Safe From the Mayhem
A little bit of googling and I began my basic understanding of what causes Alzheimer’s disease . . .
“Scientists are not absolutely sure what causes cell death and tissue loss in the Alzheimer’s brain, but plaques and tangles are prime suspects. (https://www.alz.org/braintour/plaques_tangles.asp)
- The transport system (in the brain) is organized in orderly parallel strands somewhat like railroad tracks. Food molecules, cell parts and other key materials travel along the “tracks.”
- A protein called tau (rhymes with wow) helps the tracks stay straight.
- Tau collapses into twisted strands called tangles.
- The tracks can no longer stay straight. They fall apart and disintegrate.
- Tangles destroy a vital cell transport system made of proteins.
- Nutrients and other essential supplies can no longer move through the cells, which eventually die.”(http://www.alz.org/braintour/tangles.asp)
As one who avoided all science classes in college and managed to graduate with Anthropology 11 fulfilling the science requirement for a Sociology degree, I actually can get my mind around these few lines of explanation. I can picture what that looks like.
Realizing that it’s happening in my mother’s brain though, breaks me a bit. How can it be her? What happened that caused the plaques and tangles to form in her wise, sweet, kind mind? Diet Coke? Balance bars? Pretty much zero exercise?
But this is the mystery of Alzheimer’s . . . apparently, no one knows. Why is it her brain cells and tissues are dying? Where did the plaque come from? The tangles? Will the tracks ever straighten?
(A friend came the other day to take her on a walk. As they were leaving the friend asked, “Carolyn, do you need any sunscreen?” And I said, “Donna, skin cancer is the least of our worries!” We all got a good chuckle out of that.)
I have run out of ways to use the word, weird.
People ask how things are going and the only thing I can come up with is, weird. Things are weird. Very weird. And then I go searching my inner thesaurus and cannot seem to find another word.
So, things are weird. That’s how they’re going.
There’s a saying in the Alzheimer’s community: If you know one person with Alzheimer’s . . . You know one person with Alzheimer’s.
Every person diagnosed with this cognitive memory disorder is different. Their progress is different, their symptoms are different, their reactions to medication, clinical studies, exercise, diet is. all. different. So what’s crazy about that is that there are very few ways we can help one another — weird. Right?
But something that was helpful was reading Still Alice, by Lisa Genova. The book was published in 2007, and a movie was made in 2015 starring Julianne Moore, who won the Oscar that year for her portrayal of Alice.
These paragraphs toward the end of the book made me cry. (pgs. 230-231)
“You’re so beautiful,” said Alice. “I’m so afraid of looking at you and not knowing who you are.” (She’s talking to her youngest daughter, Lydia.)
“I think that even if you don’t know who I am someday, you’ll still know that I love you.”
“What if I see you, and I don’t know that you’re my daughter, and I don’t know that you love me?”
“Then I’ll tell you that I do, and you’ll believe me.”
Alice liked that. But will I always love her? Does my love for her reside in my head or my heart? The scientist in her believed that emotion resulted from complex limbic brain circuitry, circuitry that was for her, at this very moment, trapped in the trenches of a battle in which there would be no survivors. The mother in her believed that the love she had for her daughter was safe from the mayhem of her mind, because it lived in her heart.
“Safe from the mayhem of her mind, because it lived in her heart.”
That’s helpful and hopeful for me, for my mom, for our family.
No matter what happens here, there are things — emotions, love, spirit — that might be safe from the battle, from the mayhem, that will survive this onslaught of tangles and plaques.
So, life goes on. It’s goes on weirdly, but it goes on. We talk and laugh and do jigsaw puzzles. We clean out drawers and cabinets filled with cards and pens and watercolor paints from the 70’s. We organize meals and rides and visits from friends.
And when people ask me how it’s going, I say, Weird.
When people ask my mom how it’s going, she says, Good enough.
Weird and good enough.
It’s a very strange season indeed.
“We, in the early stages of Alzheimer’s, are not yet utterly incompetent. We are not without language or opinions that matter or extended periods of lucidity. Yet we are not competent enough to be trusted with many of the demands and responsibilities of our former lives. We feel like we are neither here nor there, like some crazy Dr. Seuss character in a bizarre land. It’s a very lonely and frustrating place to be.” (Still Alice, Lisa Genova, p. 251)