In the book, you very lovingly and humorously paint a picture of your mother, Betty, who seems funny, stubborn, caring, feisty, and sensitive all at once. But alongside physical decline, Betty also copes with dementia. How is she doing now?
The book takes place during the summer of 2012 when I was alone and without help, taking in and dealing with her changed and, it seemed to me at the time, rapidly declining mental and health situation. I felt pressure to admit her into some sort of care facility before she got worse and our options became much more limited. I really did not want to see her in some sort of facility for dementia or Alzheimer’s patients where she got little stimulation and was forced to continue activities (bridge, piano) that I believed kept her more mentally fit. We couldn’t find a facility to admit her and I have been staying with her for about three years now. In many ways, she has improved. Dementia patients are hounded by depression and anxiety and we were able to medicate her for these issues, along with the drugs she was already taking for her dementia issues. This helped considerably. Also, before I came, she was sort of existing on canned soup and sweets. We were able to really improve her diet. This helped, along with her taking up reading. Nicholas Sparks and Anita Shreve have helped my mother. Everything that distracts them from their condition, any activity or even an animal (our dog helps her) that keeps them out of their own heads helps them. There is also the improvement that comes from having people—me, our helpful caregiver who now comes Monday through Friday—around. Dementia is not considered curable. She goes through bad periods, then improves. It’s changing all the time. But, in general, she is in better condition than I found her in. Now, we are struggling with her cancer. This has been stressful. Given her age and disinclination to participate in difficult treatment, we have tried to choose our options carefully. She has had two rounds of radiation and has responded well, but every few months bring more tests. Cancer treatment is an endurance contest with many trips to doctors and physically and emotionally trying times. When we discover that the cancer has grown, we face a great deal of stress and anxiety on her part. But, all this said, my mother is leading an extremely good life for a woman of her age with her limitations. She is extremely well cared for, gets her hair done every week, still plays bridge and, once a month plays piano at church. I sit nearby while she plays and help organize the music and nod at her when it’s time to start and stop. We have dark periods. We have anger and frustration and sadness, but she has the reassurance of knowing that she is not alone and also some days when things seem relatively okay. She can really pull herself together for guests.
What kind of advice can you offer to other people looking after their aging parents and facing the prospect of finding an assisted care facility?
The best medicines are company and activity, stimulation, anything that staves off depression and anxiety. If you want to help them, give them your time and try and find some activities they still like to do. Get them out of the house. Take them to the movies even if they don’t get what’s going on. They like the pictures. It is extremely important that you focus on appearance. If you are feeling uncomfortable in your mind, you need to look in the mirror and see someone you feel good about. I jokingly say that the best medicine for an older woman is a visit to the hairdresser and two gin and tonics. No one feels good if they are not looking right, especially to themselves. Buy new clothes. Try your best to let them have choices about things, though you must know that there are times when, in order to preserve your own sanity and time, that you are simply going to have to lay down the law as lovingly as possible. Be prepared for rebellion and some anger. I have given up on moving her to a facility. If this is one’s plan, then one absolutely must not delay. Most facilities offer stages of care, but few admit people who are only eligible for the later stages. To enter the best ones, the elders must start out being fairly self-sufficient. My mother had advanced beyond that stage and, because of her increasing inwardness, the facility we investigated felt that she was not socially able to interact well and be frustrated. My advice is to look carefully at your parents’ situation around age seventy and plan for how to deal with the next twenty years. Dementia will be a given at a certain point in almost all cases. If at all possible, factor into your own plans, that absolute reality that a large chunk of your time is going to be spent dealing with your parent IF you expect them to have happiness and not decline. Plan for your parents as you would plan for a child. Look carefully at the financial picture. You will decline along with your parent and fall into your own anger and depression if you are not certain that he or she is not taken care of. You have to prepare for what aging is going to do to the parents and to you.
When did you decide that you wanted to turn your experiences caring for your mother into a book? Is the finished product different from what you originally envisioned the book to be?
I didn’t ever just decide. It sort of happened gradually, though I have always wanted to write something. This book grew out of my isolation and loneliness. I have few friends here anymore and little family around. It began that first summer when my mother lost her driver’s license. My mother is really American in that she thrives on motion, mobility, going here and there. Too many days housebound and she gets very blue. When she could no longer drive, I found myself mourning the loss of her independence as much as she did. I wrote a little piece on Facebook about the days when I was a kid and my mother drove me to kindergarten while we sang along with pop songs on the radio. It got hundreds of responses. So, as things happened that were funny, or moving, or upsetting, I wrote them down. Writing down gave me distance; it gave me some remove. The card table where I do my freelance work is right by the couch where she usually sits. I was literally transcribing as we spoke. I posted some of this stuff and continued to get a lot of responses. I decided to write a book, but it kept changing. My mother and I have always had a funny, bantering, unique way of expressing ourselves and loving each other. It hit me that we were kind of an odd comedy team, although there were a lot of feelings behind the jokes. I wanted to get our humor. I wanted to honor our love and our long commitment to each other, but I also wanted to explore our silence around certain issues. My mother was born into Depression-Era America and has always lived in a rural area. She was never taught to express her feelings. She has lived through many changing times and I think has become a little less able to change with them. My sexuality was not something she was trained to deal with. We have had an amazing relationship, but this one thing, this issue that is so central to my life, well….we just didn’t do it right. I didn’t know how to discuss it with my parents. I didn’t want to hurt them. They lived in a kind of denial for a very long time. Sex is not much discussed in my family. Homosexuality was taboo. The roles of men and women in this place remain rigidly enforced. As the book drafts piled up, our silences and secrets—all the things we never said, the intimacy and closeness that we did not get and which I regret—became more central. Also, as I began to realize the benefits of the caring I was doing for my mother, as I saw what I was getting back, I started to take in the fact that caring for others is a bit of a dying art in our current American reality. There is much of the old America, Betty’s America, that we are losing. Some things we are happy to be free of, but I do believe that as our politics change, as the demands on all of us increase, as the world becomes more and more complicated, we are forgetting that there are people around us who need help, kindness, time, concern, care. I think this book ultimately became one about kindness and caring.
What do you hope readers will most respond to in Bettyville?
You know, I am a journalist. I am obsessed with the news, read a lot, watch TV. I am conscious of people dying in Syria. I worry about the Africans who have Ebola. But my attention wanders most unceasingly to the everyday struggles of average, normal people around me—people fighting for their lives and those of others without attracting much attention, all the tough, real life, ordinary battles. My mother is struggling to hold on to her mind, independence, self. It is a really hard fight, fought on many fronts, moment by moment. I want people to feel my mother’s courage; I want them to respond to this human story. Her struggle never stops moving me. I want people to remember the images of my mother trying so desperately to hang onto words, hymn numbers, her ability to play the piano. The subplot of this book may deal with the complications in our relationship, but the point is the fact that she leaves me with this example of strength, resilience. She never really asks for much. She goes on. She takes the step even if she is frightened of falling. She makes so many efforts every day to just get through in a normal way. She keeps on. I would like people to have these pictures of my mother and her courage in their hearts when they leave Bettyville. We are scared of being old; therefore, we are scared of the old. They make us scare and uncomfortable sometimes. I want people to look at their Bettys and see the human struggle of their lives.
Also, there is this: Taking care of someone is difficult, but you take a lot away; you gain something very important, a kind of humanity. It’s on the job compassion training. A lot of times, it’s not thinking about yourself and trying to go into someone’s head and figure out what will ease their pain. Becoming more human, more compassionate and empathic very often involves doing something hard. That’s the way it goes. But you come out changed in hard-to-articulate ways.
Although both of your parents seemed to have some idea that you were gay, you never actually discussed this fully with either of them. Do you wish now that you had?
While in college, you decided to join the Gay People’s Alliance, which was essentially the first time you had interacted with other young gay men and women. Can you describe what this experience was like for you?
When I was a teenager contemplating an attempt to enter gay society, my fantasy was something like: I would walk into a room filled with handsome, witty, and intelligent men who would immediately make me part of their circle. In ten to fifteen days, I would be living in a beach house in Malibu with a good-hearted guy who looked like Magnum P.I. and had a large stock portfolio. This is not what happened. Going to that meeting was difficult for me for many reasons, most especially because it showed me that I had no idea what was going on inside me. I had no idea what I was carrying around in my head. I thought I would walk into that meeting with no problems. I wasn’t nervous or scared or worried when I contemplated it. But when I walked in that room, I was overcome with anxiety, guilt, and nerves. I guess what hit me was a kind of a panic attack. One of the reasons I wanted to include the gay material in this book is that I think that straight people still don’t get the things that young gay kids have to overcome in order to live without guilt and find a way of living outside the conventions that they are comfortable with. As a boy, I went to the library to try to find out who I was and what that meant. I am interested in the ways gay children find and enter their lives and their processes and journeys toward figuring out their identities. People think this is a rare problem now. It is not.
Shortly after college, you moved to New York City in order to find a job in the publishing industry. What was it like moving from Small Town America to a major city like NYC? And when you moved back years later, did you notice any changes in your hometown?
Again, I was sort of unaware of a lot of what I was feeling when I moved to NYC. I think I was so scared and nervous that some part of me protected me from actually feeling and being aware of all that. It was all underneath. I looked okay. I didn’t look out of place, really, but in many ways, I was. I was self-created, sewn together from things I had heard or read or seen and not so sure, at some level, if I was going to hold together right. I was very unpracticed at self-presentation, perhaps the city’s most important requirement. If you grow up in Manhattan with sophisticated, professional parents; if you go to the right schools, etc, you learn the game, the way successes happen, the way to subtly put yourself forward, flatter, make money, gain attention. I didn’t know all that. My town didn’t work that way. I thought that the way to make it was to work harder than anyone. I was also rather shocked by how direct people were, especially in the workplace. They got mad, cursed, your stuff was terrible, whatever. They didn’t feel bound to be “nice” or “polite.” That was all new to me. Personally, I see now that I had no understanding of gay life. I was a total romantic. I didn’t get a lot of the undercurrents, hierarchies, and realities that define gay life. I certainly did not know how to use sex to get what I wanted and I was almost completely unable to let people know if I was interested in them.
Small towns such as Paris and Madison have changed a lot, yes. The merchants are gone and because of that, everything has shifted. But most of the changes in rural America mirror the larger ones that have so affected American life. I think a lot of the things that have defined community are eroding and also a lot of the “arts” and traditions that have graced small town lives are less seen. No one makes quilts or embroiders. There are fewer flower gardens. There is less sense of people reading about the world outside. There is less storytelling, but the last thing I want to do is come off as a city sort looking down his nose at the world I grew up in. I love Missouri, and these towns, and these people. There are a lot of very good intentions. The stereotypes that people in cities have of conservative, religious people in small towns is very simplistic and coarse. People aren’t interested enough in rural American life and the problems here. For years, I have been trying to get reporters to come here and write about it. They’ll go to India, the Middle East, wherever. But they have a prejudice against places like mine and are completely uninterested in modifying their superficial impressions.
Since then, you’ve gone on to work at Simon & Schuster, Henry Holt, Houghton Mifflin, and the magazine Vanity Fair. What drew you to the publishing field? After so many years as an editor, what made you decide to become an author yourself?
When I was in high school and college and started reading seriously, I discovered that it was possible to make beautiful things with words and I also began to realize that it was possible to actually put different human voices on the page. I listened to music a lot. I realized that you could be a person on the page in the way that Joni Mitchell was in her songs. When I was younger, I had thought everyone sounded alike when they wrote, that this was somehow the goal, to just be “correct” and grammatical. When I started discovering the capabilities of words, I got interested in writing and making my living through that in some way. I wanted to be an English professor but I couldn’t speak enough foreign languages and I also was pretty hopeless at locating books in the library. I hate research and simply could not comprehend scholarly articles. At some point, someone mentioned going to a six-week publishing course and I knew immediately that this was what I should do. I have always loved the various tasks of publishing—catalog copy, flap copy, making presentations, working on jacket art. I love the task of editing, of making things better. I also love the people. Publishing used to be the home of many great, colorful characters. Now there are a lot of suits, less passion, about actually getting the books right but that’s America now.
I always wanted to write and I had carried all these little bits around from the past in my head. I had really been, unbeknownst to myself, compiling quite a collection of scenes and images. The journey of my mother gave me a kind of narrative on which to hang a lot of the pieces of memory I had been carrying, shining up, thinking about. Being here, everything fell into place. The feelings around my mother and about being back here set something into motion and the book happened. For the first time, writing wasn’t hard. I love the process of creating a book, of finding out what is on your mind and what the book wants to be and say. It’s a magical process and I am very grateful that the gods obliged and helped me on my way this time.
Did you tell Betty you were writing this book and if so, what was her reaction?
When my mother wants to know something, she seizes upon it. She’s very quick still on many occasions. When she doesn’t want to know, she clams up, ignores, refuses to speak. I told her about the book, tried to explain it, tried to get through to her as best I could but she doesn’t want to take it in. I’m very, very conscious of her feelings and privacy. I am trying to be as honorable as possible. The first discussion I had with her after the book was sold led to her knitting her brows and saying, “You know you’re going to have to pay taxes on that money.” That was her biggest concern.
In the book, you write very frankly about your struggles with addiction, your avoidance of intimacy, and your fears of being a gay man in the midst of the AIDS epidemic. Was it difficult to write about these topics so openly?
It wasn’t difficult to write about them. I seemed to have been in some kind of denial, however, about the fact that anyone was actually going to read them—especially my family and friends here, in Missouri, who are going to have to get to know a completely different me. I think I was in total denial about the personal nature of what I was writing and the disturbing impact these things would have on those who love me who I have not allowed in to certain realities that have defined my life. The minute that I could no longer change the manuscript—the same time family members started reading it—I fell into terrible panic and anxiety. I’ve been in agony; I’ve always been a bit of a drama queen. Living here up close and personal with my mother in her condition, this is my reality; for three years her way of being has been my day to day. It wasn’t until others started to read it that I could take in the fact that my candor about her condition (and there is a great deal I have held back) was shocking to some. I have been having some very, very uncomfortable days and nights, living in fear, not sleeping, attacking myself for all kinds of reasons. Memoir is a powerful form. More comes out than you are immediately aware of and no matter how hard you try to shade things in a certain way, people come up with their own impressions of what you mean. I’ve tried to leave the reader with some suggestions about things I don’t know for sure. I want them to feel the same “suspicions” I have about things and be left wondering as I have about certain people or events. But in that territory there is so much room for people misunderstanding and so, well, I will say this. Memoir, putting yourself on stage, creates a lot of waves in ripples in the currents of your mind.
What are you doing now and what’s next for you?
I’m doing a bit of freelance editing, worrying about this book, playing with some short pieces. I have discovered the story of a portrait photographer in a small town in Missouri called Monroe City. She worked mainly in the early part of the century and was a very interesting character. I have always been interested in the St. Louis World’s Fair of 1904. I’d like to send this woman to the fair in a novel. I don’t know what will happen to her there yet. I am so grateful for the gift I have been given with Bettyville. I think it’s a precious gift and maybe I’ll be lucky enough to be given another story. Thank you.