The words of May-ness

Well, we told stories for about an hour-and-a-half at the memorial service. There were some old chestnuts, and lots of brand new material. Inspired by each story, listeners wrote down words that they thought described May in all her May-ness. While the rest of us ate lunch, a trained Evocation Team (a team skilled at selecting the smallest number of words sufficient to evoke a unique condition -- in this case, the condition of May-ness) compiled all the words into a master list and then identified those that appeared most frequently. The boiled-down list was comprised of:

Adventurous
Connected
Curious
Determined
Free spirit
Gentle
Loving
Open

Using these words, the team crafted this Evocative Statement:

Led by curiosity. Guided by her adventurous free spirit. We are left connected to the loving, gentle and open way of May. 

The words and the Evocative Statement were read at the graveside ceremony, under a gentle rain on May 31st -- the last day of May.

In all her May-ness

I like that word tranche, which the world of structured finance has given us. At the service tomorrow, there will be different tranches of people who knew her. People from her corporate years, when she hired a "dress for success" consultant but then forced him to put more feminine touches on the business suits he made for her. People from her golden years on Brushy Creek in the Schluersburg Valley, who experienced her indefatigability. Her neighbors here on Hartzell Street, who knew the possibility she could see in the most forlorn object in a garage sale. The caregivers at Arden Courts, who knew her for what she gave back.

With the help of every tranche, we will be remembering May in very specific ways tomorrow, and we will be working to find words that describe her in all her May-ness. I hadn't thought of indefatigability before, or possibility either -- but those are good ones; she had both in abundance.

We want to know what words you have. Think about it on your way to the service. If you can't make it, submit a few here by clicking on the comments line below.  

The end game

When I want to remind myself how to write, I pull out my copy of Ernie Pyle's dispatches from World War II. I turn to The Death of Captain Waskow written at the Italian front on January 10, 1944. Casualties were being brought down a mountain trail on the backs of mules under a full moon. Pyle was with a group of GIs waiting in a cowshed when four more bodies came down. "This one is Captain Waskow," they were told by the soldiers leading the mules. Pyle records what happened next:

One soldier came and looked down, and he said out loud, "God damn it." That's all he said, and then he walked away. Another one came. He said, "God damn it to hell anyway." He looked down for a few last minutes, and then he turned and left. Another man came. I think he was an officer. It was hard to tell officers from men in the half light, for all were bearded and grimy dirty. The man looked down into the dead captain's face, and then he spoke directly to him, as though he were alive. He said: "I'm sorry, old man." Then a soldier came and stood beside the officer, and bent over, and he too spoke to his dead captain, not in a whisper but awfully tenderly, and he said: "I sure am sorry, sir." Then the first man squatted down, and he reached down and took the dead hand, and he sat there for a full five minutes, holding the dead hand in his own and looking intently into the dead face, and he never uttered a sound all the time he sat there. And finally he put the hand down, and then reached up and gently straightened the points of the captain's shirt collar, and then he sort of rearranged the tattered edges of his uniform around the wound. And then he got up and walked away down the road in the moonlight, all alone. 

I thought of that several times at Arden Courts yesterday: When I first got there, and Nicole told me "She's had a lot of visitors this morning; all the staff have been by." When Sally from across the hall saw me and said, "Oh Bill, this has been so hard on all of us." When I caught glimpses of Mel and Wilbur, visiting spouses like me, and remembered how hard they worked to get May to smile when I wasn't there. And when I thought about that first day I came to meet with Betsy, to set up hospice care, and stopped to chat with Courtney in the lobby -- and she said, "I can't look at you," so we stood back-to-back and talked until Betsy arrived. This is a place where everyone knows what the end game is. But May was so young. And when she smiled, you could forget why she was there.

It's over

I was with her all day and left when hospice arrived for an 8 to midnight shift. She stopped breathing and showed no pulse at 8:40. Funeral arrangements pending at Donnellan Family Funeral Services at 10045 Skokie Boulevard in Skokie, IL.

The lovely one

They called me at 10 this morning and said I should come. When I got here, nurses and staff were gathered around her.She gurgled when she breathed, and I thought I had gotten here in the nick of time. But she tends to rally, and she's done it again. It's now 5 in the afternoon and the lobby has been closed for an hour. Just now, the woman who runs the kitchen came in to tell me she was leaving, and asked if I needed anything to eat or drink. I said water would be nice. She offered cookies too and I accepted. "I will bring them to you," she said, "but first," and with this she moved toward May's bed, "I put my hands on the lovely one." She placed both hands across the top of May's head for an instant, and then hurried off. Everyone today has been aware that this goodbye, especially with the holiday schedule, is probably forever.

Resting comfortably

The past three days have been the same, except for the fever on Wednesday. She's lying on her back with oxygen tubes in her nostrils. Eyes closed, breathing easily. Not eating now. They come in and turn her, and freshen her up. They look at me and say, "I'm sorry."

Walking and talking

A message comes in from Tami, who used to work at Arden Courts, where May has lived since October, 2010. She says:

I remember very fondly my time at the community and when I needed a break from the day and all the stress of work and being a mom, I could go find May. We would hold hands and walk around the center of the building. Walking and talking. This to me was a godsend because she was giving to me what I needed at the time. Peace and tranquility. I want you to know that May gave back to me every day that I saw her.

Yes.

A story

I've held off on telling this story, but I don't think I can keep standing in its way...

May did things in sevens. Seven years of her corporate career. Seven years of the two of us doing everything together. Seven years striking out on her own into the world of Peruvian shamanism and Native American ceremonial life. Seven years as an apprentice in the art of Black Hat Feng Shui. And now, seven years of Alzheimer's.

During the shamanism/Native American years, we made several trips to Santa Fe, Albuquerque and Taos to buy original art. When we moved to Evanston, she began the task of re-hanging all the art but only got a few things up before succumbing to the early stages of her condition. So in several rooms, still, there are framed objects leaning against walls where they were to have been hung.

In the small room off our bedroom, behind a portable clothes rack, on the floor leaning against a short wall, there was a large papier-mâché casting of an Indian medicine woman holding a tobacco pouch. The casting is inside a thick plastic box mounted on a heavy wooden base. In front of it, leaning against the medicine women, was a watercolor of an Indian offering his ceremonial pipe to a night sky.

When I got home Monday evening, I noticed that the door to the small room was closed and I went to open it, but there was some kind of obstruction. I peaked around the corner and saw winter coats on the floor. I pushed harder, and found the clothes rack on its side and partly dismantled. I looked behind the clothes rack and found the Indian with the pipe and the medicine woman no longer leaning against the wall. The medicine woman had set forth the chain reaction. Somehow she had pitched herself forward.

All this had happened while I was with May -- when she was seeing something over my right shoulder and trying desperately to tell me about it.

We bought this house in 2005 -- the medicine woman was in her seventh year leaning against that wall. This is the seventh home she has shared with us.

Yesterday and today

When I walked into her room yesterday, her eyes flashed with recognition. Her lips struggled unsuccessfully to make words. She lifted her head from the pillow and pointed to something over my right shoulder. Her body trembled. Her hands shook. There was something she urgently needed to tell me. She got a squirt of morphine every hour, with no effect, until finally they doubled the dose. I don't know what she wanted to say, but I do not doubt its significance. Today when I arrived I was told that she was "resting comfortably." That has been my observation as well. Her eyes are closed. She's breathing softly. She doesn't know I'm here. We talk about yesterday as "a hard one." But when all is said and done, that is the day I will remember. Possibly the last all-out attempt to be heard.

Timelines

It will be four weeks tomorrow since I got the call that it was time for her to go on hospice care. It was last Tuesday that I got a call that she was "declining fast." I pushed for a timeline and got one: three weeks; one if she stops eating. Then on Thursday, another call: you should come now. I asked how much time we had. 48 hours, max. She rallied at about the 40th hour and showed renewed interest in eating. Today has been another good day. She is resting comfortably now. I am by her side.

Uprightness

They think her extreme forward lean may be a side-effect from one of her medications. They have made a dosage adjustment, and when I saw her yesterday, I thought she was a little more upright. Here's what she takes:

Abilify

Acetaminophen

Benztropine

Donepezil

Lexapro

Lorazepam

Trazodone

A happy event

She doesn't talk much anymore. But she's glad to see people she knows, and she shows it by walking up close to them, leaning forward, and just smiling at them. She smiles with her whole face -- forehead, eyes and mouth. And she can stand there for a long time.

All the other families know her by name. As they pass by on their way to see their own loved one, they say "Hi May." She's a little slow on the uptake, but she stops and smiles back in their direction as they walk on.

Tuesday night I was a speaker at a dinner event for people who were beginning to consider their next step for a loved one with Alzheimer's. One of the other speakers lit up when he heard I was May's husband. "May looks after Lillian," he said. "She calls Lill her baby. They're really good together." The marketing director said May had helped her fold the napkins for our dinner. I wondered if I would get to see her, because the residents were in their dining room when I arrived.

Most of them start getting ready for bed as soon as they eat, but May was attracted by the hubbub in the Activity Room and came to check it out. The first person she saw was Mel, Lillian's husband. She walked in and stood in front of him and grinned broadly. People were trying to direct her toward where I was sitting. When she finally looked my way, she smiled anew and started shuffling toward me. She sat down next to me and someone brought her a dessert. She stayed for the whole meeting. I spoke first and then went back and sat next to her. She slept through the third speaker, while I rubbed her back with one hand and held her up with the other. She was happy to be there, smiling in her sleep.

'you can't really figure out why...'

A friend sends me a clipping about a study in which Alzheimer's patients were shown sad movies and happy movies. Long after the patients had forgotten what movie they had seen, they still felt happy or sad, depending on the group they were in. And they felt their happiness or sadness more intensely than a control group of individuals with normal memories. "Because you don't have a memory," says the lead author of the study report, "there's this general free-floating state of distress and you can't really figure out why."

I think that's what was going on back in July when May was so agitated: she thought she was supposed to do something, and she didn't know what it was, and she fretted about it with no let-up day after day -- the anxiety living on for days after the cause had been forgotten.

She's been easier in her skin lately. The smile is back. She moves more slowly, and finds it harder to carry on a conversation, and I often find her asleep sitting straight up in her chair, but the edge has been rounded off.

In seven weeks, she will have been living at the residential facility for a year.

Two hairs past a freckle

I was sitting with May in the activities room, watching an episode of I Love Lucy. After a while, she reached haltingly toward my thigh. I looked at her and she said, "I just need to see what time it is." I scooted my chair closer to her. She reached down for the hem of my pants, lifted it up, and stared briefly at my ankle. Then she nodded, put my pant leg back in place, and went back to watching Lucy and Ethel.

Notes-to-self

There was a phase of May's disease during which she bought a hundred or more notebooks with the expectation that they might serve as a surrogate memory. Most of them were never used. But as I was cleaning out a file cabinet this week, I came across a series of reminders spread across three different notebooks. They all involved socks for our daughter Keely, both sending and receiving. 

The first four entries below were from consecutive pages in a large memo pad, and last two were stand-alone entries in a logbook and a small note pad. I look fondly on the brackets, arrows, bullet points, boxes and cloud patterns -- a penchant for organization that is gone forever, now.  

Fearful

Walking our usual route today, she was afraid of a fake house plant in the northeast turn of the corridor. "That scares me," she said, shying away. Walking in the garden outside, she stopped short and said, "They don't want us here." Passing by a room where other residents were playing BINGO, she turned her head and said, "Don't make me go in there." She's starting to pick out patterns in the carpeting that need to be carefully walked around. Not many smiles today. I talked to the site manager about it. She said everyone was aware. "It's the disease," she said. "She has entered a new phase."

A turning point, most likely

I think this is a turning point. In recent visits, she has not been as fearful as she was for those ten days, nor as smiley as she was that one day. But she's been different. It's made me look back on the other turning points.

July, 2005. I came home to find her curled up in the bed, saying she had lost control of the checkbook and didn't know how to get it back. We were overdrawn by $10,000. I knew something was seriously wrong.

February, 2007. She drove herself to her weekly psychiatrist's appointment, which was five minutes away -- two stop lights, one turn. She missed the turn and kept driving south for 30 minutes before calling me. I guided her back home by having her call out street signs as she passed them. I knew she could no longer drive herself even to places that were routine to her.

April, 2009. I woke up in the night to find her standing in the dark looking down at me. I did not know that this would be the first of many nights that she would stand in the dark of the bedroom or her closet, sometimes from shortly after midnight until my alarm went off at 6 a.m.

May, 2010. She started leaving the house during the day while I was working upstairs. She would walk to the bank and demand to see her money, or to the 7-Eleven to report that she was being followed and had left a two-year-old at home alone. I knew we needed full-time help in the house.

October, 2010. She looked at me and said, "I don't think I can take care of myself anymore." This, I already knew.

So she's been in the residential facility for nine months now. She's gotten the best out of all these great professionals have to offer. Looking at the timeline, it should be no surprise that it's time for a new chapter. What would I call this one? Maybe, a time of profound sadness. On Friday I found her sitting at the lunch table, slumped forward, staring blankly straight ahead, waiting on a meal that would not be coming for another 30 minutes. Tears were rolling down her cheeks.

A good day

She was her old self yesterday. The smile was back. As we walked, I said, "It's good to see your smile. You've been grouchy for the past ten days." Staring straight ahead and slightly down, she asked, "Why was I like that?" I said I didn't know, but I had been afraid it was going to be like that from now on. We had a nice walk and then I took her back to her place at the table, where lunch was being served. Nicole was behind her at the kitchen counter, and I walked back there and said, "She's much better today." Nicole responded with a facial expression that seemed to say, "Don't jinx us!" I asked how long she had been this way and Nicole said, "Since today. She took an early nap, that might be the reason." I flashed back to the early days of Microsoft Word, when you got a "tip of the day" every time you fired up the program. These tips were very practical -- except for one that would make an appearance every few months. It said, "That which goes away by itself can come back by itself." Apropos, here, I think.

An old memory is good therapy

When it starts to break down, it breaks down across the board: mental, physical, emotional. Yesterday she was walking out of her wing of the building just as I was turning toward it. I was a welcome sight to distressed eyes. "I'm so glad to see you," she said. After a hug, she whispered, "I don't like it here. They're not teaching me anything." We started walking our usual route and I noticed that her left arm was clutched toward her midsection. I asked if she had a stomachache and she said, no, it was her arm. I took the arm in both of my hands and massaged it as we walked. She said that helped.

There was a lot of random fear: "If I have to go home, I'm going to be scared," she said, out of the blue. Later, as we passed the dining room, she said, "If I have to go in there, I'm going to be scared."

Eventually, we stopped in the activities room where Carmen was visiting with two older, but more coherent, residents. One of them asked if I was ever going to bring Adam back, because he showed her how to play darts. At the mention of Adam's name, May managed a small smile. The other resident turned the topic toward the lunch menu, and whether she would be able to eat everything they served her. There was speculation about whether May was a good eater or not. I said, "I'm sure she eats everything. That's how she was raised, back on the ranch. She couldn't leave the table until she had cleaned her plate." May smiled at the memory, so I decided to stick with a winner.

"When she was a teenager," I said, "her job in the summer was to have the noon meal ready for all the field hands when they came in. The noon meal was the big meal. It wasn't called 'lunch,' it was called 'dinner.' The men might be baling hay or harvesting wheat, and they would be hungry in the heat of the day. The summer that May was reading Gone With the Wind, she would lose track of time. She would look up and see the trucks coming toward the house, and she had not begun to prepare a meal. She was in trouble with her dad most of that summer, until she finished the book, and there were a lot of pages in that one." Everyone was laughing and saying, "Is that right, May?" She was nodding her head and smiling grandly. At that moment, she was not afraid.