By July, we were in something of a routine at Carmichael Oaks—breakfast at 7:30, lunch at noon, dinner at 5. We didn’t have to eat at those times. The dining room was open for a span of three hours for each meal. But Mike had fallen into a pattern, and any deviation from a pattern was troublesome to him.
The details of everyday life were definitely easier at C.O. The freedom from providing three meals a day for us was welcome. It meant fewer trips to the grocery store, where Mike would sometimes grab strange items to deposit in our shopping cart. Or worse yet, where he would wander away. The small kitchen with just a refrigerator and microwave was infinitely more manageable than the fully stocked Gold River kitchen with countertop stove, oven, and a myriad of small appliances on the center island, available for whatever task Mike might conjure. If there were times when the C.O. dining room food bordered on boring, it was worth a bit of boredom not to have to be on the three-meals-a-day job, or to be monitoring Mike’s kitchen activities. And really, as far as the food went, their cooks were at least as good as I was, often better.
No longer able to leave Mike on his own long enough to participate in my local writing group, I started a new group at C.O. We met once a week in the “library,” which was directly across from our apartment. I’d get Mike set up with a movie, then walk across the hall to meet with fellow writers. Sooner or later, usually sooner, Mike would come looking for me. As soon as our apartment door opened, I could call to him. He might come in and sit with us for a moment, or go on downstairs to the area where doughnuts were always available. Better still, he might go to the downstairs living room and play the piano for a while. He was always restless, but his level of anxiety was lower when I was on the premises than if I were elsewhere.
There were six of us in the writing group. I was the youngest at 74. The others ranged in age from 85 to 96. Each meeting, I brought in a writing prompt, which they (me, too) would respond to during the week. We’d bring what we’d written to the next meeting. Each person read his/her work to the group, and we responded to what we liked in the reading. The 96-year-old had severe vision problems. She wrote with the help of various magnifying devices, then, because the actual writing too small to read, I read her work aloud for her.
The writers regularly expressed their appreciation for our group. To a person each said it was the highlight of his/her week. Truly, though, the group was a gift to me—moments of sanity in the midst of disorder and instability.
Although Mike and I left Carmichael Oaks in January 2011, I continued meeting with the C.O. writing group on a biweekly basis for five more years. Ica Ingraham, the oldest member of the group, died in November 2015 at the age of 102. Her niece now has volumes of Ica’s tales of her life growing up on a farm in Iowa, hilarious stories of camping mishaps with her husband and friends, and stories of sweet and tender times. All of the writers were aging courageously, and I was lucky to know them on a deeper level than the hellos and goodbyes in the dining room setting.
One of the noticeable changes in Mike’s behaviors was that he visited the bathroom much more frequently than in previous years, and he rushed in with apparent great urgency. In the car he would ask that I stop so he could pee. If there wasn’t a filling station immediately available, he would demand that I let him out so he could pee at the side of the road. Surface street. Freeway. It didn’t matter. He demanded that I stop the car “right now!” to let him out. Thank the Goddess for child safety locks on car doors. There was no apparent physical reason for this increased frequency. He didn’t have a urinary tract infection or other urological problems. It was likely related to FTD, and perhaps a precursor to incontinence.
In September we flew to Walla Walla to visit Matt, Leesa and Mika. Mike was up and down several times on the flight to Seattle, going back to the restrooms, then immediately returning to his seat. “There was a line,” he said at one point. Then he was up again. And back again.
As we began our descent into Seattle, Mike unbuckled his seat belt and said he had to use the restroom. The seat belt light was on. Everyone was to stay seated.
“You can’t go now,” I told him.
“I have to,” he said and walked toward the back of the plane.
The attendant sent him back to his seat and again announced the necessity of everyone remaining in their seats with safety belts buckled until we’d landed and the captain turned off the seat belt sign.
Then Mike got up and walked toward the front of the plane. He was sent back. There was another announcement. When he again unbuckled his seat belt, I held his arm and told him he really must stay in his seat. I watched as he put his carry-on bag on his lap, then seemed to relax. I realized he’d peed in his pants.
Once off the plane, I asked Mike if he wanted to use the restroom. No, he said, he’d already done that.
“Which way to baggage claim?” he asked.
“We won’t get our bags until we get to Walla Walla. Seattle is just a stopover…. Are you hungry?”
The answer to that was always yes, and food was always a successful, even if short-lived, distraction. We got a small pizza and sat down to eat. After just a few bites Mike got up, said he’d be right back and rushed away. I thought he’d gone to the restroom, but when he wasn’t back after 10 minutes, I became concerned. I got our stuff—his jacket and carry-on, my briefcase with computer, purse and jacket, and went to the gate from which we were to depart. He wasn’t there. I went to customer service and explained the problem. They paged Mike, but asking him to return to gate C2D was as effective as leaving him a message in Swahili would have been. I provided his description and went looking for him. At this point I longed for the bright red wool jacket he’d worn all last winter. On this day he was wearing what 99 percent of the other middle-aged men in the airport were wearing—dark long-sleeved shirt and dark pants. I called Mike’s cell phone, which I’d watched him put in his pocket when we left the apartment. I got his voice mail.
Somewhere along the way it occurred to me that he had probably been uncomfortable in his wet pants and gone looking for his suitcase. I went to airport security with this idea. They advised contacting Seattle Port Police and reporting him missing. They made the call for me. Two police officers arrived within minutes. They were thorough and reassuring, took my cell phone number and went on the search.
As I’d guessed, he’d gone looking for our bags. The police found him outside the security area. One of the officers escorted Mike back to the gate where I was waiting. He was carrying someone else’s suitcase.
“I didn’t know where you were!” he shouted.
I thanked the officer profusely, then told him the bag Mike was carrying was not his.
“Here, I’ll put this back where it belongs,” he said, motioning toward the suitcase. Mike handed it to him and we walked through the gate, the last two to board the plane to Walla Walla.
Later in the week we visited a local bookstore. Mike was looking at “coffee table” books and I was looking for a birthday card for a friend. When I was ready to pay for the card, I looked around the store and Mike wasn’t there. I set the card down and went out to the sidewalk, scanning the area in both directions. No sign of Mike. Back in the bookstore I asked if any of the clerks had noticed him leave. He was wearing a red sweatshirt, I told them. Nope. One of the clerks had noticed him in the store but hadn’t seen him leave.
I left the store and headed back the way we’d come, looking in all the little shops of the sort that appealed to Mike. I called both Matt and Leesa at work. Leesa took an early lunch to join the search. My hope was that Mike had gone back to their house, about a 20-minute walk from downtown. But when I got there, he still was not to be found. Leesa also had no luck in finding him. I kept calling Mike’s cell phone but, although he often carried it, he seldom turned it on or checked messages anymore.
About half an hour—seemingly days—after I got back to Matt and Leesa’s, Mike came walking through the door.
“Where were you?” he demanded.
“Looking for you until I didn’t know where else to look. We were about to call the police.”
“I didn’t know where to find you!” he shouted.
The flights home were uneventful—“uneventful” being the new definition of paradise. In fact, the trip back was so uneventful that I felt emboldened to try another flight with Mike, this time to Los Angeles. I’d been invited to participate in the September “celebration” of banned books at the Santa Monica library.
Nancy Obrien, our longtime singer/traveler friend, met up with us near the library. The three of us had breakfast at the Tudor Tea Shoppe in honor of English breakfasts shared years ago on our walk through the Cotswolds. As was prearranged, I left Mike in Nancy’s care so I could check in at the library and take my place among other writers of banned books.
After a walk with her dogs and a visit to a mall, Nancy brought Mike to the library just in time for my talk about being the author of Young Adult books that are sometimes banned. Other friends had also dropped by to cheer me on. The event was held outside under a temporary canopy and consisted mainly of readings of banned materials, some by the authors and some by others reading works of those no longer around to read for themselves, Mark Twain, Jack London, and J.D. Salinger among them.
It was a sparkling Southern California day, the sky such a bright blue, the clouds such a pure white, it was difficult to imagine that air quality could ever be a concern. Mike was attentive, laughing in all the right places, and, later, over lunch at a little outdoor beachfront cafe, he participated in the conversation, asking about our friends’ families, commenting on the food, seemingly as right as ever. I was surprised and relieved that things went so smoothly.
The plane to take us from Burbank to Sacramento was delayed by over an hour. Mike’s anxiety level rose by the minute during our long wait. He wanted to stand in line for whatever plane was boarding in the general vicinity of our gate and was mistrustful of my assurance that the plane to Portland, or wherever, was not our plane. The wait that was just an hour in real time soon felt like somewhere between six months and eternity.
Finally, landing in Sacramento, Mike grabbed the first suitcase from the baggage carousel and proceeded out the door with it.
“Mike,” I called, running after him. He stopped and looked at me.
“That’s not our suitcase,” I said, taking his arm and guiding him back to the baggage carousel. He didn’t resist when took the suitcase from him, but in the time it took for me to place it back on the carousel, he’d grabbed another one and was headed for the door. I brought him, and it, back. He took another and another wrong suitcase from the belt. I put another and another back.
It was so tedious, this life I was now living. I had to be constantly alert, trying to avoid potential trouble, ready to do damage control. I was tired, and there was no end in sight. On the other hand, we’d made the trip without any major problems, and it was great reconnecting with longtime friends, and being an author out in the world again.
Based on Dr. Hess’s recommendation, Mike had recently stopped taking Aricept and had the dosage of Ritalin lowered by half. As far as we could tell, the Aricept had not been staving off any cognitive decline. The stimulant, Ritalin, had been prescribed some time back when ADD was still being considered as a possible cause of some of Mike’s mix-ups. Although Ritalin was not indicated for dementia, Mike did seem less apathetic when he was taking it. With the change in meds, he had become slightly more engaged, often asking to go “home.” He also resumed his habit of six months or so earlier, reading reports of the weather in Vienna and Paris, in preparation for “coming travels.” None of this was a problem. It was just indicative of the puzzling shifts in Mike’s thought processes.
One of FTD’s many possible symptoms is an extreme hunger for sweets, a symptom that Mike was exhibiting. He had been wolfing down the always available doughnuts from the lobby, or cookies from the snack bar, or ice cream if he could find it. Mike had always had a sweet tooth, especially for pie or pastries, but he’d never been prone to overindulging. Now “overindulging” was an understatement.
In the slippage department, I heard from three different residents that they saw Mike trying to get into the apartment directly below us. This happened when he returned from singing in the memory care section of our complex. Luckily, that apartment was vacant, so there was no harm done. This mix-up was partly my fault.
Mike had done well using the elevator to get to our floor and finding his way back to our apartment from the dining room, or memory care, or his piano in the downstairs living room. But because he’d put on so much weight and was getting so little exercise, I got us started using the stairs instead of the elevator. That, of course, worked fine when I was with him. But it turned out that coming back from memory care on his own, Mike had been stopping at the second floor rather than taking the next set of stairs up to the third floor. On the second floor, he’d go to the apartment directly below us and try to get in.
When a new resident moved in below us, Mike’s attempts to get into her apartment frightened her. Once, when she opened the door a crack to see who was there, Mike pushed his way past her and demanded to know where his dog was. Another time he made his way in through the sliders that opened onto her balcony.
Although I knew Mike’s doughnut eating wasn’t a healthy practice, going downstairs to the doughnut counter was something he could manage on his own. I was grateful for anything he could manage on his own and I expect it was, on some level of awareness, a relief to him to have 10 minutes free from my watching his every move. But even that tiny piece of autonomy came into question when he came back from a doughnut run, keys in hand, very irritated, and said to me, “I couldn’t get in!”
“Get in where?”
“Here! I couldn’t get in!”
“Well … I was here. The door wasn’t locked.”
“I’m telling you I couldn’t get in!!!”
Then, clothes on, including shoes, he got into bed.
Common wisdom holds that it’s best to hear the emotion rather than the words. I too often got stuck on the words. I should simply have said something like, “Let’s get your key checked,” or “How’s the doughnut?”
Moments after Mike went to bed, the phone rang. It was one of the staff saying that Mike had been trying to get into the apartment below us. When his key wouldn’t work, he gave the door a hard kick, once again frightening the little lady who lived there.
“We really can’t have this,” she told me.
“I know,” I said. It was more and more obvious that neither I nor the C. O. staff could sufficiently monitor Mike’s behavior.
No matter how hard I tried, I couldn’t always keep track of Mike. I took showers. I went to the bathroom. I put clothes in the washer down the hall from us. These things all offered opportunities for Mike to get away, to rush out on the busy street, or force his way into another apartment, or do any number of unpredictable, dangerous things.
The thought of moving Mike to a “secure” facility, a place where he would live behind locked doors and gates, was horrifying. On the other hand, it was clear that the day would come when we would be asked to leave the Carmichael Oaks facility. I didn’t even want to think about it, but I had to start carefully considering alternatives. And honestly, as much as I hated the thought of what was ahead for Mike, I knew it would be a great relief for me not to be watching out for him, micromanaging him, day in and day out.