Most people think that the hardest part of Alzheimers is watching someone you love deteriorate before your eyes. Alzheimer’s systematically takes away each quality that you love about that person, ticking each element off each piece of their character off like it’s a check list, one by one, until there is nothing left but the hollow shell of the person they once were.
With my experience, I found that my biggest Alzheimer’s heart break wasn’t with the patient, but with the care taker.
My grandmother was never an easy woman. Growing up, she made it very clear that she disapproved of my mother marrying someone of another race, constantly making obvious and cruel comments towards my Asian father and me and my mixed-race sisters. When I was 8, she came to stay with us and I woke up sick in the middle of the night. As I lay on the floor curled up in a ball, she came across me on her way to the bathroom, passed over and muttered that I disgusted her. My dad walked in moments later to me throwing up on the floor and my grandmother walking behind him, furiously screaming racial slurs as he cleaned up my vomit and rubbed my back telling me it was going to be OK. I remember her cruel words and her complete disregard for the effects they had on my father and her lack of empathy for the sick child on the floor. I never spoke to her again after that night.
Two years later she was diagnosed with Alzheimers. While this may have explained some things, it never justified to me anything she had said or done to my father and me and my sisters.
My mother stepped up on behalf of the entire family to take care of her. We made an attempt of having her stay with us, hired a live in nurse and when that didn’t work, made a try with an assisted living home. But my grandmother became more aggressive as her mental health began to deteriorate. She would instigate both verbal and physical fights with the other residents and was eventually asked to leave the home, putting my mother in another difficult situation.
It was recommended that my grandmother be placed in a mental health facility. Watching my mother escort her mother into a padded cell filled me with fury towards my grandmother, the seeming victim in this situation. My mother had tears running down her face as she left the facility, she couldn’t even speak. I was angry towards my grandmother for making it so difficult for us to help her, angry at her for her racist attitude towards our family, but most of all for the pain she was causing my mother.
It took a year, but my grandmother eventually calmed down enough to be put in another assisted living home for patients in a similar state. The aggression stopped, but it still proved difficult for my mother and I still refused to go see her. I’d sometimes go with my mom to the home and wait in the car while she would go in to see her. The one time I caved was the last time I saw my grandmother.
It was mother’s day and my mom asked me to see my grandmother as a present to her, so I did. I went to soccer practice in the morning and my mother picked me up to go to the home. My grandmother was sitting at a table completely vacant, starring at the wall with a full tray of food in front of her. She looked like the shell of a human being.
My mother looked pale as she sat down and calmly said “Hi mom.” I had never seen her speak to her so calmly–they usually only yelled at each other when my grandmother had been well. My grandmother looked over at my mom and said, quite plainly, “Where’s your brother?” I could see by the look on my mother’s face that this wasn’t the first time that my mother had made this request. Throughout our visit that day, my grandmother continued to berate my mother that was only interrupted with requests to see her bother. My mother’s brother was a dead beat who had not been to visit and we found out later had been quietly siphoning off money from her accounts and stealing from her estate to sell items for cash.
I completely snapped. Not only was this woman draining my mother of so many things she once was, but she couldn’t even acknowledge all of the efforts she had put in to helping her.
I cried on the drive home and told my mother how I couldn’t understand why she kept it up, why she kept going back to this woman who only seemed to bring her grief. She told me it was her mother, this was her duty and that she was a very sick woman who couldn’t help what was happening to her. I admired my mother for her perseverance, for constantly putting her mother before her through out her entire illness. I wished I had had that type of empathy, but I felt so protective towards my mother. To me, this disease plagued her the most and I felt an overwhelming sense of duty to protect her from any additional harm.
Alzheimer’s was not a disease that I saw in my grandmother, it was something I saw in my mother. I saw it in the way that it occupied all her time and that she suddenly had no time for her kids or her marriage. I saw it in the way where she would come home her eyes puffy and exhausted from another visit. I saw my mother devote everything she had to fighting a disease that refused to quit, that was persistent in infiltrating every aspect of her life and that in the end, won.
I hate to say it but when I received the news that my grandmother had died, I had forgotten that she had been alive. My mother had been through so much over the years as a result of dealing with this illness, that I had found myself focusing on my own mother’s care more than anything else. Making sure that she ate right, that she was sleeping at night, that she was taking time to take care of her needs. When my grandmother passed, I felt a sense of relief, like my mother’s health and character would finally come back to her. Luckily, it did.
I cant imagine what my grandmother must have gone through, how it must have felt to feel your mind slowly slipping away. To see faces that you think are familiar but you cant quite place it. To feel thrown by people’s familiarity with you and your incredible unfamiliarity with them. The anger you feel and you don’t know why. But for me, the real victim was my mother. We always talk about the Alzheimer’s patient, how the patient feels what they must be going through, but what about the care taker?
I write this piece not as a smear on Alzheimer’s patient, but as an ode to those bed side occupants. Those care takers that against all the odds, stay by these patients–people like my mother. I write this to remember those unsung heroes, those who aren’t the doctors but the one’s who in a lot of ways matter the most to fight this disease. While she might have been a difficult person, we know that my grandmother died with her daughter by her side, and isn’t that all we can ask for when the end is near? To be surrounded by your loved ones. We all deserve that and while I regret that I wasn’t more empathetic while she was alive, I am relieved that in all this I didn’t lose my mother and she didn’t lose me.