by Susan Hall. Susan is a high school English teacher. She lives with her husband and two children in Pentwater, Michigan, where she and her family enjoy cheering on her son’s Special Olympics basketball team, the Area 24 Tornadoes.
(I included this because the song Red River Valley is the one that Grandpa shared with us most often while he lived with us, and it reminds us most strongly of him. I love how it is emphasized in this essay!)
It showed up last Christmas, a gift borne by eager grandparents. Long and unwieldy, we managed it through the front door, grandparents on the porch, I inside, angling it this way and that.
Since the unwrapped present’s box boldly declared its contents, I dispensed with the usual wait-until-Christmas rule. We pried apart the box’s sharp staples, and there it was: the mother of all electronic keyboards.
My son loves music. Diagnosed at age one with a rare seizure disorder that stalled his cognitive development, he is fond of rhythm, buttons, and lights. And so we have known some keyboards over the years. They’ve been presents from all over the place: eBay, garage sales, a local grocery store. Our basement is a bone yard of broken keyboards, some still working erratically if pounded in the right spots.
The new present was spectacular. A song bank stores one hundred familiar tunes. By pressing a sequence of buttons, my son can change the instruments and tones in startling ways. We’ve heard everything from “Ode to Joy” with a disco beat to a haunting church organ rendition of “Happy Birthday.”
I love the keyboard not because my son loves it, not because it is a great educational toy, but because it safely occupies him for long stretches. As long as I hear the stops and starts of the music blaring from my son’s room, I have time to fold towels, grade a paper, throw a roast in the oven, or read about my son’s disability. I have time to fantasize about mounting some public and terrific response to my son’s affliction. The keyboards have been great babysitters.
One day I wandered into my son’s room. “Beautiful Dreamer” was playing. I sat down on the floor to cut my toenails. My son leaned back and flashed me a beatific smile. I smiled back: the music was nice, the piano just right.
A few days later my son, insistent, led me to the bathroom connected to his bedroom. He climbed up on the toilet and reached into a basket perched on the windowsill. Then he handed me a pair of nail clippers. Instantly I understood. And so I sat for a while on his bedroom floor, just listening with him. “Four-four,” I requested, naming the number for my favorite tune, “Red River Valley.”
He surprised me by accommodating my request, and we shared some smiles. As we listened, the sunlight came streaming through the blinds. It was brilliant and perfect and infused with that certain and unnamable something else.
The other day, curious, I looked up the lyrics to “Red River Valley.”
Come and sit by my side if you love me,
Do not hasten to bid me adieu.
And so I have come to believe in sitting and listening with someone as a powerful act, a loving action full with possibility. This I have learned from my son and his special music, a belief forged only after I was able to take a moment and listen.
by Korinthia Klein:
My grandfather died more than twenty-five years ago. I was fifteen. He was kind, strong, fair, and very funny. When I was a young musician, he was my biggest fan. My grandpa used to applaud when I tuned, and I would roll my eyes and shrug off his enthusiasm as too biased. I played my violin for him when he visited, and he loved everything, but each time he had one request. “Could you play ‘Amazing Grace’?” he asked, full of hope and with a twinkle in his eye, because he knew my answer was always, “I don’t know that one!” We went through this routine at every major holiday, and I always figured I’d have time to learn it for him later.
About the time I entered high school and had switched to viola and started guitar, Grandpa got cancer. The last time I saw him alive was Thanksgiving weekend in 1985. My mom warned us when we turned onto the familiar street that Grandpa didn’t look the same anymore and that we should prepare ourselves. For a moment I didn’t recognize him. He looked so small among all the white sheets, and I had never thought of my grandpa as small in any sense. We had all gathered in Ohio for the holiday, and I’m sure we all knew we were there to say good-bye. I can see now that Grandpa held on long enough to see us each one more time. I remember how we ate in the dining room and laughed and talked while Grandpa rested in his hospital bed set up in the den. I wonder if it was sad for him to be alone with our voices and laughter. Knowing Grandpa, he was probably content.
The next morning I found my moment alone with him. I pulled out my guitar, tuned to his appreciative gaze, and finally played for him “Amazing Grace.” I had worked on it for weeks, knowing it never mattered if I actually played it well and choosing not to believe as I played that it was my last concert for my biggest fan. The cancer had stolen his smile, but I saw joy in his eyes. He held my hand afterward, and I knew I had done something important.
I argued with people all through college about my music major. I was told by strangers that music wouldn’t make me any money and it wasn’t useful like being a doctor. But I know firsthand that with music I was able to give my grandpa something at a point when no one else could. Food didn’t taste good, doctors couldn’t help, and his body had betrayed him and left him helpless. But for a few minutes listening to me with my guitar, he seemed to find beauty and love and escape. At its best music is the highest expression of humanity’s better nature, and I’m privileged to contribute to such a profound tradition.
So, this I believe: Love matters. Music matters. And in our best moments they are one and the same.
When I was growing up, my father's siblings were an important part of my life. I knew their stories, and we visited them and communicated with them. My uncle and aunts were very dear to me. Sadly, since my siblings don't have anything to do with us, my own children don't know anything positive about them, and are growing up without the deep family connection that I was so fortunate to experience.
I suppose this is all just 'wasting myself in rejection', but my siblings have disowned me and their father, and they hurt themselves and my entire family in the process. I think that is worth standing up to. They don't care and won't listen, but at least the universe knows that I am taking a stand against their decision to make us invisible to them.
And when my Dad passes on, I have no idea how to let my siblings know.
I do have my brother Jamie, who remains interested and who reads this blog. We thank you from the bottom of our hearts, Jamie. Also thank you to my cousin Mary Ellen and to my sister-in-law and nieces in New Zealand for their support and love! All is not lost, since we have you. We heart you all.
His shirt says "Say NO to negative thinking"
We have to be on the lookout as well for what he does with unfinished plates. Vince goes through his room daily and has found some funny stow-aways: for example, here's a photo of when Grandpa took his unfinished burrito, wrote his name on the tortilla in red marker, and stashed it in his drawer. 
He does interesting things with food. He can't figure out what to do with the blueberries in his oatmeal, for example, so he will arrange them in rows at the bottom of his bowl.
In the summer, I take him to as many farmer's markets as I can - they are lovely. We take him blueberry picking as well - quite a lovely outing!
My father knew it was coming.
Alzheimer’s disease had been on his radar ever since his own father died of it. Witnessing the catastrophic deterioration of a man who had been sharp enough to work for Gen. Douglas MacArthur, my frightened father was inspired to become a neurologist. Perhaps the pursuit of medicine could stave off what he believed was a genetic inevitability.
As an ever-present reminder of that threat, he kept an atrophied brain in a jar on his desk. That brain, I recently discovered, belonged to his father.
As my father approached middle age he began to experiment on himself, with diet supplements. By age 60 he was taking 78 tablets a day. He tracked down anything that offered the possibility of saving brain cells and killing free radicals: Omega 3s, 6s, 9s; vitamins E and C; ginkgo biloba, rosemary and sage; folic acid; flaxseed.
After retiring from his neurology practice in Naples, Fla., he spent hours a day doing math. Even when I was visiting, he’d sit silently on his leather recliner with a calculator to verify the accuracy of calculations he did by memory.
“What are you saving your mind for, Dad?” I often wondered to myself. “I’m here now, waiting to talk with you.”
On one of these occasions, he suddenly looked up from his Sudoku game and stared at me.
“Promise me something, gal,” he said. “Anything,” I answered.
“Swear on your grandmother’s Bible that you will put a gun to my head if I wind up like my father.”
He was dead serious.
How do you answer a man who watched his father wipe feces on the walls of their Virginia farmhouse? A man who took out a second mortgage to buy the first CT scanner in Florida?
“Swear to me,” he repeated. He collected guns and kept them under lock and key. He knew I could shoot them, because he’d taught me how. I put my hand on the leather-bound King James Bible that had belonged to my great-grandmother Nannie Dunlap and my grandmother Nancy Scott.
“I swear,” I said.
He nodded in approval.
A few years later, my father arrived at my home in Vermont with a suitcase full of supplements. He parceled out his pills for the week into Dixie cups, ready for swallowing with every meal.
“Gal, you should be taking these, too.”
“Why?”
“Because you are my genetic clone.”
Our physical resemblance and character traits were uncanny: tall, big-lipped, blue-eyed, loose-jointed, freckle-skinned, angst-ridden Bercaws. Except for our male and female chromosomes, nearly everything about us was a perfect match.
My father went on to explain that everyone inherits one copy of the APOE gene from each parent. The gene can indicate a predisposing genetic risk for Alzheimer’s. APOE-2 is relatively rare and may even provide some protection against the disease. APOE-3 is the most common and appears to have a neutral role. APOE-4 indicates the highest risk factor.
“I’m only 34! Can’t I think about this later?”
He shook his head.
Back in Florida, he sent me a genetic test kit via Federal Express, instructing me to have the blood drawn at my physician’s office but to have the results sent to him. It turned out that like my father I carry the APOE-3 gene, which means I may or may not get the disease.
But unlike my father, I will have to wait to find out. In 2009, at age 71, he had an M.R.I. that showed “atrophy consistent” with Alzheimer’s disease. He looked at the film and was confused by the sight of his own brain.
I recently spent time with my father while his wife had surgery. I took him to visit her at the hospital each day, and when we got home I stopped him from calling her every five minutes. I gave him dinner and pills at the appointed hours. I cleaned up his “accidents.”
While he watched a televised baseball game one afternoon, I walked into his den and eyed the wall of supplements he used to take — bookcase after bookcase of pills with names like Memoral and Sharp Mind. Won’t be needing them anymore.
I rested my hand on his gun cabinet. Won’t need you, either.
My father walked to the coffee shop with me every morning. The only thing he’d say on these walks was, “The hibisci are in full bloom.” Every time he said it — which was dozens — I wondered whether the plural of hibiscus is, in fact, hibisci.
On the final morning of my visit, he didn’t mention the blooms. But when we passed a particularly flourishing tree, he stopped to look at me.
“Gal,” he said, then paused to find the words.
His voice quivered. “I sure appreciate you coming down to take care of me.”
I composed myself long enough to say: “It was a pleasure, especially after all you have done for me. Besides, you don’t need so much taking care of.”
As we walked on, my father would repeat this latest sentence every few minutes — the same quiver in his voice at the exact same place.
Each time, my response got shorter and shorter, until I was the one who had nothing left to say.
Age and family history are risk factors for AD.
Other risk factors that are not as well proven include:
There are two types of AD -- early onset and late onset.
The cause of AD is not entirely known, but is thought to include both genetic and environmental factors. A diagnosis of AD is made when certain symptoms are present, and by making sure other causes of dementia are not present.
The only way to know for certain that someone has AD is to examine a sample of their brain tissue after death. The following changes are more common in the brain tissue of people with AD:
When nerve cells (neurons) are destroyed, there is a decrease in the chemicals that help nerve cells send messages to one another (called neurotransmitters). As a result, areas of the brain that normally work together become disconnected.
The buildup of aluminum, lead, mercury, and other substances in the brain is no longer believed to be a cause of AD.
Dementia symptoms include difficulty with many areas of mental function, including:
Dementia usually first appears as forgetfulness.
Mild cognitive impairment is the stage between normal forgetfulness due to aging, and the development of AD. People with MCI have mild problems with thinking and memory that do not interfere with everyday activities. They are often aware of the forgetfulness. Not everyone with MCI develops AD.
Symptoms of MCI include:
The early symptoms of AD can include:
As the AD becomes worse, symptoms are more obvious and interfere with your ability to take care of yourself. Symptoms can include:
People with severe AD can no longer:
Other symptoms that may occur with AD:
AD can often be diagnosed through a history and physical exam by a skilled doctor or nurse. A health care provider will take a history, do a physical exam (including a neurological exam), and perform a mental status examination.
Tests may be ordered to help determine whether other medical problems could be causing dementia or making it worse. These conditions include:
Computed tomography (CT) or magnetic resonance imaging (MRI) of the brain may be done to look for other causes of dementia, such as a brain tumor or stroke.
Unfortunately, there is no cure for AD. The goals in treating AD are to:
DRUG TREATMENT
Most drugs used to treat Alzheimer's are aimed at slowing the rate at which symptoms become worse. The benefit from these drugs is often small, and patients and their families may not always notice much of a change.
Patients and caregivers should ask their doctors the following questions about whether and when to use these drugs:
Two types of medicine are available:
Other medicines may be needed to control aggressive, agitated, or dangerous behaviors. These are usually given in very low doses.
It may be necessary to stop any medications that make confusion worse. Such medicines may include painkillers, cimetidine, central nervous system depressants, antihistamines, sleeping pills, and others. Never change or stop taking any medicines without first talking to your doctor.
How quickly AD gets worse is different for each person. If AD develops quickly, it is more likely to worsen quickly.
Patients with AD often die earlier than normal, although a patient may live anywhere from 3 - 20 years after diagnosis.
The final phase of the disease may last from a few months to several years. During that time, the patient becomes immobile and totally disabled.
Death usually occurs from an infection or a failure of other body systems.
Although there is no proven way to prevent AD, there are some practices that may be worth incorporating into your daily routine, particularly if you have a family history of dementia. Talk to your doctor about any of these approaches, especially those that involve taking a medication or supplement.
