The events of the morning seem unreal as I drive in a half trance through the streets of Dewitt, re-tracing the path of the funeral procession. I think back to the service this morning and how everyone talked of my grandmother the way that she “was” before her reality slipped away. Her caretaker spoke of how happy my grandmother seemed, and my dad commented that he’d rather be blissfully unaware of the world, at least being happy, in the last years of his life than being completely aware that his body was falling apart, living out the end of life in misery. But losing your memory to Alzheimer’s disease is not a matter of flicking off a switch, nor is the memory loss the end of the line.
Knowing what goes on inside the brain has been something biologists and doctors have been fascinated with for most of modern medical history. The functions of the regions and machinery within the brain are fairly well understood, though there are vast gaps to our knowledge, especially when things do not behave as they should.
When some of our 100 billion neurons are happy, they fire electrical impulses to one another and these impulses are coded and decoded by the brain to convey meaning. This gives you the recognition of someone’s face, or allows you to remember where you put your car keys, or how to walk or open your hand. It seems very magical, like putting a quarter into a vending machine and wondering whether or not gremlins are retrieving your soda for you, because you can’t quite see the mechanism. It happens, it works, but science remains a little unsure about all the steps in between when it comes to the mind. However, when everything is working the way it should, the messages get to where they’re going, you recognize your family members, you find your car keys.
But just like wires, neurons can wear out over time, and can be damaged by outside structures. Plaques and tangles of strange proteins begin to build up around cells as we age, and scientists think that this extra material can damage and eventually kill neurons. Everything we know about Alzheimer’s science has discovered only in the past fifteen years. What makes Alzheimer’s a mystery is that tangles and plaques are something that most people develop as they age, and are present in almost everyone. What is known is that the plaques are made of beta-amaloyd protein fragments. Like the gunky buildup found in car engines between the parts, these plaques form in between nerve cells and their gooey masses prevent messages from making it from one neuron to another. Tangles, on the other hand, actually form within the dying nerve cells and are made up of tau proteins. Combined in great numbers, these proteins are very good at systematically destroying the mind.
Piaget, Freud and Erikson, among many other educational theorists proposed stages for childhood through adult development of the mind. While each had their individual perspective, they shared the common need to separate development into distinct stages at lines that are marked by significant events. Like these developmental psychologists, doctors studying Alzheimer’s disease had a challenge in describing the disease’s progression. The proteins building up in the brain follow a predictable pattern of where and how much they accumulate, starting with higher learning areas and memory, and moving on until they finally choke out the neurons in the parts of the brain which control our bodies. As the neurons die, eventually the entire cortex shrinks and becomes riddled with holes, giving the tissue a spongy appearance characteristic of the disease. It is progressive and degenerative in every way. So researchers chose to describe stages as steps that a patient would follow, descending into the final oblivion of death at the end of the downward journey.
The first stage of Alzheimer’s is marked by no noticeable impairments to function. Fourteen years ago, my grandmother was standing in her kitchen, cooling freshly baked pies and draining linguine, finishing off the clam sauce, and checking on the small turkey in the oven that she had added to her traditional Italian thanksgiving only at the desperate request of my mother. My grandmother was the type of elderly Italian lady that was at ease when cooking, as most of my relatives are. Though she was handling several dishes at once, she never expressed distress, just went about what she knew she needed to do.
Often difficult to detect, the second stage is when the sufferer starts to realize that they’re beginning to have some kind of impairment, but since it doesn’t effect daily functioning, it is often ignored, denied or expertly hidden from doctors and loved ones. It is not until the third stage that these problems become apparent to others. One Sunday, my grandma burned her marinara sauce so badly that it was nearly inedible; she had forgotten how long it had been simmering. As an early adolescent, I remember being told not to mention the burnt taste to my grandma, so I’m fairly certain that my parents knew what was beginning to happen.
In the next year or two, my grandma began to call me Karen, her daughter’s name, by accident. She’d have trouble doing things she was in the habit of doing, like keeping score while bowling with her league. As these tasks became harder for her, she began to withdraw from family and friends, quitting the bowling league all together. When dates and times became difficult for her to remember, we bought her a clock that showed both in big font. But when she began to forget where she was going, her driver’s license was revoked. A year later, when she was unable to safely cook or take medication by herself, my family made the heart-wrenching decision to move her to a nursing home where she would be safer.
I remember standing in the doorway to my grandma’s room, watching my dad talk to his mother. I was in high school and this was one of the few times that I’d seen my grandmother after her disease had progressed further, into stages four and five, moderate to severe cognitive decline. She sat quietly on her bed, facing us, with very little spark in her eyes.
“Mary, it’s Tony.” I watch my dad’s eyes light up with hope.
“Hi Tony.” My grandmother looks at my dad and puts on a plastic smile. My dad’s eyes dim slightly. I see him slowly exhale.
“Mary, its your son, Tony”
“Oh, hi Tony.” Pause. Grandma looks in my direction, then back at my dad.
“Who’s this?” I begin to realize I’m gone from her mind, too.
“That’s your granddaughter,” my dad says in a forced optimistic tone.
“Oh.”
Twelve years after her diagnosis, she passed away peacefully at my Aunt Janet’s home at the age of ninety. Like others at the funeral, the sadness was accented with a feeling of relief. The past twelve years have felt like an extended grieving process for everyone around her. As the twinkle of awareness slowly faded from her eyes, we all said our goodbyes in our own ways and she reached the last step of the disease surrounded by people that she didn’t know anymore.
Thinking back to my father’s comment, I realize that I’m more scared of losing my mind this way than losing my physical abilities. Knowing that you will eventually have nothing left, and that you’ll feel it slipping away is a terrifying thought to me, and I can only imagine what it is like for the more than five million people in the U.S. that are suffering from the disease.
Doctors are working on developing a test for Alzheimer’s so that it can be detected earlier, but there is still no cure an only a rudimentary understanding of how the disease operates. The test is based on finding a genetic marker that indicates predisposition to the disease. It’s not conclusive, and only a portion of people with the gene develop the illness, but everyone who has the illness has the gene. As I continue to drive I wonder if I want to know my fate. Since there’s no cure, it wouldn’t mean that I’d get treatment sooner, or have a better survival rate similar to something like breast cancer. It would just mean that I’d live with the knowledge of my brain’s inevitable disintegration. And in this instance, I would agree with my dad, that I’d rather be left in the dark.
