'til Death or Dementia Do Us Part

by Marilyn Reynolds

When we got in the car to go back to Carmichael Oaks Mike told me he hated Citrus Heights Bridges, he was never going back again, I couldn’t make him go back again, and on and on. On the day of the next scheduled visit he was adamant about not going and refused to get dressed.

  Shortly after I gave up on Citrus Heights Bridges, I heard that Rachel (mine for life) was now the director of The Guiding Star memory care facility, which was part of Porto Sicuro, a larger compound in Cameron Park that included luxurious condominiums for both independent and assisted living residents. I was surprised to learn that she’d left Riverside, but glad to know where she was currently working.

  The leader of the dementia support group, as well as Carmichael Oaks staff and others who saw Mike often, all either directly or subtly, raised the issue of Mike’s increasing difficulty. Some urged me to get prepared for the next step.

  I’d been visiting local memory care facilities, knowing that the day would come when I would have to move Mike to such a place. Because Cameron Park was 30 miles from my home base, and because it looked quite luxurious, I’d not even considered a visit to that facility. But, remembering how effective Rachel had been with Mike, I decided to take a look.

  I was again impressed with Rachel’s empathy and understanding of dementia sufferers. The Guiding Star was in transition from one owner to the next and had many vacancies. As a result, it was less expensive than most other places I’d visited—a mere $2,800 monthly base fee, as compared to a minimum of $4,000 elsewhere. The Guiding Star at Porto Sicuro was also arranged in a way that felt less closed in than most other places. After a tour and a long conversation with Rachel, I decided to try Mike in The Guiding Star day program, once past the holidays. I completed the necessary paperwork that qualified Mike as either a part-time or a full-time resident. He could come for just a day, or two, or he could come to stay.

  A few weeks after I’d completed the paperwork for Mike’s entry to Porto Sicuro’s Guiding Star unit, I drove back out to Cameron Park for one of Rachel’s weekly dementia support group meetings. Since I was the only one who’d shown up for the “group” that day, I had a chance to talk more with Rachel about Mike. She was very certain of her methods and spoke of them with an almost missionary zeal. But her approach sounded more enlightened and humane than the ways in which I’d seen other caregivers deal with dementia charges. Not that I’d witnessed any brutality or unkindness, or neglect. My sense was that everyone was doing the best they could. But others seemed to lack the insight and intuition that Rachel exhibited. I was, though, concerned about what I had learned after her departure from Riverside, that Rachel moved around a lot.

  “How long do you expect to be here at The Guiding Star?” I asked.

  Rachel paused thoughtfully before answering. “Well, I’m a rolling stone,” she said.

  “Are you ready to roll?”

  She laughed. “No. You don’t need to worry about that. I got rid of everyone in this place when I took over here. I’ve hired only inexperienced caregivers, and I’m personally training each one. By the time I leave this place, it will be humming along like a well-tuned machine.”

  I left thinking that when the time came, this would be the place for Mike. I didn’t know when that time would be.

  In the meantime, I occasionally hired caregivers when things came up that I needed to attend to without Mike. Sometimes hired caregivers worked well, sometimes not. Friends and family continued to give me a break by taking Mike out for lunch, or to a movie, but his growing tendency to suddenly vanish from sight meant that an outing that was once manageable for one person now took two—one to buy the movie ticket or pay the restaurant bill, and another to race after Mike while the first person waited for change. Or one to wait at the table for the check while the other stood outside the restroom door, ready to guide Mike away from the exit and back to the table.

  Our family Thanksgivings had, for decades, been celebrated with the Reynolds-Kyle family in their Woodacre home. It was an event we had both long enjoyed, and Mike was eager to get there. For several days before we were to leave he had been up before 6 asking, “Shall we go now?”

  “Not today,” I would tell him, and then tell him again, and again, and again. And I would tell myself, “It’s not his fault. It’s not his fault,” again and again and again. That mantra, the serenity prayer, compartmentalizing worry, reading, help from friends and family, all helped me hang onto my goodwill and sanity. But the goodwill/sanity rope was fraying.

  Finally, Tuesday morning around 10, worn down with trying to keep Mike focused on something besides leaving, we left for Woodacre. We’d just gotteen on the freeway when Mike said we had to stop. He had to go to the bathroom.

  “You just went before we left home,” I reminded him.

  “I have to go to the bathroom!” he said, reaching for the child-locked handle on the passenger side of the car.

  “Okay. Let’s find a gas station.” I moved into the right lane for the next exit, running through my mind gas stations I knew to be close by.

  Within minutes I pulled into the parking area of a Chevron station. I released the child lock, and Mike bolted out the door.

  Once on our way again, Mike reclined his seat back as far as it would go and went to sleep.

  The plan had been for us to get to Sharon and Doug’s around 5 in the evening, in time for a light dinner. It generally took us two hours or less to make the 100-mile drive to their home in the woods above San Rafael. If I were lucky, we might hit a little traffic, extend the drive for an hour. Maybe I’d purposely take a wrong turn when I got to the fork that led one way toward San Rafael, the other toward Sonoma. Maybe we’d have lunch at that little Portuguese restaurant that we loved. I remembered that it was right there on the Plaza, easy to find. I remembered the potato soup that was more than potato soup, a Portuguese specialty.

  I glanced over at the sleeping man who still looked a lot like Mike but wasn’t. What was I thinking? When the opportunity to take the Sonoma turnoff appeared, I drove on by. I did take a Novato turn-off and drove aimlessly around for 30 or 40 minutes, then got back on the freeway headed toward Sharon and Doug’s. I stopped for lunch at a familiar diner in San Anselmo, only 20 minutes or so from Woodacre. Mike ate quickly. “Let’s go,” he said.

  I led him into a nearby specialty shop, with dinnerware and vases, handmade pottery and wall hangings. The man who’d loved to browse such places, loved to shop, stood in the doorway, scanned the room, and made a beeline back to the car. 1:45.

  Before I pulled out from our parking space, I called Sharon.

  “We’re way early,” I said. “I’m sorry.”

  “That’s fine. The house is unlocked. I’ll be home around 4, also.”

  “Okay.”

  “The downstairs is cleaned up and ready for you.”

  “Thanks.”

  “Hard morning?” she asked.

  “Not really. Dad was in a huge hurry to leave home, though.”

  “Make yourselves at home. I’ll see you a little later. The girls will probably be home around 4, also.”

  A few miles out of San Anselmo, on Sir Frances Drake Boulevard, the road became gently curvy, with a slight but steady incline and rolling hills on either side. At the turnoff to Woodacre, we entered a densely forested area with signs to watch for deer. We turned off the highway at the little Woodacre Market, a store that catered to the organic, gluten-free, raw foods, sometimes Paleo residents, and also to hikers and campers on their way to Samuel P. Taylor park and other, more distant campsites.

  Just a few more blocks, then a steep and less-than-gentle curvy drive past Spirit Rock, then a sharp turn onto an even steeper driveway leading to Sharon and Doug’s place. Another 60 feet or so and a sharp right, another steep incline, though for only about 20 feet, to a wide, level parking space, probably big enough for 10 or so cars if no one cared about being blocked in.

  Their place was split level with a downstairs apartment
where we often stayed when we visited. We carried our things down the driveway, then down the steps that led to the apartment. Once we unloaded, I led Mike upstairs to the living room where there was a TV. I found an old movie for him and went back downstairs hoping for a short nap. That worked for a little while.

  For the past three years, our custom had been to spend the Tuesday night before Thanksgiving in Woodacre, so we could show up to Subei’s Grandparents’ Day at Marin Academy on Wednesday morning. Wednesday evening we’d have a simple dinner with just the 6 of us. Thanksgiving Day, Dale, Marg, and Corry would join us for the feast. Friday would be a movie day, then home on Friday evening.

  This year, on Tuesday, just shortly after dinner with Sharon and Doug, Subei and Lena, Mike pushed away from the table, stood, and said, “Let’s go home.”

  I reminded him of Grandparents’ Day, and then Thanksgiving.

  “Okay,” he said. “I’ll just go to bed,” which he did.

  The next morning, Wednesday, before 6, Mike was up. He had his jacket on over his pajamas. “Let’s go home,” he said.

  “Not yet.”

  “I’ll just wait for you in the car,” he said, walking toward the door.

  “No. Let’s get dressed and we’ll see if there’s coffee upstairs.”

  “Okay,” he said, putting on his shoes and walking up the driveway. “I’ll wait for you in the car.”

  I followed behind, calling him back. With as much enthusiasm as I could muster, I suggested, “Let’s have a cup of coffee before we leave.”

  Over the course of the next hour, I led him back from the driveway to exchange his pajama tops for a shirt, led back to exchange his pajama bottoms for pants, to shave, to brush his teeth and, finally, back up the driveway to the car.

  At Marin Academy, a private high school with an enrollment of 400, 100 per class, there was a mix and mingle time in the lobby of the small but state-of-the-art theatre, with a nice spread of baked goods, and coffee or tea. Then we gathered on a beautiful patio where on one side there was a corner set up for students and their grandparents to have their pictures taken together, and on the other side tables where grandparents were given programs and a schedule of the classes we were to attend with our grandkids.

  Mike spotted our 15-year-old-granddaughter, Subei. He greeted her with a big hug, and told her how happy he was to be there. We had our pictures taken, then went to our first classroom “assignment.”

  At Marin Academy, in a free and open setting, with just the right balance of guidance, Subei’s creativity has blossomed. She’s literally found her voice as a singer and enjoyed a freer approach to music than she previously experienced with formal piano and cello lessons. She’s in an intellectually stimulating, and challenging, environment. It was delightful to meet her teachers and friends—a close-knit group of bright, funny, creative, caring teens.

  Having taught for decades at a public alternative high school, though, I’m aware of the vast differences in educational opportunities for kids from affluent families and those from families living in, or near, the poverty level. I want Marin Academy quality of education for every kid, not just for my grandkids and their peers.

  I stewed about the gross inequalities in our nation for a few moments, then led Mike to Room 207, where we would be exposed to Astrophysics with Subei in her second period class.

  From the classroom presentations to music/dance performances in the theater, Mike followed my lead without complaint. The final event of the day took place in the gymnasium, with grandparents, friends and staff crowded onto the bleachers.

  From my place in the bleachers, about 10 rows up, I noticed a strikingly attractive woman walking toward our section. She was wearing a brightly colored, free flowing garment, augmented with silky scarves of harmonizing colors. Her hair was thick and full and fell in long dreadlocks way past her shoulders. What a presence. Unlike me, who, in order to maintain my balance, practically had to crawl on hands and knees up to a vacant space in the bleachers, she stood straight and tall, taking her place just in front of us in two long strides.

  Students, essentially the whole school, were crowded onto the court, participating in choral and dance presentations, performing both instrumental and vocal solo performances, and offering a few “spoken word” interpretations of their own, or someone else’s, poetry. Between performances were group presentations of appreciation to staff and to fellow students. It was all very touching and captured my full attention.

  Something, some slight stirring perhaps, shifted my attention to Mike. There he sat, holding one of the woman’s long, tightly twisted dreadlocks between his thumb and index finger, rolling it back and forth.

  “No, Mike!” I whispered, gently releasing the dreadlock to fall back into its rightful place. The woman didn’t stir, but it was just one more sign that the part of Mike’s brain that inhibits inappropriate behavior was losing ground.

  The rest of our visit was, “Let’s go. Let’s go. Let’s go.”

  A few days after our return from Woodacre, back at Carmichael Oaks, we were in the elevator on our way to dinner. It stopped, for no apparent reason, on the second floor. The doors opened and Mike stepped forward. I touched his arm. “Not yet,” I told him. “We want the first floor.”

  He turned toward me, then stomped to the back of the elevator—the Carmichael Oaks elevators are big enough to accommodate wheelchairs. Big enough to stomp in.

  Mike stood straight and stiff at the back, scowling.

  “You seem so angry,” I said.

  This was simply an observation, stated calmly.

  Head thrust forward, fists clenched, Mike shouted, “I AM ANGRY! I FEEL LIKE SMACKING YOU!!”

  In the blink of an eye a whole array of possibilities appeared before me. I saw myself standing close to him, challenging him. “YOU WOULDN’T DARE SMACK ME!” I might say, taking the hit. That would start the ball rolling. A call to the police. A 72-hour observation period. A placement decision. How easy that could be?

  Instead I said, calmly, “Smacking me wouldn’t be a good idea.”

  “Why? What would happen?” he said.

  “I would be out of here so fast it would make your head spin. I don’t know who would take care of you then, but it wouldn’t be me.”

  Whether or not Mike got what I said is uncertain, but he was unusually subdued for the rest of the evening.

  Not long after that incident I took Mike with me to the Folsom Toyota dealer to get our car serviced. He sat with me in the office while the service manager wrote the repair order, then went with me into the lobby area where we were to wait for the shuttle to take us back home. No sooner had we sat down than Mike stood up again.

  “Let’s go!”

  “We’re waiting for the shuttle,” I said. “Let’s get some coffee from the machine.”

  That took about three minutes.

  “Let’s go get the car,” Mike said.

  “It won’t be ready until this afternoon.”

  “I’ll just walk home,” he said.

  “Mike. You can’t walk home. It’s pouring down rain, and we’re 10 miles away from home.”

  “I’ll just walk.”

  “No. Look at those stuffed animals over there. Do you think Mika would like one?”

  “Let’s rent a car.”

  “The shuttle will be here soon.”

  “We should just go buy a car.”

  “Our car will be fine as soon as it’s serviced.”

  “Okay. I’m walking!”

  He rushed toward the door, then, miracle of miracles, a longtime friend came walking through the door Mike was about to leave by.

  “Dave Dawson!” Mike said, his old social self emerging.

  “Well, if it isn’t the Reynoldses,” Dave said. “I suppose you’re out on this stormy morning for the same reason I am.”

  “Mike was just threatening to walk home,” I said, careful to keep my tone light.
<
br />   Dave, who knew of Mike’s situation, said, “Oh, you don’t want to do that. Let’s get some of that free coffee over there.”

  “Sure,” Mike said, following Dave to the coffee cart.

  A few minutes later we were called for the shuttle.

  Once back in the apartment, I turned on the TV and found an old movie for Mike to watch. That held his attention for about 10 minutes, after which he turned off the TV.

  “Let’s go get the car,” he said.

  “It’s not time yet. They’ll call us.”

  That was the theme for the next four hours. Mike’s agitation increased. His attention span decreased. And this day was undoubtedly better than the next would be.

  March 2015

  Dear Mike,

  Flipping through one of the journals you left behind, journals that had been boxed up since we left Gold River, I read, “I’ve made a terrible mistake. I hope Marilyn never, ever learns of this.”

  You wrote this when you were on a music fellowship in Vienna, in the fall of 1985. You would have been 45.

  I think back to that time, wondering what your terrible mistake might have been. Would this have been one of those secrets that one sometimes hears about, of a widowed/widowered (?) spouse’s discovery that somehow shatters the very foundations of the marriage they thought they’d had, that destroys so much of their understanding of who they had been in the world, with their partner, that now every single thing about their life is called into question? Would this have been one of those revelations that destroys one’s very sense of identity, sweeps it all away, like some fragile leaf tumbled and torn apart in a storm? I can’t imagine what that would be. Whatever it was, you must have thought of it as a betrayal. Was it an affair with some woman? A man? I felt certain whatever it was didn’t involve theft, or murder, or a hit and run in a rented car.

  In my memory, those years of the ’80s were good years for us. In 1985, Matt was 16, playing club soccer, doing well-enough in high school. Sharon and Cindi were in their 20s, Sharon in Northern California, studying to become a chiropractor, Cindi newly married and living in Massachusetts where her then-husband was stationed. With just the three of us at home, our lives were less complicated and demanding than when all five us lived under the same roof.