...
They are alive inside. I bought my dad an iPod. He loved it. My mother hated it, wouldn't let him have another when the battery died... because he was too absorbed in it.... Bless Oliver Sacks anyway for stealing my idea.
I mention this because I just ran across this snippet somewhere:
My grandpa doesn’t remember how to eat. When my dad and I bring him lunch at his skilled nursing unit, he picks up his fork and examines it curiously. He holds it up to his head, ready to rake it through what’s left of his wispy white hair. My grandfather is 93 years old, and lately he has morphed into Ariel from The Little Mermaid, not a trace of recognition registering on his face as he takes in the everyday items around him with childlike wonder. Look at this stuff. Isn’t it neat? He stacks the strawberries on his plate into a pyramid and howls like a rabid coyote when he hears a nearby phone ring. The napkin tucked into the collar of his shirt finds its way to his head, an impromptu hat for a man who’d rather play cards with his grilled cheese than eat his grilled cheese.I swear to God I thought the girl who wrote it had to be twelve, at the oldest. She's thirty, or was at the time. At least, it seems, she knows she is lying. Her grandpa was right there, the same man he always was.
Loving someone with dementia is complicated, because it involves loving a person who is a different version of the person he once was.
Come to think of it, she has about as much insight as my mother does. Mom insisted that Dad had Alzheimer's because she said he couldn't recognize her much of the time. That is dead wrong. People with dementia, as opposed to Alzheimer's, stay them inside. They just lose the ability to get words out the right way. He couldn't address her the right way and she mistook that for lack of recognition. It was only that he couldn't get the name past his lips, and then couldn't even express that the name wouldn't come out, would go all befuddled searching his head for what had always been right there. This gave her the idea she could claim Alzheimer's and so not be expected to visit every day.
This sort of global aphasia remains intermittent, but gets worse as they go along. In the beginning they substitute the missing words for concepts close to them that still will flow out their mouths. The more startled or frightened or impatient this makes you, the less able they are to express it. Frequently they will only realize they said the wrong words from the ones they meant after they've said them. Sometimes they don't notice. But for the rest of their lives they are unable to prove anyone wrong. My father settled for telling everyone his wife left him... when he could get it out... and that was precisely right.
They lose their spacial awareness, their sense of direction. My father might never have needed a diaper if he hadn't lost the bathroom. He would jump up when he knew he had to pee, but immediately became lost. At first he could get there if you pointed in the right direction for him, but you couldn't always be there in time to set him straight and then after a while you had to kind of escort him because he would lose the direction again before he got there.
This woman, and my mother, were mystified, or just terrified and so lying, by the difficulty with implements and what to do with food, to know whose food it was in front of them. They both missed, or pretended to have missed, the deep pall of agony behind what looked to them to be childish wonder. No help. Just a nervous gaping and groping madly for an evasive maneuver. And, so unfairly, still able to get it.
My father always did much better when I could be with him. It wasn't so stressful for him. He knew I knew. And so he could relax and relate. My mother knew it. She resented it. She still does. She hasn't stopped being twelve for seventy years. And she's not going to turn thirteen and she's not going to stop being mad at me for knowing it... no matter what I do.
