Activities room

They were getting ready to sing "O Come All Ye Faithful" when I showed up this morning. Max, the activities director, had distributed porcelain bells to a favored few, and I was happy to see that May was one of them. She was poised, bell at the ready, but suddenly everyone was calling her name and pointing toward me. She looked up and smiled, and searched for someone to take her bell.

We sat on the bench outside the activities room and she asked me what I had been doing.

A little hope

Looked in May's closet this afternoon and there were no clothes. Looked in all the drawers of her dresser--nothing there. Asked a staff person and she said all May's stuff was hanging in the laundry room. They keep it there now, because she was putting clothes on and off all day. Seen that, I said.

She'd wear three pairs of panties, two pairs of pants -- often with the shorter pair on top so you could see all four cuffs -- and usually three sweaters one on top of the other. They said they'd put her in her pajamas at night, and she'd take them off and sleep in a pair of slacks. Yeah, did that at home, every night. But they've put a stop to all that by taking the clothes away. Said she's more settled now, not nearly as restless. And she was. I'd already noticed it. "Settled" was a good choice of words. She smiled. Seemed relaxed. Very nice visit.

Stopped at the nurse's station on my way out and commented on the change. They said it's been like that for a few days now. Said they had changed the time of day they were administering some of her meds, thought it had "evened her out."

So they're doing something. Thinking about the things she does, and how they can change them. Getting her settled, evening her out. Day after tomorrow it'll be six weeks. There's an adjustment period, they said. Right, of course. Six weeks sounds about right. A little hope, for the first time in a long, long time.

Thanksgiving at the movies

Who goes to movies at noon on Thanksgiving Day, you may be wondering. Dads with kids with instructions to stay out of the house until the cooking is done. College-age cousins trying to delay the inevitable. Pairs of women without families who planned to meet here because, well, you know... But only one dementia couple, if our experience was statistically valid.

She thought the parking lot was "spooky." She recoiled just inside the doors, because the entrance was too cavernous. She was hungry so I bought the large bag of popcorn, but then she didn't eat any. When I asked her why, she said she forgot and took a handful. But then she forgot again.

She slept through 20 minutes of commercials and coming attractions, and when they ended she woke up and said, "Let's go home!" I told her the movie hadn't started yet and she said, "Oh." When it did start, she gave it about 10 minutes and then whispered, "I don't like this movie." So we walked out. I asked her if she needed to go to the bathroom and she said yes. I escorted her to the door of the women's room and watched her disappear through it. Then I worried that there might be another way out on the other side, so I walked into the men's room and saw that it was a small facility with only one way in or out. Even so, over on her side, she was unsure of what to do. I heard a toilet flush and then her voice saying, "Bill?" I answered her and was heading in, but she walked toward the sound of my voice and met me halfway.

The only other thing open was McDonald's, so we went there. I bought two McFlurries. Hers made her shiver, even though she was wearing two sweaters and a heavy coat. I bought her some coffee to warm her up, but she only took a sip or two. She asked to change tables, away from the cold window. I found a spot across from the fake fireplace. We sat down and I continued with my McFlurry, but she wasn't drinking her coffee. She said, "Let's go home."

In the car I explained that we weren't going home; we were going back to her room where she was staying now. She said okay. We drove on in silence. I took her in, punched in the security code, walked her to her room, took off her coat, hung it up, and got ready to tell her goodbye. She said, "Will you come see me sometime?" I'd heard those very same words, spoken in exactly the same way, from three-year-old Kevin, 36 years ago, the first time we left him with a babysitter -- he thought his mother and I were never coming back.

I told her I DO come back, every other day. "I was here Friday, and Sunday, and Tuesday, and today is Thursday, and I'll be back on Saturday." "You do?" she said. I left her with a staff person and walked with a steady gait down the long corridor. At the end I turned and looked back. She was standing where I left her, looking. I waved and she waved. I'll be back tomorrow.

Holiday plans

Tomorrow it will be four weeks since I took May to live in the residential living alternative for individuals with Alzheimer's disease and other types of memory impairments. It will also be Thanksgiving Day. I am going to pick her up at the residential living alternative and take her to a movie. It can't be a noisy film, or a violent one, or a chaotic one, or a jarringly visual one, or one in which there's a terminal illness. Ice cream at the snack bar would be a good thing. A friendly ticket-taker with no exaggerated mannerisms. A row of seats all to ourselves. A restroom with only one way in and out. The less said about the holiday, the better. Thankful is not where she's at right now.

It's time...

An email I sent to Annie a few minutes ago:

Subject: Mom

Just now, she came to me at my desk, walking slow and talking soft and sad. She said, "I don't think I can take care of myself anymore." I said we would get her some help and she said okay. I told her to try to make it through today, and we would work on this tomorrow. And she said okay.

Tomorrow we are taking her to live at an assisted living facility. We made that decision ten days ago.

How the work gets done

I mowed the lawn today and May showed up right behind me with the rake. When we finished, she asked what to do with all the piles of grass clippings she had made. I told her I would bring the yard waste sack. I walked the mower back to the garage and was surprised to find her right behind me, in the garage I had recently swept clean, holding a rake-load of fresh green grass that was falling between the tines at a distressing rate. "Get out of this garage with that," I shouted. "Out, out out!" I grabbed the yard waste sack, carried it to the back yard, and showed her how to put the grass in it. Then I went to the front yard to clip around the tree. She showed up a few minutes later, empty-handed. "Where's your rake?" I asked. She didn't know. I told her to go look for it in the back yard and bring it around to the front. She showed up with a shovel and asked me if we should dig up the whole flower bed, or just a little bit. I told her we were raking the yard, but we needed the rake. She left again and came back with the hose, adjusting the nozzle as she got closer to me. "No, no, no, not the hose. Bring the... No, wait, put down the hose and stand right where you are." I walked around the house and brought back the rake. She raked all the clippings onto the sidewalk, which would now have to be swept after we put the larger pieces in the sack.

This is how we do everything.

Would you like cardboard with that?

She sat down on the couch to eat a bowl of dry uncooked noodles. On the coffee table was an in-progress jigsaw puzzle. I was watching carefully to see if she could actually chew and swallow those dry crispy noodles. Suddenly she leaned forward with her fork and scooped up four puzzle pieces -- border pieces! -- and was on the way to her mouth with them. I shouted her name. She looked up. "Are you going to eat those puzzle pieces," I asked. "They won't hurt me," she said. "But it will hurt the puzzle," I told her.

She took the fork down from her mouth and dumped the puzzle pieces into the bowl. It being Adam's puzzle, he moved close enough to keep an eye on things. For a long time, nothing happened. Eventually though, she made a move with the fork and Adam and I both jumped. She had missed the puzzle pieces, but I decided it was time to reach in and take them out of the bowl. She looked at Adam and me as if we were fuddy-duddies.

The Caregiver's Mirage

Walking is good for her. But she walks much slower than I do, and there are parts of my usual walking route where I like to run. So I didn't always invite her to come along, and I would feel bad about it. Then one day it dawned on me: she could ride her bike! That would allow her to keep up with my pace, even if I were running.

Meet, if you will, The Caregiver's Mirage: the sudden appearance of a simple solution, which vanishes as you get closer to it.

The first time we tried the "I walk/you ride" approach, she ran me down from behind not once, but twice. And any fence or flowerbed close to the sidewalk exerted a gravitational pull that slowly pulled her closer until she crashed into it.

We set out together this morning and she was sucked into the first picket fence that came along--two houses down from where we live. The fence yielded to her impact before finally snapping back. I'm thinking, one more freeze/thaw cycle and I would have been involved in a "make-good" negotiation with my neighbor one house removed.

Seeing her crash reminded me of how dangerous it was to walk in front of her, so I asked her to take the lead. However, when she couldn't see me, she doubted that I was really back there. She kept saying something that I couldn't hear so I ran up alongside her and said "I can't hear you" and she said, "That's all I needed--I didn't know where you were."

At the farthest distance from home she decided to get off and push her bike, which makes for a pace even slower than ordinary walking. Was there a problem? No, she just wanted to walk the bike for a while. And so I resigned myself to Dementia's First Law of Caregiving, of which The Caregiver's Mirage is only a proof point: Everything is hard, and any attempt find an easy way will turn into a rebuke of your prideful nature.

Normal Grammy

I was out of town on business for five days. I got back yesterday and at bedtime, Adam asked if he could sleep with me. I said he could. He and I got in bed but May was having trouble getting settled and got up to go to the bathroom for the second time in about two minutes. While she was out of the room, Adam, on the verge of falling asleep, turned his head toward mine and said, "She's getting worse and worse. Normal Grammy would be better."

'If you see me on the street...'

This morning she asked me how much longer I was going to stay here. I told her she had to give me some time to find a place. Tonight she went for a walk and came back looking sad. "I need to leave," she said. "I've got all this family in Oklahoma, and most of them are not doing well, and they need my help. I'm sorry, I don't want to hurt you, but I have to go. I'm not ever going to get married and I need to be somewhere I can do some good."

"But you've been telling me I had to leave," I said. "You mean, nobody's going to live here?"

She said she was sorry and she hoped we could always be friends, said it would make her sad if she left on bad terms. "I'll probably be back this way sometime," she said. "If you see me on the street I hope you'll wave."

Kicked out

Okay, things have changed...

Saturday afternoon I realized she wasn't in the house. I checked with the neighbors and no one had seen her. I decided the best thing to do was wait--because if I went looking for her and she came back, we'd miss each other. It wasn't long before a policeman showed up at the door, with May behind him. He said she had walked to the 7-Eleven and told them that she was being followed and had left a two-year-old at home alone.

Saturday night she told me that she didn't know who I was, or where I came from, but there was no food in the house so she thought it was time for me to move on. I told her I would need some time. I thought maybe this would all blow over.

Sunday morning she was standing at the foot of my bed when I woke up, and she was angry. "I don't know who you are, or what you're doing here, but I can't go on like this," she said. "This has been my house forever and I don't know why you think you can just keep staying here. So you're going to have to leave."

At that point, I had a brilliant idea. I took her downstairs and showed her a picture--her favorite--of me and her laughing in the backyard of our farm house in Missouri. I said, "This was taken at the farm." She snapped, "I know what that is." I took that as a good sign. I told her that I was the guy in the picture. I pulled out the photo album and showed her pictures of me back through our 30 years of marriage. It was my Perry Mason moment. She said, "I see all these pictures ... and they don't do a thing for me. I want you to leave."

Yesterday I had a meeting in Chicago and she didn't ask when I'd be back, as she usually does. I took my time, and got back about 5 o'clock. She was kind of friendly. We made it through the evening without any demands that I leave. I thought maybe we were done with that one.

But just now she came to me at my desk, and in a friendly sort of way, she said, "Do you know when you'll be leaving?" I said I didn't know. She calmly said, "It doesn't have to be today. But I've got babies coming, and I need the room." I asked her when the babies would be arriving. She said, "I don't know, but the weather's changing, and this time of year, they just bundle all up and the house gets really full."

As I've been writing this, she has come back twice to ask when I'll be leaving. I told her I'm not sure but as soon as I find out, she'll be the first one to know.

What's going on...

I started this journal as a way to keep track of how the condition was progressing. I wanted to have an accurate answer if a doctor should ask me, "And how long has such-and-such been going on?" Later, as more and more people would ask, "How is May doing," I started giving out the address of this site so I didn't always have to be talking about the latest episodes. And then I reached a point where I just didn't want to write about it. For thing, I realized that no doctor was ever going to ask any more questions. It doesn't matter when a certain symptom showed up, and there's nothing to be done. Plus they're never going to guess at the one thing that would enable you to plan for the future: how much time do we have?

So for everyone who wants to keep up, let me just say this:

Every two or three days, we have an outbreak of belligerence, consistent with the symptoms of Sundowner's Syndrome. Out of the blue, she'll say things like this: "I take care of all these little boys. I cook for them. I dress them. I wash their clothes. I make sure they have a place to sleep. And I can't see that you're even lifting a finger to help." Or like this, "I don't know what right you have to keep me here when all I want to do is go home. I miss my friends. I'm not sure when you came or how you got here, but you have no right to keep me here when I just want to be back in Oklahoma."

Also, four or five nights a week, she gets up shortly after midnight and stays up the rest of the night. She goes into her closet and moves clothes around for five or six hours sometimes. When I get up at 6, she expects me to take her to lunch. She's astounded when I tell her it's 6 in the morning.

During the day, she falls asleep anytime she slows down. She falls asleep with a cup of coffee in her hands and dumps it all over herself, she falls asleep in restaurants waiting for food to come, she asks me a question and falls asleep before I can answer.

She has trouble making a sentence. The words just aren't available to her.

She gets very anxious if she can't find Adam. He went to a birthday party this week and she repeatedly came into my work space to say "I can't find Adam" or "Do you know where Adam is?" Explaining that he's at a birthday party doesn't help. She wants him where she can see him.

If I'm not here to put food in front of her, she doesn't eat. (I have help in the house now, so she's not alone if I have to meet with clients.) One day last week I left home at 7 in the morning and got back about 3. She said she didn't feel good. I asked if she had eaten lunch and she said no. That may or may not have been true, but the odds were that she hadn't eaten lunch or breakfast. I made her a sandwich and immediately after eating it she said "Oh, I feel so much better!"

She puts dirty dishes into the dishwasher with clean dishes, then comes back in a few minutes and unloads the dishwasher. So you find dirty plates and utensils put away with clean ones. You learn to inspect the tines of your fork.

She often thinks her dad is here. The other day she walked into the kitchen while I was cooking a veggie burger. "Is that for Dad?" she asked.

That's basically it for now. I'll continue to write, but probably not as frequently. You might want to check about once a month.

Groundhog Day

For breakfast I made two slices of Health Nut toast, spread with a veneer of organic peanut butter and drizzled with clover honey. I served it in the family room. May finished hers quickly while I took a more leisurely pace. As soon as I finished, she picked up her plate and reached for mine and asked, "Would you like some more?" as if this had been her production all along. My first touchy situation of the day. I decided to play along.

"Thank you," I said, "I'd love another piece." I had a line of sight to the kitchen so I watched to see where she might get stuck. I saw her plunge a knife into the jar of peanut butter and thought, oh no, I'm not eating this on untoasted bread!

I ran for the kitchen, only to find that no bread at all was involved in this procedure. Holding a glob of peanut butter on the end of a knife, she was staring down at an empty kitchen counter. "I can't make heads or tails of this," she said. I said, "I know. The bread's in the pantry." She yielded the kitchen to me and I made us a second serving of breakfast.

Back in the family room, as I chewed my last bite, she reached for my plate and said, "Would you like some more?"

It came with a train

I haven't written in a while. Just been too much to even feel like capturing in words. But here's something that just happened five minutes ago. I'm sitting at my desk and she walks up and says, "I need help with something about like this (she makes a shape with her hands indicating about the size of a cereal box) and I think it came in with a train. I'm not sure, but, I'm just not sure what to do. I think there was a train..." And that's all I had to go on.

I asked if there was something I could see and she said yes. I followed her to the bathroom. Before I got there I could hear the exhaust fan running. It's not overhead, like most exhaust fans--it's in the wall, and you can see the world outside when it's running. It makes a lot of noise, so we never use it, but sometimes you hit the switch for it when you turn on the light.

I followed her into the bathroom and automatically turned off the fan switch. She said "Oh! Thank you." So the size she was making with her hands was the size of the fan. And the noise it made was sort of train-like. And it needed to be turned off. But she could not make any of that come out in words.

I went back to work and in a few minutes she was back. She tried to tell me something but couldn't get any words out. She finally said, "Never mind. I can't say it. I've done it before and I'll just do it again. I don't need to bother you."

She went off and was back in a few minutes. She said, "I'm sorry, I can't do it. I need help." I got up and followed her to the bathroom, where the fan was running again. I turned it off again and she thanked me again.

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.

So much better than gangsters

She stopped me on the way to bed and, with a look of concern on her face, said, "I've lost track of who I am. It seems like there's a family here, and I think I used to be a part of it. I want to be a part of it." I said you are, you're the matriarch. A look of pure delight spread across her face. "I am?" she said. Yes. This is our house, and we're the grandparents. She hugged me and said, "Oh, that makes me so happy."

I went back to the computer to sign off for the night and she stopped by again to say, "Tell me again, we're the grandparents?" So I told her again. "Oh, grandparents ... that's so much better than ... gangsters." You thought we were gangsters? "Well," she said, "when things get all ... funny ... it looks like gangsters to me." No, we're not gangsters. Just grandparents. She went to bed happy.

Just a guy

Tonight she calls me to her side and confides: "You know I have Alzheimer's..." As if I were just a guy who was carrying in the groceries. I said I knew. She asked how long I had known. I said I was the first to know, before the doctors.

At bed time she asks if she can say something and I say okay. "I love this house," she says. "I loved it from the first time I saw it, and I'm happy to share it with you. I don't know how that would work, but I'll share it with you. You wouldn't take it away from me, would you?" As if I not only carried the groceries in, but also had designs on spending the night.

Amazing...

Yesterday I took her with me to a meeting, and if you didn't know our story, you wouldn't have guessed that she had any health issues. Then, on the way home in the car, she looked at me and said, "Are we married?" I said we were. "Since when?" she asked. "Since 30 years ago. January 20th was our 30th anniversary." That was the most amazing thing she had heard in a long time.

Not out of the blue

Today is typical of how it's been for the past week or so.

Walking back from taking Adam to school, she said "Maybe I should get a job. I feel like I'm just not doing anything." We've been through this before, and I say it just wouldn't work for her to get a job. She started crying and cried off and on until lunchtime. Going out for lunch seemed to cheer her up, but after a few bites she started staring into the middle distance, and tears welled up and soon she was wiping them off her cheeks with her napkin.

Finally she spoke.

I just don't know who I am anymore. (Pause) I don't know ... who I am. I don't understand. What's wrong with me? How did it happen? What can I do? Did this just come out of the blue?

And so I began the tale I've told so many times.

No, it didn't come out of the blue. It started about five years ago, with memory problems. Then, you suddenly couldn't manage the checking account. Then you started getting lost in the car. And one day you went grocery shopping, and with $300 worth of groceries in the cart at the check-out counter, you couldn't figure out how to pay for it. So they pushed your cart to the side and you came home quite upset. Little by little, one step at a time, it's been coming. Not out of the blue.

Walking home from lunch she asked, "How long have you known?"

Since last november, officially, when we got the diagnosis. You were there, so you've known too. But I pretty much knew for a year before that. You used to forget though, which allowed you to be worry-free about it. Lately, you haven't been forgetting. You seem to know most of the time, and that's been hard on you.

"Can I stay at home?" she asked. "Yes you can."

Worse, now

It's Saturday morning and I was taking the opportunity to catch up on sleep. At about 7 o'clock I felt May's hand on my chest. She leaned close and said, "I'm confused." I gave up sleep and asked what she was confused about.

"You're my husband, right?"

"Is that what you're confused about?

"I don't know..."

"You know I'm the guy who takes care of you but you just want to be sure I'm your husband?

"I think so."

"Yes, I'm your husband."

(Long pause, during which I nearly go back to sleep)

"But you're my husband, right?

"Yes, that's right."

(Another long pause, in which I think I do drift into a light sleep)

"You're Bill, right?

"Are you really asking that?"

"I don't know...but...you're Bill, right?"

"Yes, I'm your husband, I'm the guy who takes care of you, and I'm Bill."

(Pause)

"Who's that woman that Bill has to take someone to see?"

"I'm Bill, and there is no woman that I have to take anyone to see."

"It's just so confusing with all these people coming and going."

"There's no one here but you, me and Adam. Ted's on a trip."

"Why does Ted live here?"

"Because he's Adam's dad and he takes care of Adam so I can take care of you."

"I want you to stay with me."

"You stay with me. I take care of you. This is our house."

"I love this house."

On the other hand

Every day, there are comments like this:

"Doesn't this taste great?"

"Look at that sky!"

"I would love to see the inside of that house."

"Isn't it great to be back in the city?"

"Thank you so much for letting me come with you."

"He's such a sweet boy."

"Don't the jades look great out there?"

"It's almost balmy out here!" (It isn't, not even close.)

"Look--you can see the clock!"

"I love that song."

It's like everything is for the first time.

How does this house work?

I was at the computer at 6 o'clock this morning when May appeared at my side and said, "I need someone to explain to me how the house works." I walked her back to the bed and asked her to explain what she meant, and then there was this:

"What do you mean, how the house works?"

"Well, there are all these people, coming and going. And I just don't know, I don't know how it works..."

"Okay, let's count the people. There's you and me and Adam. Adam's been with us since we bought this house. And then there's Ted, who's been living here since Thanksgiving. That's four people. Ted comes and goes. The rest of us don't."

"Where did this house come from? How did we get here?"

"This is our house. We own it. You like it, you like this house."

"I love this house."

"Yes you do. You tell me that all the time. You love this house."

"But, we own it? It's ours?"

"Yes, we own it."

"When did we get this house?"

"We moved in here in December, 2005 -- so, four-and-a-half years ago."

"And we own it?"

"Yes, we own it."

"Okay, okay."

Bedtime issues

She just came to me where I was working. Distress all over her face. "I'm having trouble getting to bed," she said, through tears. "I think I'm supposed to be doing something but I don't know what." I asked if she needed help and she nodded. I walked her upstairs and didn't see anything that she might have been working on. I told her there was nothing she was supposed to be doing. I walked her to the bathroom and told her to brush her teeth, put on her pajamas, and go on to bed. She was okay then. This feels like a whole new level of the disease.

Grapefruit, the metaphor

I am haunted by something.

I wasn't going to write about it, because we've already spent too much time in the kitchen in this space. But I can't get it out of my mind, and so, this seems like the only way...

Saturday morning I was at the kitchen counter preparing the grapefruit I had been dreaming of for breakfast. I am fairly meticulous in my grapefruit preparation. Every cut is precise. No part of the fruit is wasted. If I have to dig even one cell out with my spoon because of a missed cut, the whole experience is ruined for me. I had just finished when May showed up with her own grapefruit and knife. She placed hers on the counter next to mine, looked at me and said, "Now, how do I do this?"

Right away I saw trouble. She was poised to cut the fruit on its axis. There's no recovering once you make that mistake. I said, first of all, you have to cut along the equator. I turned it for her. To make sure, I made the cut myself. Then I said, cut this way (circumference) and this way, twice on each cell (radius). She nodded and I took my grapefruit to the TV room.

She joined me a few minutes later and we sat side-by-side, eating our breakfast. I was just finishing when she said she couldn't eat any more. Said she was full.

Full of grapefruit?

I looked over and saw half a grapefruit untouched, and another half mangled and battered. I told her I would eat the good half. When she passed it over to me, all I could do was stare. It was heartbreaking. The circumference cuts were all over the place. They strayed far from the rind, leaving valuable pulp unavailable to the spoon. The radial cuts were hit and miss. One side of a cell might be cut, but not the other, which makes the cell flip to one side when you try to dig it out. But that's not what bothered me.

All I could think was, this is her brain I'm looking at. This is what has happened to her cerebral cells. The precision is gone. Everything is approximate, a hopeful push to get it right, with guesswork for a guide and dexterity shot all to hell. And it's never going to get better. Only worse.

Preparing vegetables

I do the cooking now, but she wants to help. Tonight I asked her to wash some potatoes and slice them in small pieces. She stood there not knowing how to start. Finally she said, "I don't know what to do." I said, "First, wash the potatoes." She snapped, "I know that." So I backed off. She picked up a potato and started peeling it. I said no, don't peel it. Wash it and slice it. She froze again. No matter how many times I said, "Wash the potato," she never made a move toward the sink. I asked her if she were going to be able to do this and she said she didn't know.

Finally it occurred to me that maybe she could copy me if I did it. I washed a potato and sliced it. She seemed to understand, but reached for a potato without washing it. So I said, maybe if I washed and you sliced, we could do this. She nodded. I washed the potatoes one-by-one and handed them over to her for slicing. From time to time she would point to what she was doing and ask, "Is this how you want them?"

I moved on to start cooking the potatoes and pointed her toward an onion I had placed next to the cutting board. She held it up with an inquisitive look. Chop it up, I said. She went to work on it, checking with me every few minutes to ask if this was how I wanted it. It went a little better with the broccoli, and she had it down pat by the time we took on the red pepper.