Smiles and rage were pretty much the only reactions that my grandmother had until the very end. I used to talk to her in a positive tone of voice, with simple grammatical structures. I talked to her like an adult, not like she was a baby – something that seems denigrating to the patient. With my grandmother, it was better to avoid questions because she’d get blocked: information questions, or things like, “Do you know who I am?” or “How old are you?” or any sentence with the intonation of a question, such as, “Are you cold?” or “What food do you like the best?” were, for her, a huge challenge.
The only way to interact with her was to suggest games or something that would stimulate the senses.
The experience forced me to lose my sense of shame, of self-awareness, the fear of making a fool of myself, because I needed to exaggerate my expressiveness in order to communicate with her. Above all, however, it forced me to change my way of thinking: it’s been the most important thing to achieve, but it’s also been the most difficult. We all accept the limitations that a newborn baby has, and we understand that, as that baby grows, he or she will become more independent, right? Well, one simply has to remember that someone who has this kind of illness follows exactly the opposite steps, what is called “involution”. It’s not as if our loved one has suddenly decided not to eat, walk or talk: it’s simply that they’ve stopped knowing how to it. It’s that easy, and that complicated, at the same time.