Reflecting on how Alzheimer’s turned a granddaughter into a caregiver

By Siyeda Mahmoud | gargoyle@flagler.edu

Looking into her eyes I could tell that she no longer had any recollection of who I was. I reached out to touch her hand as I had done many times before. I thought I was doing it to comfort her, but in reality I was probably trying to comfort myself. It’s almost a childlike gesture that we do when we are in need of some form of security; it’s the power of human touch.

The realization of knowing that it would never be the same again was a hard pill to swallow.

I grew up in a home where both of my parents had full time jobs. So it was lucky that my grandparents lived in a cottage on our property. Not a day went by that I didn’t see my grandmother. She was just as involved in my life as my own mother. She was the one who taught me how to tie my shoes, helped me learn how to swim and to ride a bike. She would read me all of my favorite stories and comfort me when I was sick. I can remember her house always smelling like fresh baked bread or homemade pie.

Every single thing about her was comforting.

I would get off the school bus to see my grandmother waiting to collect me. We would watch films, play games, cook, and she always sat with me to help me with my homework. I don’t think she ever doubted me for a second. Growing up I had to be tested for ADD several times. I struggled badly with reading and math, and was put in a program that was supposed to help me. No matter how defeated I felt, she always championed me and told me that when I was ready it would click.

She was the toughest and most resilient person I have ever known, besides my mother of course. It’s like they are the same person.

When I was 11 things started to change. My grandmother was a diabetic and one year on my birthday she had a fit. She had forgotten who anyone was and locked herself in the bedroom. All I remember is that I was told to go inside the house. Things started to get worse when my grandmother was diagnosed with Alzheimer’s disease. At that age I didn’t really know what it meant, or that there was no cure for it. In the age that we live in, it seemed like medicine could cure anything. I found myself having extreme optimism.

Surely the women that I grew up with would beat this.

As the stages of the disease progressed I could tell that she was changing. I remember sitting with her one day and she was talking about people I had never heard of. The way she was saying it was like they were in the room with us. Then a minute later it was like it had never happened. As nervous as I felt, I didn’t want to say anything. At the time my feeling was that if I pretended nothing was changing, then it would all be OK.

It got to the point where she could no longer take care of herself. Within a year she had become a shadow of herself. There were times when I stayed home from school to watch her. It went from her watching me as I grew up to me watching her. I became her caregiver.

There were times when I was alone with her that I would check to see if she was still breathing. Scared that anytime she closed her eyes they wouldn’t open again. I had started to become too much for my grandfather to handle. We had tried the home nursing, but it was too expensive. The decision was made to put her into a nursing home where she could have 24/7 professional care. I was 14 at the time. I remember the day when she was taken away. I thought to myself there must be a part of her deep inside that knows something isn’t right. The fact that she was leaving the place where she made all these wonderful memories over the years was heart breaking. Knowing she would most likely never come back was too much too think about.

I didn’t visit her often after she left. My mom would go every Saturday and always pleaded with me to come with her. But it was too hard for me to see her there. I wanted to preserve her as the strong loving women I had grown up with. Reflecting back, not going to visit her every week is the biggest regret of my life. When I did go I would sit with her and tell her how my life was. I would tell her stories about us, always saying “remember this” or “remember when that happened” knowing, of course, that she wouldn’t.

The last time I saw her she was lying in her bed. She looked so small to me. I held onto her hand tightly and stared into her eyes. No matter how she had changed, she still had the same eyes I remember staring into as a child.

I was surprised at how they still comforted me.

When it was time to leave I found myself hesitating at the door. I looked back at her one last time, smiled and told her, “I love you.” All these years later, not a day goes by that she doesn’t pop into my mind. I wish she could see how far I’ve come in my life, and I can’t help but think she would be proud. She is the reason I am who I am, and I can’t thank her enough for everything she gave me.