I’m participating with my most important work to date, The Fallen Angels of Karnataka, a novel about child abuse and trafficking, and I’ve already had almost one thousand claims, so I’m very pleased. Not bad for such a deep novel next to all the sexy and fluffy romances. Have you gotten your copy yet? You have four more days! Don’t miss this.

Have a great weekend, I sure hope I do, particularly if the weather stays as warm and sunny as it’s been these past twenty-four hours. If you like my writing, feel free to subscribe to my monthly newsletter (top right on this page) with competitions and hopefully interesting reading, or to interact with me on TwitterFacebookYouTube, and/or Instagram. I’m also gratefully accepting donations from fans (see top right on the page).