Although I was aware of Dr. Parker’s bias toward AD/HD, I was willing to cling to any possible diagnosis that offered a specific treatment. Dr. Parker’s suggestions for treatment included a review of meds and a recommendation that Mike stop taking Topamax, which he said sometimes had memory loss side effects. He recommended that Mike take Ritalin to address possible AD/HD. He suggested starting Aricept, often used with Alzheimer’s but also with other age-related cognitive impairment. He also recommended omega 3 fatty acids for brain health.
Dr. Parker strongly encouraged changes in lifestyle—sleep, diet, exercise, motivation. He recommended that Mike get connected with a physical trainer and work toward three to four times a week of fairly vigorous exercise. He ended his recommendation with a sort of pep squad cheer: “Fight for brain health!”
As soon as the office door closed behind us, Mike said, “I’m not adding any more drugs to my body!”
“Well, you’d be taking one away, Topamax, and adding a stimulant.”
“I don’t have ADD! All he wanted to do was play cards!”
I encouraged Mike to follow up on Dr. Parker’s suggestions for lifestyle changes. By this time, though, any encouragement from me only elicited resistance. Matt and Sharon both talked with Mike about getting more exercise and eating more sensibly. He always agreed that more exercise or a better diet would be a good idea, but that was as far as it went.
In October, after consulting with Dr. Bertoli and also with Dr. Carlson, Mike agreed to take Dr. Parker’s advice, gradually drop Topamax, and, also gradually, add Ritalin to his daily drug intake. His mood and energy level were slightly improved with Ritalin, but not his difficulties in keeping track of things.
Clinging to the good news that whatever was up with Mike didn’t follow an Alzheimer’s pattern, I was also reassured by the results of his MRI. “Mild chronic sinus changes…. No evidence for acute sinusitis. Mild age-related changes of the brain. Otherwise, normal brain MRI.”
In September, Mike entered a sleep clinic for an overnight polysomnography evaluation. The results showed mild sleep apnea. He was set up with a continuous positive airway pressure (CPAP) mask. A technician came to the house to walk Mike through the processes of using the mask and returned the following week to reinforce the practice. Although Mike assured the technician that all was going well and that he was sleeping with the mask on all night every night, he generally tried it for an hour or less, then set it aside.
Gradually, almost unconsciously, I’d been covering more and more details for Mike—helping him with email, keeping a backup calendar for his appointments, getting him to and from appointments, and generally watching out for whatever was next. He resented being “monitored,” and I resented the time suck of monitoring, but Mike was losing too many details when left on his own.
Puttering around in the kitchen one afternoon, I heard the phone ring, then heard Mike telling the caller his Social Security number. I went to him and tapped him on the shoulder. “Who’s that?” I mouthed. Mike glanced at me, then repeated the number. When he hung up I sat down beside him.
“It’s not a good idea to give out your Social Security number on the phone,” I said.
“It was just the bank.”
“It could have been anyone,” I said.
“It was the bank! Citibank! That’s what she said!”
“The bank already has your Social Security number.”
“They wanted to confirm!”
So now I needed to pay closer attention to phone calls, too.
In the category of paying closer attention, I was interacting with Mike’s church choir singers in a way that I’d never done before—confirming rehearsal dates and times, calling Mike’s attention to choir-related emails, even printing such emails out for him. I’d had hints from some of the choir members that rehearsals were sometimes disorganized. Nothing stated outright, but there was a subtext. One of the choir members, Susan Forester, was also on the staff as a part-time nurse. She and I had connected easily at choir parties, and I felt I could talk with her in confidence. I made an appointment and met with her in her office at the church. I told her I had some concerns that Mike was having difficulty keeping track of things, and asked if she had observed any such difficulties. She had.
She wondered if he might be having petit mal seizures. There were times when he would seem to blank out for an instant, then come back. He was less organized in rehearsal than he’d been the previous season. She emphasized how much they all loved Mike. What a wonderful musician he was, etc., etc. But yes, she and others were also concerned that something was wrong.
Notes from my very sporadic journal entries indicated the same behaviors at the end of December 2008, as those listed in 2007, though each of the behaviors had become more pronounced. What in 2007 had been “occasional indifference and self-absorption with others,” was now constant rather than occasional.
Prescription drug intake had increased both in variety and dosage.
I had two of those plastic containers with divisions for each day of the week. One was clear, and on that I put a sticker-picture of the sun. The other one was dark blue, opaque, and I gave that a sticker-picture of the moon. But in spite of my efforts to help Mike know which pills to take in the morning, and which in the evening, he could no longer handle his meds on his own. In addition to keeping track of his calendar, helping him with email and all things computer related, seeing to it that his car got serviced, and aiding communications with him between both church choir and Chanteuses singers, I was now managing his meds—refilling prescriptions, putting pills in weekly plastic containers, doling them out first thing in the morning and before bedtime, and hiding the containers between times.
ANOTHER WRINKLE IN TIME
2008
It is November. I’m returning home from San Antonio after the annual National Council of Teachers of English conference and the following Assembly on Adolescent Literature workshop, where I spoke on the subject of Intellectual Freedom in teen fiction. Since the conference included a weekend and Mike had choir duties, I went on my own.
My plane lands in Sacramento late Tuesday night, and I make my way down to baggage claim, where Mike usually meets me and helps carry things to the car. When he isn’t there, I assume he’s decided to pick me up at the curb rather than bother to park. I get my bag from the carousel and schlep that, along with my oversized purse and computer bag with presentation materials, out front where I watch every gold Honda come around the curve, hoping it is ours. After 20 minutes or so I call Mike’s cell phone but as is often the case, it isn’t turned on. I call our home phone. Mike answers, sleepily.
“Are you in bed?” I ask.
“Yes. I was tired.”
“I’m waiting for you at the airport.”
“I thought you were getting in tomorrow night.”
“No, hon. I’m here now.”
“Okay. I’ll be right there.”
“I’m at the curb, outside Southwest baggage claim doors.”
It is indicative of my growing acceptance that Mike can’t keep dates straight that I didn’t bother to point out to him that my itinerary had been front and center on the refrigerator, with another printed copy on his desk, and also in his email file, and that I’d called him from the airport just that morning, before I left San Antonio. It was also indicative of my changed expectations that I’m not angry, just very, very sad.
Mike arrives about a half hour later and puts my bags in the trunk without a word. On the way home he complains of how tired he is. I try to give him a few highlights of the conference, but he can only turn the “conversation” back to being tired. Once home he deposits my suitcase in the utility room and goes upstairs, again without a word. A very different welcoming than those of just a few years ago, when, after carrying my bags upstairs, he would pour champagne, set out brie and crackers, maybe a few bunches of grapes, and we would talk long into the night of what had gone on wi
th him in my absence, and of the details of my experiences away.
Although I seldom watched TV, I did that night, knowing I was too stirred up for sleep to come soon. Sunny curled up beside me on the couch, with her head resting on my thigh. I found an old Carol Burnett show and was soon laughing at the antics of Tim Conway. After an hour or so, Sunny and I went upstairs to bed. Within moments, Mike snuggled close against my back. “Love you big time,” he muttered sleepily. It was sweet, but it didn’t mean as much as it once had.
ALWAYS
2009
Saturday, March 7, 2009: Not quite awake, I lie close against Mike’s back, matching the rhythm of my breathing to his. Hints of sunlight filter through tiny gaps in the shutters of our upstairs bedroom. He rolls over to face me. A sweet, sleepy kiss on my forehead and then, “I love you.”
“I love you, too,” I tell him, stroking his cheek.
Hovering just below the surface of fully awake, it’s as if things are as they’ve always been. We love each other. We are partners in each other’s lives, living out the “for better or worse” we both promised over four decades ago, with the scales mostly balanced on the side of “for better.”
We kiss again, this time a lingering kiss on the lips, something that could, perhaps, lead to more, though between Mike’s antidepression meds and my past-prime vagina, “more” is a place we don’t often visit. Still, the slight stirring is welcome and prolongs the illusion that things are as they’ve always been.
As with most signs of troubles that come to other people at other times—the barely discernible lump near the left armpit, the empty bottles of cheap whiskey wrapped in newspaper and buried under other trash on pick-up day—Mike’s recent cognitive gaffes allowed for an interpretation of benign causes, and I, not wanting to see what I was seeing, attributed missed appointments to his not caring enough to write things down. When we planned to meet for dinner at 6 o’clock at Chevys and he went to Casa Ramos instead, I was pissed that he hadn’t bothered to get even that simplest of plans straight. Then came the Daylight Saving Time fiasco.
On this Saturday morning, before our clocks are to “spring ahead,” Mike insists on setting his watch and every clock in the house forward an hour.
“Let’s wait until just before bedtime,” I say. “The time doesn’t officially change until 2 tomorrow morning.”
“I know,” he says, proceeding to reset all of the clocks.
Throughout the course of the day Mike believes that he alone has the correct time. When I suggest otherwise, he points to the clock in the kitchen as proof that what I and the rest of the western states are thinking is 2 in the afternoon is really 3. Troubling as this is, it makes no difference in our practical world until a little after 5 in the evening. We’ve just been served margaritas and dinner at our local Mexican restaurant when, after a quick look at his watch, Mike announces that it is time to go.
“The show doesn’t start until 7,” I say, taking the “River City Cabaret” tickets from my purse and pointing to the listed time.
Mike looks at the tickets.
“Dessert and drinks at 6:30,” he says.
“Okay, so we have an hour and a half, and the Elks Lodge theater is only 10 minutes away.”
Mike taps his watch. “6:15” he says, and calls for the check.
The waiter hurries to our table.
“Is anything wrong with your order?”
“No,” Mike says, reaching for his American Express card. “We have tickets to a show, and we don’t want to be late.”
When the waiter returns with our card, I ask him if he can give me the time.
He glances at the clock over the bar.
“5:15,” he says.
When he’s out of earshot I say to Mike, “See, it’s really only 5:15. The time hasn’t actually changed yet.”
Mike gets up to leave.
“Please don’t do this. Let’s just enjoy our margaritas and have a relaxed dinner.”
“I’ll be in the car,” he says, and walks out.
I take a few more sips of margarita, another bite of spinach enchilada, but it’s no use. I leave the restaurant, get in the car, and ride in angry silence to the Elks Lodge.
The woman at the ticket desk tells us it will be an hour or so before the theater doors open, but we can wait in the dining room if we’d like.
We follow her directions to a large room filled with white-clothed tables that are apparently waiting for diners. There’s a small bar set up in the corner, complete with a bartender. The capacity sign on the wall allows for 320, but at 5:30 there are only the three of us in the room.
“Would you like a glass of Merlot?” I ask Mike.
“No, thanks. I’ll have something when we go inside.”
I order a glass of Chardonnay and we sit at one of the tables. We comment on the room and the surprising largeness of the whole facility. We’ve driven past it hundreds of times but never really paid much attention.
After a few minutes of trivial conversation Mike decides to go back to the theater. Although it’s still a long time before the doors are to open, I don’t bother to say so.
“I’ll be in after I finish my wine,” I say.
From a rack near the bar, I gather printed information on Elks activities and take my collection back to the table. On the blank back page of an Elks brochure I write a frenzied account of my anger and frustration—Mike’s stubbornness, my missed dinner, this wasted time, Mike’s unwillingness to consider anyone else’s point of view, etc., etc.
Finally, another glass of wine and three defaced brochures later, puzzlement overcomes anger. I think back to other events of the recent past—going to his church choir directing job on Saturday, thinking it was Sunday, then being angry that no one had shown up. Missing a dress rehearsal for a small choral concert in which he was the tenor soloist. Showing up for a doctor’s appointment a day early. Calling the newspaper on a Tuesday morning to complain that the Sunday New York Times had not been delivered.
What I have not wanted to see flares before me like the blinding bright lights of an oncoming car on a dark country road, and I know in the depths of my being that Mike’s sense of time has been ripped apart, as if it has gone through one of those cross-cut paper shredders, and there is nothing either he, or I, or anyone else can do to paste it together again. A sense of impending disaster fills my consciousness, casting all else aside. Our upcoming trip to Florida? The dry rot in our patio eaves? Tomorrow’s manicure appointment? Our 3-year-old granddaughter’s sudden emergence as a master of the English language? All such thoughts of the everyday joys and challenges of life are but grains of sand, buried deep beneath the avalanche of impending doom.
I sit at the table, surrounded by all of those other empty tables, practicing deep breathing, practicing the serenity prayer, practicing detachment. Finally, as a distraction, I read the front of the first sullied brochure, surprised to see that the Exalted Ruler of the lodge is a woman. I fantasize briefly about joining the Benevolent and Protective Order of Elks. They offer a number of significant scholarships each year. As a retired teacher I’m all for supporting education. We could come to the Wednesday night spaghetti dinner for only $5. I like the bartender.
After a brief time in the Elkland fantasy, I remind myself that I’m not the club type and go in search of Mike. The doors to the theater are now open, and people are gathering at tables and lining up for drinks and desserts. I find Mike at a table near the stage. “Here, I saved you a place,” he says, smiling, as he stands to pull the chair out for me.
Halfway through the show, a small ensemble sings a song that, for all its overdone familiarity, still conjures cherished memories of our shared history. “… I’ll be loving you, always, with a love that’s true, always …” Mike reaches for my hand. With the warmth of his long-familiar touch, I rest my head lightly against his shoulder.
“… Days may not be fair, always. That’s when I’ll be there, a
lways …”
Melody and memory fill me with the sweetness of so many times past—newly married, dancing in the lounge of the Century Plaza Hotel in Los Angeles. A few stolen moments with the old VM hi-fi, kids finally asleep. Mike’s brief glance my way from the Pasadena coffeehouse stage, as he sang in his strong, pure, tenor voice “… Not for just a year, but always …”
On the way home, Mike suggests that, since we don’t have to worry about getting up early in the morning, we stop for dessert.
“Didn’t you say you called the choir for an early rehearsal tomorrow?”
“Not tomorrow,” he says. “Tomorrow’s Saturday.”
“No. Tomorrow’s Sunday.”
“Saturday,” he says, turning onto the street of his favorite pie and coffee place.
Mike orders a piece of apple pie with ice cream and a cup of decaf coffee, as he always does. I order a cup of real coffee with cream, as I always do. But, as I learned in my long ago English major days, “the moving finger writes; and having writ, moves on…” and the bold, indelible writing on this page of my life declares that “as always” is no longer, and will never again be.
June 2012
Dear Mike,
I hardly ever have occasion to use Sunrise anymore, that congested thoroughfare we once used on a daily basis, Gold River to the freeway, or up to Macy’s or Trader Joe’s. But yesterday I decided to browse Christopher & Banks for a new summer T-shirt. It’s strange how very familiar yet foreign that part of the area now seems.
'til Death or Dementia Do Us Part Page 10
