We are taking a twenty-two-hour train ride from Raleigh, North Carolina, to Ann Arbor, Michigan, this year to have Thanksgiving with my mother. My brother Gary will drive a double shift on his truck route, take a three-hour nap, and then drive himself, his wife, and their son all night from Paducah, Kentucky, to Michigan to be there for Thanksgiving, too.
Mom has Alzheimer’s. She’s living in the Chelsea Methodist Home, in one of the best Alzheimer’s care units in the country, and she’s happy. She doesn’t know she’s there. She thinks she has a beautiful new house and that the people in the rooms across the hall from her really live down the street. She used to think that she worked at the Methodist Home; now she tells us she pitches in there only when her neighbors need help or when there’s a party or other special event. We can’t tell her we’re coming for Thanksgiving because she would go immediately to the elevator to wait for us, not knowing day from night, today from Thanksgiving.
We gave her one of those programmable telephones last year for Christmas. We installed all our numbers into its memory so all she had to do was push one button to call each of us long-distance. For a while she would call me a couple of times a day asking me to bring her some bologna and a loaf of bread. When I tried to explain that I lived in North Carolina, she would get angry at me for not doing what she wanted. She doesn’t call any of us anymore; she has forgotten how to use her fancy phone.
We’re all coming for Thanksgiving because we’re throwing a wedding reception for our youngest brother, Charlie. He isn’t getting married until next July, but the staff at the Methodist Home has asked us to be “creative” about the wedding. July is too far away; Mom is obsessed with his getting married and is becoming agitated. Also, it’s unclear what she will know or remember by next July. We all want her to believe that he is, at last, married.
My sister Lolly is Mom’s legal guardian; she’s also the one who sees Mom most often, because she lives in Chelsea — a lucky break for Mom and the rest of us, a burden for Lolly. I sometimes worry about Lolly more than I worry about Mom. Mom is happy, well-fed, safe, and feels independent and productive. Lolly, on the other hand, understands what is happening.
Alzheimer’s sneaks up on you: a forgotten appointment, a misplaced handbag, a spoken sentence that makes no sense, an inexplicable burst of anger, the nagging fear that there may not be enough money for you to live on. The early signs of Alzheimer’s seem to be just natural signs of aging.
Full-blown, the disease is frightening. Up and down, true and false, even life and death become confused. At some crucial point, everyone who has a loved one with Alzheimer’s understands that person is gone. Although still breathing, they are in fact dead and will never return.
Alzheimer’s is usually definitively diagnosed only by autopsy, by the pattern of destruction in the brain. But after Mom was intensively tested at the Geriatric Center of the University of Michigan Medical School, we were told that she was a textbook case. At that time, she had lost all short-term memory and was exhibiting several other classic Alzheimer’s symptoms.
People with Alzheimer’s often cannot even recognize their primary caretaker. For a short time, while we were trying to get her into the Methodist Home, Mom lived with Lolly. When I would call, Mom would tell me all about the wonderful people she was staying with, although she couldn’t identify who they were or where she was living. You can try to laugh about something like that, but your feelings get hurt.
If you’re a “good kid,” one who calls every Sunday, who sends flowers on Mother’s Day, Alzheimer’s is especially heart-rending. The only way to survive when your mother has Alzheimer’s is to lie, and a good kid would never lie.
Our first lie for Thanksgiving is not telling Mom we’re all coming. Our second is telling her that Charlie and his fiancée Donna aren’t eating Thanksgiving dinner with us because they’ve flown to Las Vegas to get married.
We think Las Vegas is a great lie. We rehearse it and tell all the kids. When you’re telling a lie to someone with Alzheimer’s, timing is everything. You’ve got to wait for the lucid moment, the little crack in the window of reality, the few heartbeats where she’s with you all the way. Otherwise you’ve got to repeat yourself, and anyone who’s ever told a lie knows that repeating it is the best way to get caught.
It’s my turn to do the lying. Mom’s in Lolly’s kitchen. The table is set for turkey and all the fixings, but it’s clear Mom doesn’t know it’s Thanksgiving. She also hasn’t called anyone by name, which is usually a bad sign. You can see the little kids are making her nervous.
“Where’s Charlie?” she asks, clutching her purse in her hands, looking around the room to get her bearings.
There’s a terrible silence. Gary, the oldest, looks down at his shoes.
“You’re not going to believe this,” I tell her, glancing at my siblings for support, “but he called this morning. He and Donna are in Las Vegas. They decided to run away and get married.”
“I just had a feeling,” she says — and we all breathe a little easier because we know she got it — “that they were going to do that.”
“Aren’t you glad?” I add, feeling the guilt of the lie break over me like a wave about to knock me off my feet. “She’s a real nice woman. I think Charlie’s lucky, don’t you?”
“I just had a feeling,” she says again. Gary straightens his glasses and walks over to Lolly to help her carve the turkey.
When you’re telling a lie to someone with Alzheimer’s, timing is everything. You’ve got to wait for the lucid moment, the little crack in the window of reality, the few heartbeats where she’s with you all the way.
I trust Lolly’s instincts. She’s the one who has the most contact with Mom. She’s the one who will be left holding the bag after the rest of us go home. So I trust her when she orders the cake and talks to the nursing staff and makes the arrangements for Charlie’s wedding reception to be held on the Home’s Alzheimer’s wing. Lolly says it’s the only way this is going to work. The Alzheimer’s wing is where Mom is at her best; that’s where she stands the greatest chance of remembering. If Lolly says we’re having cake and punch and fake wedding pictures on the Alzheimer’s wing, then as far as I’m concerned that’s what we’re doing.
Charlie doesn’t like it. He doesn’t want to have to spend time with all those Alzheimer’s patients. It’s creepy, he says. He wants us to have the cake and pictures at Lolly’s house. He’s been talking to Gary about it, and Gary brings it up for him as we try to convince ourselves that we should go through with this.
I tell Gary that Lolly’s right; it has to be at the Home. He’s never been the kind of person to buck the crowd, and he nods his head. I know he’ll be there.
So will Charlie. He’s the one to whom Mom responds best. He was the one who took her to the Methodist Home, though Lolly and I set it up. He was the one who told her what a wonderful place it was and sold her on the idea.
Charlie has also managed to catch all the credit. Mom believes that he bought her a new bed, although Lolly bought it and Tom, her husband, delivered it and set it up. The fancy spread and headboard came with a birthday card signed by all four of us, but Charlie’s was the only name she remembered. About six months ago, after Lolly had spent an afternoon at Mom’s house cleaning and painting her garage, Mom told her that she had only one child, Charlie.
We drink a toast to Charlie and his new bride before we carve into the turkey. Mom looks bewildered, and we all start talking again about how good Donna is and what a surprise it was that they called to say they were going to Las Vegas to get married.
The phone rings. Lolly gets up to answer it, and we all know it’s Charlie checking to see if the rest of us have arrived. She’s great on the phone and manages to chat her way through the conversation as though she’s talking to a neighbor, which is what she tells Mom when she hangs up.
There’s a lot of food being passed around the table, and we all sense the confusion Mom feels. It’s been more than a year since she could correctly distinguish a fork from a spoon. She’s not sure what to do with the gravy, so she passes it on. When she sees a bottle of salad dressing, she asks for it and gleefully shakes it over her plate, generously coating her turkey, potatoes, cranberry sauce, and bread.
The older kids stifle their giggles when we turn on our ice-from-hell looks. The kids make Mom nervous, though most of the time they’re sensitive to her needs.
Someone makes a joke and we all laugh. I concentrate on the dressing; it’s the best yet. I want to remember what’s good about today: that we’re all here and she’s alive and physically well and happy.
It’s gray outside. My kids swear they’ve seen some snow flurries, so after dinner we all squint and try to see what they see. If you look hard at one place for a long time you can see a flake or two.
Mom is tired. She starts asking about how she’ll get home. She wants to know who’s going to take her. The men get elected. For some reason she does better with men; maybe she trusts them more, or maybe she doesn’t think she can question their judgment. One time last fall, when Lolly and I and our kids took her back after a long day, she fell apart. She didn’t recognize her room, her fellow residents, anything. She became frightened and screamed that she wanted to go home and that we had tricked her. It terrified the kids. Since then, we’re more careful about who picks her up and who takes her back, and we try not to have the kids in tow on the return trip.
She believes she has lost her jacket. We know she left it in her room and try to reassure her that it will be there. Next, she’s sure we’ve switched purses on her, though we keep showing her the purse, which has her name written all over it in ballpoint pen. It almost looks like a designer fabric. She did that a few months ago when she could still sign her name. She studies the writing on her purse as though she doesn’t recognize her signature or is unsure of what it says. No one speaks. We’ve learned not to push, to let her come to some resolution on her own.
“It’s getting dark, and I’ve got to get going,” she says abruptly. “I left the house empty. I shouldn’t be gone for long.” She accepts our hugs and kisses, then heads out with Tom, Gary, and my husband Jeff, her bevy of bodyguards.
“Not a good day for her,” Lolly says, heading back to the kitchen to clean up. “Let’s hope tomorrow is better.”
Charlie calls to say he and Donna are running behind schedule, and we make plans to meet at the Methodist Home. Gary’s running late, too, but pulls up just as we’re packing the kids into the car.
We swing by the bakery to get the cake. It looks great: pale yellow roses and white edging and a big Congratulations Charles and Donna emblazoned in green frosting down the middle of a field of flowers and wedding bells.
Donna and Charlie are waiting for us in the lobby when we arrive. My stomach jumps and flops. We could get caught, nags a little voice in my head. She could be having a bad day. This whole thing could backfire.
Mom is in the television room watching “Star Trek.” One of the staff sees the huge cake and realizes there’s been a mistake. We had planned for the cake to be everyone’s dessert today, but all the residents have just eaten pie with their lunch. The staff member whispers in my ear that we’ve got to give them time to “walk it off.”
Mom pulls Charlie aside and tells him that no one came to get her for Thanksgiving. She tells him that she didn’t have turkey, that she didn’t get anything to eat all day and that we have all abandoned her. Charlie tries to reassure her that she did eat with us — she just forgot. She shakes her head no.
To change the subject we all start talking about the wedding. Donna shows off her ring. She looks pretty, dressed in creamy white slacks and a beautiful white sweater with sequins and little seed pearls. She’s being an incredible sport. Jeff starts taking pictures.
That’s the key: pictures. We’re taking lots of pictures that we’ll send her as soon as they’re developed so that everyone at the Home can look at them and discuss the event together. One by one the staff members show up and pose with Mom and the cake and the smiling bride and groom. We all agree this will help Mom remember.
The other residents begin to wander into the room. Donna and Charlie cut the cake. We tell everyone it’s a wedding reception for Ruth’s youngest son and invite them to join in. They want to know who Ruth is, who the son is, who we all are, and we usher them to tables and cut cake and talk and pour punch and smile.
The kids are having a great time, and most of the residents love having them around. Unafraid, the kids go from table to table and talk, eat cake, and refill punch cups.
One of the women keeps wrapping her cake in her napkin, putting it in her lap, and telling the others at her table that she hasn’t gotten any. There is a bit of commotion over the “unserved” woman, and, not sure what to do, we keep cutting her another piece until she has four or five tightly wrapped and piled in her lap. We switch to serving her punch and let her build up a line of cups.
Another woman, finished with her cake, folds her napkin and tears it into strips. Then she takes her neighbor’s napkin and does the same thing. She works her way around the room, from table to table, folding and tearing napkins until she has a stack nearly two inches thick. No one seems to mind.
We sit and talk with the residents, answering the same question over and over. Many of them smile when they are saying something angry or sad. It’s the same with Mom. Words and actions no longer match: conversation is confusing for them and for us. Still, it’s not hard to imagine how lively and competent these people once were. The loss is overwhelming.
The cake is nearly gone, the sugar roses eaten. People begin to wander back to the television or to walk the halls. Mom says it’s getting dark, her latest way of telling us that we need to go. She doesn’t like us to be out when it’s dark; she worries we’ll have trouble on the roads. It’s not quite three o’clock in the afternoon.
Before we leave, though, Mom wants to show us her house, to see the changes she’s made. Her room is the same as it’s been since she moved in more than a year ago, but we all ooh and aah over the improvements she’s made. She tells us that she uses only this part of the house now, that she’s closed off the rest because she doesn’t need it anymore. The walls of her room are covered with pictures she’s made in her therapy group; they look like the work of a young child. She has several bouquets of silk flowers near her window that she waters regularly. She says she can’t believe how long they’ve lasted.
She gets confused because our coats are in her closet and she can’t find her purse. The purse is on her desk, and we point out again where she has written her name on it. She grabs the bag and holds it as though we might try to take it away from her.
One of the staff members follows us down the hall to unlock the elevator. Mom stands back to say goodbye; she never goes near the elevator. One man occasionally becomes obsessed with it, and they block it with a library table that you have to move when you come and go.
When we get back to Lolly’s we’re all exhausted, but we talk for a while. Lolly tells us that two people died on the Alzheimer’s wing last week. There’s silence. We all thought that as long as Mom was there she was safe. The staff had told us that as the disease progressed, as it got to the point that it could kill her, she would be moved to a total nursing care area. But now we realize that we have been living with the false hope that as long as she was on the Alzheimer’s wing nothing could harm her.
Charlie says that he’s read about an experimental drug that reverses the process of Alzheimer’s. It’s a sobering thought: to go backward. We’ve all read the books; we know about the damage done to our mother’s brain. If this drug can reknit the brain, can it do so overnight? Or is the repair as tedious and drawn out as the unraveling? We’ve been through so much hurt, confusion, and anger that we can’t imagine a reversal of this terrible process. We know she’s crossed over some invisible line that no miracle drug can touch.
She has several bouquets of silk flowers near her window that she waters regularly. She says she can’t believe how long they’ve lasted.
Charlie and Donna have spent the night, and the kids get up early to have their “Christmas” breakfast. Though it’s only the Saturday after Thanksgiving, we’ve decided, since we’re all together, to have our family Christmas.
“Mom’s had two bad days,” Lolly tells me, cracking eggs to scramble. “What would you think about having our Christmas without her, then going to get her later so she can open her presents?”
There are six kids upstairs rattling packages under the tree. It feels like Christmas morning, excitement and anticipation in the air. It’s another lie, a double lie: Christmas when it’s not Christmas, and a not-Christmas without her. But Lolly’s right. The chaos of this morning would throw her. We stand a chance of making it work if it’s controlled, if all the action and excitement are centered on her.
Last Christmas was a disaster. Mom didn’t understand what we were doing with all the packages. She didn’t know which presents were hers and kept giving them back and putting other things, stuffed toys and candy and Christmas ornaments, in her bag. She got angry when we took the kids’ things away from her and was sullen and agitated during dinner. We are not anxious for a repeat.
We open our presents, clean up, then send Gary and Tom to go get her in Gary’s pickup truck. It’s odd to think of Mom jostling along, sandwiched between Tom and Gary, coming to a Christmas that isn’t Christmas and that she probably won’t remember.
She doesn’t remember much anymore. She told her sister Jessie that Gary had died a long time ago. Gary, who is half Navajo, was adopted when he was an infant. He has the stereotypical American Indian disposition: he’s quiet, slow to anger; he can’t hold his liquor worth a damn. He is our brother to the bone. We cannot joke about Mom thinking he’s dead.
Gary has this idea that we should take a picture of Mom with the four of us while we’re together today, then we should all get portraits made of our families and put together a collage so she can see who belongs to whom. Oddly enough, she can correctly identify all of our children as her grandchildren, and she even remembers my daughter Hedy, her only granddaughter, by name. She cannot, however, identify her own children, except Charlie.
When she arrives with Gary and Tom, she is clearly confused by all the people in the house. She doesn’t let go of her purse. She keeps showing me the three brass rivets that decorate the front flap, telling me that’s how she knows the purse is hers. She ignores the fact that her name is written all over it. She fingers the rivets as though she is reading Braille.
One by one the kids come into the family room to sit with her. They watch television together and cuddle. This time she is responsive to them. Charlie sits with her and talks about the wedding.
I mend a hole in the sleeve of her coat and tack down the interfacing that has come loose. It’s her favorite jacket, and she has adorned the lapels with a dozen or more Lions Club pins. Our father was active in Lions International, and Mom collected the pins over thirty years of traveling with him. Whenever she talks about Dad her voice is distant and slightly strained, as though she’s trying to remember him. Today she tries to give Hedy one of Lolly’s favorite dolls, but Lolly intervenes, saying that it was the last doll Dad gave her.
Mom looks a little puzzled. “Yes,” she says, straightening the doll’s yellow braids. “Paul, that was your father.”
Dinner is a hodgepodge of Thanksgiving leftovers. We eat heartily and laugh a lot. We talk about Donna and Charlie’s wedding and the reception at the Methodist Home. Mom seems to be following the conversation and nods when something is said to her. She says she thinks her sister Jessie is coming, and we tell her that she isn’t; she doesn’t believe us and keeps saying that you never can tell what will happen and that she just has a feeling Jessie might show up for dinner.
We clear the dishes and send the kids upstairs to get her Christmas presents. We explain that although it isn’t Christmas, we wanted to give her our gifts now because Gary and I won’t be able to come back up until next summer.
“Whatever you want,” she says, shaking her head. “I know you can’t come.”
Donna and Charlie give her a beautiful framed wedding portrait. It’s not their wedding picture, of course, but a picture from a friend’s wedding: Donna was a bridesmaid, and Charlie wore a tuxedo. We tell her we’ll hang it today when we take her home. She keeps saying how lovely it is, calling Charlie back to see it. She tries to give it to him as a gift, and he gives it back. She keeps trying until Charlie leaves the room and Donna gives it back a fourth time, explaining it’s for her, for her house, a gift from them to her.
She doesn’t get it. She puts the picture back in the box and asks Lolly if she wants it. Tom lays a picture hanger and a hammer near the picture and tells her that when he takes her home he’ll hang it up in her house. We talk about where it might look nice. She’s not sure, so we talk about her new house and all the lovely things she has there.
We focus on the other presents. There are several boxes of candy. Mom has developed a sweet tooth and likes having candy around to share. There are also some new cotton socks, a gaudy plastic necklace that she loves and puts on immediately over the other two necklaces she’s wearing, and a small, red change purse with a key ring that the kids picked out for her.
Her face brightens over the change purse in a way we haven’t seen for a couple of years. The kids show her how it zips and how she can put her keys on the ring. She works the zipper and snaps the snap and asks for her purse so she can get something out of it to put in her new change purse. When she opens her bag, we see it’s full of small plastic juice cups from the Methodist Home; she gives one to each of the kids. They accept them graciously and then give them back, knowing that she should return them. She gathers them up and stacks them so they’ll fit snugly in her bag. She holds the change purse and smiles.
Three Christmases ago, before we were able to understand or accept what was happening to her, she stood up in the middle of dinner to make an announcement. It was quite uncharacteristic of her, done with a kind of pomp that took us by surprise. She tapped on the edge of her glass and called for our attention, then took a used envelope out of her purse and began her announcement. Her voice seemed strange, flat and distant. She talked for a few minutes without making much sense, our stepfather sitting quietly by her side, then she called us up one by one and handed out money.
It was a strange gesture, and we all felt a little uncomfortable, but we took the crisp bills as directed and sat down. There was a tension in the air that kept us quiet. When the envelope was empty, she sat down and continued with her meal as though nothing had happened.
I carried the money in my purse for almost a year before I spent it, searching for something that reminded me of her. It was the last gift she gave any of us.
We have put all her presents in a pretty Christmas bag and have reassured her that Tom will hang the picture as soon as he takes her home. She says she wants to go now, that it’s late. We ask if she wants to stay for dessert.
Yes, dessert. She likes dessert and agrees to stay. Gary tells her that we want to get a picture of her with her kids, and she looks startled, as though he’s said something odd.
“I have no kids here,” she says, looking around the room. “I had no kids. No, I had one kid. Only one. That one there.” She points to Charlie and walks toward him. “This is my child,” she says, hugging him. “My only child.”
“Oh, Mom,” we tease her, “come on. We’re your kids too, you know that.”
“No,” she says, shaking her head. “No, I only had one kid, this one. But you,” she says, pointing to Lolly, “you look a lot like the Barrs. You could be one of Grace’s kids.”
We try to laugh and all crowd around her, our arms fumbling to link with hers, to draw us all close together. Jeff struggles to get us all in the picture, to get us all in focus.
“OK, you guys,” he calls out, “smile.”