'til Death or Dementia Do Us Part

by Marilyn Reynolds

  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 avai
lable 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.

  PASQUALE’S ON FOOT

  September 2010

  It was not long after our trip to Santa Monica that Mike disappeared from Carmichael Oaks. He was watching TV when I left around 3 to meet a friend for coffee. I told him I wouldn’t be gone long and reminded him that we had plans to meet friends at 6 for dinner at a little Italian place about a mile down the road.

  He barely looked up as I left. I thought I could get away with a 45-minute absence. Engrossed in conversation, I didn’t check my watch until it was nearly 4:30. I should have set an alarm. I hurried back to the apartment. Mike wasn’t there. I went downstairs, hoping to find him playing the piano. Not there. I checked the dining room. None of the servers had seen him since lunchtime. No one at the front desk knew where he was. The director, Janice, called the downstairs caregivers and asked that they search the building, including storage areas and laundry rooms.

  Mike still sometimes asked to go “home,” but was usually easily redirected from that idea. But there was that time he’d taken off walking, headed for “home.”

  Maybe … I stopped by the front office on my way out, telling Janice I was going to check at the old house. I asked her to call my cell phone if she learned anything new.

  Now dusk, I drove along busy Fair Oaks Boulevard, scanning for Mike on both sides of the street. I pulled into the garage of our old, empty house. The key was still in its hiding place and I doubted that, if Mike had used it, he would have put it back. Nothing, though, was predictable. I went inside, calling for Mike. There was a light on, but I was pretty sure I’d left it on from the last time I’d been there, clearing out our remaining belongings for storage.

  I looked in every room upstairs and down, but there was no sign of Mike. In the car, on my way back to Carmichael Oaks, I called the director to say I’d had no luck. She said the activities director had seen Mike go out front some time between 3:30 and 4, but thought nothing of it since he often would get picked up out front for rehearsals, or movies or lunch with friends.

  Even before FTD, Mike was not a careful pedestrian. Now it was dark, and I imagined the worst. In the midst of giving Janice a description of what Mike had been wearing so she could pass that on when she called the police, she said, “Oh. Wait a minute.”

  She was gone for a moment, then back on the phone:

  “He just walked in.”

  She told me that Linda, the activities director, grabbed Mike as he walked in and sat him down at the piano. She would keep him playing until I get back.

  When I walked into the big lobby, there was Mike pounding out “The Yellow Rose of Texas,” Linda standing behind him with her hands firmly planted on his shoulders. Another resident was leaning against her walker, listening. When he finished the song, I told him I’d been looking for him. He folded his music book and followed me down the hall to the elevator. Even though it was cool outside, his shirt was drenched in sweat.

  “Where’ve you been?”

  “Well, I was at Pasquale’s, but Jeannie and Bill never showed up!” he said, his voice too loud for the enclosed elevator.

  “We’re not meeting them until 6,” I said.

  “Well, I waited, but they never showed up. It was bizarre!”

  “Did you go inside?”

  “I had a cheese calzone and a glass of red wine.”

  “Really? How was it?”

  “I don’t know. They were closed.”

  “It was early,” I told him.

  “I went back and they were still closed!”

  Had he walked to and from the restaurant twice, along busy Fair Oaks, part of the time in the dark? About half the time what Mike said was grossly inaccurate, and about half the time it was true, so there was no way of knowing what his past two and a half hours had been like. What I did know was that he absolutely should never be left alone again.

  I felt as if I, too, was fast approaching a life behind locked walls and gates.

  DAY CARE OR …?

  November 2010

  Under the guise that they needed a piano player and other help with their coming Christmas program, I got Mike set up on a twice a week day care program at Citrus Heights Bridges. Both Carol Kinsel of Senior Care Solutions and a woman in the dementia support group I sometimes attended said good things about this facility. That would provide two days a week of safety and activity for Mike, and two days
a week for me to focus on other aspects of our lives that needed attention, and maybe even eke out a little reading time.

  Citrus Heights Bridges was by far the most inviting of all the memory care facilities I’d recently visited. Even so, “most inviting” still didn’t look all that good. I managed to keep Mike going there for nearly three weeks, but with each visit it became increasingly more difficult to get him out of our apartment and into the car as he kept insisting that he wasn’t going to “that other convalescent home” ever again.

  Each time I repeated what had now become a script: I can’t absolutely, always, be with you. It’s no longer safe for you to be left on your own. If you forget where I am, you might take off on foot, on a busy street, in search of me. That would be dangerous. Mike didn’t contradict any of that. He simply kept repeating that he was not going to that awful place, and that the people there were uninteresting.

  On Mike’s sixth scheduled day at Citrus Heights Bridges, our 20-minute trip up there was miserable. He at first was asking that I let him out so he could walk home, then, with his hand on the door handle, telling me, “I’m getting out here.” This at 60 miles an hour on I-80. I had the child lock on, but it still felt like risky business.

  The director greeted Mike warmly when I walked him through the front door. “I’m so glad you’re here,” she said.

  Mike’s public persona kicked in.

  “I’m happy to be here!”

  When I picked him up at 2 in the afternoon, both the director and activities coordinator said how helpful he’d been in rehearsals for their upcoming Christmas program. They hoped Mike could help them out again, day after tomorrow.

  “I’ll be here!” he said, all smiles.