Photo by 50 Watts, via Flickr.
By Amy M. Collins, associate editor
As I watch my grandmother navigate the murky waters of her Alzheimer’s disease, it continues to surprise me that parts of her brain work at warp speed, while other parts seem to be completely defunct. For example, although she can’t remember what she’s done from one minute to the next, she can make up a lie to compensate for the memory loss in less than 30 seconds.
“Where did you get that new necklace, Grandma?” I recently asked at a family party. “Oh I bought it at the place where I work, you know, I type at a school,” she said, with certainty. Or when asked where she got a new sweater, she told my mother she went to the store. “How did you get there?” my mother asked. “I drove,” she said. “But you don’t have a car.” “Oh, well then I must have walked.”
She no longer remembers my name unless prodded, but she does remember that she has a cat in her room at the independent living center, and worries about it constantly. “I have to get back to take care of my cat,” she says when she visits us, becoming increasingly stressed the longer she’s away. Yet it’s hard for her to remember to care for herself, and she often forgets to shower or eat.
She still has a sense of humor, making fun of the “old” people at her facility and bragging about how great her own paintings are. She once complained about a photo of her that hangs in her independent living center’s entrance, together with photos of all the other residents. “Maybe it’s just the lighting, because nobody’s photo looks good,” my aunt said. “Yes, but the other residents really look like that,” my grandmother quipped.
But sometimes even her ability to laugh at things is heartbreaking. She recently called because she was worried about my grandfather—she couldn’t find him in the home. “Dad’s been dead for eight years,” my mother told her, worried at what my grandmother’s reaction might be in revisiting this particular pain. “Oh, well, then that explains it,” she said. “I was wondering how we both fit in a single bed!”
Another unexpected acuity is her ability to outwit her nurses. When it’s time for them to dispense her pills, she sometimes convinces them she’s already taken them. She’s also managed to sidestep nurses’ intervention in her diet. After my grandmother had gained weight over the past few months, the nurse we hired to keep an eye on her told the waiter at her facility not to give her any more ice cream after dinner or bacon for breakfast. While “in her right mind,” she would never have eaten these foods, even once denying my dying grandfather eggs because of “high cholesterol.” But the day after the nurse intervened with the waiter, we found out my grandmother had switched tables, got a new waiter, and got the bacon.
Recently AJN chose its annual Book of the Year awards. When it was over and the books had been judged, staff members were able to browse books they might be interested in. I picked The Alzheimer’s Caregiver Puzzle, by Patricia R. Callone and Connie Kudlacek. The book explains that in the early-to-mild stage of the disease, the temporal lobe of the brain is affected, with the changes attacking memory and language. But the frontal lobe is still intact, and as such so are social skills, reasoning, and judgment. I guess this explains why my grandmother can ask the same question repeatedly for 20 minutes, but can trick you into believing she hitchhiked to the local mall to get her hair done, when in reality she had it done at her facility.
As I read about the mechanisms behind the illness, I realize it’s just a disease—it has no personality, no vengeance. But somehow I’m still angry at it, and the way it seems to strike its victims so unfairly, in such contradictory ways, like a cruel joke.
She used to say to me: “I like it when you come to visit me, you seem like a nice guy. If you’re ever hungry when you come over, just go out to the kitchen and grab whatever you you can find—
MY HUSBAND won’t mind!”
Let us not forget; someday we will all have new, perfect bodies and we will see our loved ones again.
Amy,
I’m sorry to hear about your grandmother’s condition. My mum is doing a lot of volunteering with Alzheimer’s and dementia patients these days and I know she often finds it incredibly sad and moving, and she describes incidents of humour or clarity as you mention above.
She often says that one of the most moving things is the support given by the partner or carer and how that relationship remains strong.
Simon
My mother, too, has severe AD. She is completely dependent on her caregivers in the nursing home where she lives. She does not know her nine children and only occasionally recognizes her husband of 63 years. She tells stories that none of us can understand, aside from the occasional isolated word. She neither anticipates or remembers our visits with her. And as heartbreaking as the situation is, it is still possible to see her enjoying the moment. Her stories bring laughter to her face. Music is pleasurable. Holding hands is always nice for both of us. We find good where we can, but like one of the other commenters, my siblings and I live in fear of what lies ahead for us. Our mother’s three siblings died of AD, as did her mother. Dare we hope to escape the same fate?
It saddens me to read that others are experiencing the same emotions as me……………but I smiled all the way through, yeah! That is just like my mom….group hug !!
Excellent post. Unfortunately, I understand completely as my grandmother has advanced-stage Alzheimer’s. After my great-grandmother and now my grandmother, my mother is terrified her future (and ours) will be a repeat of the same cruel joke, one that we’ve already heard too many times.
All the best to you and yours.
Alzheimer’s Disease is as cruel as life gets. My mother know longer remembers me, wears clothes she would have quickly donated to the poor years ago, cannot eat without someone feeding her, no longer talks. I travel 350 miles each way every 6 weeks to see her for an hour and wish that things were different. God bless the health care providers that work in dementia facilities for the jobs they willingly and cheerfully due daily.