There are indeed scientific discoveries being made about dementia, every day, every moment, somewhere. When I did, a secret revealed itself - there is no one truth about dementia.

I discovered that, to survive, I had to unlearn the advice. I often left our interactions feeling I had failed. I attempted to put limits on her demands, but found the limits folded like tissue paper when confronted by the relentless reality of the consequences associated with not dealing with them. I tried agreeing with my mother’s delusions, as several suggested, which only led her to adopt additional, more challenging delusions. It always felt the writers and instructors were talking about someone else’s very different experience. The advice, intended to inspire and uplift, instead depressed me. The courses had titles like, “How to Deal with Delusional Behaviour,” and “Recognizing and Managing Four Different Kinds of Dementia.” The articles advised me that there were “Simple Ways to Help a Person Living with Dementia.” To cope with the chaos, I enrolled in courses and consumed magazine articles.

My elder brother hosted drunken revelries in the living room.

The condominium manager was in covert communication with Canada Pension. Random people - the plumber, the condominium manager, any government representative - were, she was certain, stealing from her, conspiring against her, staging bizarre events. She was forgetful, fretful and, in the latter stages, paranoid and delusional. She wanted my brothers and I there at all times, but was by no means interested in receiving our advice. She couldn’t take care of herself, neglected her hygiene, was increasingly at risk of falling - but she was bitterly opposed to Homecare and, at the same time, adamant that she remain at home. The challenges associated with offering support and care for a parent suffering from dementia emerge slowly at first, then rush at you all at once, shaking their fists. It proved to be more a chore than a comfort, and nothing was ever a replacement for my actual presence, which she never recalled, even when it was recorded in the book - even if it was only minutes ago. Mostly, she forgot about it until I arrived to remind her, then she would labour to draw together a few thoughts, and hastily put it aside. I had hoped my mother would draw comfort from it between visits, that it would provide her with something to do. By “didn’t work,” I mean, in comparison to other solutions, it was immensely successful. By “mixed success,” I mean it didn’t work.

The book held notes and drawings and was intended as a way for us to exchange stories back and forth. As my mother’s memory collapsed, we initiated something my mother and I called our “conversation book.”

A Revolta by Clem Martini