Inside the Dementia Epidemic: A Daughter's Memoir

by Martha Stettinius

  Those good memories do not stand in the foreground. I remember instead a dreary atmosphere, shades of gray like my stepfather’s old farmhouse, filled with unhappiness. Bats once flew through my second-floor bedroom, mice and squirrels lived in all the walls, and moles burrowed up through the floor inside the cabinet under the kitchen sink. I was afraid to go into the kitchen at night lest I see the moles’ tiny beady eyes looking up at me. In my bedroom, the ancient, stained floral wallpaper peeled off in sheets.

  In the outside world, my mother flourished. She worked at the local elementary school as one of the first special education teachers in the state. She loved the freedom of being a pioneer in a new field, and the intellectual challenge of creating her own curricula from scratch.

  When I was in third grade, my mother left my stepfather and rented a ski cabin in Vermont, where the two of us lived by ourselves for my third-grade year. She found a job teaching at the school. By my fourth-grade year, Mom and my stepfather must have reconciled because we were back at the Adirondack house.

  The summer before my sixth-grade year, Mom and I packed our belongings and moved over two hundred miles to live with my grandfather, his new wife, Laura (my grandmother had died three years earlier), Laura’s eighteen-year-old son, and her elderly mother. My mother and I shared a queen-sized bed in their tiny house and tried to stay out of the way. I did not know it at the time, but my grandfather was dying from lung cancer and heart disease.

  A few months later, my grandfather died and left my mother enough money for her to buy the two of us our own house two doors down, with new furniture and wall-to-wall powder-blue carpeting. Mom took a job teaching special education in an elementary school the next town over. Later that same school year I had to move back in with Laura and her mother by myself, temporarily, when Mom went to the hospital for a radical mastectomy. At forty-four, she had found a lump in her right breast. She told me years later that she found satisfaction helping the other women in her breast cancer support group. She never spoke to me, though, about her mastectomy, and ten years passed before she would let me glimpse her scar.

  Mom was forty-six when she had herself committed to an alcoholism rehabilitation program in St. Paul, Minnesota, one of the best in the country, she said. She would be gone four months. I would stay with Laura again. Mom asked me to sign an official form from the center saying that if she left the program early, or if she ever picked up another drink, she authorized me to have her sent back to the center. I had just turned fourteen.

  Toward the end of her first month at the rehab center, the program directors asked me to fly to St. Paul on my own for “family week.” I was the only representative of our family. I was not allowed to see Mom by myself; I had to go in with a counselor. In a small room with yellow curtains on the one window, a gray tiled floor, and black, metal chairs, Mom sat on one side of the room, I sat on the other, the counselor in the middle. Mom was to begin by listening, not talking.

  “Martha, tell your mom why you feel angry at her,” the counselor encouraged me with a smile. “It’s okay.”

  Whew, I thought to myself, this man has no idea what a huge request that is. As I searched for something to say, her face relaxed but her eyes burned brighter, flaring like a lighter.

  Finally I said, “You never listen to me. You’re always angry about every little thing I do. You’re always right and I’m always wrong.” Hesitating, I added, “You don’t let me talk back. One time I tried to talk back, when I didn’t want to sweep the basement stairs, you slapped me.” I don’t remember what else I might have said; my heart was pumping too fast for my brain to store the words.

  When it was my mother’s turn to talk, I could not hear. My anger had unearthed itself and expanded to fill the room like a mass of thorny vines, leaving no space for me to listen. I already knew that she found my behavior annoying, that I angered her. That was nothing new, after all, but my speaking up for myself—my “talking back” and being listened to—was momentous. This meeting proved to be the first step of what would be years of struggle and growth between us.

  After the in-patient treatment program, Mom was required to live in a halfway house in St. Paul for three months. She had to attend 12-step meetings every day, and walk two miles each way to a full-time job in a factory (what kind of factory it was, I don’t know). I still have a six-page handwritten letter that she wrote after one of her shifts. A portion reads:

  Dear Martha, my Honey,

  I waited every day for your letter to come. I was so hurt and disappointed each day not to find it. Then today it was here!

  My roommate’s alarm went off at 4:45 this morning. I jumped out of bed thinking it was mine, and she never woke up to turn it off. I was pissed, but I didn’t tell her. I will have to tell her if it happens again. That’s a little scary, or a lot scary, but I have to say things to people about my being angry. I’ve stuffed angry feelings all my life and have been a “good girl,” and it’s gotten me in a mess. The anger I used to turn on you was mostly alcoholic anger, brought on by the drinking or the need for a drink, and the great amount of my angry rage was built up from little angers not expressed during the day to other people, and then I blasted it all out at once on you. I am ashamed of that. I know how I hurt you that way...

  I have to walk to work. It’s a 25-minute walk and it’s so damn cold and icy and snowy and rough walking and it’s still dark, and I’m all alone and I hate it all. The factory is noisy and boring, boring, boring, and dirty, and it’s hard to have someone to talk to because of the noise. It’s doing the same thing over and over and over from 7:00 to 3:30. My mind begins to run on memories and wanting to come home and knowing I can’t because I’m not ready and I’m told you need time away from me.

  I know, I’m feeling sorry for myself. I have been so afraid that you had stopped caring for me, but your letter tells me that you do care about me and miss me and love me, and I am so grateful for your letter telling me all those things. I’m willing to take these three months to get better, but the kind of help I get here is not the kind of help you get at a hospital.

  You had a taste of the kind of help I’m getting when you were in Family Week group. “Though love” is what it’s called—and it hurts and is lonely and confusing...

  They say I have to hurt before I can change my behaviors that lead to my drinking so I won’t have to drink anymore, but I feel so unsure of what I’m doing. I’m supposed to share my feelings by telling someone right away every time—that’s the way to get better and stay better. I find it hard to feel anything, know what I’m feeling, and say it.

  I wish I had you here so we could both practice all this together so we could be really close. I hope you will get into your recovery program so you will be into sharing your feelings with me when I get home.

  You are such a great girl. I am so proud of you in many ways...I love you so much and want to be close to you always. You are the most important person in the whole world to me.

  Kisses and fuzzies,

  Mom

  I don’t remember receiving this letter, but I’m sure that, at fourteen, I would have felt baffled by my mother’s feelings. I certainly would have recoiled at her desire to “share” her feelings with me when she returned. Deep in adolescence, I was too far into myself to meet her halfway in recovery. Then, when I left home at sixteen to go to college, we lost any remaining time to practice new ways of being with each other.

  I wish I had found this letter years earlier. I would have understood better why my mother felt it so important in my adulthood to express her anger right in the moment, usually without self-reflection to temper it. I tried to support her in her need to speak truthfully and to care for herself, but the constant expression of her displeasure felt as if she was dumping her feelings on me—and she didn’t necessarily want to listen to my feelings in return. Only in my early thirties did I press my mother to hear my side. I encouraged her to think about why she felt angry before she expressed it. For a f
ew years, she tried. Then the dementia started, and much of the patience and insight she gained was lost.

  For fifteen years, she went to 12-step meetings for alcoholics and adult children of alcoholics, and then counseling.

  As a teenager I followed my mother to my own 12-step meetings for family members of alcoholics. In those church basements, I learned that I was not alone, that other kids had the same experiences, and that I was a separate person from my mother with a right to my own feelings. I learned that, as a result of growing up with an alcoholic, I had built up my own defenses and backward ways of dealing with people. In these groups I also found support and encouragement in the stories of others. In the presence of people from all walks of life leaning over their coffee and hot chocolate, watching and listening intensely to each other, I first sensed a higher power.

  As I grew into a young adult I pictured this higher power, God, or “Good Orderly Direction,” as some in the program would say, not as an entity above us but as the grace I felt around those tables, soothing energy flowing like a radio wave from soul to soul, neighbor to neighbor, linking and uniting and amplifying the best parts of ourselves.

  Though Love

  With my old journals, I find a letter my mother wrote to me after I dropped out of college and visited briefly:

  I’ve thought about your idea that I don’t like you, and what I think at this point is that what is happening is the natural pain (on both sides) of our separation in your growth toward independence. It’s a normal, painful time for both of us, and perhaps it’s taken us both a bit by surprise. It will take some growing time for both of us to establish ourselves on a new footing with you and I living our own separate lives with all the leaving of past ways of relating, and fumbling through the new. Remember here at the cottage after you interviewed at Elmira College last September, how it hit us that our past life together was ending? How we cried? What I didn’t know then was that this separation would come in stages, and here we are at another one of those stages. I am crying now as I realize it. But, it must be—for both of us. It’s so hard to let go of you. I guess it’s a good thing we got as angry with each other as we did early this month—it forced the separation that has to come. I mourn losing you, though, and only hope upon hope that we can grow toward a new and good relationship.

  It was awfully hard for me to have you just “stop in” last Saturday night and then leave again. You held yourself away from me physically and verbally as if trying to maintain that person who is you against an attack of my “mothering.” But I was so glad to see you! I thought of how it must have felt the same way to my mother when I left home and then was a visitor. It’s a wrenching that has to happen. And I do want to do it well, Martha, so that you’ll keep coming back.

  I worry about you off on your own, if I let myself think about it. It’s hard to let you make your own mistakes. But it’s the only way, I know.

  Hope all is going well for you.

  Love,

  Mom

  Should she have worried? Perhaps. At the time I was a part-time minimum-wage aide in an elementary school who couldn’t afford a 30-cent box of spaghetti.

  I wish that my mother had not given up so easily on our relationship. Sure, I was keeping my distance, but her hands-off attitude reminds me of the “tough love” she talked about in her 12-step program, the philosophy that to love me she needed to let me make my own mistakes. I know she meant well, but she took it to an extreme. As a young adult living on my own, I could have used a whole lot more guidance. Mom was never particularly nurturing, but I needed her to try. It’s a wonder I survived those early adult years of not enough money, too many men, and too little birth control, without permanent damage. I fully intend to offer my own children more guidance when they become young adults, even if they resist.

  At eighteen, I moved three hundred miles away to New Haven, Connecticut, with a boyfriend and fifty dollars. After three weeks, we broke up and I ended up sleeping on the couch of a man I met in a bar. I never called Mom to rescue me.

  The one time I did call my mother to help me, it was right after I dropped out of college and had hitched a ride with a friend to work on a dairy farm in Pennsylvania. The dairy was run down, filthy, about to be closed by the health department, and when I realized that all the employees slept in one large bedroom with bare mattresses, I asked to use their phone. Mom drove down to get me but she seemed more annoyed than worried.

  Over six years in New Haven, I held about two-dozen part-time and full-time jobs. I moved from rented tiny rooms swarming with cockroaches, to sharing nicer houses and apartments, to renting my own apartment on the third floor of a brownstone. On Thanksgiving, my mother would drive to see me and roast a turkey in the various cramped kitchens of my boarding rooms and apartments. More often I’d take the bus partway and she’d pick me up and take me to the cottage for a few days. We would argue, but the only anger allowed was hers. Once, when I slammed the car door behind me after an argument, she threatened to call the police. A few times she just kicked me out of the cottage. Without a car, I had nowhere to go and she’d drive me in silence to the bus station.

  Mom would tell me that when I was angry the look in my eye and the tone of my voice “could be quite unpleasant for those on the receiving end.” She was right, but I didn’t give her much credit for saying it because I thought she had the same problem.

  For Christmas the second year after I returned to college, when I was 26, Mom gave me a blank album with a note attached:

  I hope you will use this album to hold copies of all the good things people have said about you.

  Then, on days when “Nobody loves me, everybody hates me; I’m going to eat a worm,” you can open this up and remind yourself what a fine person you are.

  Love and kisses,

  Mom

  It’s hard to stay mad at my mother when I can see that she loves me like that. I know she intends only good.

  False Relief

  By the end of May 2005, when my mother has lived with me for three months, I meet on my own with the psychologist. She tells me that the fact that Morgan hates having Grammy at our house “seals the deal”: To protect Morgan’s self-esteem, Mom “must live elsewhere.”

  She explains how difficult I might find it to arrange help for Mom, whether at the cottage, at the senior apartments in a nearby town, or here in the city. Arranging care long-distance, even from across town, would be really stressful for me, she warns: “Aides don’t show up, the agency will be calling you all the time; you’ll be on the phone left and right making sure your mother has all the help she needs.”

  I ask her where she’d recommend that Mom live and she says there are two assisted living places in town that can handle mild dementia. “Your mother can have a good life in assisted living,” she says. “When you do get together you will be able to just enjoy each other’s company.”

  I nod, picturing Mom and me going out to eat and to concerts, and how I could drop her off afterward into someone else’s capable hands. Though I don’t make a decision right away, the thought lightens my spirit.

  Every development that follows makes the decision seem inevitable. Soon, my mother shows another stage of her deterioration—hostile reversals and more accusations.

  Near the end of May she says, with a gleam in her eye, “I want to move back to the cottage. At least until next winter.” Her voice is flat. “I’m tired of your constant negativity.”

  My stomach contracts; I can feel my pulse in my skull.

  “Well, I’ve had it with your stubbornness and put-downs,” I say.

  With a deep breath, I race on: “If you move back to the cottage, your friends and neighbors there will have to make all the arrangements. They’ll have to come here and move you back. They’ll have to arrange rides for you. They’ll have to find someone to shop for you and clean and cook. They’ll have to make sure there’s a railing on the footbridge.

  “I’m not willing to help you long-distance,
Mom. I can help you only if you live here in town.”

  As I spew all of this I know perfectly well that Mom cannot make these arrangements to move. She cannot plan anything beyond a phone call or two. There is no chance that she will go back to the cottage on her own.

  Mom glares at me, then looks down at her book and waves me away.

  At the computer I research “guardianship” on the Internet, in case Mom calls her friends and convinces them to help her return to the cottage. If she were to insist on moving, and I refused to help her, I would be keeping her here against her will. I might have to go to court to prove that she can no longer make these kinds of decisions for herself. I understand from my support group that my having Power of Attorney is insufficient; without guardianship I cannot stop her from trying to move back to the cottage.

  I call Bill and Susan, Mom’s neighbors at the cottage, to warn them that Mom might call them for help to move back there. I ask them to please tell her it’s a bad idea. I tell them how she can’t drive, shop, cook or clean for herself, how she can’t pay her bills. “Of course,” they say. “We didn’t realize how bad it was.”

  After dinner, Ben and I talk for a long time. We decide that we’ve tried our best but it’s not working. We will give Mom a choice and a deadline: She must make her own arrangements to live elsewhere, or try a “respite” stay, a temporary two-week visit, at one of the two assisted living places in town. We knock on her door then stand in her doorway together and tell her that she must decide what she wants to do within a week. We know that time means little to someone with dementia, but a deadline will tell Mom that she must make a decision soon, that she cannot delay. We tell her that we can help her visit the assisted living homes to see which one she likes better. Mom listens in silence, then says, “Just go.”