'til Death or Dementia Do Us Part

by Marilyn Reynolds

With the darkening sky and the rising full moon, we sing moon songs. Mike and Marg are clear and loud enough that Dale, the Wards, and I, can sing out without danger of hurting any passing listener’s ears: “Blue Moon,” “Shine on Harvest Moon,” “It’s Only a Paper Moon,” “Moon Over Miami,” and, finally, “Moon Up In the Sky,” a song written and composed by Mike’s Aunt Treval, who for decades dreamt of success in the music business while working as a telephone operator in Marble Hill, Missouri.

  August 2005 was packed with good times. Then came September and hints of trouble ahead. As hints came more frequently, as hints became certainties, no matter how many times I listened to “Come Back to Sorrento,” with Mario Lanza’s resonant tenor voice, backed by a full orchestra replete with weeping strings, I knew beyond a doubt we could never return to Sorrento.

  January 2010

  Dear Mike,

  I know this letter, and all of the letters I’ve written to you since 2009, are only pretend, that you will never read them, that even if someone were to try to read them to you, you couldn’t listen. But it is strangely comforting to be telling parts of this story directly to you, rather than simply telling it about you.

  The worst part of this most difficult time of my life is that I’m not able to talk through any of it with you. Not the loss of our home, not the endless work of taking care of you, not the bankruptcy process, not having to live with almost no discretionary income. All of that is difficult, and not what I expected to be dealing with in my 70s. But not being able to talk with you, to share my deepest thoughts and feelings with you—that is the very worst. For most of our 40-plus years of marriage we were each other’s closest confidantes. Late at night, over dinner, in front of the fireplace, in bed in the mornings, we talked, laughed, worried, reassured. There were times we argued angrily over who knows what. But nearly always, our home was a loving home, our bed was a loving bed, and we laughed. I miss that all so much. I miss your arms around me. I miss the warmth of love in your eyes. I miss your frequent, spontaneous compliments—“You’re a pretty woman, Marilyn,” or “Your lips look delicious!” I don’t think such compliments will come my way again.

  I am ever grateful to be surrounded by friends and family who care for us both, who travel alongside me on this sad, uncharted odyssey, who offer help at every turn. Still, I hunger for your loving support and insights, for the depth of conversation that was once ours together.

  Loving you to the end,

  Marilyn

  I COULD WRITE A BOOK

  Fall 2005

  It is September 2005. Sometime between that glorious August vacation in Italy, and my 70th birthday celebration the following month, something shifts. Mike, usually Mister Party Organizer, is strangely uninvolved in preparations for my September 13 birthday party—my 70th—leaving the planning of the food, drinks, program and decorations to others.

  Dale and Sharon gather pictures and stories. Doug scans the photos, adds music, and puts together a slide show that spans all 70 years of my life. It is funny and poignant, and when finished, Doug tells me, “I now know more about your life than I do my own.” But where is Mike in all of this?

  He’s said he’ll take care of the wine for the 40 or so people who will be joining us in the big banquet room at the Newport Beach Dunes Resort. I’ve chosen the venue for its proximity to an area that was a significant part of my growing-up years.

  As the party date grows closer, and Mike’s still not done anything about the wine, Sharon offers to purchase it for him. He likes that idea. She knows what wines will work best and where to get good deals. She can buy the wine, and Mike will pay her back. Before the party, Sharon gives Mike the receipts for the wine. He tells her he’ll write a check. He doesn’t. I remind him that he needs to reimburse her. He says he will, but it doesn’t happen. It’s unlike him. Weeks later, after several reminders, I write the check from my own account.

  Mike’s contribution to the party program was to sing “If They Asked Me I Could Write a Book,” a song that over the past several years had gained meaning for us. Mike saw the whole book idea as a connection to my late-blooming writing career. The last lines about making two lovers of friends were reflective of our very early history together. Many songs had meaning for us, but this came as close to being “our” song as anything else.

  He sang beautifully and with great feeling, holding my gaze with those last lines, “And the simple secret of the plot, is just to tell them that I love you, a lot. Then the world discovers as my book ends, how to make two lovers of friends.” It was sweet and reassuring, but I continued to be puzzled by his relative indifference to details of the whole celebration. With most husbands this might have been business as usual, but it was definitely not business as usual for Mike. Looking back, I think that was when frontotemporal dementia made its first foray into the essence of Mike, starting the long and torturous assault on his capacity to listen, to empathize, to think logically, to participate in meaningful conversation, to love. At the time, though, it simply seemed that his love for me was waning. In those first FTD days there were still times when he was his most loving and connected self. But then, inexplicably, he would become distant and unreachable. After 38 strong years, was our marriage falling apart?

  Revisiting that time, I realize that our 2005 financial practices should not only have raised a red flag, but should have moved me to fight long and hard to change our spending habits. We were overusing credit cards—the trip, my birthday bash, dinners out, Mike’s habit of buying a new silk tie to wear to church every Sunday, season tickets for the San Francisco Symphony, which included overnights at our favorite boutique hotels, etc., etc., etc. It worried me that we were not quite coming out even at the end of every month. I’d always had a clearer vision of the big picture of our finances than Mike did, and I knew it was time for significant cutbacks. Cutting back, though, was not in Mike’s nature, and I too easily let things slide.

  The Italy trip had been an indulgence. It alone was not responsible for our ultimate financial downfall, but it was the beginning of a pattern. And although I may regret the pattern, I am ever grateful to remember Mike as he was in Italy: funny, witty and kind, sensitive and loving.

  In the late ’80s, when Mike was the tenor soloist at a large Episcopal Church in Pasadena, I attended regularly. I respected the church’s social justice work, I loved the music, and I loved the poetry of the readings and prayers. I loved that all hymns and readings had been carefully adapted to contain inclusive language, but that the rhythm of the adaptations remained true. As long as I approached the service on a metaphorical rather than a literal level, it was meaningful to me.

  Every Sunday, before communion, the priest announced that, “Wherever you are on your journey of faith, you are welcome at this table. All are welcome at Christ’s table,” and so, although I was not a believer, I regularly participated in the ritual of communion. For me, the process was not a statement of belief but rather recognition that I had a place in an ongoing human community, that we were all, the whole of humankind, in this mess of a world together.

  As I held my hands out to receive the wafer, the priest often said, “The body of Christ, the bread of heaven,” but sometimes it was “strength for the journey.” The memories of my time with Mike in Italy became a source of strength for the long, rough journey ahead.

  PANIC ATTACK OR…?

  Winter 2005

  Unlike a lot of writers, I don’t keep a regular journal. I wish I did. I have somewhere between 15 and 20 potential journals of varying sizes and configurations, ranging from cheap composition exercise books with lined paper to hand-sewn, leather-bound journals with acid free paper made from sustainable forest pulp. No matter. They all have several entries for January of whatever year it was that I had resolved to keep a journal. Some of them have occasional entries as late as mid-February. Since I’m more likely to keep a trip record, some of the stashed journals have details of certain travels. Not one of t
hem, though, offers a consistent record of any year of my life.

  Now, having confessed my slovenly journal habits, it should come as no surprise that I can’t be certain of the time frame of this event. I’m pretty sure it was sometime between the spring and winter of 2005.

  Mike had followed closely the development of the Walt Disney Concert Hall, delighted to see that Los Angeles would finally have a world-class performance venue. In 1987, Lillian Disney, widow of Walt Disney, donated $50 million for the project. Although Frank Gehry completed the designs in 1991, between added costs and difficulty raising additional necessary funds, the building was not completed until 2003. According to my backup fact checker, Wikipedia, the Disney Hall grand opening was one of the most successful grand openings of a concert hall in American history. Shortly after the opening, Mike sat in on a rehearsal and fell in love with the place. He was itching to sing in the new concert hall.

  From 1972 until we moved north in 1998, Mike had sung with the Los Angeles Master Chorale. He was no longer a regular with them, but he did occasionally go to LA to sing in a concert as a ringer when the tenor section needed bolstering. When, in 2005, the director of the Chorale called to say they needed help in the tenor section for an upcoming concert, Mike couldn’t have been happier. He sent his tux to the cleaners. He cleaned and buffed his black patent leather shoes. Since he would only be there for one rehearsal, he looked over the music and practiced the most complicated sections.

  The day before the rehearsal Mike flew to LA to spend time with singer friends he’d missed after leaving town. He called home right after the rehearsal, telling me the sound was glorious and raving about the beauty of the building. He was thrilled to be a part of it all. He called again the next night, a bit earlier than expected.

  “How was the concert?” I asked.

  “I couldn’t do it.”

  Although Mike had never been fond of standing on risers for an hour or more, crowded by singers to his right and left, front and back, he’d done it in thousands of concerts in the U.S., Eastern Europe, Western Europe, Japan, Israel, and, I’m sure, others that would be listed in my journals, if I’d kept journals.

  “Sweat was pouring off me. I felt faint. I had to get out of there!”

  He’d made his way off the risers and to the side exit during the last number before intermission. At intermission he told the director he had to leave. He went back to his hotel room, called me, then spent a sleepless night before catching his early morning flight back home.

  A long time friend and fellow Master Chorale singer encouraged Mike to try a beta blocker for next time. It worked for her. She reminded him that in his 30-plus years of singing with the chorale in a myriad of venues, the Disney Hall experience was the only time he hadn’t performed perfectly. He should call the director. It didn’t need to be the end of his Master Chorale experiences. But, embarrassed, afraid the same thing would happen again, he was through.

  Whenever he spoke of that experience, which wasn’t often, he always talked about the crowded, narrow risers, and said he got claustrophobic.

  I knew how unusual and disturbing that experience had been to Mike. But it never occurred to me that it was anything other than a one-off panic attack. Now, though, I wonder if it was part of the onset of FTD.’

  THESE SHOULD BE GOOD YEARS

  2006

  Mike had battled depression off and on for decades. He sometimes tried to get relief with an antidepressant, or help from a therapist, or both. And although life was not easy for either of us at his lowest points, there were plenty of moments of lightness, and there was consistently more light than dark. Then, in late 2005, early 2006, indifference and darkness were becoming more the norm. And, frankly, I was pissed.

  We were no longer tied to full-time teaching jobs. We each had meaningful work, Mike as music director at UUSS and also with various other music projects and professional singing jobs. I was working on No More Sad Goodbyes, the ninth book in my Hamilton High series of teen fiction, and doing occasional author visits to schools, teacher workshops, and conference presentations. Still, our schedules were flexible enough for overnights in San Francisco, or with Sharon and her family in Woodacre. We visited Matt and Leesa in LA and were happily anticipating the birth of their daughter. Our home in Gold River was spacious and inviting—an easy place for friends and family to gather. We were financially secure.

  These should have been very good years for us, but I was finding it more and more difficult to deal with Mike’s dissatisfaction. He didn’t like Sacramento. He wasn’t appreciated at the church. He was upset with the direction Cindi’s life was taking. He hated George W. Bush. Bush’s arrogance with his misguided determination to drag us into a war with Iraq, the horrible loss of American lives and even more Iraqi lives, seemed to both of us to be criminal. I didn’t disagree with Mike’s assessment of our president and his cronies, but his over-the-top ranting was wearing. One time, after hearing Mike’s litany of all that was wrong with his life, I accused him of robbing us of the great pleasure of our retirement years that was easily within our reach. “Sorry!” he’d said in a way that meant “leave me alone” rather than that he was truly sorry.

  All I knew then was that the love and support I had so long felt from Mike was waning. The potential goodness of this stage of life was being sucked away by his negativity. If only I had known that Mike’s brain was doing him wrong, I could have been more patient, more empathic. At least that’s what I like to think. But I didn’t know, and the more self-absorbed and distant Mike became, the more resentful I became. Because being resentful was not something I commonly experienced, I even resented becoming resentful.

  Although the balance between good times and bad times was tipping, a scattering of moments of love and lightness were still within reach. I still held hope that a change in meds would ease things, or that some change of circumstances would help, or that a therapist would ask the questions that would lead Mike to a happier state.

  Although Mike often displayed either disinterest or dissatisfaction with me, he was still a totally dedicated grampa—gentle, playful, funny. He loved little children, and he especially loved our grandchildren. I also loved them wholeheartedly, but my grandparenting style, like my personality, was less effusive and more practical than Mike’s. We were a good balance. A good team.

  When Sharon and Doug brought 4-month-old Subei home from China in 1995, we were determined to be as big a part of her life as we already were in the lives of Cindi’s two children—Ashley (5) and Kerry (3). They’d always lived within easy driving distance, and we frequently visited back and forth. Maintaining regular contact with Subei would be more of a challenge, since she lived 400 miles away. Still, we planned to see this new baby at least every six weeks. The 800-mile round trip from Altadena to Woodacre was demanding, but getting to know that amazing little Subei creature and having her get to know us would be well worth the effort. One of the main reasons we moved north in 1998 was to be close enough to Subei to be a regular part of her life, too. And although Sacramento was still 100 miles from where Subei, Sharon, and Doug lived in Woodacre, a 200-mile round trip was a whole lot easier than the 800-mile round trips we’d been making from Altadena.

  For the previous 30 years, ever since Dale and Marg had moved to Sacramento, we’d been visiting the capital city at least once or twice a year. Our longtime friends, Jeannie and Bill Ward, lived in Fair Oaks, part of the greater Sacramento area. On one of our trips north, we followed an open house sign into Promontory Point, a “village” in Gold River. We liked the house. The price was right. It was not more than 2 miles from the Wards’, 20 minutes from Sacramento and the Dodsons’, and an hour and a half from Subei, Sharon, and Doug.

  The house we’d been living in in Altadena had been built in 1935. That was the same year I’d been built and, like me, it was needing more and more maintenance. The Gold River house was much newer and had obviously been well-maintained. Modern appliances
! A roof guaranteed for the next 30 years!

  On the drive back to Southern California, Mike and I hashed and rehashed the pros and cons of such a move. How would it be to leave longtime friends? How would it be for Mike to leave music friends? How would it be for me to leave my longtime writing group? Well, it wasn’t as if we were moving to another country. When I asked Mike how he’d feel about leaving the Chorale, he said he was more than ready. He was tired of blending.

  Before we signed on the dotted line for the house in Gold River, we talked with Cindi about the possibility that she and her kids might also make a move. We could help if she was willing. She was more than ready for a change and so jumped at the chance. Within two months of our move to Gold River, she, Ashley and Kerry had moved into a duplex just a few miles from our place. Still in close proximity to the first two grandkids, not close, but at least closer, to Subei.

  In 2002, we’d gone to China with Sharon, Doug, and Subei, where they completed adoption arrangements for Lena, then 10 months old—another thrilling addition to the grandkid population.

  On April 18, 2006, Mika Genevieve Reynolds, Matt and Leesa’s daughter, was born at Cedars-Sinai Medical Center in Los Angeles. Sometime around the 14th, when it appeared that Leesa was in the beginning stages of labor, we made the trip south. It turned out to be one of those start and stop labors that are so frustrating, especially to the mother. Maybe the baby, too. Mika has not yet revealed her version of the event.

  By the morning of the 17th, it seemed that birth was imminent. Then it wasn’t. Then it was. Then it wasn’t. Finally, when monitors showed the baby was experiencing some distress, a quick decision was made for a cesarean.

  As I write this, a series of images come to mind—Leesa and Matt walking the halls of Cedars-Sinai, hoping to move labor along. Leesa, uncomfortable and unwieldy, laughing as we approached, remarking about early signs of stubbornness in this baby. Matt walking beside her, growing more concerned with each slow-passing hour.