Showing posts with label Alzheimer's. Show all posts
Showing posts with label Alzheimer's. Show all posts

Monday, February 23, 2009

The Elders' Village

For most people the world over, life is more about making do than having it made. Even prosperous people end up making do—improvising their way through life—when faced with various difficulties. When you're making do and you have a child to raise, you really do need help from aunts, uncles, grandmothers, schoolteachers, pediatricians, and the rest of the proverbial village that it takes to raise a child.

It takes a village applies just as much, or more, when you have to care for a parent with Alzheimer's.

My mother was diagnosed with Alzheimer's two years ago. She is now comfortably situated in assisted living, in Columbus, Georgia, where she lived in her own house for decades and still has many friends. She's in good physical health and good spirits and her finances are in order. I devoted intense energy and numerous trips to Georgia to making this outcome happen. It also took a whole village of other people, starting with a care-giving agency's owner, the agency's skilled and compassionate care coordinator, and a wonderful care-giver; and the authors, editors and publishers of several helpful books. I had kind and invaluable help from many other experts, including the elder law attorney, the financial planner, the lady from Mom's church who works at Mom's bank, the vice president at our other bank and the financial advisers she referred me to with questions, and the tax preparers, who were an AARP volunteer last year and this year a professional bookkeeper/tax preparer who will sort through the tax ramifications of all the financial arrangements I made.

Then there are the assisted living facility's manager, director, staff, and chaplain; two Columbus Veterans Service Office counselors and one field officer of the Veteran's Administration (from which Mom now receives an Aid and Attendance Benefit to offset her medical expenses); the real estate agent who succeeded in selling Mom's house; the woman who collects used household goods that are sold in a thrift store to support a cat charity, and the young man who drove the truck—this was how we cleared away a lot of Mom's old clothing and housewares—and the local library which accepted six boxes of books for the next book sale.

Last but most important of all, there are my cousins, Mom's nephew and his wife. Because they are in the estate sale business, they really know the lay of the land for elders moving to assisted living. They moved Mom to her new efficiency apartment and fixed it up nicely for her. They give me a place to stay and loan me a car to drive and a computer to use every time I go to Columbus. More than anyone else, I could not have done what I had to do without them.

Add doctors to the village that helps adult children care for a parent with Alzheimer's. My mom receives excellent care from her internal medicine doctor, her dermatologist, and her neurologist. The neurologist has had Mom on a combination of the drugs Aricept and Namenda for a year and half. Add medical researchers to the village too! As reported in the January 2009 issue of the newsletter Mind Mood and Memory (from Massachusetts General Hospital), a recent study indicates that the combination of Aricept, or another in the same class of drugs, with the drug Namenda is best treatment yet found for Alzheimer's. One researcher is quoted as saying, "We don't yet have a cure for Alzheimer's disease, but it's no longer accurate to say we don't have a useful treatment.... All AD patients in the study became more seriously affected by the disease over time, but those who received the combination treatment declined significantly more slowly. What's more, the longer patients received the combination, the greater the effect appeared to be." The drug combination doesn't cure Alzheimer's, but it buys time. If you have a loved one with Alzheimer's, buying time is the best deal on Earth.

Over Valentine's Day I went back to Columbus to visit Mom. I brought her a red balloon and a potted fern, both of which she liked. On a crystal clear afternoon, we walked around the outside of the assisted living facility. She has the shuffling Alzheimer's gait, and we didn't go fast, but we made it around the whole place. Downhill on the main driveway, then onto the sidewalk that goes around the back beside the wide sunny patio overlooking a meandering stream. Then along the other side of the building, by two vegetable garden plots, and finally up a large flight of concrete steps. Mom kept a safe hold on the railing and motored up the steps like somebody twenty years younger. All the way, she marveled at the signs of very early spring in Georgia. The vegetable plots were fallow, the trees by the stream bare, and the lawn grass winter brown, but shrubs and trees had tight buds. Sun-yellow dandelions dotted the edges of the lawn, and tiny blue flowers were mixed in with the brown stems of grass. I'm glad that Mom can still notice these things. She looks forward to seeing the first bluebirds of the year.

In the long uneven dying that is Alzheimer's, she'll probably lose the ability to recognize bluebirds, me, or anything else. More crises and heartbreak lie ahead. But know I now something vitally important: I'm not facing Mom's condition alone.

The world tilts, as it always has, summer to winter and back toward spring. People make do as they raise a child or walk with an elder toward the end of life. And the help of a village makes all the difference in the world.

Friday, February 8, 2008

Stardust and Ashes

A few years ago on Ash Wednesday, I attended the evening service—complete with imposition of ashes—in my Episcopal church, drove back to my end of town, stopped by my neighborhood grocery store, and quickly realized that I wasn't the only person in the store with an ashy cross on my forehead. A smattering of other shoppers had it too. The really interesting thing was the reaction of people who didn't know what it meant. Judging by their alarmed glances, some of the shoppers suspected cultists in their midst. I heard one shopper, a bearded white guy in a Hawaiian shirt, shorts, and sandals, ask a clean-cut black grocery store clerk what the smudged foreheads were all about. Answer: they're from the Catholic church across the street because it's a Catholic holiday.

Well. Ash Wednesday is not exactly a holiday, but a holy day, yes. The ashes come from palm fronds that were carried in festive procession around the church the previous year on Palm Sunday. At one point in the Ash Wednesday liturgy, the priest traces ash on each congregant's forehead in the form of a cross with the words, "Remember that you are dust and to dust you will return." Remember that you will die.

We are stardust, carbon and oxygen and all of the other atoms heavier than hydrogen and helium, atoms forged in giant stars that exploded as supernovas. To scattered atoms and molecules we will return; that's one way to look at it. Another way to look at it is what I've been seeing for the past year: a parent with Alzheimer's. The human brain is the most complex thing we know of in the universe. Alzheimer's unravels it. The strands of cognition, perception, judgment, memory, intelligence and reason are normally tightly woven together into a supple fabric of mind that we take for granted. With Alzheimer's the strands pull loose and tangle like torn fabric. Remember that you are made of unthinking matter and to unthinking matter you will return. Remember that it may be a slow, painful, humiliating return, too.

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In early December of 2006, I got a phone call from my mother's best friend to tell me that my mother was in trouble. The next day I flew from my home in Houston back to Columbus Georgia, where I did most of my growing up and my mother still lives. As soon as I got there it was obvious that Mom was not the person I've always known, sometimes liked and sometimes disliked, and generally been able to predict. She was different, unpredictably and in a way that had to do with cognition. She'd gotten lost driving to a doctor's office that she'd been to many times before. Her cable TV setup wasn't working right because she'd forgotten how to work it. She couldn't keep track of the day of the week. Some of the things she said were repetitive and paranoid. She couldn't think of basic vocabulary words. The window air conditioner was "that machine." It all added up to senile dementia and I didn't know how in the name of Heaven or Hell to cope with it.

Like everybody, I've had a few difficult Christmases: the Christmas in college when I had major depression; the Christmas, when I was eleven years old, that my beloved grandmother died; and probably the Christmas after my parents divorced, though I was very young and don't consciously remember that one. Anyway, for me or anybody else Christmas can be a season of crisis. In that case, it's not the kind of Christmas we Americans love to love—it's not like the birth of healthy child into a happy family in prosperous circumstances. More like the first Christmas: the birth of a problematic child to displaced, isolated people in a cold, uncomfortable and uncertain situation. In the Christian telling of the tale, comfort and joy broke into very unhappy circumstances.

So it was for me in December of 2006. Before then I'd only vaguely heard about care-giving agencies. But in a file where for years I'd been stashing information about aging that I might need to know someday, I discovered a newspaper article I'd clipped from the Columbus Ledger-Enquirer. The article was a nice write-up about the local office of a national care-giving agency called Comfort Keepers. So I called them. My call came out of the blue in the middle of a busy day and I was just a random caller. But from the other end of the line, Al Abbot promptly gave me a rundown about the typical progression of Alzheimer's. He knew where I was coming from and he knew the lay of the land in question. His sympathy and knowledge made a huge difference to me that day. It was the first break in the gloom of not knowing what to do for Mom and for myself.

A few days later I called back to ask for a visit from the Comfort Keepers care coordinator. That's the first step taken with a prospective client. I had to return to Houston soon, but the care coordinator, Carla Teagle, managed to make the visit while I was still in Columbus. Compassionate, astute, and adept at conversing with Alzheimer's people and their badly rattled family members, Carla came to my mother's house, where she talked to both of us and suggested one of their caregivers to work with Mom. It's like matchmaking. The care-giver and the client need good chemistry with each other. We set up a once-weekly visit with a caregiver named Mary Ann.

Mary Ann started helping my mother once a week for four hours, usually but not always on Tuesdays. As quickly as that, a huge thorny burden rolled off my shoulders. I'd been wondering how I could possibly orchestrate the many doctor visits my mother needed to rule out treatable conditions that could cause dementia. With Mom unable to drive and most of her elderly friends in the same boat, the logistical problems were more than I could handle from Houston. Mary Ann promptly, kindly and effectively took care of it. Comfort indeed! Mary Ann drove my mother to doctors' appointments and relayed back news of how the appointments went and when new appointments had been scheduled.

In due time, Mom's neurologist determined that her condition was Alzheimer's. He prescribed the drugs Aricept and Namenda. Note to anybody who needs to know: Alzheimer's medications don't cure the disease. With luck, though, they slow the progression of it. They buy you time.

Mary Ann helped Mom get her new prescriptions filled and refilled along with a several more ordinary medications that her primary care physician had her taking. Besides doctor visits and prescription refills, Mary Ann drove Mom around for routine errands. So Mom had a weekly outing, an opportunity to enjoy shopping for groceries for herself and her cat, and a meal away from the house. She also benefited from a reliable companion who could be calm and pleasant with her. Take my word for this: it's very, very hard for an adult child (or spouse) of somebody with Alzheimer's to be their amiable companion. You're stressed out. You remember what your loved one was like and you lose patience with what they are now. When you glimpse what they will become as the disease inexorably progresses, you're scared silly. They, however, still have the basic human needs as everyone else; they need companionship once in a while. Companionship simply means your loved one sharing a few tasks, a laugh or two and a meal with someone who isn't shaken to the core just by being in their company.

Mary Ann was wonderful. Al and Carla were there at the Comfort Keepers office number when I had questions. They saved the year 2007 for me.

2007 was the worst possible year for my life to be potentially derailed by my mother's needs. My first novel came out in July. I experienced the whole enormous emotional roller coaster of reviewing galley proofs, negotiating edits with the copy editor, and finally seeing my mind child birthed. Then I had to promote the book with press releases, book signings, interviews and appearances at science fiction conventions. I also committed to teach two new classes in creative writing through the Rice University School of Continuing Studies. How I could have kept my career afloat and taken care of my mother without Comfort Keepers I can not even imagine. A wise friend of mine commented, "The people in a business like that know they aren't just there to help your mother. They're there to help you too."

My mother was able to remain in her own house for nine more months after she started taking medications for Alzheimer's. She had time to visit with the dire truth and, I think, realize how compromised and unhappy her life was going to be if she continued to live in a house by herself. She couldn't drive. She couldn't go first thing in the morning to walk in the park, as she loved doing for two decades. She could no longer write checks with enough accuracy not to overpay by hundreds of dollars. She couldn't put things in the right places or find them where she'd put them. In the confusion of her frayed brain, she became convinced that a neighbor was regularly breaking into her house—to steal her ratty old broom or to exchange a folded blanket in her hall closet for another, less desirable, blanket.

My Columbus cousins came to the rescue in several little house-related crises, such as Mom forgetting how to operate the window air conditioner or the clothes dryer and the latter actually going kaput. Thanks to Comfort Keepers, with additional thanks to my cousins, modern pharmacology, Meals on Wheels, Mom's friends Mickey and George, and the feline companionship of her cat Jazz, Mom remained at home for a full year after Alzheimer's entered the picture. She managed not to have an injurious accident, or overdose herself on her medications, or misuse the stove or space heater and burn the house down. Meanwhile I had the freedom to take care of my book and the time to plan the next, momentous step for Mom: assisted living.

Note to anyone whose loved one has Alzheimer's: caring for a loved one with Alzheimer's is one of the harshest jobs in the world. Many people are just not cut out for it. I'm not. I turned out to be rather good at logistics, finances, and making solid and compassionate arrangements for my mother. But being her care-giver was completely out of the question. Me trying to care for my mother in Columbus, in Houston, or anywhere between here and the uttermost ends of the Earth, would have been a disaster. If your resources can conceivably stretch to cover it, employ care-givers to take part of your load. And do it before the situation overwhelms you. Care-giving agencies, not to mention assisted living, do look expensive compared to living in a home that one owns. But you're not comparing those alternatives to somebody able to get along in their own home. You're making a comparison to the terrible financial, emotional, and physical costs and risks of caring for a loved one with Alzheimer's. To our society's credit, and to the even greater credit of the fine professionals in the field of care for the sick and disabled elderly, there are alternatives that didn't exist a generation or two ago.

Early on, I visited an assisted living facility in Columbus called the Gardens at Calvary. I loved it at first sight. The locale (beside a wooded stream valley with trees and birds), the architecture (up to date but not objectionably modern, with elder-friendly details and lots of natural light) and the pleasant professionalism of the staff deeply moved me. The place actually struck me as rather like a motel in or near a national park. If you enjoy traveling to marvel at nature, you may have stayed at such a place, and you'll recognize what I mean. A lodging place that's not excessively fancy, but with all the amenities you really need; right near of a remarkable natural destination; staffed by employees who feel lucky to work there; and with people staying there who have much in common and are enjoying themselves. It may be hugely counterintuitive that an assisted living facility struck me that way, but this one did.

One important consideration was that Mom wanted to stay in Columbus. I felt sure that being in Columbus with the birds and the trees and the light and weather she's used to would be good for her, not to mention having friends, nieces and nephews nearby. Also, I admit, I emphatically did not want my mother in Houston with me. In March 2007, Mom visited the Gardens at Calvary. She liked it as much as I had. We even saw a bluebird in a tree in front of the building. The bluebird of happiness, perhaps? Her name went on the waiting list.

Three times last year, Mom's name came up on the waiting list. The first two times I was in the throes of book promotion, including a sequence of four science fiction conventions in three months. My cousins reported that Mom was still getting along fine in her house. Mary Ann and Carla concurred. The third time, just before Thanksgiving, felt like the charm. I took a deep shaky existential breath and put the wheels in motion. Note to anybody who needs to know: the best time for an Alzheimer's person to move is before they lose so much cognition that they can never adapt. Back in March, Mom's neurologist point-blank advised us to look at assisted living and make it happen within a year. And we did.

My Columbus cousins had helped Mom move into her house 30 years ago. In December of 2007, they moved her from her house to assisted living. Mary Ann came for several more weeks to provide continuity and help Mom with odds and ends she needed. In the future, if Mom ever needs one-on-one care for a few days, if, for example, she sprains an ankle or has the flu, I can call on Comfort Keepers again. That's another thing they do, and it can keep an assisted living resident from having to being dispatched to a nursing home to recover from a serious but temporary ailment. By Christmas, Mom was in residing in the Gardens at Calvary.

For the first Christmas in my life, I didn't get a Christmas present from her. That felt sad and deeply unsettling. On the other hand, I got what I wanted for Christmas: Mom comfortable, safe and happy in her new home.

My first impressions were on target. The Gardens at Calvary is a good place. It offers nourishing meals and a full slate of activities for body, mind and soul. Nursing staff give my mother her medications, which eliminates the dangers of over- or under-dosing. There's companionship for her too. The other residents include people with many degrees of functioning and non-functioning bodies and minds. When the time comes—which it will, unless physical health crises trump the brain's unraveling—the Gardens has a Greenhouse. That's a wonderful new concept in Alzheimer's care: having architecture and daily routines that evoke a private home rather than an institution.

The Gardens at Calvary, Greenhouse and all, is even a joyful place, as surprising as that may seem. I felt joy in visiting my mother in her new studio apartment, in her showing me the floors and the sunny back porch and the chapel on New Year's morning, in meeting some of her new friends, and in hearing her look forward to the birds in the springtime. (Joy also happens to be the apt name of the indefatigable activities director!)

Well-designed surroundings, wholesome daily routines, and humane, effective care are what all assisted living facilities aspire to, and from what I can tell, a fair number of them succeed. What's good, right, and joyful about the Gardens at Calvary goes even deeper. It's a ministry of Calvary Baptist Church. The staff of the Gardens includes a chaplain. What an excellent idea! The residents are highly likely to experience illnesses and the deaths of friends and relatives while their own death is not too far off. The residents' adult children experience the emotional turmoil of having a parent in advanced age with illness, debilitation and/or Alzheimer's. An assisted living facility is on a par with a battlefield or hospital as the natural habitat of a chaplain.

And then there's that first impression I had. The counterintuitive impression of a national park motel: not luxurious but with all the amenities you really need, very near a remarkable natural destination, with staff who feel lucky to work there, and people staying there who may not be staying for a really long time, but who have much in common and are enjoying themselves. That impression has stayed through the visits I made since the first. Yes, there's the whole human spectrum of health and sickness, good days and bad days, various moods and motives. And yet: this assisted living community truly does seem to be near—and aware of being near—a remarkable natural destination, like a Grand Canyon, not made of rock and water, but rather in the landscape of the spirit. The natural, grand, nearby destination is breathtakingly obvious. It's death—the kind of death that ends a long journey through life and enters the nearer presence of God.

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After Mom moved to assisted living, I had to get her settled, empty her house, give away/sell/throw away/gift away innumerable belongings loaded with memories, and prepare to sell the house. There were misplaced bills to uncover and missing documents to look for. I had to find a home for Jazz the cat. I had to figure out what to do the childhood mementoes of mine and the family furniture that remained at her home. And clarify and arrange her finances to pay for her assisted living. And on and on. I had tremendous help from my Columbus cousins. Very happily for me, they are in the estate sale business. They are pros at handling all of this stuff! It wasn't easy, but the house got cleaned up, the junk thrown out, the valuable possessions sorted out. I did all of this in a blaze of emotion and energy, a physical and emotional tour de force from which I'm still feeling the aftereffects.

It felt quite different from clearing a house when someone had suddenly died or is suffering in a hospital or nursing home. My mother was in her new place and happy. I had work to do, but it wasn't agonizing. It was, however, intense. Part of the work I had to do was salvaging memories. Not for my mother, but for me. My mother has never been good at remembering things. Not the major milestones in my life, much less things important to me for other various reasons; not vacations and trips we took together, much less anything I ever did on my own. Or if she ever remembered she was never able articulate it. In that regard, I've been on my own for a long time. One of the areas of failed memory pertained to my maternal grandmother. She helped raise me for seven years, between my parents' divorce and her own death. She loved me—I know that—but I've always had a mystifyingly hard time remembering her. That may have to do with the divorce, which was botched and went even worse for me than it had to. If your earliest experiences of relationship and loss go badly wrong, subsequent ones are very likely to follow suit.

In cleaning my mother's house I found myself recalling my grandmother. There were things of hers still in the house. It was easier to remember her ways and habits in that house than elsewhere else, and for the first time ever, my mother was not around. I could remember in solitude. It helped that the Columbus cousins reminisced about our grandmother. I soon realized that with her having been the industrious woman she was, there was no better way to remember her—almost channel her—than by rolling up my sleeves and doing hard work that needed doing for the sake of love.

Just before Epiphany, my uncle died. The oldest sibling of Mom's, and the only remaining one, he was very elderly and in poor health, so his death came as no surprise. It was nonetheless a shock. Fortunately I was still Columbus. I broke the news to Mom in person the day we cousins got the word. On the way into the Gardens at Calvary, I mentioned it to the people in the front office, just in case they wondered about why she was suddenly withdrawn or forlorn.

Chaplain Vern materialized almost immediately. He talked with Mom about her brother, and then was she able first to cry and then to reminisce about him. Chaplain Vern is good at what he does, and what he does is good.

I drove Mom to the funeral in Troy, Alabama. This was probably the last trip my mother will ever make. It was a surprisingly good one for her. All the way over she recognized favorite landmarks—the Alabam two-lane-road scenery, downtown Union Springs, North Three Notch Road in Troy. At the funeral home, we met up with a lot of members of the extended family, including people I hadn't seen in decades. They showed a lot of love for my mother. The graveside service took place in the cemetery where my grandmother and many other family members are buried. All in all it was far more a healing occasion than a hurting one.

Afterward, we visited another of my cousins at his home outside of Troy. He lives in the onetime farm house that my mother and another uncle helped build for my grandmother in the 1940's. He's remodeled it but, to my great joy, in doing so he respected the original integrity of it. It was where I lived with my grandmother and my mother right after the divorce; it's the very first home I can consciously remember living in. A good feeling has always suffused my memory of it. That came of my grandmother, I think. She was a deeply loving, greatly generous, incredibly hardworking woman. A southern lady and a school teacher in her younger days, she loved playing the piano. She played sacred and secular music, Broadway tunes and church hymns until arthritis finally afflicted her fingers to much for her to play the piano any more.

The last thing I did at my mother's house in Columbus was something I haven't done in many, many years: play a few notes on my grandmother's piano, in my grandmother's memory. My cousins and I think we've found a good home for the piano. If not, we'll keep looking. We want it to make music and make people happy again.

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For obvious reasons, Epiphany makes me think about stars. Not ordinary main-sequence stars, but stars that suddenly brighten and blaze— novas or supernovas. This particular year, all the way through Advent, Christmas and Epiphany, I was in a blaze of physical and emotional energy. After it was done—the assisted living wheels set in motion, finances lined up, the move to assisted living orchestrated, house cleaned, stuff given away, mementoes stored at my cousin's place, Mom settled in, cat transferred to a good home, uncle buried, Grandmother channeled, house in Columbus said goodbye too, house in Troy said hello to, and a thousand other problems and opportunities, most of them highly emotionally charged—I finally returned home to Houston. For the whole three weeks since then, I've felt like a pile of burned-out ashes.

How fitting, considering what day it is as I write this: Ash Wednesday.

One of the best things about traditional, liturgical Christianity is that parts of the church year consist of holy days that are not happy holidays. There are four weeks of Advent, the season of waiting and watching in darkness, even while the secular world prematurely revels in Christmas. There are forty days of Lent, and though stores trot pastel Easter-related merchandise, in traditional churches, it's most emphatically not Easter until after Lent. Also, every Friday in the church calendar echoes the Friday called Good.

There's something utterly true about Advent and Lent, Good Friday and Ash Wednesday. Some days are dark. Some seasons are times of desolation. Someday your life will end. And yet: ashes signify not only desolation but also renewal, not only sorrow but also the hope of joy, not only death, but also transformation.

Friday, December 7, 2007

Goodbye Nest Smell

Loss can be like a meteor crater on the landscape of your life: the unwelcome footprint of a destructive force of nature, but with fascinating scientific and aesthetic details.

My mother has Alzheimer's. She's declining—a graceful synonym for her mind falling apart around her. I recently spent a very busy two weeks orchestrating her move into assisted living. For her to continue to live in her house alone was not a good idea. The assisted living facility offers the kind of social life, structured activities, nourishing food, and daily oversight that may give my mother's final years some real quality of life. She won't accidentally burn down the house; won't fall down in the house or yard and lie hurt for hours. Not attempting to manage her own finances, she won't make mistakes of judgment to the effect of hundreds or thousands of dollars. She wanted to stay in Columbus, Georgia, and that is a good idea. She had friends and family and she knows the climate and the birds there. She won't feel uprooted like she would if I insisted that she come to Houston where I live.

The down side—one of them—is that my mother moving to assisted living means I lose my ancestral home. I'd wondered what her house would be like after a year of being inhabited by a person with Alzheimer's. Well, when I went back to Columbus for Thanksgiving, the housekeeping was poor, and the clutter worse than ever, but the "nest smell" still the same. It's a comfortable olfactory fabric woven out of the scents of an old wooden frame house plus the cleaning agents, laundry detergent, and air fresheners my mom has used for years, and her favorite perfume. I think the nest smell of her house is very much like what I knew in my early years, when my grandmother lived with us, in a different but similar rented house in the same neighborhood. In the next few months I'll have to clean out and sell the house. In the end I'll miss that nest smell. And miss the battered but long-familiar furniture in my old bedroom, and the self-respecting blue-collar neighborhood with trees much taller than the homes, pine-tree-tinged breezes, and firefly summer nights.

I feel lucky that my mother stayed put in the neighborhood where I grew up, in the same kind of house, and even kept of lot of the stuff that was there in my grandmother's day. Every time I visited her for decades, I got to greet all of that. American society is terribly transient. When children are relocated, either elsewhere after a divorce, or up the ladder of increasingly respectable housing as the family prospers, or from one state to another in the wake of parental job changes, it may not occur to anyone to help the kids say goodbye to the old place. Then it's gone for good. I have very few friends who can ever experience the same light, the same trees, some of the old furniture, and the nest smell of childhood. In losing our early places, many of us are like refugees from a past we can never go home to. People whose families fled from wars in Bosnia or Viet Nam lost whole countries along with their childhood homes. No wonder it can be a profoundly emotional experience for them to return to visit relatives years later. Americans, though, have a real knack for just casually misplacing the places of childhood.

Speaking of saying goodbye, I said goodbye to my mother several months ago, in a dream, while I was staying with friends in Tulsa. What an odd place and time for a heartfelt goodbye. But Alzheimer's is a long stair-stepping slide downhill, and it can be hard to pinpoint when you lose the person. In my mother's case it's particularly hard to say when I lost her. In a way I lost her when I was three, and she was 38, when she divorced my father and spiraled down into a quarter-century of depression and social withdrawal. After she retired from teaching school, though, she came back to life. She took up walking and dancing. She made friends. She never regained enough emotional competence to be good at mothering, but I am profoundly glad that she was a social human being for a full twenty years of retirement. As her best friend puts it, my mother "came out of her shell" in her old age.

Last December was when her Alzheimer's became obvious and scary. Was that when I lost her (again?) Not exactly. In the twelve months since then, during which my first novel was published, she became more cognizant and more supportive of my writing career than ever in my entire life. Granted it's easier to conceptualize my daughter wrote a book than my daughter has been writing short stories, novelettes, and articles and doing editing and teaching creative writing for years. But the whole emotional tone of her feelings about me, or at any rate the feelings that she was able to express, changed enormously. During the past year she informed as much of the world as she had the opportunity to talk to that I has written a book and she was proud of me. She also told me—on the phone, while I was in Tulsa, before my goodbye dream—that I'm a smart, hard-working and ambitious woman. A lot of my friends over the years might vouch for that, but I'd never heard such words from my mother's lips in my entire existence. For decades, her favorite line in dialog with me was "Are you OK?" (Yes, dammit, and in fact I'm usually better than just OK!)

Did the Alzheimer's knock out some of the dysfunctional circuitry in her brain? Maybe. One of my friends had such an experience. After her entire lifetime of being unfavorably compared to an older sister, their Alzheimer's-afflicted mother somehow turned into the sympathetic, companionable mother my friend had always yearned for. It's a mysterious malady, Alzheimer's. It inexorably destroys the brain and it blasts an emotional crater of loss in the hearts of loved ones. Yet it has intriguing and, very rarely, wonderful details.

Anyone who's responsible for an aging parent or friend should get the book ELDERCARE 911 by Susan Beerman and Judith Rappaport-Musson (Prometheus Books, 2002.) It's authoritative yet compassionate, and tremendously helpful. Another remarkable book is Aging with Grace by David Snowdon (Bantam, 2001.) Snowdon is the scientist who conducted the Nun Study of aging brains. The Nun Study brought fame to Snowdon, but in reading his book one gathers that working with the elderly religious humanized him.