The Forgetting: Understanding Alzheimer’s: A Biography of a Disease. David Shenk
to writer Lisa Snyder. “I wondered if there was anything for me to live for.”
It can take a while to sink in. Experienced doctors know not to try to convey any other important information to a patient or family member on the same day that they disclose the diagnosis. They put some helpful information into a letter, and schedule a follow-up.
There is no cure for Alzheimer’s at the present time, and not much in the way of treatment. Historically, the one saving grace of the disease over the years has been that many, if not most, of the people who acquire the disease do not comprehend what is about to happen to them and their families. Now, for better or worse, that has changed. More and more are learning at the earliest possible opportunity what they have, and what it means.
What will they do with the advance knowledge? It is not an easy question. Will they use the time left to get their affairs in order and to prepare themselves emotionally for the long fade? Or will the knowledge only add to the frustration and force them into a psychological spiral to accompany the physiological one?
The Freund House early-stage support group was one experimental approach to tackling such unknowns. When Judy and Irving created it in 1997, they weren’t sure it would work. Could people struggling with memory loss, spatial disorientation, and confusion actually strike up a meaningful relationship with a group of strangers? They had to assemble just the right team. “We had to turn many people away,” said Judy, “because we didn’t feel they were right for a support group. They weren’t introspective enough. They weren’t bothered enough.”
The group was also temporary by design. As participants lost the ability to contribute, they would be eased out of the group, and perhaps admitted to a middle-stage group like the one that Judy ran down the hall. In that group, volunteer caregivers always accompanied patients to the restroom and back, because otherwise they would get lost. Most, not all, still responded to their own name. After a cafeteria-style lunch, everyone came together in a circle to sing fun songs together, like the theme from Barney:
I love you
You love me
We’re a happy family
Members of the early-stage group occasionally caught a glimpse of the middle-stage group as they passed by to get a cup of coffee. The quiet, desperate hope of everyone in this group was not to end up in the other group. Barring a scientific miracle, though, there would be no avoiding it. The average interval from diagnosis to death in Alzheimer’s disease is eight years.
In the meantime, there were a hundred small consolations. The early-stage group members had quickly come to rely on one another for help through this very strange ordeal. Sometimes barely able to remember from week to week, they had nevertheless become friends. They shared memories of movie stars and kosher butchers. They talked about travel and passed around pictures of grandchildren. They even talked politics.
“Greta, any comments on Giuliani?” Judy asked one afternoon.
Greta swatted an invisible bug away from her face. “Oh don’t get me started about him,” she said. “You know I can’t stand him.”
“Clinton, then? What does everyone think about Monica?”
Opinions ran the gamut. Ted, his hands shaking with a Parkinsonian tremor (it is not unusual for people to suffer from both Parkinson’s and Alzheimer’s), suggested that Clinton should resign because he lied directly to the American people. Greta, a lifelong subscriber to The Nation, thought that Clinton probably kissed Monica but that the whole issue was overblown. Sadie thought it was all a Republican scheme.
Doris had an opinion, too, but with her severe expressive aphasia—an inability to retrieve words—she had great difficulty making it known.
“Gore … President … I think … good leader … lies …”
She appeared to be aware of her thoughts and very clear on what she wanted to say. But the words were no longer accessible. This was especially painful to watch because, as everyone in the group knew by now, Doris had a forty-year-old son with cerebral palsy who was deaf The two were very close, and, as it happened, she was the only one in the family to have ever learned sign language. Now Doris’s aphasia was also wiping away that second and more vital language. She could no longer speak to her son, leaving him marooned.
It was now a few minutes after one o’clock, time to say good-bye for the week. Rides were arranged. Someone went to fetch William’s wife, a volunteer in the middle-stage group.
Robert seemed to be having a hard time of it. Just a moment before, he had been lucidly telling me about his family and his past. He’d had no problem relating how he was spirited out of Nazi Germany as a young boy, turned over to relatives in England and later in New York. I learned all about his children, their occupations and families, the cities they lived in. But now he was struggling to understand a piece of paper his wife had written out for him about getting home. To the undamaged brain, the instructions were fairly straightforward—Robert will be picked up by the car service at 1:15, and should be driven to his home at ___ Street.…—but he was having a lot of trouble making sense of it. Then there was the other problem. In the last half hour, he had told me how he eventually came to live in the Bronx, where he was introduced to his wife, a distant cousin. He had described how crowded that Bronx apartment was, and where else he had lived in the city as he’d grown older. But now, for the life of him, Robert could not remember where he had put his jacket.
It was on the back of his chair.
Very often I wander around looking for something which I know is very pertinent, but then after a while I forget about what it is I was looking for.… Once the idea is lost, everything is lost and I have nothing to do but wander around trying to figure out what it was that was so important earlier. You have to learn to be satisfied with what comes to you.
—C.S.H.
Harrisonburg, Virginia
Chapter 3 THE GOD WHO FORGOT AND THE MAN WHO COULD NOT
There could be no happiness, cheerfulness, hope, pride, immediacy, without forgetfulness. The person in whom this apparatus of suppression is damaged, so that it stops working, can be compared … to a dyspeptic; he cannot “cope” with anything.
—FRIEDRICH NIETZSCHE
As found in the Pyramid Texts, from 2800 B.C., Ra was the Sun God, the creator of the universe and of all other gods. From his own saliva came air and moisture. From his tears came humankind and the river Nile. He was all-powerful and, of course, immortal—but still not immune to the ravages of time: Ra, the supreme God, became old and senile. He began to lose his wits, and became easy prey for usurpers.
Throughout recorded history, human beings have been celebrating the powers of memory and lamenting its frailties. “Worse than any loss in body,” wrote the Roman poet Juvenal in the first century A.D., “is the failing mind which forgets the names of slaves, and cannot recognize the face of the old friend who dined with him last night, nor those of the children whom he has begotten and brought up.”
It took several thousand years, though, for anyone to figure out how memory actually worked. Plato was among the first to suggest a mechanism. His notion was of a literal impression made upon the mind. “Let us suppose,” he wrote, “that every man has in his mind a block of wax of various qualities, the gift of Memory, the mother of the Muses; and on this he receives the seal or stamp of those sensations and perceptions which he wishes to remember. That which he succeeds in stamping is remembered and known by him as long as the impression lasts; but that, of which the impression is rubbed out or imperfectly made, is forgotten, and not known.”
Later came the ventricular theory of cognition, from Galen (129 – ca. 199 A.D.), Nemesius (fourth century), and St. Augustine (354–430). According to this notion, the three major functions of the brain—sensation, movement,