It is Sunday dinner, a time when most people are making memories with friends and family. It's a time I knew as a child, for sitting at the dining room table beside my 'Nana', sharing special grandmother-granddaughter secrets. Today I am sitting beside her again, but now I am watching as she tries to eat spaghetti, most of it falling from her mouth, like a child trying to gross out a friend. But this is no joke. I can barely watch. But I know I can't run away from her and I know I will witness many more such moments. In fact, I will experience them, in one degree or another, every Saturday and Sunday for as long as my grandmother is doing this well. Yes, this actually is a good day. She has ventured out of her home and she is eager to eat. You see, my grandmother has what the doctors call Alzheimer's Disease and what I call the slow and painful disappearance of my Nana.
As I try to clean the spaghetti stains from her clothes, I am reminded of my childhood when she would take me to "The City". I would dress in my best clothes and white gloves. I remember my grandmother would look so sophisticated in her fashionable outfit, her beautiful red hair in a perfect bun, and her air of confidence. We would lunch with the 'other ladies' in the Tea Room and I would be so proud as she sat across from me. How could that wonderful woman now be a cause of embarrassment to me?
My thoughts are brought to an abrupt halt. She is making those snorting noises again! I quickly search my mind for something to ask her so she will start talking and stop making those sounds. I ask her a question about her childhood (she is able to recall things from her youth but cannot remember much within the last 40 years). She begins to recite the same story, word for word, which I have heard a hundred times before. I let my mind drift as I know she will ramble for quite a long time. I start to think back on how I came to take care of this woman who always took care of me.
Looking back, I can see there were early signs of the disease that went unnoticed. They were little things at first: forgetting where she put her money, forgetting she had already bought her Christmas presents, saying she needed to buy a green shirt when she had just done it last week. Then her personality began to change. She began to distrust everyone around her. She insisted her oldest and dearest friends were talking behind her back and accused family members of stealing from her. She began clutching her purse close to her from the moment she arose until she fell asleep. It was evident that something was wrong.
She was taken to a doctor whom she refused to speak to or even acknowledge. He was the first to utter the diagnosis, Alzheimer's Disease, but most of us had secretly guessed at it. There were others, however, who had not kept up with their visits and hadn't seen the changes in her, who believed and still believe, that she isn't "that bad". Perhaps they are merely in a state of denial, a stage we were told that most all victims' families go through. I am thankful there were some of us who quickly passed through this stage, or my grandmother would have been denied the help she so desperately needed.
The most pressing problem we needed to face was to be sure she was not a danger to herself. We contacted a home health agency and were quickly assigned an aide for Mondays through Fridays. My grandmother, of course, didn't trust her and insisted she didn't want anyone checking up on her. When we told her the aide was just a companion to take her out for meals and rides, she was much more receptive. Within a few weeks the aide became, and still is, her most trusted confidant.
The situation was not as easy with the weekends. We saw several aides come and go due to my grandmother's hostile attitude. When she began to refuse to even open the door for them, it was evident we needed to find a new solution. Being that I was the only family member that both lived close to her and she trusted, all eyes turned toward me. I was reluctant, but she had always done so much for me. Could this be my way to repay her? I offered to give it a try. That was over a year ago.
It has not been an easy year. First, there was the difficult transition I needed to make from thinking of her as a woman I needed to respect and obey, to knowing her as a child-like stranger who I needed to be cared for. Then there was the realization that those who I had hoped would help did not become involved. They did not want to deal with her in that state, so they just stayed away. There was a lot of anger and depression that went along with these realizations. I forced myself to push past those feelings. My grandmother needed me and I was determined to be there for her.
I think stress has been the hardest part of all. It might be easier if everything stayed at a constant level and you could get used to it, but as the disease progresses, and she worsens, so does the stress. I try not to look ahead. Besides, it seems irrational to look to the future. She could stay the way she is for quite a long time, or she could deteriorate so quickly that she would have to be put into a nursing home. Or, since she is 90, she could be taken from us forever tomorrow.
My thoughts are interrupted by an unusual sound -- silence. My grandmother has suddenly stopped talking and gone into one of her trancelike episodes. There she sits, her eyes glassy, looking nowhere, with an innocent smile on her face. What is she thinking? Is she remembering a happier time before this dreaded disease? Or is she in a world of her own making, someplace where there is no disease that robs you of your precious memories? Wherever she is right now, she is happy. I leave her there to enjoy and be at peace, until we are both forced to return to reality.