Inside the Dementia Epidemic: A Daughter's Memoir

by Martha Stettinius

  If I pay attention, I see that her responses are all spot-on. Judy is still “here.” But for how long?

  When my mother moved into Woodside, she still walked with a walker, but so slowly that the staff used a wheelchair to get her to activities and meals in a timely manner. For a few months they tried to walk with her as much as possible, but now she sits all day in a facility-issued black wheelchair. I am still uncertain whether she was doomed to lose her ability to walk at this particular time, or whether it happened because a wheelchair is more expedient for the staff.

  I understand the desire for expedience. Her mobility issues have made me reluctant to try to take her out into the world. I did try to find a van service I could pay to pick her up in her wheelchair and take her to my house or a concert. The local ambulance company offers a wheelchair service for non-emergencies, but it’s $80 each way. I know of no other alternative.

  Her incontinence complicates matters. She needs to have her Depends changed every few hours. I don’t want her to feel uncomfortable, away too long from the aides who whisk her so efficiently in and out of the bathroom.

  In any case, she now takes only a few steps from wheelchair to bed or toilet, and walks with a walker only a few times a week for physical therapy. When I want to take her for a walk in the wheelchair, and I try to lift her feet onto her foot rests, her legs are so rigid I can barely move them.

  I find, in a pile of Mom’s old letters, the tiny address book for which I’d been searching. I telephone Mom’s first 12-step sponsor from thirty years ago to see if she’d like to visit. When Mom sees this woman, she shakes with excitement, trembling as I’ve never seen her before. Though it’s probably been twenty years since they saw each other, I’m certain she remembers her. The woman lives two hours away but promises to visit again, and to bring a fiddle so she can play some music.

  On her way out, the woman says to me, “Take care of you,” just like Mom used to do.

  Two weeks later another old friend of my mother’s, a younger woman who used to teach Mom aerobics twenty-five years ago, comes to visit, and again Mom vibrates with what looks very much like recognition and joy.

  In October, Medicaid takes over paying for most of Mom’s care. I write a check from her account each month to the nursing home for an amount equivalent to her Social Security and pension income. Medicaid now pays for her Depends, her Medicare premium, and her prescriptions. Every six months or so, I give Woodside a check for her personal account, to pay for her haircuts. Medicaid allows her to keep only $50 a month in income.

  My attorney advises that Mom keep her Blue Cross and Blue Shield supplemental insurance, as it may give her coverage that she wouldn’t have otherwise; some providers, for example, do not accept Medicaid, and private insurance may cover a medication or procedure that Medicaid does not. If I were to cancel her supplemental insurance, Medicaid would simply require that the money go to the nursing home.

  Mom has few expenses, and her monthly bank balance will hover around $6,000.

  I’m relieved that she’s been taken under the wing of the state, but thankful she knows nothing of her impoverishment.

  It’s December, and the winter solstice is celebrated again in our community. I want my mother to be able to join me as she has for the past five years, but I’m still puzzled by how to get her around. It finally occurs to me to call our city’s bus service for the elderly and disabled. I assume that they won’t have service on a Saturday evening, and I’m right, but they tell me that I can file an application for my mother to qualify for transportation guaranteed by the Americans with Disabilities Act. A special bus with a wheelchair lift can take her almost anywhere around the city, evenings and weekends included, for just a few dollars each way. I’m thrilled, and so grateful.

  Amae

  I find the old report of my mother’s neuropsychological exam from 1997 and read it again carefully in case I missed something. The exam found only a slight cognitive decline at that time—mostly just her obsessive-compulsive attention to detail—but two words jump out at me that I don’t remember seeing before: “bipolar disorder.”

  Apparently the psychiatrist who ordered the exam had already determined this diagnosis. The “hypomania” referred to in the report—her rapid, excessive speech—is typical of bipolar II disorder, a less severe form of bipolar disorder in which the patient does not experience a full-blown manic episode. Why had I never noticed these words? I wonder. I probably found it too difficult to confront the possibility that, like my father and brother, my mother also had a major mental illness.

  This time I force myself to stop and stare at the words, to let them sink in.

  Bipolar II disorder would explain much of the strange, antisocial behavior and irritability that first concerned me sixteen years ago, around the time Mom kicked Ben and me out of the cottage when I was six months pregnant.

  I learn that bipolar II disorder is often misdiagnosed as major depression because patients usually seek help when they are in a depressed, not in a manic, state. What I saw in my mother at that time did lean more to depression—sleeping odd hours, withdrawal from friends, letting the house go. The manic side might have been, in addition to her rapid and excessive speech, how she often could not sleep at all because she felt excited about something, such as an upcoming visit with me. I see from the report that Mom was taking lithium, a common treatment for bipolar disorder.

  I write a letter to Mom’s old psychiatrist to ask if she could tell me why she diagnosed my mother with bipolar II disorder. It would explain a lot of my mother’s behavior, I write, but it’s also important for me to know as the mother of two teenagers who already carry the genetic burden of their grandfather’s and uncle’s mental illness.

  I mail a similar letter to Dr. Galvin, Mom’s old primary doctor.

  I hope to hear from at least one of them, as I don’t know whom else to ask.

  I may never fully understand my mother’s history and diagnoses, and I may have to live with some uncertainty, but it gnaws at me. I wish someone could hand me a definitive diagnosis. It would go a long way not just toward forgiveness—that I’ve reached—but toward peace of mind as I age myself, if I could know what to look for in my own aging brain. As the only person in my immediate family of origin who is not mentally ill, I am fearful.

  • • •

  Today, I want fresh air for Mom, sunshine on her face as she rides the wheelchair lift into the bus, the view through the windows of the snow-covered trees embroidered in white, the gentle bounce of the tires over the rutted streets. We’re headed to a college cinema for a screening of the movie Mary Poppins. Audience members will dress up in character, and the lyrics to the songs will be typed on the screen to help people sing along.

  We wait in the lobby by the fish tank for the wheelchair bus to arrive. I tell Mom that Morgan had a sleepover the night before and that the girls kept me awake until one o’clock, then woke me at seven o’clock. Mom tilts her head to the side and shakes her head almost imperceptibly, like “tsk, tsk,” her eyes wide and locked on mine. I love talking to my mother now because I realize that she understands almost everything I’m saying. Today, though, I think not about our time together in this present moment, but about the years past when we fought and I would never have dreamed of feeling so tender toward her.

  Yesterday I found an old journal in which I’d written about that summer evening in 1995 shortly after Ben and I were married when Mom kicked us out. “You remember that day,” I said to Ben. He nodded and grimaced. I said, “You must have wondered what the heck you got yourself into.”

  “I did. But it was too late!”

  How, I wonder now in the lobby, can I look lovingly at a woman who once treated me, and my new husband, so monstrously? Is it just that she’s unable to pick a fight, that she’s defanged? Have I forgotten her bizarre behavior? No, I remember. But it’s past, and I can see reasons why she did all that she did, whether from depression or anxiety, obsessive-compulsive
personality disorder, bipolar II disorder, or early dementia. The forgiveness I feel comes not from complete understanding, but from acknowledging that I most likely will never find an explanation for all of her behavior.

  Today Mom looks as gentle as a new mother. I feel as if we are reunited in what the Japanese call “amae” (pronounced “a-mah-yeh”), the protective, dependent cocoon of mother and child. Some say that in Japanese culture adults often wish to return to this overindulgent kind of mothering in their relationships to their parents, teachers and bosses, to the state of always feeling accepted and forgiven. Through dementia, Mom and I have returned to that state. We’ve flown back through the years to my first months in her arms as an infant, to those precious hours in the afternoons after her teaching job, when we snuggled together in our living room in the white wicker rocking chair. In our hearts, we are each safe and forgiven.

  But, of course, not all visits are peaceful. One day, as we sit at the end of her hallway next to a large window, I ask Mom if she’d like to give my puppy a dog treat. She nods, and I hand her the small brown nugget. Immediately she pops it into her mouth. I should have known better, I think to myself. “Mom, spit it out, okay?” Puzzlement flashes through her eyes and she furrows her brow but she keeps chewing. Finally she opens her mouth but the dog treat is gone, dissolved on her tongue. The wave of guilt I feel swirls with a sharp pang of sadness.

  Later in the same visit I offer her a cup of ginger ale in one of the small plastic cups the nurses give residents to use for water to take their medication. Mom has been sucking on the bottom corner of her pink sweater, sucking, sucking, as if trying to get liquid out of it. She can still drink from a cup, or from a straw, with prompting, though often she seems confused about what to do with the cup after she drinks.

  “Let me help you, Mom. Let me help you get your sweater out of your mouth so you can drink some ginger ale.”

  Mom shakes her head, and squeezes the cup, buckling its sides. I try to take it.

  “Mom, let go. I don’t want this to spill all over you and all over me.”

  She glares at me and yanks the cup away. The ginger ale spills into a circle on her lap.

  “Great,” I say. “Nice going, Mom.” I know as soon as I say it that I shouldn’t have, that Mom doesn’t deserve this flash of venom. But there it is.

  Mom deflates, as if ashamed that she’s made a mess, and hurt by my words. She lets me take the cup and she drops the sweater from her mouth. She stares at her lap while I find an aide to change her pants.

  I end this visit by sitting with my mother and her roommate Elaine in the common room, talking to Elaine while she pets my puppy on her lap. I’m pleased that Mom seems to enjoy listening to us chat and watching the dog, but I also feel relieved to take a break from paying such close attention to my mother.

  My visits with Mom over the past few years have taught me many lessons I carry into the rest of my life. The foremost is that I can slow down throughout the day and be more aware of what I’m thinking, how I feel, and how I react toward others. I’ve started classes in meditation called “Mindfulness-Based Stress Reduction.” I have worked with a life coach to question my thoughts and the assumptions I make about myself and others.

  I tend to judge both myself and other people harshly, and I assume that others will judge me harshly in return. (When Mom was in her 12-step program she admitted doing the same thing, and called it “stinkin’ thinkin’.”) Even though I lose my cool with Mom once in a great while, as I did the day I said “Nice going, Mom,” for the most part visiting her has taught me how to slow down and think before I react. This has been especially helpful with my teenagers—to listen to them and be fully “present.”

  I am also much more appreciative now of my husband’s personality. I knew he was generous, of course, but I used to think that he was too passive, too flexible for his own good. I realize now that he simply didn’t grow up with all of the drama that I did, that he’s comfortable with himself in any situation and not easily thrown off balance. He gives me a feeling of safety and acceptance that I’d never known before. His example teaches me how to let go of my guilt, worry, and judgments. In 2011 I will face these painful habits head-on by returning to my own 12-step meetings for adult children of alcoholics.

  The immediacy of life with dementia has brought me the gift of awareness—awareness not only of my many imperfections, but of my completeness. Like my mother, I am flawed but whole, challenged but resilient.

  Is It Alzheimer’s, or Not?

  In March of 2011 I read for the first time about a kind of dementia called Frontotemporal Dementia. According to the collection of essays in the book What If It’s Not Alzheimer’s?: A Caregiver’s Guide to Dementia, edited by Lisa and Gary Radin, Frontotemporal Dementia, or FTD, is the most common dementia after Alzheimer’s disease in people under age sixty-five, and usually develops between the ages of forty and seventy. FTD affects the brain’s frontal and temporal lobes, which control behavior, personality, and language. People with FTD typically act inappropriately, insensitively, and with poor judgment, and can also seem apathetic. They struggle to speak clearly and have difficulty understanding instructions. Eventually they lose their speech and comprehension entirely.

  I wonder if Mom has FTD. Her early difficulty with language began with struggles with spelling. As a retired teacher she found her inability to spell words she always knew as particularly dismaying. She started to type letters to me on her computer—the word processor being the only function she could operate—in order to use spell check.

  I learn that early-stage FTD is often misdiagnosed as Alzheimer’s disease, as a personality disorder, or as a psychological condition, “only to later find out,” as the Radins write in their introduction, that “there is a neurodegenerative condition that is the cause of the matter.” Indeed, when Mom’s old psychiatrist writes me back, she admits that while she strongly suspected bipolar disorder, she does not know enough about Frontotemporal Dementia to consider that diagnosis. (Dr. Gavin never responded to my letter.)

  I suspect FTD because what first concerned me about my mother’s behavior years ago was not the memory loss typical of Alzheimer’s disease, but episodes of poor judgment, antisocial behavior, and lack of empathy. That summer day in 1995, when she kicked us out, is a prime example. In her mid-sixties, Mom alienated not only me, but many of her long-time friends, who found her stubborn and insensitive. An old 12-step friend ended their friendship after Mom visited her and refused to stop smoking in her house. Another friend of many years stopped visiting because of Mom’s compulsion to talk non-stop about the importance of investing in mutual funds.

  In one of the essays in What If It’s Not Alzheimer’s?, Murray Grossman calls this kind of behavior in FTD “a disorder of social comportment, particularly a rigid and cold personality with obsessive clinical features.” Mom could show that flat affect, lack of compassion, poor judgment, and obsession with discussing topics of little interest to her listeners. Grossman says that this early period of FTD can be a “prolonged period of subtle but insidious change.”

  Another symptom of FTD is overeating, particularly a craving for sweet food. Mom also now exhibits the “hyper oral” habits of FTD—mouthing and chewing on objects that are not food, such as napkins and clothing.

  As Katherine P. Rankin points out in an essay in What If It’s Not Alzheimer’s?, people with FTD often seem unaware of their difficulties. “Some patients actually become much more easygoing, pleasant, and even more friendly than they were before the onset of their disease.” Most of the time, this behavior also characterizes Mom.

  On the other hand, when I read Rachel Hadas’ book Strange Relation: A Memoir of Marriage, Dementia, and Poetry, about her husband who had FTD, much of how she describes her husband does not sound like Mom: he became “an increasingly ghost-like non-presence,” and, “He is so barely present here and now.” Mom is not a ghost; she is still here. She has not lost her comprehension of lan
guage, nor her ability to communicate in her own way.

  As I write this, brain researchers have developed new tests to distinguish in autopsy the beta amyloid plaques of Alzheimer’s disease from the “tau” tangles of FTD. I wish I could know for certain if my mother has FTD, but it will remain a mystery.

  Later in April, Mom’s brother Jack visits from Louisiana and Ben and I take him out to dinner. I talk about what I’ve learned about her possible bipolar disorder and frontotemporal dementia. He tells me that when she flew down to Louisiana to visit him and his wife in 1997, Mom’s speech was rapid and excessive, just as I remember, and, as she did with me, she talked on and on to him about investing.

  She told Jack her psychiatrist was trying to find the right medication for her. She asked Jack, “Do I sound okay to you? Do you think I’m doing all right now, or not?”

  “Definitely not,” he’d said.

  “If I were prone to headaches,” he tells me now, “I definitely would have gotten one.” He says that while at first she seemed wired and happy, she soon crashed, retreated into the guest bedroom, and refused to come out, just as she would during our visits and when she lived with me.

  Dancing Eyes

  By mid-summer 2011 I tell Ben that we’ll have to plan another “life celebration” this year for Mom’s seventy-ninth birthday. In some ways she’s doing as well as when she first moved into Woodside a year ago, if not better. She does need to be entirely spoon-fed now, as she’s forgotten how to maneuver a utensil, but in her care plan meetings the nurses tell me she’s eating ninety percent of her food, and her weight is stable. Other than the spoon-feeding, and the need for a wheelchair, she shows no sign of further decline. In this first year at Woodside she’s had to go to the E.R. only once, for mild dehydration. She’s more engaged with the rich variety of activities here than she was in her last year at Elm Haven—even if she’s just listening. If someone cracks a joke across the room, she knows it, and laughs.