What now?

I thought it was going to be a good day. Adam was a happy child walking to school. Ted was downstairs working. I was upstairs working. May was having one of her better days. She'd been upstairs with me all morning, but had gone downstairs with the kind of purposeful look that made me think she was doing laundry or straightening up the kitchen. Then the phone rang and I saw the name of our neighborhood bank in the caller ID. They asked for William or May. I said I was William. They asked if May were in the house. I said she was. There was a long pause. I asked what this was about. They said someone claiming to be May had just been in the bank. I said, just a minute...

I walked downstairs. No May. I told the voice on the phone that May was not in the house. I said she has Alzheimer's. "I thought so," said the voice. "She left the bank. I'll see if we can catch her." I ran over and they had her. She was talking to a personal banker, drinking bank coffee. She saw me and said, "I didn't know where to find you." Well, maybe, but she has been asking me where our money was, was it safe, and could she see it.

We talked and she calmed down. We went to lunch and came back and had a decent afternoon. About 6 o'clock I told her I was going for a walk and did she want to come. She did. As has happened often lately, she pointed things out to me on our walk as if I were a stranger to the neighborhood. Toward the end of the walk she said, "So do you think you'll ever have kids?" I told her I thought I was through having kids. It seemed to bother her to learn that I had kids of my own. She walked quietly for another block and then said, "So are you going to stay around these parts for a while?" I said I was--I was going to stay here and take care of her. She asked me if I thought I would buy a house. I said no, I figured I would keep living with her. "Oh, I don't know about that," she said.

We've had this conversation before, and I usually go straight to the part about our being married, and she usually is happy to hear that. But tonight I thought maybe I could just play along and we'd get back home and she would realize that it was pretty normal to see me there in the house. But we were still a block from the house and the conversation was getting kind of sticky. So I said I was going to stay in the house with her because I was her husband and had been for 30 years.

She stopped dead in her tracks, waved her arms and said, "This is what makes me really, really mad. Why don't people tell me things? This is my life! Why don't I know this?" She cried the rest of the way home, asking "Where was I? How did I miss all this? Did I have friends? What did I do?" And so I said the things I've learned to say to restore her personal history. There was our house on Calder Court. There was the farm, and our dogs Butch and Ariel and your friends Barb and Abby and Becky and Judy and Colleen. There was the house by the river in Washington. There was our apartment by the lake in Chicago where Adam stood in the window and watched the boats. She does remember all those places, and is comforted to hear them named each in its turn.

Every day now is capable of bringing a new surprise. Finding out that she's been at the bank when you were certain she was downstairs is a big one. What now? Where are we in this deal? I think I'll see if the good people at Northwestern can tell me what I need to be doing.

Woman? What woman?

Driving home from a psychiatrist appointment, at which May answered every question in a incoherent mumble from a slouched position on the couch, she comes alive for the first time all day and with a mischievous gleam in her eye asks a loaded question:

"You got a girlfriend?"

"What? A girlfriend? Oh, no."

"I don't know, it might be fun."

"No, I don't need a girlfriend."

"You were looking kind of sad the other day and I thought you could use a girlfriend."

"Usually one's wife does not recommend that you get a girlfriend as a cure for sadness."

"Are we married?"

"Yes! You're my wife!"

"Well, well..."

I turn down our alley and as the garage door is opening, she has one more question.

"So who is this woman?"

Two time

Sitting in a restaurant at lunch, May tells me to look at those two women across the street. I look and I only see one, and she's just walking along like anyone else. A few minutes later, leaving the restaurant, she calmly remarks, "Everybody is two-headed today." I point to three guys across the way and ask, "Those guys have two heads?" She says they do. Nearly home, there's a woman a block away walking toward us pushing a baby stroller. May says, "I see two women...no...it's one. It's not scary, just a little odd, that's all."

Panic

To the emergency room tonight. Panic attacks (her, not me). I was afraid we wouldn't make it through the night. Got some little pills that calm her down. Lorazepam. Whoa -- just googled it. Think we'll use it sparingly.

Adam helps his grammy

We're sitting in the living room. May asks me what I do for a living. I say I write speeches. "Oh," she says, "my husband wrote speeches." Adam, who was busy writing out a math problem (Adam has 10 pencils. He found 10 more on the playground. How many pencils does Adam have?) suddenly looks up and says, "He IS your husband!" May stares at him in disbelief. He's right, I say, I am your husband.

Am I your...?

Today's lunch conversation:

Am I your ... oh, I can't, never mind, I lost it...

No, no, finish the sentence. Am...I...your...what?

Are you my...

No, no, this is you talking. Am I your...what?

(she shakes her head in confusion)

Okay, repeat after me: Am I...

Am I...

Your...

Your...

Am I your...what?

Am I your ... your ... wife?

YES! Yes you are!

I am?

Yes.

Since when?

This always blows your mind -- since 30 years ago.

Oh, I'm soooo sorry...

She tells me it's going to take a while for this to sink in. She excuses herself to visit the washroom. She returns and apologizes for asking so many questions, but everything is so new to her and she's trying to make sense of it. I say that's fine, ask away.

So, you and me ... we're brother and sister?

No, husband and wife.

Really? Oh, that's so much better!

Better for you, better for me, and REALLY better for our daughter.

Annie! Is Annie okay?

Annie's fine.

We finish our sandwiches and our cookies and walk out to the car. Halfway home, the questions start again:

I'm sorry to ask so many questions, but I'm still getting used to all this...

That's fine. What do you want to know?

You and me ... we're brother and sister?

Something new

Visual problems. She says "everything looks different." We headed out to lunch in the car but turned around and came back because it was very upsetting to her that trees, cars and buildings didn't look the way they were supposed to. Back in the kitchen, the canned goods in the pantry didn't look right. Now the room in which I work, where she spends 90 percent of her time, doesn't look right to her.

I knew this day would come. The Alzheimer's Association says, "As the disease progresses, changes in vision may make it difficult for the person to distinguish colors and understand what is being seen."

An email from downstairs

Last night I received an email from Ted. He sent it from his bedroom downstairs. It read:

what may said when i came home:

she pulled me aside and said that some of your clients were from the mafia. she sort of suggested i take adam somewhere safe. she said something along the lines of they came in and took over the house. she said not to tell you. just then someone banged on the door and i got really scared!...but it was you.

pretty weird huh? at least she didn't want adam to hear any of the mafia stuff. when adam actually came near she stopped, and it was at this moment she had started talking about how the mafia owned the house, and then after adam went away she was able to pick right back up on where she left off.

And every night we tells the tale of history back...

I had just gone to sleep last night when I heard May getting out of bed. I asked where she was going and she said "I'm going to sleep with Adam." I told her to stay with me and she said, "I don't even know who you are." I said I was her husband and she said, "You're kidding. Since when?" I said since 30 years ago. She didn't believe me. So I walked her back:

Do you remember the farm?

Yes.

I was there.

Do you remember Annie?

Annie, yes.

She's our daughter.

We made Annie?

Yes we did. And she will be 28 years old on her next birthday, so it's a good thing we've been married 30 years.

She said she just couldn't make sense of it. We stayed awake for about 30 minutes trying to make our history stick in her head. We made only a little progress. This morning we were back on the "this is MY house" track. I was taking a bath and she came in and sat down on the floor next to the tub. She said she needed to talk to me and I said okay. "This is MY house," she started. "I've had it for a long time..." She paused and I took the opportunity to say it's OUR house, your name AND my name are on the deed. "I'd like to see that deed," she said.

MY house, MY things

She wakes me up crying at 5:30 this morning. I ask her what's wrong.

"This has been my house forever, and now all these people are here, coming and going, and they're taking my stuff. (She waves her hand slowly up and down toward the bookcase a few feet from her face.) That's all mine, and I've had it forever. And now all these people, I don't know who they are, they're taking it from me."

"I don't see any people. There's just you and me here. Adam and Ted are downstairs. Adam's been here as long as we have. Ted came last November, and he's not taking anything."

(She stops crying and relaxes a bit, then asks me a question.)

"How did you come here?"

"How did YOU come here?"

"I don't know, I just did, I guess..."

"We came here together."

"We DID?"

"Yes, we found this house together, we bought it together, we moved here together."

"REALLY?"

"Yes."

"Oh, that makes me feel so much better."

The sleep thing

The whole house was asleep at 10 o'clock last night, except for me. I stayed up another hour-and-a half to get some things done. This was to be my night to get eight hours of sleep, which meant I would have to stay down until 7:30 in the morning. I thought I could do that.

At first light, May woke me up to ask if I were going to be home today. I told her I needed more sleep. She woke me up twice again before 6 o'clock, and each time I said I was trying to sleep. After the third incident, she got up and started pacing around the bedroom. It pushed a few buttons for me. "Every day you sleep until 8 o'clock," I said, "while I get six hours of sleep. And now, on the day I could sleep until 8 o'clock, you insist on waking me up." Oddly enough, that didn't help matters. I invited her back to bed.

She was on her knees next to me, leaning forward with head in hands. She said, "I just thought when I got this house, it would be a place where people could come... I think this is my house, I don't even know..."

Her use of the first person pushed another button.

"This is OUR house," I said. "It's not just YOUR house." And from there, we went to this:

"I'm sorry, our house. I just want to stay here."

"I want you to stay here too, but this is a circular argument. You are going to stay here, unless you keep waking me up to tell me you want to stay here."

She managed to laugh through the tears.

"I don't want you to send me away..."

"I'm not going to send you away -- unless you keep waking me up to tell me you don't want to be sent away. If you keep waking me up to tell me you don't want to be sent away, you're going to be sent away. You got that?"

She laughed and nodded, and then all was well. She left the bed and opened the blinds to see if we got the rain that was predicted for last night. And I was wide awake, with another six hours of sleep. But at least they were straight through; I work with a lot of moms of young families who would probably see six hours of sleep as a wonderful gift, and six uninterrupted hours as the lap of luxury.

Daily chat

The constant, daily conversation boils down to this: IF you are my husband, and IF this is my house, I'll be okay. And those are big if's. From there we move on to "if I can stay here" and "if you'll take care of me." And we eventually get around to "but I want to participate in what goes on here" and "I don't want anybody to coming in here to help" and "I don't want to be stuck here all the time." A meal without tears is a rare thing, and a welcome, welcome thing; "huge," as a certain golfer would say.