The Story of My Father (18 page)

INTERVIEW WITH SUE MILLER

Interviewer Michelle Huneven lives in California and is the author of
Round Rock
and
Jamesland
.
She and Sue Miller are old friends.

Q: When did you first get the idea for this book? Was it while your fa
ther was still living? Did you keep any kind of journal during the time
you were caring for him?

A: I didn’t think of writing about my father’s life and illness and death until after he had died. While he was still alive and in my care, I was struggling so hard to write some fiction—I was writing and I finished
Family Pictures
, my second novel, when he lived near me, and I began
For Love
while he was still alive—that it wouldn’t have occurred to me to try such a book. But I had such a powerful reaction to his death, and it stayed with me intermittently for so long, that within a year and a half or so, I had decided I would try to make some accounting of all of it. I had no journal, so some of our exchanges are my approximations of what we actually said to each other. Often I imprinted them in memory by repeating them to my husband, in horror or amusement or bemusement.

Q: Why do you suppose you were compelled to write nonfiction about
your father, but fiction—so far—about your mother?

A: I think the grief I felt for my father was so prolonged and overpowering that the initial impulse had to do with getting some control over that. And some part of its intensity, I felt, had to do with the nature of the illness he died from. So that from the start, the nonfiction was not only about my father, but about the illness— about Alzheimer’s disease—and the way it changed him and my understanding of him. My mother’s death, while difficult, didn’t bring with it the same complex of problems for me, so I think it hasn’t stirred the same impulses in me.

As for my having written fiction about my mother, I’d argue that while I’ve used aspects of her personality in creating a couple of fictional characters, none of them was intended to be her, and I always felt free to bend and invent and change those aspects—a sign of how far away I was from writing “about” her. I was intensely aware, as I wrote this nonfiction book about my father and his death, of the
lack
of freedom I felt to invent, to do the
play
of making fiction, one of its deepest pleasures for me.

Q: You mention an Alzheimer’s support group, but you did not find its
emphasis on self-care particularly helpful. And yet I know you did
take some steps while you were caring for your father to help ease your
emotional strain. What else did you do to keep your wits and your balance during his long illness?

A: Doug was really my main resource during this period. It helped me to be able to repeat things my father had said to me, to report what he’d done, to speculate on what turns the disease would take next, to talk about how I should handle things, and most of all, to laugh. There was much that was funny, bizarre, in my father’s illness, and I never felt guilty about laughing at it. That Doug shared my understanding of my father—he’d known him just long enough before he became deeply symptomatic to have a strong sense of who he was—made him the perfect person to whom to repeat stories of the loopy events in Dad’s inner life.

Often Doug would make especially delicious meals on the days I saw my father; and in the ten-day period during which Dad was dying, we developed the ritual you refer to. Doug was working at that time on a book which featured a fictional film star of the thirties and forties, so I’d come home to a wonderful meal each night, and then we’d watch one or another screwball comedy— light, funny, as delicious as the dinner, and an escape for a few moments from everything else.

I think the other thing which helped me was to keep working. One of my pleasures in writing fiction has always been the way it invites me to live part of the time in another, imaginary universe; and being a writer was a great boon to me while my father was ill. We had a house on Buzzards Bay then, and I often went there to work. Being there felt far away—though, in reality, I could get to my father in a little over an hour when I needed to. I wrote, I gardened, I patched and plastered and painted, and I felt free, sometimes for whole days at a time, of my sorrow for Dad.

Q: After your father died, what did you do with that enormous gap in
your life that used to contain the driving, the thinking, the concern, the
actual time spent with him?

A: Well, first I got clinically depressed, so I spent some time looking at walls and weeping. And then I worked again. And Doug and I began at that period to go in the winters to California for a few months, where we followed the NCAA tournament with insane attention and were keen on politics—Clinton was running and got elected the year after my father died. We also went to France for a few months that year. We began to plan and then build a house in Vermont. And then, with my sorrow still blind-siding me from time to time, I starting reading about Alzheimer’s and thinking about writing this book.

Q: Once, when you and I were walking in Boston, I said, “My father’s
getting older, what should I do? Look into retirement homes? Get a
game plan together?” And you told me that I would have to cross those
bridges soon enough, no need to anticipate them, that caring for a failing parent is something you learn to do as you go along. Do you still
agree with that advice? Is there a way of preparing ourselves?

A: I do still agree with that advice. I think there’s some sense in making plans financially, if that’s going to be an issue, and in being clear on what your parents’ wishes are if they end up with an illness like Alzheimer’s disease or a debilitating stroke—I remember finding Dad’s living will in my files after his death and weeping in relief that I had this confirmation on paper that I’d done what he would have wished in signing the Do Not Resuscitate order. So that kind of thing seems worth doing. But I don’t think it’s a bad idea to let things play out. If you’re a little bit behind events, that’s not usually a disaster. And there’s always the possibility of the quiet death in the night, the death we all wish for.

Q: I knew you during the years that this book was researched and
written and was witness to the various times you put the book aside to
write a novel—did you ever think you’d put it aside for good or that it
would never be done? Now that you have written one nonfiction book,
do you have plans for any others?

A: Once I’d begun this book, I took it as a kind of obligation to try, anyway, to finish it. I think I might not have been surprised to be unable to accomplish that, but I don’t think I would ever have been comfortable saying, “I’ve put it away for good; I’m never going to try it again.” There were times when I wasn’t sure I was going to be able to find a way to do it that made sense—that seemed, I suppose,
beautiful,
to me, which is of course what we want to feel about what we make. But I never thought I was going to give up trying.

But I can’t imagine doing another one. I might write more essays, more nonfiction articles. But living for long enough to write another entire book without the sense of the imaginary, with the nearly erotic notion of fictional
play,
without the pleasure of conjuring characters and their universe, without escaping from myself—that’s not anything I’m interested in.

Q: You felt compelled to write this book. Now that it’s been out
in the world for a while, how do you feel about it? Did it complete
something for you, give you closure? Do you even believe in closure?
How have you continued to think about your father and those last
years together?

A: I don’t believe in closure. I live with my father, with my mother, with my grandmother. And sometimes my grief for my father returns to me. But it’s less painful, less cutting. And often now I think of him with pleasure. I’ve had dreams of him since I finished the book—dreams in which he’s just present, puttering, setting the table or something like that. And I wake with the pleasant sense of his being near. This is new. This is something I couldn’t have had in earlier years. And maybe couldn’t have had without writing the book, but I can’t know that.

I am pleased with the book. It
does
seem beautiful to me, to have a form that pleases me, to come round in a way that echoes the experience of grief and return from grief which I had. But even now that it’s done, I can think of my father in new ways; he still changes and lives for me. I don’t so much think of those last years, though. I’ll never forget them, I suspect; but they aren’t what I think of when I think of my father anymore.

Q: Since your father was ill, there has been a sea change in the knowl
edge about and treatment of Alzheimer’s disease. What are the new
advances that would have significantly changed what he (and you) experienced in the course of his disease?

A: There are medications now which slow the course of Alzheimer’s disease, both in the early and in the late stages, and these would surely have helped my father some. But I think the main advances have been in the understanding of the kind of care Alzheimer’s patients need, and in the establishment of living communities dedicated to that care. For instance, my father’s wandering within the continuing-care community he lived in was bothersome—bothersome to other, intact residents who wanted privacy from this loony and disoriented old man, and bothersome to the nursing staff who were trying to maintain order in a unit which included both demented and nondemented residents. If he’d been able to wander freely, I think he would have felt less angry, less persecuted. If he’d been able to go outside in safe circumstances, that would have helped him. If his delusions and hallucinations hadn’t been treated with contempt, he might have felt the staff were his allies instead of people who lied to him. There is a whole approach to the training of people who work with Alzheimer’s patients now that is much more insightful and helpful, and I think that would have changed his experience and mine.

QUESTIONS FOR DISCUSSION

Why does Miller begin this book with a chapter about her father’s choices concerning the draft during the Second World War? What do his decisions in this matter tell us about him? What does the biblical quotation “Ye have not chosen me, but I have chosen you” mean? And how do its meanings thread throughout the book?

There is a moment in Chapter Two when Miller’s father receives the news of his fate. He smiles and says, “Doggone, I never thought I’d lose my mind.” Miller later sees this as a moment characteristic of him, and a brave, even noble one—but at the moment, she didn’t want to think about it at all. Why is this? How do we come to face the unfaceable, talk about the unspeakable?

The Story of My Father
is not a self-help book but a memoir. Miller positions herself not as a model but “simply an example” of someone who has cared for a parent dying of Alzheimer’s. Still, she hopes the book will do some good. What kind of good does a memoir do? What is the difference between giving advice and sharing experience? Which do you find more compelling?

Why does Miller consider herself lucky as a caregiver? If she hadn’t been so lucky—if, for example, she and her father could not have afforded the quality care he received, how do you think Miller’s story of her father’s illness would have changed?

What difference does having an actual diagnosis of Alzheimer’s disease make to Miller?

Miller clearly loved and respected her father, just as he so clearly loved and respected her. Not everybody has such a mutually respectful and loving relationship with a parent. In what ways did her good relationship with her father make it easier to take care of him? In what ways did it make caring for him more difficult?

Do you think that a grown child is obliged to care for an aging parent? If so, to what extent?

Once her father moves into Sutton Hill, Miller “takes charge” of him—she visits, she makes major medical decisions, she communicates with her siblings about his health—and she does this largely on her own, by herself. What were the benefits, the difficulties, and the consequences of her taking on such a task virtually singlehandedly?

At first Miller didn’t support her father’s delusional life, and argued him out of his inaccurate perceptions. But when his delusions eventually could not be dispelled, she began to accept them as his experiences. Why did she do this, and how did this change their interactions?

When her father is dying, Miller tries to imagine what she would want, dying. She decides that it would be to feel loved, to feel connected. What do you imagine someone close to you would want, when dying? What would you want?

Although each of the major transitions Miller’s father undergoes while in her charge—moving to Sutton Hill, then moving into nursing care—are meant to give him more appropriate care and attention, these moves are also very trying, and seem to accelerate his decline. Why is it that transitions, even when made with the best intentions, can prove so difficult? How might one think about and embark upon transitions so that the losses and gains involved are less of a surprise?

Miller discovers that people make judgments about illness, and she even finds that true of herself: “I thought you
earned
a certain kind of death,” Miller writes, as if a good life would logically lead to the ideal, painless death-during-sleep, as if we somehow deserve the death we get. Why is the idea that disease expresses character so alluring? Why are we so tempted to blame the illness on the patient? Why is such thinking dangerously misguided?

Miller’s father was a man of Christian faith who believed that his life belonged to God. How did this belief help him in his life? How did his faith help Miller deal with his disease and death? How did his beliefs and faith lead to what Miller describes as a kind of detachment? How did this detachment affect his relationships, his family, his old age?

Miller indicates that she wishes she’d done several things differently—she might not have chosen Sutton Hill again, and she wishes she’d paid more attention to her father’s stomach pain. How does she deal with such regrets? What good are regrets, and what can be done about them?

Miller, a writer by nature and profession, felt compelled to write a book to sort through and understand her father’s awful disease and death, and to redeem him, the whole man, from the terrible oblivion imposed by Alzheimer’s. How can nonwriters make their own sense of such experiences, and seek similar redemption?