John Thorndike | The Last of His Mind |

Archive for September, 2009

“I Want to Defend Your Father”

Monday, September 28th, 2009

Two recent arrivals at my house: my oldest friend, here for a week’s visit, and a box holding twenty-five copies of The Last of His Mind, just in from the printer. The first book goes to B, and he’s been reading it as I address post cards announcing the book to other friends.

Joe Thorndike with John and Alan

Joe Thorndike with John and Alan

While not the first person to hold the book, he’s the first one to read it. Even I haven’t read it as a book, only in manuscript—and I find it a bit unnerving for him to read it in my presence. B and I have known each other for fifty years, since we attended Deerfield Academy, an eastern boarding school, and we’ve been talking about and analyzing our parents ever since. He knew both my father and mother well, and his first response to the book comes after thirty pages:  “I read this, and I want to defend your father. I want to explain what a great guy he was, and how much he did for you and Al.”

Al is my brother. And it’s true that my father was devoted to us, that he made time for us, that among fathers, including B’s, he was stellar. Suddenly, I’m afraid that I haven’t given him his due. It’s too late now, of course, but I could have written more about how he supported our projects and fed our imaginations, how he slowed down for us, how he read to us and taught us how to ride our bikes, and built sand castles with us at the beach and threw himself against the waves when the tide rose.

Some of that is in the book, but it’s overwhelmed by the trials of dementia, and sometimes by my complaints about my father’s emotional and physical reserve: by what I view as his failures. He was loving in his way, but affection seemed foreign to him after I passed the age of about five. It’s a story we’ve heard many times before—yet a key part of my childhood.

B worries about this passage, coming after the description of my mother’s death:

“I remember that early conundrum: if my house were on fire and I could save only one of my parents, who would I choose? This is a cruel question one child asks another, and when I was a boy there was no answer to it. But later, as an adult, I knew I would choose my mother. We have the same dark skin and hair, the same full lips, the same love of warmth and water. Her sensual nature runs in my blood in equal measure with my father’s restraint—and as a young man restraint didn’t interest me. I had plenty of that and wanted the other. I was like her, I knew. We both wanted to talk, to tell secrets, to dance, to caress someone. In the last thirty years I’ve thought many times that for me, the wrong parent died.”

What a thing to say: that I was left with my father instead of my mother, and that I wished he had died instead. Of course, I wished that neither of them had died—but in those years I needed my mother more.

B’s comment, delivered in deep friendship, reminds me that the book is now loose in the world, and that I’m going to hear other difficult opinions. People have strong reactions to such a personal story. Not everyone will be happy with my responses, or with my actions, and sometimes their comments are going to throw me for a loop. If I’d wanted to avoid this, I should have written a more measured and careful book.

Tags: , , ,
Posted in Uncategorized | No Comments »

Health Care and The Impossible

Thursday, September 24th, 2009

I went 39 years without insurance. From the time I left the Peace Corps at 26 until I became eligible for Medicare at 65, no insurance. Well, no daily insurance. I did carry what they called a “major medical” policy with a $10,000 deductible for true disasters. I never called on it,  just paid for it.

I was happy, at 65, to sign up for Medicare. I’ve used it, too, and now go to the doctor every four or five months. For the first time in all these years I have a doctor, a DO internist I like a lot. We started out with a checkup—my first since 1968—then did a colonoscopy, which I should have had at 50. Some other blood tests, some high-cholesterol treatment, and I’m pretty much up to date.

Framing a shed last fall

Framing a shed last fall

I’ve been lucky, I’d say. I’ve taken some risks but been reasonably careful. I’ve framed a dozen buildings and hung off plenty of roofs, cutting rafter tails and nailing on oak fascia thirty feet from the ground. I stepped off a homemade scaffold once, but slid chest-first down a slanting two-by-four brace and landed on the grass, just scaring myself. Now I bask in Medicare—but let’s face it, I should have had insurance all those years for both me and my son.

I rarely had a job with an employer, and never one with benefits. Pretty much, I look at insurance companies as a nest of vipers. I’m a single-payer advocate, always have been, like my father before me, like Dennis Kucinich. Long live socialism, say I—the kind that brings Medicare, public schools, the national highway system and care for the disabled. Tax and spend: it’s the essence of a government looking after its people.

But here’s a problem with optimum healthcare that politicians on either side don’t want to acknowledge: we can’t do it. Health care has become so sophisticated, so savvy, so technologically advanced, so expensive, that we can’t give the best care to everyone. We’d break the national bank tomorrow if we provided the most thorough medical care to every citizen. That, I think, is what underlies all these debates: we’re trying to figure out who’s going to be the bad guy and set some limits: the government or the insurance companies. Because someone is going to have to.

Two years ago I watched my friend and lover, Jan Sole, die of lung cancer. She had worked for years for the local NPR radio station—her soothing intelligent voice on the air every morning—and she had great insurance. After six months of chemotherapy and radiation, she fell apart and was taken to a hospital in Columbus, and they did what they could for her. They dealt out CT scans and other tests like dinner mints, they did their best and paid no attention to the cost, because her insurance covered it. But Jan was living proof, I’d guess, of that bandied-about statistic, that the average person spends more on healthcare in the last three weeks of her life than in all the years preceding.

Every group wants as big a piece of the pie as possible. The AARP is active, and lobbies for all kinds of extended benefits. And elder care does seem ripe for some changes. The debate is complex, and sometimes I’m not even sure where I stand. But I think about my father—who also had great insurance. When he came down with atrial fibrillation, he was treated for it. When he began to lose his memory, a neuropsychologist came to the house and asked him 200 questions, and he wound up on Aricept. He had a dentist, a podiatrist (when blood doesn’t’ circulate well to the feet, you have to look after them with care), a cardiologist and a pulmonologist.

But to be blunt, what he really had was me. Patients with Alzheimer’s take an enormous amount of care. It’s unlikely that the government is going to step in and look after the aged and demented in the same way they can take look after someone who’s fallen off a roof. The logic of healthcare is that whatever laws emerge, we must all take better care of ourselves. And the logic of caring for the elderly, or for those with Alzheimer’s and other dementias, is that families and spouses and friends have to do most of the work ourselves.

I wasn’t thinking in those broad terms when my father told me, about a nursing home, “Don’t ever put me in a place like that.” I didn’t think about that when I left home and moved into my father’s house. I did my best for him, and my brothers and I coped with his finances. But Alzheimer’s, unless they come up with some miraculous cure, is ten percent medical at most. It’s a social problem, it’s a family problem. It’s as old as Sugar Ray Robinson, Norman Rockwell, Somerset Maugham, Virginia Woolf, Ralph Waldo Emerson and the fictional King Lear, all of whom probably suffered from the disease. Someone has to look after those who lose their wits, and no government or insurance company can do the job that we do, the people of the nation.

I’m starting to sound like a Republican: every family to its own lifeboat. I’ll talk more about this in my next post.

Posted in Uncategorized | No Comments »

World Alzheimer’s Day

Monday, September 21st, 2009

Today is World Alzheimer’s Day, and statistics about the disease are flying around the Internet. Numbers of people suffering from dementia are growing. The cost is stunning, both in dollars and caregiving. Research on genes, brain proteins and medications has expanded hugely—but so far there is only the promise of a cure. There’s hope, but it lies somewhere in the future. Our one great advance is awareness.

My grandmother in better years, with her three daughters

My grandmother in better years, with her three daughters

Consider, less than fifty years ago, my grandmother. She had Alzheimer’s, surely, but I had never heard that word and wouldn’t for the next ten or fifteen years. We said she was senile—or more bluntly, that she’d lost her mind. My mother had put her in a home where I visited her—but only two or three times, as I soon entered the Peace Corps and left for Central America. My grandmother, I’m ashamed to say, was someone I judged as overly polite, as ridiculously proper, as altogether out of it. Now I understand how strong she had been, holding together her family in the face of an improvident and sometimes unreliable husband.

I remember going to visit her once with my mother and my aunt Barbara. We had walked some sixty feet from her room to the elevator, pressed the button, waited, entered and turned around. Before the doors closed, as we looked out on the floor she lived on, Gran said in a cheerful and determined tone, “Well, I don’t know where I am, but everything’s all right.”

At the time I thought that was an exact and pitiful summary of how she’d lived her life: always behind an emotional scrim, determined not to let her problems into the open or directly confront them. In the dismissive way of the young, especially in the late sixties, I had started to imagine the complete dismantling of a society based on archaic forms of social intercourse, among them the stiff upper lip.

Today I appreciate Gran’s fortitude, her backbone, her ability to stay cheerful through all kinds of disaster, including the loss of her mind. That day in the nursing home she didn’t know what was wrong, but she had dressed and was going out to dinner with these people, whom she may or may not have known, and she was determined that all would go well.

Awareness. If I’d had more of it, how differently I would have treated my grandmother. Or at very least, how differently I’d have thought about her.

Decades later my father began to lose his memory, his language, and eventually his concept of self. I had a label now for his condition: it was dementia, it was probably Alzheimer’s. He took a medication—Aricept—to slow its advance, but you would never have guessed that his losses were being slowed. To look at him, they were all speeding up.

By then I had a good deal more awareness about dementia, and I certainly treated my father better than I had my grandmother. But for all the research on dementia, we haven’t stopped how it tears families apart. We have some drugs which may stave off the worst symptoms for a few months. But as the statistics flow on World Alzheimer’s Day, what still matters most is how we take care of our parents or spouses or friends who suffer from this disease. Human will and warmth—with an occasional stiff upper lip when things get out of hand—are still the best we can offer.

Tags: , , , , , ,
Posted in Uncategorized | No Comments »

The Book Is On My Desk

Friday, September 18th, 2009

tlohm-cover-red

It’s the happiest moment in publishing: the book arrives at Swallow’s office—two copies sent by the printer to verify that all is well before they do the full run—and I drive into town to see how it looks, how it feels. Everyone is excited. David Sanders, the Director of Ohio University Press, comes around the corner and his face lights up. “Did you see it!” The press publishes dozens of books a year, but the staff’s delight in a good job is fresh and untempered. Besides, few of their authors live right here in Athens and can speed in to see the book on its first day.

There are two copies, and they give me one. After some talk with Jean Cunningham and Jeff Kallet about marketing and publicity, I take the book out to my car and sit down, the door open to the warm autumn day. For a long time I just hold it. I love the cover. I love the color of that old fifties photo, taken at Sagaponack near the end of Long Island, decades ago when my family was still intact. The breakers roll in behind us, the afternoon sun is casting shadows, my dad and I lie on our towels. I’m a good deal older now than my father was in that photo—but the glory of a photograph is to hold that moment of togetherness, as life itself never allows. We have rushed on, through happiness and chaos and sometimes defeat. But there we are on the beach, side by side, the slope of our shoulders so much the same, our chests, our arms.

We were always exactly the same size, my father and I. In height, to be precise, we were five feet nine and five-eighths. This was before the shrink of Dad’s old age—and even I have lost a little by now. We walked with the same gait. We came down stairs with the same step, we had the same faintly sway-backed posture.

For a long time I stare at the photo. It’s just a snapshot, taken by our old family friend Patty Coughlan. It lay for years in my father’s files, and I found it there during his last year, when I was living with him. Now, for me, it has attained iconic status. It’s on the book!

And paging through the book, with its handsome design, I drop down here and there and begin to read. I read this, from a winter day on Cape Cod when I drove my dad to the beach:

“I sit behind the wheel and wait. An hour-long nap is nothing to him, and I wish I’d brought a book. Finally I get out of the car and close the door, softly. My father sleeps on. I mash across the sand to the edge of the ocean, crouch and lift a handful of cold salty water to my face, then walk down the shore for a hundred feet. In the last five days this is as far from my father as I’ve gone. There he sits in the car, slumped back against his seat with the keys hanging from the ignition. Someone could steal him I think, an idea that makes me laugh. I walk even farther down the beach, until his car almost disappears in the fog, until I’m too far away to stop a kidnapper. Of course no one is going to steal this old man. They’re more likely to see him sitting there with his mouth hanging open and think he’s dead, and report him.”

Yes, I think shamelessly: the cover is right, the words are right, and this is a beautiful book.

Posted in Uncategorized | No Comments »

What Do Tigers Do?

Wednesday, September 16th, 2009

max-at-16-months

While I was on the phone to my son last night, he turned on his speakerphone so I could hear the latest from my grandson. Janir asked 20-month-old Max, “What do tigers do?”, and Max said, “Rrrrrrr.”

“What do cows do?”

“Mmooooo.”

My grandson was having a conversation! A slightly primitive conversation, perhaps—but is there anything more fascinating and glorious than the onset of language?

On a visit just a month ago, Max had only five or ten words: Daddy and Mommy and ball and nose and oh no, among others. A couple of days ago Janir sent me some of his son’s new acquisitions: doggy and bug and mine and (ba)nana and bottle. Then, only a day later, an email saying, “Add spoon to the list!”

Soon it will be a stream, then an avalanche of words. Learning how to walk was great, but learning how to talk will join Max to the world that’s been going on all around him, and that he has so much wanted to be part of: the world of language.

As beautiful as it is to watch, I can’t help thinking of my father, whose last year was the exact opposite of what my grandson is going through now. I heard my dad, even before I went to live with him, forget the names of people and places he’d known for sixty years. First he lost his proper nouns, then his common nouns began to fail him: words like flower and tennis and plate. And now it seems to me that his agony at this was the end-of-the-line equivalent of Max’s glee at knowing the sound a tiger makes. Indeed, of knowing what a tiger is.

I read a lot of let’s-be-cheerful advice about Alzheimer’s and the loss of language and memory. Indeed, when living in my dad’s house and looking after around the clock, I tried to keep in good spirits myself. But my grandson’s joy reminds me of how hard and cramped language became for my father, and how much he suffered from the loss of his words. For his entire adult life he’d been an editor, a writer and a lively conversationalist, yet near the end he couldn’t share in the simplest verbal interchange. The pain of this was often on his face, and to this day I don’t dismiss it—even as I listen to my grandson and think, This is so cool.

Posted in Uncategorized | No Comments »

It’s Everywhere

Wednesday, September 16th, 2009

jjt90b2

When I talk to friends about their aging parents, I often hear about Alzheimer’s. When I tell people about the year I spent looking after my father, I hear stories of extended and arduous caregiving. When I explain that I’ve written a book about my father’s dementia, I often hear about other people’s grandparents or parents who’ve been overtaken by the disease.

Though anecdotal, this evidence is in line with the statistics: Alzheimer’s is everywhere. It’s the diagnosis we fear, and—if we grow old enough—our almost-inevitable future. Even now, half of everyone over 85 suffers from some level of the disease. We are looking at a public health disaster.

At the same time, it’s not the disease I hear most about, it’s family stories, with all the warmth and love and chaos that families generate. Because we’re paying more attention to the elderly these days, of course we’re going to hear more about Alzheimer’s and other dementias. We can’t ignore it or turn our backs on our parents, siblings and spouses. Though not what we planned for our parent’s old age, or our own, Alzheimer’s has crept into almost every family.

In this blog we’ll pay attention, and make the best of it. If nothing else, I’ve found, it’s a disease that’s completely fascinating.

Posted in Uncategorized | No Comments »