When Elda first started showing signs of Alzheimer’s she was very mistrustful about everyone, including her family. She was worried that people were stealing from her and expressed it verbally. She would hide her pocketbook so well it would take us sometimes an hour to find it. She also would go through her drawers and closets and reorganize and move everything around, hiding things she felt were valuable. My sister, who lived with her at the time, started to slowly clear out of her bathroom and bedroom objects that she might hurt herself with, such as: detergents to clean and heavy things. My sister took out the confusion.

She also would wake up at all hours, get dressed and try to leave the house. We had to put locks in the upper corners of the doors (where she could not reach) so that if we did not wake up, she could not get out of the house! In those moments there was no convincing her to stay, or to return to bed. She felt she had somewhere to go and something very important to do. Those times were difficult and very emotional.

While I can only speak of my experience, in the beginning it was difficult not to feed into Elda’s behavior. We are a large family and my mother’s relationship is different with each of her children. When I arrived, she lived with and near my sisters; each one of them had her at different times of the day, they have very different personalities and the time of the day influenced things that could or could not be done. Consequently, my mother’s behavior was obviously different with each of them. Understanding the level of my mother’s disease was hard because everyone had their own opinion, and we were all pretty inflexible. Mistrust leaked into all of our minds and because of a serious lack of communication and unity we all began to fight. Accepting our mother’s disease and its progression and her behaviors was one of the most difficult times in our lives as a family, in my opinion.

Elda being a very sensitive woman sensed this distention and it only accelerate her fears, preoccupation and disease. I am by no means putting blame on any of us, no one knows or can understand how to act and what to do when someone you love and has been the point of stability in your life, now becomes completely dependent on you, and you don’t know if you have the capacity to handle it. My mother had to slowly give up her independence and control, letting my sisters (at the time) take over her bills and drive her around. She hated it and would express her anger about not being able to go and do what she wanted however, she understood it too.

I believe in some sense the beginning stages are the worst because there is the self-realization that your mind is failing and that you may arrive at a point that you are completely dependent on someone. That fear is real, and my mother never wanted to feel like a burden to anyone. That is why it has become so very important to me to not allow her to feel like a burden, now that she no longer remembers.

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playlist: Nervousness and other emotions/Nervosismo e altre emozioni Alzheimers