My Mother's Prison
5.5 million Americans are diagnosed with Alzheimer's—but the effects are felt by many more.
My mother was crying as she broke the news: My sister's 18-year-old son had been killed in Iraq. It was late at night, and I was in bed at home in New York City. She had called from Oregon. It was February 2003, and as groggy as I was, I knew there was no war in Iraq. At least, not yet. Sure, the news was full of stories about the buildup to war, but there was no chance that my nephew was in harm's way. I assured her that her grandson was still in high school and was safe at home. Then I hung up, shocked, depressed, and worried.
My mother was more than just a confused grandmother overcome with grief. She was a federal judge whose mind was her greatest asset. It had been her ticket out of Klamath County, Oregon, a rural, sparsely populated chunk of timber-and-cattle country on the California border. Too poor to pay for college, she graduated Phi Beta Kappa with the help of scholarships and grants. A master's degree, marriage to my dad, and three children quickly followed.
In 1963, she applied to law school. Seven years later, she was appointed to a vacancy on the state court. Ten years after that, Jimmy Carter nominated her to the federal bench. But after hearing her sob into the receiver that night, it dawned on me that her mind was betraying her.
The next day, I called Patricia, my mother's law clerk, and told her I didn't think my mother should sit in a courtroom anymore. She agreed. I didn't tell my sister what had happened, but I started to use the A word, if only with myself.
Though I lived a few time zones away, I'd recently become aware of my mother's deteriorating mental health. Often, when we talked on the phone, she'd ask the same set of questions over and over. Once she sent a birthday greeting without the card, just the empty envelope. Another time she told my oldest son that she'd gotten him a telescope for Christmas. It never appeared, even after we questioned her about it. It was irritating more than anything.
Two months after the Iraq incident, my mother flew to New York to visit. She wasn't alone; she came with Bob, her "dance partner." My father had died 15 years earlier, and this was the quaint euphemism she used with me, even though the two of them had been living together for the past 10 years. Outside the law, my mother's sole passion in life had become ballroom dancing. And Bob was a good dancer. Tangos, waltzes, the foxtrot—they danced them all, the lanky, white-haired Bob leading and my mother following. It didn't seem to matter to either of them that he was married and a lifelong member of the Mormon church.
Although I had seen her recently, the change in her behavior was remarkable. She seemed confused, disoriented, lost. While walking through Central Park, she saw someone with a small white dog, a bichon frise. She turned to Bob. "Where's Tippy?" she asked with concern. Tippy was her own bichon frise, and as I listened somberly, Bob patiently explained that Tippy was at home in Oregon. An apologetic laugh followed, a laugh I would come to hear often over the next several days as she tried to cover her flagging ability to remain oriented in space and time. But stumbling over space and time wasn't the worst of it. What really rocked me was the moment I found her looking at my 8-year-old son with blank, lifeless eyes. It was as if she were regarding some inanimate object instead of her own grandchild. Of all the indicators that something was going horribly wrong with her mind, it was those vacant eyes that scared me the most.
That August, 4 months after Mom's trip to New York, I got a call from Patricia. Something had happened, something that caught us all off guard. The Judge, as Patricia referred to her, had abruptly and unceremoniously thrown Bob out. For the first time in years, my mother was living alone. Given what I'd witnessed in New York, the news was unsettling.
Coincidentally, I was scheduled to fly out to the West Coast at the end of that week to attend my 30th high-school reunion. I'd planned to make a family vacation out of it, taking my wife and two of my youngest children with me. Now, fearful that my mother's life was suddenly unraveling, I put the vacation on hold and drove straight over to see her as soon as we landed.
Patricia met me at the door. She smiled grimly, revealing braces on her teeth. They made her look impish and far younger than her 50 years. I steadied myself and went inside. A thick layer of dust covered everything, and cat fur floated through the air. And the smell—Jesus. Once my eyes adjusted to the dim light, I could see the fine-china dishes full of pet food placed haphazardly around the house. They were perched on windowsills, occupied chairs, and covered the dining-room table. Half a dozen more littered the kitchen floor. Added to the bouquet of rancid meat was the pungent smell of an unchanged litter box. I was horrified. It was as if some crazy old lady inhabited the place instead of my own mother.
From the doorway, my wife and kids watched me with apprehension and dread. I led them around to the backyard where once flourished a colorful and fragrant garden. No more. Everything was now dead or dying–untouched, it appeared, for several years. But at least we could breathe. When she finally emerged from the detritus within, my mother seemed unsurprised to find us there. She barely said hello before wondering aloud whether Tippy might be hungry.
"You want some Atta Boy! baby? Are you hungry?" The dog's tail wagged happily. "C'mon, Tippy, Mama's gonna feed you."
I caught Patricia's eye. In a whisper, she confirmed my worst fears: This was serious; this was the big one; the wall had finally been hit. Just the day before, the Judge had gotten lost while walking Tippy. With Bob out of the picture, there was nobody around to look out for her. She was stranded, marooned on some goddamn cul-de-sac in the middle of suburbia, helpless to fend for herself.
I would have to remain in Oregon. Although I have two younger sisters, they'd severed all ties to our mother years before. Aside from her reclusive brother, I am the only family she has. So it went without saying that my family would fly back to New York without me.
Imagine yourself 48 years old and living with your mother. Now imagine you have to put your own life on hold while you assume the duties and responsibilities of hers. Furthermore, there is no downtime. No weekends off. No vacation days. You're there 24/7, and by "there" I mean there, on point, with her, engaged. But I was lucky; I'm a writer and was between projects. I could afford the time. I shuddered at the thought of people less fortunate who had no choice but to dump a stricken parent in the first nursing home that had an opening—that is, if they could pay for it. Lucky, too, was the fact that an appointment to the federal bench is forever, meaning that Uncle Sugar would continue to pay my mother's salary until the day she died. And unlike millions of other Americans, she had health insurance to blunt the cost of her illness.
Still, my staying in Oregon for a few weeks or months was a stopgap measure: I had to come up with a plan. The first thing I did was conspire with Patricia and my mother's secretary, Mary Jo, to have the Judge come down to the courthouse twice a week. Her day would consist of shuffling papers she could no longer comprehend, broken up by a long, unhurried lunch. This would allow me substantial blocks of time to figure out how I was going to deal with the harsh new realities of her life.
I needed a crash course in Alzheimer's care, and I needed it quick. I began by calling a good friend in California whose father had recently died of the disease. From there I sought out advice from local professional organizations and support groups. I queried hospitals and clinics. I made appointments with gerontologists and elder-care attorneys. I asked intimate questions of people I barely knew. I intruded on strangers. It didn't take long for me to learn far more than I wanted to about the grim realities of growing old in America.
Even as the days turned into weeks, she never caught on, never questioned, never exhibited any behavior that led me to believe she knew what I was up to. The only evidence I ever found that she was aware of her own situation was an Alzheimer's newsletter I discovered tucked in a sock drawer. How long it had been there, I could only guess. Even my presence didn't arouse more than an occasional question.
"When are you going home?" she'd ask.
I always responded the same way. "In a few days."
"I'll bet you miss your family," she would observe.
"Yup. I sure do." And that would end it. That was all she ever said about the fact that we were living under the same roof for the first time in 30 years. We quickly fell into a routine. She would get up in the morning to feed Tippy before going around and methodically opening all the curtains. She would eventually get to the spare room, where I'd set up camp, opening the door and jumping with fright when she saw me. I'd greet her as cheerfully as I could, already worried she might not know who I was.
"Oh, I forgot you were here," she'd say with a laugh. Then she'd climb back into bed while I got up and fixed her a piece of toast and a sliced apple. How the rest of the day unfolded varied, but this morning ritual, once established, never changed. Only once did she comment on it.
"All those years I fixed you breakfast, and now you fix me breakfast," she observed one morning, never questioning the reversal of roles. I patted her on the head like a child, making the transition complete.
Determining if the disease is present requires examining a sample of brain tissue for plaques and tangles. This extremely invasive procedure is infrequently performed on living patients. Therefore, doctors can make a diagnosis of "possible" or "probable" Alzheimer's only by process of elimination. They test for anything that could cause similar symptoms, including Parkinson's, Huntington's, and diabetes. If the tests prove negative, your choices narrow until there's nowhere else to go, nothing else to explain the erosion of memory, the dementia, the inability to follow directions, the paranoia.
The doctors we consulted had found nothing—nothing diagnosable, anyway—so they did what any good practitioners of Western medicine would do: They prescribed drugs. If toast and a sliced apple started the day, then a fistful of pills ended it. Often, my mother would hold the pills in her hand until they dissolved into a gooey mess. To hell with it, I'd think, it's not going to kill her to miss a night. Then I'd throw away what was left of the pills and clean her hand, and we'd carry on with whatever we had been doing, which was usually watching the news on TV. It was the only thing I could get her to sit still for.
Speaking of pills, I should confess that after a few weeks of this routine, I began to self-medicate. I'd torn up my elbow playing basketball a few weeks before my high-school reunion. While emergency-room x-rays had revealed no breaks, I'd damaged the tendons and ligaments enough for the doctors to give me a sling and a bottle of painkillers. The sling I'd dumped after a few weeks. The painkillers, most of which I still had, were in my suitcase.
It says right on the little plastic bottle that you shouldn't mix alcohol and prescription painkillers. It also says you shouldn't operate heavy equipment. While I heeded the part about machinery, I began to combine rum and Percocet in a nightly ritual of escape. I know my self-medicating sounds hard-core, but my mother's relentless pet feeding could really jangle my nerves. The experts call it sundowning. Although no one knows exactly why, the setting of the sun seems to trigger an increased level of agitation and erratic behavior in many people with Alzheimer's. They may pace; they may turn lights on and off; they may wander. My mother, of course, had her dog to feed. It was as the last light of day tinged the clouds pink that this obsession would manifest itself in its most virulent form. As if on cue, she would make her way to the kitchen to open another can of Atta Boy! and scoop out the disgusting contents with the good silver.
After dinner in the living room in front of the TV—my mother sipping diet root beer while I downed rum and Percocet—I was then able to deal with the long, arduous process of getting her ready for bed. That included a shower, which required me to turn the water on and prompt (Alzheimer's-speak for nag) her endlessly from the other room.
Once she called me to help her with some item of clothing she couldn't get off. "Can you help me with this…this…"
I got up to help. "This" turned out to be her bra, which she couldn't unhook. I cringed, a wave of horror sweeping over me as I helped my 72-year-old mother remove her underwear.
"Take your shower," I said, bolting from the room.
By the time I'd finally get her to bed, it was usually after midnight. I'd crawl into my own bed buzzing. Sometimes I'd hear her get up, turn all the lights on, and shuffle off to the kitchen to feed Tippy and the cats. I would point to the dishes already on the floor and plead with her. "Tippy has food. You already fed him."
"But he's licking his lips," she'd counter as the dog looked up at me apologetically. "That means he's hungry." It was ridiculous, of course, but like her concept of time, the notion of how to tell if a dog was hungry was completely her own. I even had a dream about it. In it, Tippy, speaking with the voice of the late actor Peter Lorre, boasted about how good he had it now that the "old lady had gone off the deep end." I often wondered if he could sense the change that had taken place, detect the slow decay of her mind, her erratic behavior; but outside of that dream, he never said a word.
Sometimes I'd let her feed the dog. Other times, I'd get up to find her standing in the kitchen with her hair hanging in her face, wearing her ratty plaid bathrobe and speaking to Tippy in the gentle voice I called her "mother voice." Whenever I heard it, I was immediately transported back to when I was a child and she was my adoring mother. Once, though, when I was particularly f*cked up, I heard that voice and completely lost it. After having managed to hold it together for weeks, I was overwhelmed by the sadness of it all. I begin to sob quietly, finally resting my head on the back of her shoulder and bawling like a baby.
"What's wrong?" she asked, turning around and seeing the tears running down my face.
"Nothing," I said, because there was nothing I could say.
"You're a funny boy." She smiled and put the bowl of dog food on the floor. "C'mon to bed, Tippy," she cooed, shuffling off. "C'mon with Mama."
In an unending series of emotional lows, that particular night was perhaps the lowest.
And then there was the money. Before "going off the deep end," as Tippy would put it, my mother had signed the necessary documents giving me power of attorney (POA). Patricia had engineered it. Alarmed by the Judge's mistaken belief that my nephew had been killed in Iraq, Patricia had managed to convince her that POA provisions were necessary for someone her age. Nine months later, this single piece of paper proved invaluable. It gave me the ability to completely overhaul the administrative details of her life—bank accounts, utility bills, insurance claims. And overhaul I did, especially when I got a look at just how vulnerable she had become.
Rrrrrrrrr—a lawn mower roared by the window. "Who's that?" I asked my mother one afternoon as we sat in her living room. She looked at the 300-pound man cutting the grass in the backyard.
"That's the fat guy who lives across the street." That's what she called him. She must have known his name once, but that, like so many words and phrases, had been rendered too difficult for her to retrieve at a moment's notice. So he had simply become "the fat guy who lives across the street." She paid him $12 to mow her lawn. It didn't take him long, maybe 20 minutes, and since he worked a night shift somewhere, he'd appear at random hours on random days to cut the grass whenever it got too long. Every couple of weeks, he'd leave a bill in the mailbox.
Rrrrrrrr—the same lawn mower roared by the same window. It was 3 days later, and the fat guy was back. At first I thought nothing of it as he crisscrossed the backyard; I figured he was finishing up something he'd missed. But he kept going, and I soon realized he was doing the whole thing again. A day or two later, when he appeared once more, I asked my mother who was mowing the lawn.
"That's the fat guy who lives across the street," she said as if for the first time.
It turned out that he was not alone in taking advantage of a sick old lady's Swiss-cheese memory. The telephone rang every evening with pitches and solicitations from myriad telemarketers who had my mother's number on their sucker list. I found her closets and drawers jammed with promotional gifts and so-called collectibles, some of which were being shipped to her on a monthly basis. Most of the packages had never been opened. Since her credit card was billed automatically, the stuff just kept coming. And coming. Plates, panty hose, videotapes—the list was endless. So too were the catalogs, journals, and magazines that clogged her mailbox. I discovered that many of them were also sent to her office, which itself was holding vast stores of mail-order junk, including a collection of Black Forest cuckoo clocks and a series of Princess Diana dolls that I found particularly loathsome.
Money, both as a concept and as a tool of everyday life, was quickly losing meaning for her. This was evident by the fact that Mary Jo, her secretary, wrote many of her checks. My mother only signed them. There were other checks, however—checks made out to my niece and to Bob—that Mary Jo hadn't written. My 25-year-old niece fancied herself hip and urbane and lived in the Pearl, a gentrified part of old Portland teeming with other like-minded twenty-somethings. My mother had legally adopted her at age 4 after my youngest and most flaky sister proved herself maternally inept. Feeling somehow culpable, my mother had raised her like a free-range chicken, eschewing rules and discipline for overindulgence and wanton materialism.
I found checks for the rent on my niece's expensive apartments, checks to pay for a renovated bathroom, checks for life-insurance policies, checks for a new car, checks for trips, checks for clothes, checks for cash. Lots of cash. In fact, there were several ATM cards floating around that I knew my mother couldn't possibly be using because she could no more remember a four-digitbank code than she could fly a jumbo jet. As I reviewed 5 years' worth of bank statements, it wasn't hard to figure out where it was all going.
"Gram said I could," my niece told me when I asked her about the withdrawals. It would be the first of many instances when my niece would tell me she'd gotten permission from her grandmother to do something some people might call stealing. As I'd discovered, my mother already paid my niece's rent, car insurance, and credit-card bills. She paid for her cable, cellphone, and utilities. She even paid for her newspaper subscription and lattes. Plus, she had $1,500 a month transferred directly into her bank account. Why my niece needed to tap the ATM for additional funds, I didn't want to know.
In a way, though, I couldn't blame her. My niece, like Tippy and the fat guy across the street, had simply taken what was given her. Whether it was a can of Atta Boy! or an ATM card, it seemed that nobody wanted the party to end. As Tippy in his Peter Lorre voice might have said, "Don't tell the old lady. She'll take away the Atta Boy! Whatever you do, don't tell the old lady."
If there was a bright spot at all, it was the return of Bob. My mother's old "dance partner" came by the house one day to remove his junk from the garage. It was the first time they'd seen each other since she'd kicked him out. I'm not going to say the earth moved, but clearly they had some sort of emotional bond that transcended the tragedy of the situation. They stood and gazed into each other's eyes like a couple of kids. If it weren't for the fact that this was my mother, it might have been beautiful.
Before he left that day, Bob asked if he could take her to a dance. He approached me like a young suitor asking for my daughter's hand. He promised to say or do nothing that would upset her. He swore he would have her back promptly afterward—well, maybe after they'd gone for some ice cream. Damn. It was bad enough having to take over my mother's life; did I have to give my permission for her to date?
The two of them began attending dances again regularly. I can't say I was happy about it, not at first. She seemed too fragile, too vulnerable to reengage in an emotional relationship, even if it was chaste. I had given my permission reluctantly, but I soon realized that this was something she needed. Her ability to work had deserted her, as had most everything else. While her malfunctioning brain put severe limits on the rest of her life, ballroom dancing would at least provide her a certain joie de vivre several afternoons a week. Besides, I needed the time. I still hadn't found her a place to live.
I don't want to say finding a new home for my mother was like trying to get my kids into a good New York City kindergarten, but there were certain similarities. I discovered places that would take anyone who walked in the door—some nice enough, but most grim and depressing with small, dark rooms that were often shared. At the other end of the spectrum were the retirement villages with huge buy-in fees and luxury apartments.
My first choice was a beautifully designed residence laid out on the grounds of a former convent. Staggeringly expensive, it would provide my mother with quality health care as she transitioned through the various stages of the disease, from assisted living to end-of-life hospice care. But there was a catch, something called the Mini-Mental State Exam, or MMSE. The MMSE is a simple test used to assess the memory and cognitive capabilities of someone suffering from senior dementia or early- stage Alzheimer's. Using a standard set of questions and directives and factoring in age and level of education, it attempts to quantify these capabilities. There's a possible score of 30, with anything above 24 considered in the normal range. My mother had been given the Mini-Mental once already, 6 weeks before. She'd gotten a 14. To get into this new place, she would have to be retested and score a minimum of 12.
As many New York City parents do with their children, I tried to ready her for her upcoming exam. Since there are no professional prep courses available for the Mini-Mental, I did the coaching myself. "Mom, what day is it?" I'd ask.
"Tuesday," she'd offer. But she didn't have a clue. "Wednesday," she'd respond when I told her to try again. Seasons were different. She'd look at the trees, still full of leaves, and conclude it was summer. Even though Labor Day was behind us, technically she was right. I felt a tinge of hope.
"Mom, I'm going to name three objects. I want you to repeat the names." I'd select three random objects: car, tree, house. Then I'd ask her to repeat them. She would giggle like a child, covering for the fact that she couldn't answer. Even with hints, she might remember only one. Most of the time she just giggled. It reminded me of the time my California friend told me he'd found his father, an infantry commander in World War II and an IBM executive with a Harvard business degree, watching the Muppets on TV.
She never took the Mini-Mental. I knew it was hopeless, and I decided not to humiliate her by having her fail, although I think I was actually sparing myself more than her. She wouldn't have known the difference anyway. But I certainly did. It meant the parameters of my search had shifted. Instead of getting her a place of her own on the beautiful grounds of some sprawling retirement village, I would have to find her an assisted-living situation, where her life could be more closely monitored.
I dropped in unannounced on senior centers. I toured retirement residences, nursing homes, and assisted-living facilities, shuddering afterward in the parking lot. I drove by foster homes for adults—and kept going. I even seriously considered moving her to New York and went so far as to have my wife inquire about a place near us.
"Mom," I said one day, feeling especially down, "if you could live anywhere you wanted, anywhere at all, where would you live? You could move to New York, see the kids every day, come over for dinner, spend holidays with us…or you could stay in Portland…" I trailed off, half afraid she'd want to move and half afraid she wouldn't.
"Well," she said, seeming to ponder the question deeply, "I think I'd like to live with Bob."
The look on her face as I told her she couldn't live with Bob overwhelmed me with guilt and only added to the difficulty of the situation. I vowed I would never again ask her a question I didn't know the answer to.
In all my peregrinations around Portland, I had neglected to look at West Hills Village. Less than 2 miles from my mother's house, West Hills is tucked into a little wooded trough just off the main road and is both a retirement residence and nursing home–convalescent center. In fact, my mother had recuperated there after she'd broken her hip 3 years before.
But that was a lifetime ago. When I took her on a tour, she didn't recognize the place. I showed her a two-bedroom apartment overlooking a courtyard with a softly burbling fountain and a dozen aspen trees in full autumn color. I spun a wondrous story of her life there, the tranquillity, the housekeeping services, the dining room that was open all day.
And Tippy was welcome, too—I'd made sure of that. While West Hills didn't have some of the high-end amenities of the other places, it had a good vibe to it. It was more her style, anyway: low-key and unpretentious.
After nearly 2 months, there was finally light at the end of the tunnel. I bought her new furniture, a new TV, a new bed; I corralled my oldest sister into helping me clean out the house, and I found new homes for the cats. My mother was now dancing with Bob twice a week and seemed to have pulled out of the steep dive she'd been in. I had fleeting moments of optimism. I envisioned her at West Hills for the next 10 years, enjoying her life, growing old with dignity and grace, and seeing her grandchildren. I even cut back on the Percocet.
I transitioned my mother into her new place over the course of the next several weeks. I took her there every day for longer and longer periods of time, eventually spending most evenings there. One night when it was time to go back home, she told me she wanted to stay. It was a breakthrough moment. I tucked her into bed, and Tippy snuggled in beside her.
"See you tomorrow," I said, feeling as if a boulder had suddenly been lifted from my shoulders. I finished moving her in the next day. While touring another facility, I had met Bonnie. In her early sixties, she was a private care-giver with a friendly, Midwestern charm that made my mother feel immediately at ease. They spent a pleasant afternoon together, talking and laughing and walking the dog. I arranged for Bonnie to visit my mother two afternoons a week. She asked for $20 an hour plus expenses. I was happy to pay it.
Eager to get home after 2 long months, I booked myself a flight out a few days later. The night before I left, my mother had a date with Bob. They were going dancing, and she fairly chortled with excitement. As I helped her on with her coat, I told her I was flying home early in the morning and would be gone when she woke up.
"Oh. Well, have a good trip," she chirped happily, and she disappeared out the door without another word.
POSTSCRIPT: My mother lasted less than 3 months at West Hills. She became delusional and began to wander. I was forced to move her into a memory-care unit at another facility, where her decline is measured but relentless. Later on, while closing her office down, in her closet I came across a box addressed to my oldest son, who is now 19 and a college freshman. The box had 10 years of dust on it and the words do not open till christmas written in her hand. Inside was a telescope. Even as I laughed, I cried.
Ed Note: This story was originally published in the May 2006 issue of Best Life.
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