No. Theyre all just talking constantly and I never get a chance to say anything.
But Laurie, thats what happens at dinner parties. Youve got eight people fueled by a lot of alcohol and they all are clamoring for the floor. Thats just the way it is.
I didnt get to speak. I hated it. Why wont they let me speak?
Im puzzled. Laurie was always the life of any get-together: raucous, loud, leading the room from one topic to the next. What was going on?
At another dinner party a few weeks later, I notice Laurie sitting back, silent. Hey Laurie, I say in a loud voice. Anything youd like to add? The room quiets and everyone looks at her.
No, she says, and sips from her glass of wine.
The next morning were arguing again. No one, she says, would let me speak.
Im sitting in the living room in 2011, reading.
Hes coming over with the stuff to do the thing, Laurie says.
It takes me a moment to realize shes speaking to me. What?
Hes coming over with the stuff to do the thing.
What stuff? What thing? And who is he?
She glares at me. You know. The words are accusatory and full of weight.
I wonder if I am becoming that stereotypical husband who ignores his spouse, just responding Uh-huh, uh-huh.
Im sorry. I must not have been paying attention. Whos coming over?
She turns and walks out of the room.
Weve flown to Washington to visit our oldest daughter, Lauren, at college. We get together for drinks with one of my brothers. Shes doing the thing pretty soon, Laurie says.
What? my brother asks. Laurie, seriously, we need to find out whats going on with your speech. Somethings up.
Laurie looks shocked, and says, What do you mean?
Your speech, the way you talk. I dont understand what youre saying.
She laughs. Oh, thats nothing. Its the beer.
When Laurie gets up to go to the restroom, I say to my brother, Youve been noticing it?
Everyones been noticing it, he says.
I thought it was just me.
Worried, I reach out to Lauries primary care physician, asking her to refer Laurie for tests. She talks to Laurie, who eventually agrees.
When we meet with a neurologist at Massachusetts General Hospital to find out the results, he says Laurie has primary progressive aphasia of the logopenic variant.
Whats that mean? I ask.
Its aphasiaan inability to communicateand its specifically word-related. Thats the logo part. Lauries having trouble finding words. Thats our primary diagnosis.
Then he says, And its progressive.
Progressive? I ask.
Meaning its going to get worse.
Im bewildered and want to know what caused it. Did she have a stroke? Heavy metals, pesticides? He says probably not, but can run more tests to check.
Well, I think we need to, I say. Right, Laurie? She nods.
This is just crazy, I say. Shes only 56.
We stand up and the neurologist asks me to stay behind for some paperwork. As Laurie waits outside, he says, I didnt want to say it in front of her, but in all likelihood what she has is younger-onset Alzheimers. It just started in a unique part of her brainthe left rear lobebut like all Alzheimers, it eventually will spread throughout the entire brain.
You need to prepare yourself, he adds.
Alzheimers? I thought that only happened to people in their 80s and 90s. But shes only 56, I repeat. Shes got her MBA in finance.
Laurie and I had first met at a punk-rock club in Washington, where Id moved for work in 1982 after graduating from law school. I was there with friends when she walked in, 5 foot 11, tan, wearing a black miniskirt. I spent the evening glancing her way, occasionally approaching but then backing off, certain she was out of my league. Toward midnight, I finally went up to her and managed to say Hello.
Giving me a withering look, she said, Well, it took you long enough. I was smitten.
She would turn out to be the wittiest, smartest, and most talkative person I had ever met. And now all of that was fading away.
Were at the National Institutes of Health in Bethesda, Maryland, walking into a small conference room to meet with a neurological researcher. Months earlier, Laurie had agreed to be part of his study testing whether a combination of certain dyes in the bloodstream and positron electron tomography imaging could pick up the presence of abnormal amyloid proteins in her brain. This is a marker of Alzheimers disease, usually only found in an autopsy.
The researcher is hoping his technique can detect Alzheimers before death. Were hoping hell tell us her increasingly apparent aphasia is caused by something else.
We sit down. He picks up a piece of paper, looks at it, and then looks at us. He starts to cry.
Laurie is standing in the middle of our living room, sobbing. I go to her and hold her. I dont need to ask whats wrong; I know. We just stand there, hugging.
A few days later, I look in the medicine cabinet at Lauries medications, Aricept and Namenda, representing the only two types of Alzheimers-related drugs on the market. Neither stops the disease, let alone cures it, but theyre thought to help improve cognition. The containers seem full. Too full.
Laurie, I ask, Have you been taking your pills?
No, she says. I dont need them.
Yes, you do, I say. You need them for your Alzheimers.
I dont have Alzheimers, she says.
Laurie comes out the front door along with our youngest daughter, Bryn, to see the new Honda CR-V Im driving.
I want to try it, Laurie says. Bryn and I exchange looks. Its 2015 and I havent let Laurie drive for months, finding one excuse or another. But I reluctantly say OK, and we climb into the car, me in the front passenger seat, Bryn in back. I suggest we go to get lunch at one of our regular places, an easy drive on mostly back roads.
At the first stop sign, I remind her to take a right. She immediately starts to go left. No! I say sharply, The other right!
She takes the next turn without appearing to think. She seems to be doing fine, and I begin to relax. A quarter mile later, at a light, she asks Where?
I point to the left, and she turns that way. At the restaurant, she cruises toward a parking spot right in front. I realize shes about to hit a car to our left. I reach across and pull the steering wheel down so we swerve right, saying Laurie, stop. Stop! She does.
Let me park it, I say. She gets out, and I get in.
After lunch, I drive home. Bryn and I have a few minutes alone.
That was awful, she says. She shouldnt be driving.
Later, Laurie tells me that its the new car. I was fine with the old one.
Laurie walks into the apartment, her face ashen. Is everything OK? Did you get the money? I ask. She bursts into tears. Its not working.
I stand up, go to her, and hug her. Its no big deal. Lets go down and take a look. Maybe the ATMs just broken.
We go across the street. I watch as she puts her card in and types her password. The screen reads incorrect password. She tries again and the error message flashes once more. Whats your password? I ask.
Im pretty sure its our anniversary, I say. Try typing that in. The numbers she presses are nothing close to our anniversary.
Laurie, I say, my voice rising. Pay attention. Thats not your password. I catch myself and try to cool down. I ask her to let me help, and type in the password. A few seconds later she has $60 in her purse.
Im sitting in our bedroom and I hear the click of a door shutting. I get up and look around. Laurie? Theres no answer. I walk outside to the hallway. No sign of her. I take the elevator to the lobby and see the doorman. Have you seen Laurie?
Not this morning, he says. I run up the stairs and find her between the second and third floors. What are you doing here?
She looks at me, bewildered.
She got her MBA in finance in 1986, shortly after we got married. An ardent feminist, she kept her own name and we gave our children both of our surnames. She wrote, acted in local plays, ran film groups, and threw herself headlong into our childrens lives.
I sit and contemplate how much Laurie has lost. She can no longer write. She cant even sign her own name. The televisions remote control mystifies her. When we go out for dinner, she cant read the menu. She no longer showers, seemingly afraid of the water. She wears the same clothes, day after day. Her hair has grown ragged and when the telephone rings, she simply looks at it.
I understood the word progressive when her neurologist first diagnosed it. But I realize I never really absorbed it, fooling myself into thinking that however she was would remain the same way. When Id notice some new diminishment, Id just reorder my thinking, believing that this was now the new normal.
I now understand none of thats true. Ive lost her. And shell never come back.
Im nervous. For months, Lauren, Bryn, and I have been talking about a next step for Laurie. I travel a lot for work; I cant care for her at home anymore. Were worried about her wandering. After touring places, we settle on Avita of Needham, a memory care facility. Today, June 29, 2016, is the day she is supposed to move.
But Laurie seems completely unaware.
A care manager we hired to help us is at the apartment. Laurie, she says, Tom needs to go on a long business trip. Hes going to be gone for a while.
Laurie looks terrified. Do you feel afraid to be alone? she asks. Laurie nods.
The care manager continues. I know a place thats safe and fun and where you get to play brain games. Doesnt that sound good? Laurie nods again. Would you like to visit with me? Laurie nods a third time.
We go to the car and after a short drive are walking through the front door of Avita. The executive director greets us. Everything has been carefully staged. She and others gather around Laurie, hugging her and talking and leading her down a corridor and past a locked door. She doesnt turn around to look at me.
That night in bed I realize shell never sleep next to me again. Despair washes over me.
I call frequently to find out how shes doing, but I dont visit. The idea is to give her time to adjust, to become acclimated.
After two weeks, I finally come in to see her. Im waiting for the questionsWhere have you been? Why am I here? Can I go home now?and rehearsing my answerThis is your home now. Im preparing for the tears and anger.
Theres none of that. We visit, have a cup of coffee. I talk; she listens. I walk her back to her room, she sits in a chair, and I leave.
This really is her home now.
Nine months later, Laurie and I are sitting in the living room at Avita. My mother died yesterday, I tell her. They had been close. Laurie turned to my mom when the children were first born and she felt out of her depth, wondering how she would ever manage motherhood.
Laurie just looks at me and stares.
Its been a year and a half, and Avitas executive director tells me Laurie needs more care than the facility can provide. I am not surprised.
When Laurie first entered, she could manage most everything, only needing some persuasion to take her medication or brush her teeth. Now shes largely incontinent, increasingly needs help eating, and is unsteady on her feet.
How could my wife have Alzheimers? She was only 56. - The Boston Globe