Little things around the house

It bothers her when the light in the mud room is on, or the lights in the back yard. But she always asks if she can turn them off. She thinks I may have a reason for leaving them on, which I never do. Last night she came into the living room with an anxious look, waving her hands toward the back of the house. She said, "Is...? Can...? Oh, I don't..." And she started to turn away discouraged. "Turn off the light?" I said. She spun around and pointed her index finger at me. "YES!," she said, "THANK YOU!" And she was off to darken the mud room.

***

Today I was standing at the pantry door, trying to figure out what to have for lunch. It was complicated by the fact that it was 2:30 in the afternoon, and my decision would have dinner implications. May arrived and stared silently with me into the canned goods. She was the first to speak. "I used to know how to do this. I could just look in there and pick out something to fix. I guess I've forgotten how to do that."

Laughter in the house!

"When is Ted coming?"

"Is Ted here?"

"Have you heard from Ted?"

Those questions have been constant for almost a week. So finally last night I said, "What's this obsession with Ted? He's not here. He's not coming. He's at work. I don't know when he's coming. Don't ask me about him anymore."

I said it in a nice way; she chuckled and said she would try to stop asking.

An hour later she says, "Is Adam downstairs by himself?" "Yeah," I say, thinking, if we're upstairs, of course he's downstairs by himself. Who would be with him? "Oh, I get it," I say. "You can't ask if Ted's here, so you'll just ask if Adam's by himself. Like, who else could possibly be with him?" She thinks that's funny, so I decide to play it for all it's worth.

"You sly fox," I tease. "Who could be downstairs with Adam? Oh yeah, that guy I'm not supposed to ask about! Well, there's more than one way to skin a cat..."

She laughs hard, and possibly revels in the fact that she's been called a sly fox. I laugh too. It feels really good to be laughing together.

Another hour goes by, and I'm sitting at my desk thinking about how I might tell this story in a blog entry. She looks at me and asks what I'm smiling about. I tell her I'm just remembering her sly way of asking if Ted is here. Her face contorts in a manner that says, give me more clues, I don't know what you're talking about. So I tell her the whole story and she enjoys it all over it again. As do I. Two good laughs before bedtime. Best medicine there is.

Clean? Or dirty?

She points to a plastic tub on the floor and says, "I don't know if those are clean or dirty. I guess I should just start over." In the tub are fluffy brown towels and a brown bed sheet. Next to the tub is an ironing board with a brown shirt on it. I consider the evidence thoughtfully. "Well," I say, "you obviously were ironing a brown shirt. It must have been clean. Everything in the tub is brown. My observation is that you typically go to the basement with dirty laundry that's all mixed up, and come back with clean laundry sorted by color. I think you separated all the brown stuff in the basement, washed it, then brought it back here. You stopped over there to iron the shirt. I say, these towels and this sheet are clean." That makes sense to her, so I go back to what I was doing.

Twenty minutes later, she says, "I guess I'm going to just wash this again. I don't know if it's clean or dirty." To which I say, "You know, it's all brown. That makes me think it's been sorted, washed, dried, and brought back here. So I say its clean." I take the shirt upstairs to hang it up. She disappears with the tub.

Several hours later she's back with the tub.

"I don't know if these are clean or dirty..."

"CLEAN!"

She takes the towels out and starts folding them on the couch. On about the third towel, she turns and says, "You know, I didn't ask to be like this..." There are tears on her cheeks.

But she was no longer asking if the laundry was clean or not.

Lunch amnesia

She's not feeling well because of a cold. I asked her if she would like to get out of the house and go to lunch, or would she rather eat here. She couldn't decide. I said if it didn't matter, I'd rather stay home and I would fix her something. I went downstairs and warmed up some leftover chicken and rice and took it to her in the living room. She said thanks, and I came back upstairs to work.

Thirty minutes later she appears in my workspace and says, "Are we going to lunch?" She can tell by the way I look at her that something is wrong. I ask her if she ate what I gave her, and she doesn't know. I walk with her downstairs to see if there's any evidence. She finds a half-eaten bowl of chicken and rice in the kitchen and holds it up for me to see. This is upsetting to her, that she ate and doesn't remember. I go back to work.

Another thirty minutes later, she shows up with her purse in hand and says, "So, when are we going to lunch?" Again she reads the look on my face. I tell her she already ate, and she remembers enough to be really upset. She's sleeping now.

***

Last night I was de-cluttering a room. I was about three-quarters finished, with a pile of stuff on the floor that needed to go to the trash or to the basement. The phone rang, and while I took the call, she decided to "help" by putting everything back on the shelves I had just emptied. I couldn't mask a slight irritation when I came back. After I had taken the stuff back off the shelves and made several trips to the garbage can and the basement, she looked at me and said, "I'm not going to get any better am I?"

A night out

We drove into Chicago last night, to attend a focus group for early onset Alzheimer's patients and caregivers -- patients in one room and caregivers in another. At the end, the patients came into our room and May's face was aglow. She loves getting together with these people. She searched for the words to express what she was feeling. It came out something like this:

"Is there a way for all of us to ... uh ... do this again ... without any fru-fru (wave of the hands). It's just so good to sit and talk."

Afterward, one of the patients came over and said she and May should get together and ride bikes, so we gave her our phone number. On the way home, I told her what went on in my room, what people had said and what I had said (not much). I described all the people who were there, the ones we knew and the ones who were new to us, and reminded her what each of their stories were. She asked me several times, "What's next?" Each time I explained that this was the second focus group we had been to, but there was no structure in place for ongoing meetings. All in all, a rich and touching conversation for 30 minutes. Two blocks from home, the following Q&A broke out:

"Where did we go tonight?"

"You don't know where we went?"

"No."

"I'm going to ask you some questions. I'm not trying to make it hard on you. I just need to know how your brain is working."

"Okay."

"Can you remember anything about this evening?"

"No."

"Do you know how long we've been out of the house?"

"Two or three hours, I think..."

"Do you think we stayed here in Evanston, or went into Chicago?"

"I think we went to Chicago."

"Do you remember where we parked?"

"In that place that goes round and round."

"Yes, the parking garage."

"Yes."

"It's a parking garage we've been to many times. It's across from what?"

"I don't know."

"It's across from the hospital. We went into the hospital and went to a meeting. Do you remember anything about the meeting."

"You went to your place and I went to mine."

"And what did we do?"

"I don't know."

"We went to a focus group. For early onset Alzheimer's. I went with the caregivers and you went with the patients."

Quiet. Then, hands over face...

"I hate this."

Anyone for chicken?

She took out a package of frozen chicken breasts this morning and put them in the sink to thaw. But we ate dinner at Subway. So I ask her to cook the chicken breasts before they go bad, and we could eat them tomorrow. Next time I see her, she's sorting laundry. I ask her to cook the chicken. Next time I see her, she's rearranging the living room. I ask her to cook the chicken--the chicken in the sink. I go into the bathroom to rinse away the itchy little hairs left over from my haircut today. She knocks on the door and says, "I don't know what I'm supposed to wash." I say, "Don't wash anything, cook the chicken. Cut it into little pieces, put them in the frying pan, cook it, put them in the refrigerator, we'll eat them tomorrow." When I finish washing my head, I go into the kitchen to find her folding a large empty frozen food package that I recognize as Adam's chicken nuggets. The frying pan is sizzling with frozen breaded chunks of chicken that are meant to be heat-and-serve. I look at the raw chicken breasts in the sink. "What," she says, "isn't this what you wanted me to do?" I tell her I wanted her to cook the raw chicken in the sink. "I thought you wanted me to cook ALL the chicken," she says.

Why am I in the basement?

Adam played with the hose Monday night and came in with wet shoes. On Tuesday morning, getting him dressed, I asked May if his shoes were dry. She checked and reported that they were pretty wet. I told her to put them in the dryer for a few minutes. She went to the basement, stayed gone for a few minutes, and then came back carrying the shoes. "These are really wet," she said. "He can't wear these."

"Exactly," I said, "that's why you took them to the basement--to put them in the dryer." "Oh," she said, and went back to the basement.

A few minutes later, she was back. "I don't know what I'm supposed to be doing in the basement," she told me. And then I remembered what I was dealing with. We forget, sometimes, how confusing a simple task can get. "Let's go take a look," I said.

In the basement, I found the dryer running. "What's in there?" I asked. "I don't know," she said. I opened the door and found white things spinning, still quite wet. They hadn't been in there long. "Where are Adam's shoes?" "I don't know."

I looked in the washing machine, and there were the shoes, on top of clean clothes that were still wet, apparently from yesterday's wash. "Take the clothes out of the dryer and put them in the washer," I said. She started removing the clothes from the washer. "No, don't do that. Don't take wet clothes out of the washer just to put other wet clothes into it." She said she didn't want to mix the two batches. So I closed the washer lid and piled the clothes from the dryer on top of it, took a few towels-waiting-to-be-washed from a pile on the floor, tossed them into the dryer with the shoes, and we were back on-task.

I haven't posted in a while. But I woke up this morning with those words: "I don't know what I'm supposed to be doing in the basement." It seemed like I should write about it.

In the night

Last week while Annie and Story were with us, I was awakened by baby cries from downstairs. It seemed to last longer than the usual diaper change, so I nudged May and told her to see if Annie needed any help. She came back a few minutes later and I asked her what was wrong and she couldn't find the words to make a sentence. So I just rolled over and went back to sleep. 

Later in the night I was awakened by May, who was standing on the floor by my side of the bed. "Where do you want me?" she asked. I noticed she was wearing a robe, which meant she hadn't just gotten up to go to the bathroom. I pointed to her place in the bed and said "right here." As she climbed back into bed I asked where she had been. "I don't know," she said. 

This morning, just before dawn, I sat up to see what time it was. May woke up and looked at my pillow, where my head had been, and said "Oh my gosh, a cicada." I looked down and saw only a fold in the pillow case. I asked what she had seen and she said "a big bug." I switched on the bedside lamp and she looked, lifted the pillow, searched around and asked "where did it go?" I switched off the lamp and lay my head back down at the point of the cicada sighting and we both went back to sleep.  

Where we live

She's been asking again of late how we ended up in Chicago. I tell her the whole tale, basically recreating the 1990s. She seems to enjoy that story. Tonight, coming home from a movie in downtown Evanston, she looked around our suburban neighborhood with a troubled look on her face and finally asked, "Now do we ... where ... do we live in Evanston?" I assured her that we do. I'm not sure what the confusion was, but it seemed that she was having trouble connecting the downtown look we had just left with the suburban look all around us. 

Thought we had more than one

She came into the house and asked if we had any yard waste bags. I said no, but they sell them at the hardware store. She said she would walk over and get some. Some hours later she came into the house and said, "I thought we had more than one yard waste bag." I said if we have one, then we have more than one, because the only way we would have one would be that she bought it, and they sell them in bundles. I reminded her that the last time I had seen her, she was heading out to the hardware store to buy yard waste bags. But she couldn't remember if she had made it there, or if she had bought anything. I walked outside to where she had been working and found a filled yard waste bag and a few feet beyond it, the bundle that she had bought. I showed it to her and she went back to work. 

Later, as I was eating lunch, she came in and said, "I thought we had more than one..." and then shook her head and said, "Now I don't remember what I was going to ask about." I said, "You thought we had more than one ... yard waste bag?" Yes, that was it. I said we have a whole bundle and she asked where. I walked out to where she had been working and found the bundle leaning against the house. I brought it to her and she told me I was wonderful. 

A conversation about the future

I found her in the living room with the folder of information from the support group in her hand. She looked up and asked, "Am I just going to blunder into old age?" There are many wrong ways to answer this question, so I just kept my mouth shut. 

"I don't want to be one of those old people walking with a cane," she said. Three weeks ago, she was asking for Annie to come because she thought she was going to die within a matter of days. I didn't want to send us back in that direction, so again I didn't say anything. 

She put the folder down and said, "Actually, I don't want to talk about it." 

"Neither do I," I said. 

What did we do today?

We spent the day in Chicago. Sitting in 5 o'clock traffic she pointed at the radio and said, "Could you turn down...that?" I turned it down and this conversation began:

"I don't know what we did today."

"Metaphysically, or literally?"

"Literally. I don't know what we did all day."

"Well this is Wednesday. On Wednesdays we drive into Chicago and go to our support group in the morning. So that's how we started our day. When the session was over, it was lunch time. Do you remember where we ate?"

"No."

"We went to Water Tower Place and ate at Food Life. What did you have?"

"I don't know."

"Sesame chicken."

"Oh yeah."

"And I called yesterday to make appointments to get our hair cut, but they couldn't take us until 3 o'clock. So we had two hours to kill after lunch. What did we do?"

"I don't know."

"We went shopping. And then we took a cab to Mel's place and I got my hair cut and then he cut your hair. Then we took a cab back to the parking lot, and now we're driving home."

"Okay, thank you. I didn't know."

Thirty minutes later we're back in Evanston and she reaches over and turns the radio down herself.

"Okay, I've forgotten again. Help me remember."

"We went to our group session. Then we ate lunch. Then what?"

"We got our hair cut."

"No, we went shopping. You got some jeans and I got a computer bag."

"Oh, right."

"Then we got our hair cut and then we came home."

"Okay. Good. I think if we do this every day, I'll start to get my memory back."

What 'progressive' means

At our last support group meeting, they gave May a book on "progressive memory loss" and asked her to bring it back this week so someone else could read it. She's been working on it every day, like a homework assignment. Yesterday she looked up from her reading and said, "So, do I have progressive memory loss?" I said yes. She looked concerned and I said, "You know when you leave your purse somewhere and we have to go back for it and I show a hint of displeasure and then you say, 'You know, it's only going to get worse?'" She recognized that scene. "Well," I said, "that's what you're talking about--it's only going to get worse because it's progressive." That seemed to satisfy her.

A troublesome schedule

At our first support group meeting, they gave both of us a folder stuffed with information. There's one sheet of paper with all 12 weeks laid out with guest speakers and areas of emphasis. Every few days May comes to me with this sheet of paper in her hand and a very worried look on her face. She can't find the words to ask me about it. She holds it up and says, "This ... these ... it's something I think I'm supposed to do ... but ... I don't know..." And I say those are the 12 weeks of the support group we're going to, not to worry, it's every Wednesday, we're both supposed to go, and we're doing it. 

Last time this happened, I asked her, "Do you know what month it is?" She said no, but looking down at the schedule, she started making guesses: "March? April?" I told her it was March, we had already been to the sessions on March 11 and 18, and we would go again on the 25th. "And you like it," I reminded her. "Oh yeah, they're nice," she said.  

Gone

I woke up last night about 1:30 and her side of the bed was empty. I went back to sleep and woke up again about 4:30 and she was still gone. I got up and looked in the other bedroom saw that she was in bed there. She got up and went to the bathroom around 6 and came back to the master bedroom. I asked where she had been and she said, "I guess I didn't want to be here." I asked what she meant by that and she said she didn't know. I said, "No reason?" And she said, "Yeah, no reason." 

What a difference a week makes

When I woke her up yesterday and told her we had to leave in 30 minutes for our support group meeting, she groaned and rolled her eyes. She was quiet on the drive into town. But as her group filed in and greeted her, she responded with smiles and friendly words. On the way home, she kept saying, "I really like those people. They're so nice, and they seem so free and easy. And it's good to be with people who are going through the same things you're going through." We picked up Adam at school, went out to eat, and then ventured into the minefields of bookstore browsing--and did quite well. Whereas last Thursday, she didn't want me out of her sight, today I was gone all day and she had a productive day with the laundry.  

Wednesday can't some soon enough

Last night, she came into the kitchen with a woe-is-me look and asked what time we had to go to our group session the next day. I told her we didn't have it on Monday and her whole body perked up with relief. I told her we would be going every Wednesday. This morning, same thing: she asked what time we had to be downtown and I said we're not going downtown today--it's every Wednesday. An hour later she walked into my workspace and said, "so we don't have to go to my stuff today?" I said no, Wednesday. And then I said, "I really enjoyed my session. I'm looking forward to Wednesday. Did you not like your session? Why are you dreading this so?" She said no reason, just her natural negativity. 

About 30 minutes ago she seemed to have it down, but wanted to be sure--"We don't have to go to my doctor stuff today, right?" Right. Just now she asked again and I said, "I think you keep a calendar somewhere because you keep asking what day it is. On that calendar you should put a big circle around every Wednesday." As I was writing this post she handed me a sheet of paper with the group sessions and dates written on it. "I wonder if these are the dates?" she asked. I said yes--those are the 12 Wednesdays that the group will meet. 

It's only 11 o'clock on Monday morning.  

No reaction, this time

Tonight she asked me again, "Do I have Alzheimer's?" I very matter-of-factly said, "Yes." She had no reaction.  

Face-to-face with reality

On Wednesday we began a once-a-week-for-12-weeks series of support group meetings. In the car on the way home May asked, "What do we do now?" I told her we're doing it--what we do now is go to these meetings every Wednesday; we're already taking the two approved drugs, and now we're in a support group." This brought her face-to-face with reality, and she cried on and off the rest of the day. She has known, of course, since mid-November that she has Alzheimer's; but the knowledge comes and goes, and I think gets blocked a lot too. 

On Thursday she didn't want me out of her sight. I had a 4 o'clock meeting, which wasn't too bad. But I was concerned that I was supposed to be in Chicago all day Friday. I told her I could take her to the Friday meeting and she could sit in the back of the office and read; she eagerly said yes.

We took the commuter train into the city Friday morning, which she described as "an adventure." It's a 20-minute walk from the train station to my client's office, which she greatly enjoyed. In the office, everyone went out of their way to make her feel welcome. She spent the morning copying phone numbers and addresses from one book into another. She spent the afternoon reading. Whenever I checked on her she said what a great place it was to spend the day, and how glad she was to be out of the house. The trip home was another treat for her, just riding the train looking at the houses passing by. 

We were both tired when we got home and we lay down on the bed, with the TV on for the news. She stayed only a few minutes and then said she couldn't rest with the TV on and was going downstairs. I fell asleep and woke up an hour later with her sitting on the bed crying. "Do you just want me to go away?" she said. I asked her what she was talking about and she said, "I think you don't want me around your friends." I told her she had just spent the day with my friends and everyone had a great time. She said she didn't know what she meant. 

She asked what was next for us and I gave her the same answer I gave on Wednesday. Finally she said, "So, do I have Alzheimer's?" I said yes, and she cried pretty hard. She eventually calmed down and asked me if I believed in God, and would I look for her when my time came. I told her I was 62 years old -- I might get there before she does. She asked me if I would stay here when she was gone and I said yes. She asked me how long she had. I told her no one, so far, would hazard a guess, but I thought she had another thousand days here in this house--and it would be a shame to spend those thousand days worrying about what came after that. She agreed, but we both know that when she was a little girl, she would start crying when her grandparents came to visit because she knew they were going to leave again. She went to sleep saying, I just want to watch those little boys grow up...we just have the two, right?" I said yes, just the two grandchildren.

An odd thing...

As I was gathering up my stuff to leave my client's office yesterday, May said, "But you haven't got your hair cut yet." I told her I wasn't going to get my hair cut; we were going to catch the 4:30 train. On the train, she studied the side of my head and said, "Did you get your hair cut?" I said no and she said, "Well I wondered, it doesn't look very short." Then last night, before I went to bed for real, she was staring at me from across the bedroom. "Did you get your hair cut today?" she asked. I said no, I didn't. This morning, as I sat on the other end of the couch from her, she stopped reading the paper and said, "Did you get your hair cut yesterday?" I'm used to getting the same questions over and over, and I just answer them as if for the first time as long as I can stand it. But this haircut question was making me self-conscious. Was there something wrong with my hair? So this time I asked why she kept asking me that and she said she didn't know. That of course reminded her that her brain wasn't working right, and she had a weeping spell. She's asleep now.  

Who's Adam with?

Adam's other grandfather, Pat, and his wife Kate have helped with all of Adam's birthday parties. Last year they moved to our town so they could see more of Adam. Kate bought most of Adam's winter shirts and pants this year. They came to our house for last 4th of July. We were guests in their house last Sunday and had a very nice time. Today I took Adam to their place for a sleepover. When I got home, May started this conversation:

"Is this grammy a real grammy or just somebody he knows?"

"Somebody who knows?"

"Ted. Where you left Adam--is that just somebody Ted knows or is it a real grammy?"

"It's Kate. Pat's wife. Ted's dad's wife."

"Well Adam's with someone else and I just didn't know who it was, that's all. I want to know who he's with."

"He's with Grandpa Pat and Kate. We were at their house last Sunday. We sat at their kitchen table and told stories. We had a good time."

"Okay, well that's what I wanted to know. I just wanted to know who Adam was with." 

Warning signs

She didn't look very happy at bedtime last night. I asked her if she was okay. She said no, she was tired of me getting mad at her all the time. I apologized and said the grocery store pushed all my buttons and I'd try to do better. She said if I would only let her drive, she would gladly go back to doing the grocery shopping by herself. Then, while I thought we were still on the grocery issue, she switched to a mailer we received about an early-onset support group that is starting up, claiming that she had told me about it and I hadn't done anything to follow up. The facts are that I found out about the support group, talked to the people who are doing it, requested more information, told her about it and then when the letter came, she opened it and didn't tell me about it for several days. Then this morning I walked into a scuffle between her and Adam, as she was taking away the gel pens we bought for him at the grocery store last night. She claimed that he was taking her pens. I told her they were his. She reluctantly gave him three of the four pens and tried to keep one for herself. Then she turned on me and asked, "Well didn't we buy pens for me last night?" What am I to say? No, we didn't. She left the room in a huff, but was okay when she came back about 20 minutes later.   

Grocery tensions

I've been putting off going to the grocery store, but we finally had to break down and do it tonight. Before leaving the house, there was this exchange:

"I don't want to fight in the produce aisle," I said, "so here's the deal: we just threw away a dozen rotten apples, some petrified oranges and a shriveled-up lemon. I don't want to buy stuff that we're not going to eat."

"Well can you just talk to me without lecturing me?"

"I don't know how else to say it. Look, we're between seasons on fruit. We're way past apple season, we're moving out of citrus season, and the strawberries and blueberries aren't ready yet. On the vegetable front, there's all our potatoes over there. We have onions. I think we could just skip the produce aisle. Would that be all right with you?"

"Okay."

We go straight to the car, drive three minutes to the grocery store, walk in, and she makes a bee-line for the apples. She only puts three in a bag, which is good news, but then she heads for another type of apple and fills a second bag with those. I try to hurry us along to the deli section but she turns back and says, "we need produce." She buys about six different things that Adam and I won't eat and she won't cook even if we would eat them. They will mold in the crisper of the refrigerator until Annie cleans it out on her next visit. 

I know she can't help it. It's a heartbreaking reminder of what's going on in her brain. And the dollar amount is hardly a rounding error in what this disease is going to cost our family. But it kills me to spend money this way. 

There are three other issues built into our shared grocery experience: (1) I have moved uninvited into an area of family life that was always exclusively hers, (2) I tend to buy the same tried-and-true things over and over and she always reaches for the new and unfamiliar, and (3) my objective is to get to checkout as fast as humanly possible while she has no objective other than to savor the endless possibilities on all those shelves. 

On the way to the grocery store, the mood lightened briefly when I looked up into the suddenly cloudless sky and saw the crescent moon and the planet Venus, one day past its brightest state, dominating the western sky. I pointed it out and May was for a moment her old moon-self, and Adam supposed that we were the only people in the world who had ever seen Venus and then wanted to know why we couldn't see Mercury, which he reminded us was on the other side of Venus and closest to the sun. We were in the grocery store for so long that when we came out, Venus had fallen below the horizon and the moon was almost there. May said, "Look at the moon now." Adam stopped to look while I looked but didn't stop and ran over him with a full grocery cart. He tried to play the victim and I told him if he was going to walk in front of the cart it was his responsibility to keep from getting run over. And that's pretty much how it all went... 

Splinter issues

She got a splinter in her foot about ten days ago. It didn't look like a big deal, so I told her it would work itself out. It hadn't done that by yesterday, so she asked me if I thought she should soak it in hot water and I said yes. About 30 minutes later she presents me with a waterlogged sliver of wood about a quarter-inch long and shows me the hole in her foot it came out of. I was impressed. 

My next pass through the living room, I see her with her foot in a pan of water. I ask what she's doing. "Well," she says, "I have this splinter in my foot and I thought if I soaked it in hot water, I could get it out." 

"You already got it out," I said.

"I did?"

"Yes, I think you got all of it."

"But it still hurts, and it's red."

"Well there's still a lot of anger in there. Give it some time."

She wasn't sure whether to trust me, but she dried her foot and put away the pan.

UPDATE 

This evening she came upstairs looking quite happy.

"I think that thing in my foot worked itself out," she said. "It doesn't hurt and I can walk normal..."

"It didn't work itself out, you squeezed it out, yesterday..."

"I did?"

"You did."

She made a muscle pose with her right bicep, grinned and looked pleased with herself, and she had a pleasant night. 

The eyebrows are exactly the same

She comes into my workspace carrying a portrait of me when I was about two years old, claiming that Adam is the spittin' image of me. I don't see it. She tries to convince me. We debate it for a few minutes. Finally she traces her finger over my eyebrows and then does the same to the photo. 

"See," she says, "the eyebrows are exactly the same." 

"You know why?" I ask.  

"Why?" 

"Because those ARE my eyebrows. This is me, and that's me. You're comparing me to me." 

"Oh ... yeah."

And then you snap

As we pulled into the parking lot at the mall, she said "I wish I could drive..." and I knew it was going to be a bad day. We were there to eat lunch at The Corner Bakery--straight across from Barnes and Noble. As we ate, she said, "Are you looking for something in particular?" I knew she meant at Barnes and Noble. I explained that I was only there to eat lunch. 

Twenty minutes later, on our way out of the restaurant, she said, "Are you looking for something in particular?" No, I wasn't even planning to go in the book store. We can, but just to look around. 

I went back to check on Tom and Jerry DVDs for Adam while she browsed the buy-two-get-one-free paperback table. When I returned, she had two from the 2+1 table and a new release hardback, which she expected to get as her free selection. I explained it three times: this hardback is not going to be free. She decided to put the two back and just pay for the hardback, by a writer she never heard of--she just liked the looks of the dust jacket. 

On the escalator to the main floor she displayed her exasperation and said, "Could I just have a certain sum of money that I can spend any way I please?" To which I said, you have a credit card for which last month's bill was $2,200. 

At checkout she decided I had ruined the whole experience and it wasn't worth buying anything. Her complaint was a familiar one: "Would it bother you to just let me buy a book? I sit in that house all day. You come and go as you please. But all I can do is read a book." But the house is full of unread books that were bought on that very premise. I tell myself, she likes to shop, let her shop. But today I snapped and said, "Yes, it does bother me to buy books that never get read, buy food and watch it rot, buy clothes that never get worn. It's not about reading, it's about the retail transaction. It's five minutes of pleasure for $100, and then do it all over again the next day. I've done all of that I can afford for a while. We need to take a break from the retail experience." 

You go along with it 20 times and on the 21st time you snap--and you're a mean insensitive person for it. And then you start over at 1.  

Let it be...

"How much do you know about what's going on with your brain?" I asked her. "Not much," she said. "I know I have trouble remembering things." I told her she had Alzheimer's disease, which we've talked about several times. There was a far-away look in her eyes, like she was being reminded of something very troubling. I brought it up because I had started to read a book about Alzheimer's and I needed to know if she wanted me to tell her what I found out. She said she wasn't sure, but just talking about it was upsetting enough for me not to bring it up again. 

Another bad retail day

When I told her that I was going to a meeting today, she asked if there were any shopping malls near where I was going. There is a big one -- too big to turn her loose in and then hope to find her again, so I suggested that I drop her off at Borders Books & Music where she could read in their coffee shop until I came back to get her. On the way there, I brought up a topic I had been avoiding--that we couldn't be putting a hundred dollars on her credit card every time she wanted to get out of the house. I gave her $40 in cash and told her not to use her credit card. 

I was gone three-and-a-half hours. I hurried back to the Borders store hoping (1) that she would be there, and (2) she would be okay. What a relief to find her with a smile on her face. She said she'd had a great time. Then she showed me her purchases: a little stack of magazines and art supplies. I asked if she had paid for them and she said yes. "Where's the bag," I asked. She looked around and couldn't produce one. "How about a receipt?" She dug in her purse and came up with one for $2.75 for a cup of tea. "How much cash do you have?" She looked in her wallet and found $17. That would be the change from the cup of tea. I looked for the other $20 bill and found another $17 -- probably change from an earlier cup of tea. 

She could have paid with her credit card though. I said we needed to see if they remembered her at the cash register. When we got there, there was a large stack of books and other art supplies on the counter. "That's mine," she shouted, and grabbed it. I said, "no, this is yours," and held up the stack I had found her with. That confused her, and I had to admit that the stack on the counter was the kind of stuff she always bought in a book store. Apparently, she had made it as far as the purchase counter before I got there, and maybe abandoned stuff to get down to her $40 limit, which was now $34. 

If that were the case, was I about to pay for it twice? Trying to sort it all out was hugely upsetting to her, undoing all the good feeling from the afternoon she had spent there. The ride home was miserable. She hates being cooped up in the house, but I don't think I can take her anywhere now unless I stay with her the whole time. 

Refreshment adventures

At Borders today, May said she was thirsty and didn't have any money. I gave her a $10 bill and went on browsing. When she didn't come back after about five minutes I walked over to the coffee bar--just in time to see her ordering a drink and paying with a credit card. I asked her what she was doing and she said, "I was thirsty and didn't have any money." I said, "That's a pretty nice scam you have, asking me for cash and then paying with the credit card." She didn't remember the $10 and couldn't produce it either. 

After that, we went to a movie and she bought hot tea at the concession stand. We went in and took a seat and then she said she was going to visit the restroom before the movie started. When she came back, she was carrying an iced drink. "I stopped for a drink," she said. I pointed to the hot tea in the cup holder and she didn't know what it was. I asked her what was in the new cup and she didn't know. I was drinking Coke from a branded cardboard cup that was the smallest size they had at the concession stand. Her cup was much smaller and made of clear plastic, like something someone would bring into the theater from the restaurant next door. I asked her if she paid for it and she couldn't remember.   

Doubling up

I was away on business Tuesday night and Wednesday night. I put May's pill box on the dining room table and told her I would call her when it was time to take a dose. I left on Tuesday afternoon and called her when I got to California. The pill box was right where I left it and she took her two pills. 

I called her again on Wednesday morning and the pill box was not where it was supposed to be. I hung up while she searched for it. When I called back in about ten minutes she had the pill box in-hand. I told her to find Wednesday morning and take out those pills. She said that compartment was empty. I told her to check Wednesday afternoon--that compartment was empty too. They were loaded when I left. I told her not to take anything that day. 

On Thursday, I called her from the airport and told her to find the pill box--she didn't know where it was. I told her not to do anything until I got back. I arrived home about 2:30, found the pill box and gave her the morning dose. About 8 o'clock that night she said, "Shouldn't I be taking more medicine?" I told her to get the Thursday evening dose from the box upstairs. She came back downstairs with the right pills in hand. 

Before I went to bed I moved the pill box to its normal place in my office and noticed that both Friday compartments were empty. Somehow, between 2:30 in the afternoon and 10 o'clock that night, two days worth of medicine had been removed from the box. I know she swallowed two of them, and she either swallowed the other two or put them down somewhere and never got back to them. And that was the second time in three days it had happened. She has no recollection of how it might have happened. 

Night attack

Last night I had a dream that I was driving a car with Adam wedged behind me, pinching my back relentlessly in one place. I thought he would tire of it, but he didn't. I told him to stop, but he kept on. I swiped at him with my hand, but he persisted. It was a steady pinch-pinch-pinch in the same spot. Finally I woke up, but the pinch-pinch-pinch continued. I made a swipe and my hand hit another hand. That's when I realized that the pain was real, but it was May, not Adam. She woke up and asked what was wrong. I said you're pinching me. I reached back and found the spot. I asked her to look where my finger was and tell me what she saw. She said, "Oh yeah, it's all red." I thought, well at least there's still skin there. Before I went back to sleep, I realized it was pretty dark. I held my hand up and all I saw was a silhouette. How did she see a red place on my back? I can still feel it this morning. 

Shopping trip

Yesterday I took her shopping at Target. This is something she misses--the ability to just roam through Target with no particular purpose and no time restrictions. I let her go on her own and told her I would be in electronics. We ran into each other some time later and I told her I wanted to go down to Best Buy, and could she spend another 20 minutes browsing? She said she could. I told her two things: (1) do not leave the store, and (2) if she wanted me to find her, go to the service desk and wait there. Yes, a cell phone would have helped, but hers had a dead battery. 

I went to Best Buy and came back 20 minutes later. I then spent the next 40 minutes making big circles through Target, pausing at the service desk on each pass. Finally I heard her calling my name. She had just come back into the store pushing a basket of paid-for items. She said she had checked out and gone looking for me in Office Max. 

You know better than to leave her alone. But for some reason, you still think you can say do not leave the store and if you want me to find you, wait over there. When are you going to learn? 

Questions on top of questions

We have the two worst repetitive question situations running simultaneously: "Do you need shirts for your trip?" and "When are we going to the grocery store?" The answers are "I do need shirts but not until Tuesday" and "Not today but before I leave town." Today I've identified "which shirts" three times, and just now she came up and asked how I wanted my shirts...

How do I want my shirts ironed? The usual way, I guess. She explained she didn't know if I was going to hang them or fold them. I told her I would eventually fold them--two days from now, so if she's ironing tonight, put them on hangers. 

***

Update, several hours later: 

She just came up making folding signs with her hands. 

"Do you want me to fold your shirts?" 

"Hangers."

"Well that's what I wanted to know." 

Food confusion

Tonight she asked me about every 15 minutes if we were going to the grocery store. Each time I calmly replied that tomorrow is Super Bowl Sunday--the grocery store will be a mob scene and the salty snack aisle would be stripped bare. So we would go grocery shopping soon, but not today. There came a point where I reached my limit and said, "I cannot answer this question again. No, we are not going to the grocery store tonight!" 

She went back downstairs and came back about 10 minutes later and said, "We have that frozen casserole that Annie made..." I looked at her and searched for what to say. Before I could say anything, she spread her arms wide and said, "I don't know what you're asking me to do..." I walked over to her and said, "There's much confusion here. I'm not asking you to do anything. We ate lunch at 4 o'clock. I'm not even thinking about food." 

She said she would just try to find something for herself. I followed her downstairs and pulled a pizza out of the freezer and asked her if she could eat that. She said yes, so I helped her put it in the oven and set the temperature. I came back a few minutes later to make sure the pizza wasn't burning. She asked, "Do you want rice with that?" 

Again I didn't know how to answer. I wondered if she had put something else in the oven. "Do I want rice with my pizza?" is all I could think of to say. She just turned away from me and put the rice back on the shelf.  

No, no, NO!

She asked me three times in the space of five minutes if I wanted toast with my dinner. The third time I said no, it might have been with a little edge to it. She asked if she had asked me that seven times and I said, only three. She shook her head and muttered "I hate getting old." She's said that several times lately -- she hates "getting old," as opposed to "having this disease." 

These four walls

I was traveling on business and Annie was here to stay with May. When I got back I asked Annie if anything weird happened. She said no, but something very sad happened...

Annie was going shopping and asked May if she wanted to go. May said no. Annie wrote down where she would be, what her mobile number was, when she would be back. She returned to find May crying. May told her, "I sit in this house all day staring at these four walls and I would think that if you were going out, you'd take me with you." 

How did we get here?

Driving back from a neuropsych appointment today, she asked me, "How did we end up living in Chicago?" I told her the long version, which started in 1992 and culminated in our official transfer of residence in 2000. It took up the entire 30-minute drive, and it was as if she were listening for the first time to the history of someone whose story was important to her. 

Deja kindergarten

This was information night for those who will be sending kids to kindergarten next August. That's something we haven't done since 1986. But tonight we went to the meeting, for Adam. May took one look at the flyer on the kindergarten curriculum and said, "Isn't that the same as the one we just got the other night?" I didn't know how to answer, and in my hesitation she said, "Didn't we just do this?" 

Bugs in the night

Adam was sleeping with May in our bed; I was in the little bed in the extra room. I awoke with her standing over me. "Adam and I are covered with thousands of little bugs--more on him than on me," she said. I got up and followed her to the bed. We're just a few days past a full moon and the snow cover sent a fair amount of light into the room. She pointed to the bed and the walls and said, "See? What are those?" I didn't see anything. I turned on the bedside lamp. Everything looked normal. "I don't know what to say..." she said. This morning she came in and asked if I slept well. I said I did, except for the bug hunt. She looked confused and I told her that she had seen bugs last night on her and Adam, the bed and the walls. "Oh yes," she said, "what were those?"

Trip routine

"What time do you leave?" she asked over breakfast. Now it starts...

I'm leaving on a business trip five days from now. Between now and then, I will be asked, several times a day, "What time do you leave?", "How long will you be gone?" and "Do you need anything ironed?" She will be relieved every time I tell her it's not time for me to go yet. 

Listless day

She hasn't felt well, physically, for the past several days. Today she didn't want to go with me to take Adam to school, didn't want to go out for lunch, didn't want to go with me to pick up Adam. She lay on the couch and slept off and on. Late in the day she came up to my workspace, weepy, and said, "I hate getting old." I asked her what brought this on and she said, "I used to be able to go anywhere I wanted." She lay down on the upstairs bed while I went to get Adam. She had a bowl of Raisin Bran for dinner and went to bed early.

Grocery shopping

For an hour before we went grocery shopping today, she worked on making a shopping list. I've never seen one of her lists actually show up in the grocery aisle. But she was working extra-hard at it this time. When we got to the store she started asking me if we were out of stuff. I asked her about the list and she looked at me like she didn't know what I was talking about. The produce section is extremely stressful because we have every kind of fruit and vegetable rotting at home, and she always wants to buy more. Last time I didn't say anything, which means we now have stuff in two stages of decomposing. This time I put my foot down, which is upsetting to both of us. Adam was with us and even he said he didn't like me talking to Grammy like that.

When we got home she asked if we had bought eggs. I said no. She said that was bad news, because we only had two eggs left. I told her those were eggs Annie bought when she was here in October. She was horrified at that, but I said Annie would be here tomorrow night, and she would throw out everything she recognized from two months ago and then go to the grocery store and start over.  

When?

Yesterday I was leaving for a day of business meetings. Here's how the conversations went:

6:50 a.m.

"When will you be back?"

"I'll be at Abbott Park all morning, then in Lake Forest with August Jackson in the afternoon. I should be home before 5."

6:55 a.m.

"Do you know when you'll be back?"

"Before 5."

6:57 a.m.

"You don't know when you'll be back do you?"

"Yes, before 5."

I got home at 4:30 and was met at the back door.

"There you are. I was just thinking, Bill should have been home by now."

Just two little reminders

She had a good day. Only two little reminders of her condition:

We went to lunch in a shopping area that she used to drive to. It must have dislodged a memory, because she said, "I wish I could still drive..." After lunch, she walked off without her purse before a woman at the next table called to her. It was the second time this week we almost left an establishment without a purse. 

Cleaning day

There was a cleaning frenzy here today. There is evidence in my work space, in the living room and in the kitchen. It's nice. It happened while Adam was at school and I was in business meetings. The downside is that Adam and I have both spent a fair amount of time looking for things that are not where we last saw them. He's found his (or rather, I found his for him), but mine may be gone forever. 

A peaceful smile

She's still using the digital reader. But how to turn it on and off remains a mystery. Last night she was reading in bed across from where I was working. She didn't see me staring at her; she was engrossed in the story. There was a peaceful smile on her face. I watched for a long time, until she finally looked up. "You're smiling," I said. "She's such a good writer," she said. It was no longer about the technology of the reading machine, or the confusion in the reader's mind. Annie Dillard's storytelling had taken over. 

These white walls

Since we moved into this house three years ago, she has been adamant about painting the walls. The largest room in the house still has a coat of primer and blue tape on the walls, from a project she started in the first year but never finished. Several walls have patches of dark paint where she tried out a color and decided it wasn't right. Many walls have had paper paint swatches taped to them or stuck in the molding, but most have finally fallen off. 

She spent all of yesterday on the couch, mostly sleeping. Late in the afternoon she sat up and said, "These white walls are driving me crazy. They have to get painted, but I don't think I can do it anymore. Is it alright if I hire somebody?" 

That's new. Up until now, she's always talked as if she could just attack a room and finish it off. The problem is, she's still one step removed from reality, because she also can't find someone to hire, explain to them what she wants, remember what she agreed to or when the painter might be coming. I would have to do all of that, and on my to-do list, hiring a painter would never see the light of day. 

Joyful echos

If you have no short-term memory, good things are like echos.

Whenever May sees my digital reader of late, she asks about it. So yesterday I gave it to her and showed her how to read a book I thought she would like. For the rest of the morning, every time I passed through the living room she looked up from the reader and said, "I love this thing. This changes everything. It's so easy. It may be bad for the rest of you, because I may just read all the time and forget about fixing dinner." 

While we were doing chores in the afternoon, it kept popping into her head how much she loves the reader, and how happy it makes her, and she told me about it over and over as if for the first time. Again at bed time, as she held it in her hands under the bedside lamp, she told me how easy it was to read. I finally had to ask, was reading actual books all those years really such a hard thing? All that lifting and page turning?

It's entirely possible that today she'll forget she has it, which only means she'll get to live the discovery all over again.   

Lunch pressures

For lunch yesterday, we went to one of our usual sandwich shops where you order at one end of the counter and pay at the other end. As we approach the order station, I always remind her of what she has ordered before to protect her from the vastness of the menu and the pressure of the speed-crazed order-taker. But still, the order-taker has questions. "What kind of soup?" "Do you want bread with your soup?" "Would you like a drink with that?" Each demand for a quick decision produces a mild panic and she looks to me for help. She made her own soup choice; I made the bread decision; on the drink issue I pointed her toward the cooler, and she ran off to grab a physical container, which is a whole lot easier than trying to hold a list of options in your head until you can pick one. 

Debbie's coming

Yesterday, you wouldn't have known anything was wrong -- unless this seemed a little odd to you:

She came upstairs to tell me Debbie was coming to see her. I asked her when she was coming, because I'm the one who has to keep track of these things. Here's how it went from there:

I don't know, soon.

Soon like this weekend?

I don't know. I'm sure she probably told me.

Well if it's soon, we need to know the actual day.

She'll call me again and tell me. 

The last time Debbie came, she called while Annie was here. Luckily, Annie answered the phone, got all the details, and passed them on to me. For days before the visit, May would ask, "Now when is Debbie coming?" or even "It seems like someone is coming to see me but I don't know who or when..." And I would be able to tell her. It made her happy each time I did. Debbie arrived on a Saturday and took May on a blow-out shopping trip. When it was over, and Debbie was gone, May said, "That was such a wonderful surprise! The doorbell rang, I went to the door, and there was Debbie! I had no idea she was coming."

Oh wait! There was one more thing. I was flipping through the channels and came across the Pretenders at the Montreux Jazz Festival. We stayed there long enough to see Chrissie Hynde stop her band in the middle of Don't Get Me Wrong and switch to a jazz rendition of that old chestnut. May said, "Didn't we just see that the other day?" Let's see now, Chrissie Hynde doing a jazzy Don't Get Me Wrong at Montreux -- no, I don't think I've ever seen that. 

This "false familiarity" happens a lot. Walk into a restaurant in a town you've never been to before, and she will swear you were just there a few days ago. 

The holidays

In early December she would ask several times a day if anyone was coming for Christmas, or if we were going anywhere. I would answer, "No one is coming. We're not going anywhere. It will just be you and me and we'll go to lots of movies." She thought that sounded great.

On December 18th, she asked me what day it was. I told her it was the 18th.  "Oh," she said, "almost my birthday." I said no, it's almost Christmas; your birthday is in January. She took me to the kitchen where she had hung a 2009 calendar. 

Trusting in this calendar, she had jumped past Christmas and was now in January. We did this several days in a row before I could get her back into December. Then she remembered that we were supposed to be going to movies. We saw two in two days, skipped a few days, and then headed out to see our third movie. 

On the way she said, "When was the last time we went to a movie...", more like a statement of our spotty movie attendance than a real question. I told we were on our way to our third movie of the holiday season. She asked what we had seen. I told her we only went to one-word titles; we had seen Milk and Doubt. Now we were stepping one article outside our comfort zone by going to see The Wrestler. She thought that was funny, but she clearly didn't remember what I was talking about. 

58

On November 14, 2008, the neurologist told us he had found nothing in all her test results to indicate a cause for her problems with memory, thinking and managing everyday tasks. Which left Alzheimer's as the most likely culprit. May is 58 years old.