Communication ended up being the most difficult part. I have to admit that it was really difficult for me to put myself in her place and internalize that, as the disease progressed, she moved backwards in terms of knowledge, language and behaviour. I never did understand that what she could do one day, with total normalcy, she wouldn’t know how to do the next. I rebelled a few times, and I even yelled at her, thinking that if I said something in a louder voice, she’d understand me better, when nothing could be further from the truth – the impact was actually the opposite.
The new ways of communicating compelled me to arm myself with patience; and through songs and hand games that she still remembered, I managed to enter her world.
It was curious that the last thing my mother forgot about were the choruses of certain music – Christmas carols, for example. She didn’t remember the lyrics, but she remembered the tunes, sung in her own special way. And as far as arts and crafts were concerned, if you tried to get her to do something with her hands, instead of explaining what to do, it was much better to let her take the initiative, and correct her when she didn’t do something properly.
As the disease got worse, my mother’s character also changed, but for the better. She had always been good, but like anyone who’s very methodical, she was domineering and very possessive, and those of us at home found her to be sometimes even selfish. Nonetheless, after, she became very docile and affectionate; she loved to give kisses and laugh at things she thought of or made up.
In the beginning of the illness, she got along well with all the people she met because she learned a way of behaving, always the same and that always worked. When people asked her, “How are you doing?” she responded, “Very well,” asked the person the same thing she’d been asked, and added: “…how we’ve always appreciated each other, isn’t it true?”. That gave the other speaker the impression that she knew who she was speaking to. She kept on doing that until she stopped speaking and she didn’t recognize me. When she’d go for an afternoon with a caretaker who was with us for five years, afterwards I’d run into people who would tell me, “Did you know that your mother knew who I was, and she asked after everybody!” I’d smile to myself, because she had them all convinced. That was the mechanism that she created to hide her illness, which is pretty clever, when you stop to think about it.
My mother ended giving all of us kisses and thanking us, with the way she looked at us, all of the nice things we did.
There’s no doubt at all that her illness set my life on fire in a very intense way, because I’m an only child and although I’ve always had my wife’s support and help, I was the one who was in charge of the problems with caregivers, doctors, and holidays – it always came down to me.
I wouldn’t wish any of this on anyone, but if you’ve got to go through it, the best thing is to face it with determination and with the most positive outlook you can manage. It’s something that marks you and makes you value even the smallest things, like the sun coming up every morning, every morning that you recognize your family, and knowing what day it is, and you feel immense gratitude to God.
I knew before what, for me, was the most valuable thing, but now I know for sure: the love of all your family.