It is Alzheimer’s awareness month, along with any number of other disease processes and statements. I focus on Alzheimer’s because other than a paralytic stroke, I think that this disease scares me. Why? Because I can’t imagine the fear and terror of slowly losing your ability to remember anything short term. To know that you once we highly functioning, to being trapped in a world you no longer recognize.
I see it almost everyday in my office. Patients brought in with their caregivers (usually a daughter or son) who don’t understand why their caregiver keeps telling them what to do, why they can’t drive, and any other numerous complaints about some function of their life that for safety reasons their loved one has stopped them from doing. Things that we take for granted, going for a walk, running to the store. And they haven’t done it out of cruelty but out of love.
And I see the fatigue and tireness in the eyes of the caregiver, as their parent is now yelling at them for being so bossy. As they calmly explain “Mom, we haven’t had that cat in 10 years.” Or the fear in their eyes when the patient asks for a motorized scooter so they can go where they want to go.
It is heartbreaking, and it is personal. And it is very real. I can’t remember when I really started noticing my grandmother’s memory loss. It is a slow insidious process. It is not that one day they woke up and couldn’t find their keys- I can never find mine, and no I am not experiencing dementia. But I remember when I realized that the process was really taking hold in my grandmother. I had gone home for the funeral of my aunt (not her child). She and my grandfather (dad’s parents) had come to the funeral to support my mom (it was her sister). I had brought my son, who was not yet a year old (so this would be about 8 and a half or 9 years ago). She remembered me, and I am sure that she realized that the baby was mine, but there was a statement she made that stuck out to me, and I tucked it away.
“Surely I can sit here with him and he won’t mind. I always seem to be in the way anymore.”
In of itself, not too major of a statement, but it was. My grandmother was not someone I had ever thought of as in the way. But at that point she was worried about it, and then when added to this comment
“This is your baby right?”
That is when I knew my kids would never know the grandmother I knew. The one I went to visit almost weekly since I was eight years old, and they moved close enough to visit. Well until I went to college anyway. But she was aware that her mind was leaving, and it made her sad.
Since then I have seen her when I have gone back to visit my parents. And each time, what my parents see in real time I see in big leaps and jumps in decline. I remember the Christmas where she sat in the corner, no longer actively preparing food, or taking part in the conversation. I remember when I went back for graduating from an online MBA class, and at the dinner, re-introducing her to my children, and her asking the same four questions over and over. I have seen my grandfather order for her in the restaurant, and watched him coach her as they walk in the door who everyone is, and where they are.
But last year, I saw that the coaching cannot hide it anymore. The questions have stopped other then the polite “How are you” and “Look how big they are” She sits they quietly at dinner, in what I imagine is her own private torture. She remembers my dad, most of the time. But he says, now he is not sure that she really remembers him or if it is because grandpa has coached her and let her know when he is coming. Though there are moments of clarity, they are fewer and farther between.
This disease is sad and disheartening. There are only tests that suggest it, with the definitive diagnosis only being available on autopsy. But for the patient and the family, it is very real. There are medications that slow the progression, but they don’t stop it, no matter how much we would like it to. Instead we try to keep them as safe as possible, and try to remember how they were with love.