I’m the lucky recipient of a two-year-old grandson. In the busyness of his learning to talk, he repeats sentences. And repeats. And repeats. Last week, we discussed how we should ask the ice cream truck to stop — over and over and over again. My handsome grandson is as insistent with his repeating as was my beautiful mother-in-law, who also had difficulty retaining immediate information and who also worked very hard at communicating.
With both experiences now under my belt, I now see no difference between a very young language learner and an elderly language forgetter.
Both want to communicate and both work very, very hard at the process. Of course, here is where I want to remind you again that I’m not a scientist, nor a doctor, nor a clinician who works with Alzheimer’s patients, nor one who works with any other kind of patient in a professional capacity. I’m only a person who has had the opportunity to observe both the very young and the very old as they struggle toward language development and continued communication.
Repeating, it seems to me, is part of both the natural learning and unlearning process.
Now is where I ask myself: Can I buckle together the notion of learning with unlearning? Am I not as tolerant of an elderly person struggling to retain language as I am with a two-year-old struggling to learn language?
Is there really a difference … other than one is very small and one is adult-sized?
On Sundays we would sit side-by-side on a blue couch, our hands bundled together, our foreheads touching in intimate conversation. For two or three hours, we would chat aimlessly … or rather, I would listen while she wandered in and out of conversation. Back and forth through time, she would go. Furrowing her brow with the strain of remembering. Smiling brightly when she would come to the successful conclusion to a tale of her past.
Usually, there was one single thread that would engage her thoughts and loop circuitously during the course of our visits together. She would tell me her story and, once told, she would lapse into silence for a while. Then she would tell me the story … again.
Sometimes she remembered me, often I was a friendly stranger stopping by for “a spell.” Whether she knew me or not, she always took hold of my hands and pressed her head toward mine. Then she would tell her story and I would listen like a child begging for it to be told, “just one more time.” We were generous with each other that way. Her with telling, me with listening. Over and over. Storyteller. Listener.
On those occasions when she forgot me, only a momentary puzzlement would cross her face when I called her, Mom. I was her daughter-in-law and her love for family — even for late-comers like me — was boundless, energetic and uncommon. If I was bold enough to call her, Mom, then I was okay in her book.
I suspected, though, that whether I felt like family or stranger, it was of no concern. I was a visitor who, for those few Sunday hours, meant relief to the unrelenting loneliness that rides the back of every Alzheimer’s patient. The occasion of company was welcome relief. The hands of another person — ANY other person — meant blissful companionship and conversation.
Goodbyes always produced a brief spring of tears, soothed only by solemn promises to be back the following week. When that next Sunday came, she was always surprised to have company, proclaiming that it had been “forever” since our last visit.
For a person with memory loss, every day contains the repetition of new joys, fresh losses. Over and over again. The only constant seems to be a heavy and abiding loneliness. There was nothing I could do for my mother-in-law that could soothe her chronic sense of isolation, but for a time … for a blessed brief time … we sat side-by-side on a blue couch, holding hands and touching foreheads while she talked of her distant past and tightly held to the generosity of a Sunday visit.
It’s been shown that music has the ability to touch Alzheimer’s patients in surprising ways. A 2009 University of California at Davis study found that memory, music and emotions all activate the same region of the brain, which may have implications for Alzheimer’s patients. The idea that songs can evoke memories of people, places and moments from one’s past is hardly news, but Petr Janata, associate professor of psychology at U.C. Davis, has figured out why.
According to ScienceDaily, Janata’s research builds upon earlier findings that Alzheimer’s patients who have difficulty with their memory still respond to music. After mapping the brain activity of a group of individuals while they listened to music, Janata noted activity in the medial prefrontal cortex, an area just behind the forehead.
MSNBC reported Janata’s finding that as Alzheimer’s progresses, this area remains intact longer, while most other areas of the brain have deteriorated. When a song elicits a memory, Janata explains, “[The] music serves as a soundtrack for a mental movie that starts playing in our head.”
In his early research, Janata created “tonal maps” of a subject’s brain activity as various chords were played. The areas active in the tonal study corresponded to the same areas where subjects appeared to be accessing memories—the medial prefrontal cortex and neighboring regions. ScienceDaily reported that the more significant the autobiographical memory was the stronger the “tracking” activity.
In another of Janata’s studies, he first selected a group of the most popular songs from years when the subjects were between 7 and 19 years old. David Munger, a writer for Cognitive Daily, explained that in this study, 329 subjects listened to 30 such songs chosen at random. They rated each song’s familiarity, what emotions it triggered, and whether or not they liked it. In cases where the song elicited a memory, they were asked whether the memory related to a person, place or event. Subjects recognized about half of the songs they heard, and about 30 percent of the songs stirred up a memory. The most familiar songs were more often linked to a memory.
Below are a few resources you may find of interest:
Alzheimer’s Association (local, national): www.alz.org
Developed in partnership with the Alliance for Aging Research, this video is an excellent and easy-to-understand animated illustration of how Alzheimer’s Disease develops and progresses through the brain. (You can view related “pocket” videos at www.AboutAlz.org.)
In the coming days, I’d like to expand upon this simple introductory concept and begin a more in-depth exploration of how we might work together to lessen the stigma of brain disease. I invite you to send me your thoughts as we start this project.
As many as 5.3 million Americans currently live with Alzheimer’s Disease. That stunning figure, of course, extrapolates into an astounding number of people who either choose to be — or are thrust into — the role of caregiver. For some, caring for a family member, although difficult at best, is as natural as breathing. For others, kindness and patience is a learned behavior that is attained slowly and only with hard work and a great deal of support. The rough edges of some are not easily worn smooth. As in lapidary, it takes work and time — through a specific tumbling process — to polish a sheen onto a formerly rough stone.
For dementia caregivers, some days may certainly feel like being in a stone tumbler, tossing and turning, being scraped away by the grit of a beloved’s disease.
A while ago, I witnessed a beautiful display of a caregiver’s statement on behalf of her husband who suffered from early-onset Alzheimer’s. While he was still able to accompany her on shopping trips or participate in a rare dinner out, but clearly displaying difficulties with his behavior and word outbursts, she came up with a very simple and unique statement to strangers who often had surprised or disapproving looks.
Before leaving the house, she always pinned a carefully-written note to her husband’s shirt that simply read: ALZHEIMER’S TEACHES PATIENCE
Today’s question: If you have discovered other ways to help people locate the compassion and patience needed while caring for dementia patients, I’d love to highlight your thoughts and comments. What you offer might just help another struggling, tumbling caregiver.
According to the National Parkinson’s Foundation, 60,000 new cases are diagnosed each year, joining the one million Americans who currently live with Parkinson’s. Nine years ago, the Mark Morris Dancers of New York began offering dance classes to Parkinson’s patients. Dance classes? For people who either already move uncontrollably or who are stiffly locked into a pose from which they seemingly cannot escape? Dance classes? Of course. Why not. The idea was to use instructors and live music to help people discover rhythm and movement of dance. Surprisingly, the idea of dance is not only effective in helping participants maintain physical vigor, it also provides generous emotional benefits.
Now, the Mark Morris Dancers travel across the country, offering classes for PD patients and their caregivers, encouraging participants to “become their own choreographers.” See their website here for their amazing story in work with PD patients and caregivers.
My father, a Parkinson’s patient, would have loved the idea of dance. He would have waved his arms and wiggled his hips in grand movement with the music. A one-time musician, my father spent his life steeped in music. If he knew the words, he was singing. If there were no words, he was dancing. Even when there was silence, he figured out a way to tap a rhythm into the room until everyone was smiling and bobbing their heads.
After my father developed Parkinson’s dementia … after he was no longer able to stand or sit upright … after he became a silent whisper in his hospital bed … he was still moved by music. He always managed a smile, however difficult, when music entered into the day’s conversation.
In spite of his disease, my father danced all the way to the end!
Thanks to the Mark Morris Dancers, PD patients everywhere can now learn to honor their bodies through dance.
Read more about the group and their amazing work here.
Before I begin … before we commence the process of examining and discovering our Mad Hatter Muchness … perhaps I should give my credentials. My prestigious background falls along the lines of: WARNING! I don’t know ANYTHING.
That said, let me tell you what I do know. I know what it is to be a very sick person. I also know the responsibility of taking care of a very sick person. Both can seem intractable and neverending positions. The occurrence of any form of brain illness or injury is a particularly difficult time. Believe me, I know.
Sometimes a rare dance must be learned, often at bedside and sometimes under extremely harrowing conditions. Our particular dance is a one-step, two-step shuffle with a steep and urgent learning curve. Missteps are common and expected. The music is unfamiliar; we often need all the instruction we can get. They don’t seem to have made for folks like us those nice paper footprints that we can place on the floor and follow along with.
But that’s what this website is all about — sharing with each other what we learn along the way. We’ll make our own paper feet for us to practice this new version of ourselves.
Here are the rules: Our subject concerns brain illness and injury. That includes a wide array of issues and, as such, from time to time, we’ll narrow our focus and discuss a single topic before moving on to the next.
I especially appreciate respectful language and kind thoughts — that gives me smiley faces like crazy! Remember too, brain illness and injury is not limited to elder folks. Young people are also patients or part of caregiver teams and kids are invited to weigh in or, at the least, to read along … even if the kids are well into their adult years. I’m a kid too when it comes to speaking of the brain illnesses of my own family members. But we don’t want to forget that children are also invited to the big folks’ table.
Here, we’ll explore what it means to be both a patient and a caregiver. I’ll tell my story as appropriate and I enthusiastically invite your story too. I’d love to highlight your experiences and I welcome anything you’d like to send me. (See “Contact Auburn” located on the left side for my information.)
During this time while we’re still getting up and running, I’ll offer some daily topics and we’ll see what lights up.
This website is dedicated to the millions of brave folks who daily deal with brain illness and injury. Just so you know, I’m soon-to-be a sixteen-year brain tumor survivor. I’m also a writer and, in that capacity, I’ll probably introduce you to portions of my work now and then.
Let’s just consider this our crazy tea party time as we discover what the Mad Hatter would gravely call our Muchness.
I hope you’ll feel free to stop by as I work to build a site that will honor those who are caregivers, supporters, patients, hospice workers and survivors. I need all the help and comment I can get so that, together, we can make something lovely and important, meant to help us understand the elegance of thought, memory and compassion.
Remember too, brain illness and injury is not limited to elder folks. Young people are also patients or part of caregiver teams and kids are invited to weigh in or, at the least, to read along … even if the kids are well into their adult years. I’m a kid too when it comes to speaking of the brain illnesses of my own family members. But we don’t want to forget that children are also invited to the big folks’ table.