'til Death or Dementia Do Us Part

by Marilyn Reynolds

  You’d been nominated for LA County Music Teacher of the Year. As tenor soloist at All Saints you were musically and spiritually both challenged and, mostly, fulfilled. My first published essay appeared in the Los Angeles Times in the early ’80s. Together we’d completed a three-month course at the Pritikin Center in Santa Monica that led us to a much more healthy lifestyle than we’d developed, or fallen into, in our years together. For the first time ever, your cholesterol was in a normal range. Money was not nearly as tight as it once had been. We enjoyed weekend getaways together, mini-honeymoons of sorts. During that time we probably argued over choices of paint color, or wallpaper, or how to handle Matt’s consistent refusal to honor our curfew expectations. We could always fall back on money if we were looking for an argument. You wanting to charge a new item of furniture, or a suit, or a trip, me wanting to hold off until we could pay cash. Truly, though, because we kept most of our money separate, these arguments were not rancorous. There was no rancor between us.

  So, 1985. I was tempted to start at the beginning of that Vienna journal, read it all the way through, try to ferret out the source of your shame. But why? You hadn’t wanted me to know. Did I need to know?

  My best guess is that you and our opera singer friend, Rosalie, “slept” together one or more times during your stay in Vienna. You loved each other in the way that close friends can, sharing thoughts about books, and music, and the wealth of joys and fears inherent to performing singers. Vowel placement, breath control, care of the cherished throat and vocal chords—such conversations were fascinating and precious to you and Rosalie. Just as you were not either capable or willing to talk at length about the advantages of first person vs. third person point of view in a piece of fiction, I was not up for lengthy discussions of tongue placement in maintaining open vowels. There is a particular intimacy in one’s sharing talk about something dear to them, but not so dear to most others. Maybe your platonic intimacy crossed a line?

  Enough conjecture. Your letters home during that time expressed your delight at being in Vienna, steeped in music, enjoying new musician friends. You also wrote of your extreme longing and loneliness for me. On your return from Vienna, if I’d learned what you didn’t want me to know, we might have needed a few sessions with a marriage counselor. We would not have needed a divorce lawyer.

  I was more puzzled by your need to keep a secret than by the secret itself. Was it shame? Did you not trust me?

  At one point, just before your FTD diagnosis but long after symptoms had arisen, you told me you didn’t feel safe with me. I remember we were sitting at the breakfast bar in the Promontory Point kitchen. We were each on our second cup of coffee, the newspaper spread out before us. I don’t remember any of the conversation leading up to this, but I remember very distinctly the tightness of your face and voice as you announced, “I don’t feel safe with you.”

  I was stunned! How could that be? Since the very beginning I’d loved you, unwaveringly, with all my heart. I’d loved you for who you were, considered you, us, in everything I did. How could you not feel safe with me? When I asked that question, you simply answered, “I just don’t.”

  I know now, at least I think I know now, that frontotemporal dementia had already begun messing with your emotions, your stability, your capacity for reasoning. But if it was FTD then, what was it in 1985 that caused you to feel a need to build a wall around your secret? Were there other walls?

  I picked up another journal, this one from the later ’80s. You’d written of how much you loved me, how you loved seeing me grow as a writer. How you wanted to be as supportive of my writing as I had always been of your singing.

  You’d written of everyday things, taking Matt to soccer practice at the Rose Bowl. You remembered that, on one of your father’s December visits from Florida, you’d taken him to that area around the Rose Bowl where the two of you watched all manner of people readying floats for the big day. You sometimes still missed your father. We’d been to Nancy Obrien’s for dinner and laughed ourselves silly over the stories D.D. told about tuning Frank Sinatra’s rat turd-infused Steinway.

  Reading your entry, I was so lonesome for you, for your voice, your phrases, your distinct take on things, that I wanted to devour every word you’d written in every journal you’d ever kept. But what if there were more secrets? And what if other people came across them after my death? In spite of a hunger for your words, a hunger that bordered on pain, I could not disrespect your written secrets. I could not disrespect the secrets that might fall into other hands after my death. I did what I knew you would want me to do. I destroyed your journals.

  Into a heavy-duty trash bag, I first poured a few cups of water, then dropped your journal with the recently revealed secret into the bag. All of the journals were good quality, with heavy covers, quality paper, and tightly bound pages. (You always appreciated quality.) To pull each journal apart and shred the pages was more of a task than I cared to undertake. So enough water to be absorbed by journal pages, and on top of that sour milk that had been sitting in the refrigerator since Matt and Mika returned home from last month’s visit. Then a little more water, another journal, something else rotten from the refrigerator. Obviously, I’d been needing to clean out the refrigerator for quite some time. I established a rhythm—a little more water, a journal, something rotten from the refrigerator. A little more water, a journal, something rotten from the refrigerator, etc., etc., etc. With the last journal resting underneath a sea of slimy lettuce, I half-carried, half-dragged the trash bag to the backyard. For good measure, I heaved two shovels full of dirt into the bag before pulling the ties into a tight knot. Careful to lift with my legs, I hoisted the whole mess into the city’s big, grey, plastic container and secured the lid.

  I stood staring at the receptacle of your words, feeling that now familiar sense of emptiness that comes with the everyday reminders of losses, both big and little, of your absence from the world and from me. I did what I sometimes do now, during an afternoon of sadness. I stretched out on the bed with my iPad and took up where I’d left off reading my current book, The Little Red Chairs by Edna O’Brien. But as compelling as that story was, my mind kept going back to secrets.

  I’d been so puzzled by your need to keep a secret from me, that I’d nearly forgotten secrets I’d kept from you. For what? For your own protection? To spare myself embarrassment? Many years ago, there was the nearly innocent, more than friends, relationship with a teaching colleague of mine. There’d been details from the lives of our kids that I knew about but didn’t pass on to you. I’d never lied about any of this, but I’d chosen to keep certain things to myself. Things that I knew would anger you I kept to myself. Things that I knew would hurt you I kept to myself. My guess is that the same was true for you. For most of our married life, the secrets I kept from you were few and far apart. Again, my guess is that the same was true for you.

  With the onslaught of FTD, my keeping secrets, my outright lies to you, became so prevalent that I feared the time would come when I wouldn’t know truth from fiction. There were the lies about damage to our house that forced us to live in Carmichael Oaks, the lies that that move was only temporary, the lies that I was going to meet a teacher friend to work on a project when really, I was sneaking over to our old house to continue the emptying it of the contents leftover from the basics I’d had moved to Carmichael Oaks. Thousands of everyday lies until the final, that worst lie of all. Assuring you that I’d be back to pick you up after lunch, after leaving you at the securely locked memory care facility in Cameron Park. My heart aches even now, five years later, to remember that day. To remember that lie.

  But we’d started with secrets, hadn’t we? That you’d felt it necessary to keep a secret from me was a slight surprise. Nothing more. It did not shake my understanding of who we had been in the world, or cause me to call our whole marriage into question, or destroy my sense of identity. Had you been the one left on earth after I was ashes in the ocean
, I suspect that the same would have been true for you, had you discovered a secret in one of my journals. I suspect that you would have wanted to read whatever journal you could find, longing for my words, my voice. Would you have ended up depositing my journals into a trash bag, mixing them with water and rotten food, and dumping them?

  It’s strange—these letters. These speculations. I’m having “conversations” with you that I need to have, ones I can’t have with anyone else in the world. As I write to the missing you, it’s as if you are there, somewhere, listening—a consoling illusion.

  Missing you still,

  Marilyn

  WHAT WE ALL KNEW

  December 2010

  Christmas was a repeat of Thanksgiving, only more so. Mike wanted to leave for Sharon and Doug’s days ahead of time, then about 15 minutes into the drive, Christmas Eve day, asked, “When are we coming back home?”

  After the opening of gifts that evening, probably around 8, Mike announced he was going to bed. I followed him out to the outside “shack” that had been converted into a guest room. I wanted to be sure he could find his pajamas. He took his shoes off and crawled into bed. I got his pajamas from the suitcase and suggested he put them on.

  “I want to go home,” he said.

  “No. We’re staying through Christmas. We’ll go home the day after Christmas, like we always do…. Here, you’ll be more comfortable in these,” I said, placing his pajamas at the foot of the bed.

  He put them on, crawled back in bed, asked to go home.

  I again told him we were staying through Christmas.

  “I’ll just walk home then,” he said, getting out of bed and reaching for the door.

  I moved in front of the door.

  “No, Mike. We’re spending the night.”

  “I’ll just stay in bed then!” he said, throwing back the covers. “I know how to do that!”

  He got back into bed, yanked the covers over him, and turned his back to me.

  I went back to join the rest of the family. Within minutes Mike was back in the house asking to go home. This routine continued throughout our stay, becoming even more incessant than it had at Thanksgiving. He was miserable. I was miserable. And although everyone carried on with the festivities, the contrast between Mike’s present constant state of anxiety and his joyous holiday personality of Christmases past was terrible to witness.

  When it was finally time to say our goodbyes and drive away, we all knew without a doubt that Mike had spent his last Christmas with us. The husband who had, with such energy and enthusiasm, decorated the house to the hilt and lit up the whole outside, the grampa who had carefully wrapped gifts and signed tags from Mr. Claus, or the Christmas Fairy, or Rudolph, who had bought extravagant Christmas outfits for each of the grandkids for as long as they would go along with it, the dad who chose gifts with care and collaborated with grown-up cooks on food and drinks, the brother-in-law who every Christmas made an over-the-top extravagantly fancy birthday dessert, the singer whose holiday season was frantically busy with church programs and caroling gigs—that man was gone. He was gone. He wasn’t coming back. Whether we said it or not, we all knew.

  The day after we returned from Woodacre, I called Porto Sicuro and arranged with Rachel to move Mike into their Guiding Star memory care section. While the activities director kept Mike occupied with the weekly sing-along, I rushed out to Best Buy and bought a basic TV for the private room, sheets for the extra long single bed, and a comforter. On December 29, 2011, I drove Mike the 20 miles to Cameron Park.

  It was time. It was past time.

  THIS IS MY FATHER’S WORLD

  December 29, 2010

  After my call to The Guiding Star, I contacted the senior relocation service that had helped with our move to the Carmichael Oaks apartment. I arranged to have Mike’s room set up, ready and waiting with familiar pictures and furnishings. Two days later, mid-morning, I told Mike I was taking him to a new place where he could play the piano and entertain the residents.

  “I’m not going back to that place,” he said, referring to the Citrus Heights Bridges memory care program where I’d tried to get him set up on a Tuesday/Thursday schedule.

  “This is a different place. Rachel’s there. Remember Rachel?”

  “Yes. I’m not going.”

  But he did go. He followed me to the car and got in. On the freeway he asked numerous times to be let out so he could walk home.

  Dale had earlier burned a CD for me of instrumental arrangements of hymns. We both loved the old Baptist hymns we’d grown up with, though we’d long ago rejected the accompanying theology. The wordless instrumentals were perfect, though in reality the music wasn’t wordless. The words were all lying dormant in my mind, brought to the surface by the old, familiar tunes.

  I started the CD, hoping it might have a calming effect on Mike.

  “Do you like the music?” I asked.

  “Yes,” he said. He sat quietly, seeming to listen, then breaking the spell to ask, “You’re not going to leave me there, are you?”

  He asked that many times, and many times I answered with a lie. “I’ll pick you up this afternoon,” I always said.

  I followed the experts’ advice for dealing with dementia sufferers: Keep it simple. Be reassuring. Don’t try to explain because they can’t understand. Explanations will only further confuse them. Tell the kindest story. Lies, lies, desperate lies.

  Rachel met us at the front door, quickly managing to charm Mike as she’d done at their first meeting. She spoke simply and gently, saying she could use his help. Could he help her a little? Maybe play the piano for a while and talk with residents?

  “Sure!” Mike said, answering with his old enthusiasm.

  I kissed him goodbye, told him I’d see him soon, and walked to the door. He followed along, but Rachel easily led him back toward her office.

  By the time I made it to the circular driveway that led past The Guiding Star entrance, Mike was standing close against the glass entrance doors. He watched, forlorn, as I drove away. The CD automatically started again. Of all hymns to land on it was “This is My Father’s world…” and to my listening ears/all nature sings/and round me rings the music of the spheres….

  And there he was, suddenly before me, the young Mike, in his blue choir robe, gracefully, magically, drawing music from a disparate group of children, my own among them—Sharon, 8, Cindi, 7, eyes glued to the man who was, unbeknownst to any of us, soon to become their father. The song continues, “I rest me in the thought of rocks and trees, of skies and seas/His hand the wonders wrought….”

  The nearly 40 good years with Mike overcame the past few bad years, and a torrential flood of long blocked sobs burst through. I pulled to the side of the road, weeping for all that was lost to me, and even more for all that was lost to Mike, and for those two now-grown little girls, and for the son who came later, and for the dog, and the lost house, and for wars and famines and every other damned sorrow in the world, and then back to Mike, back to those scenes of who he had been and of who he had become.

  Who knows how long I sat there? Finally the wrenching sobs subsided, and my focus shifted to the present. To tasks at hand, to what was next. I found a crumpled Starbucks napkin in the glove compartment, wiped my face and blew my nose, took five deep yoga breaths and deemed myself fit to drive.

  As I turned onto the freeway, heading back to Sacramento, dark clouds parted to reveal a growing patch of sunny blue sky. If this were a movie, or a novel, such a scene would be trite and contrived. But it was neither of those. It was my life. And, knowing there would be more darkness to come, I treasured the fleeting gift of light.

  GRIEF STOPS BY

  Me: What? Yeah, you can visit for a while. But I can’t see you very well. Come in out of the shadows … Wait. Who else is with you?

  Grief: My family. My father Death; Mother Loss; Sister Disease; Brother Injustice; Cousins Anger, Disappointment, Regret, Resen
tment …

  I only invited you.

  We stick together—me and my family.

  Well … come on in. You can come through the living room, but if this is an overnight, you’ll have to stay in the back room.

  The back room? I deserve a better place than your dusty old back room. Why can’t I stay in your living room?

  I prefer other company.

  You can’t pretend I don’t exist. You can’t ignore me. If you ignore me, there will be repercussions with the Cousins, maybe even with Sister.

  Don’t threaten me. I’m not ignoring you. I’m simply keeping you where you belong. You don’t get to be free range in my domicile. You’re only in the living room for a short conversation, because I invited you.

  What about your precious Joy? She gets to come and go as she pleases.

  I like her better. I prefer Joy to Grief.

  You can’t truly know Joy without knowing Grief.

  Maybe, but since I know both, I prefer Joy.

  I always get a bum rap.

  Not really. Plenty of people prefer you to Joy. You make them feel important. They let you be queen of their domicile. I’m not one of them.

  You have to admit that I have influence, though. Like the other evening at Kathy’s party, or when you wake up in the middle of the night and find me in bed with you….

  Yes, there are times when you loom large. Kathy’s party, celebrating her 70 years of life, telling stories of our decades of friendship and shared work. Suddenly you shoved your way in, forcing me to feel the emptiness that is Mike’s absence. The pure tenor voice, absent from the “Happy Birthday,” song. The silly, animated version of Mike’s famous party hokey-pokey, absent. In the midst of warmth and laughter, you and emptiness were, momentarily, my only reality.