'til Death or Dementia Do Us Part

by Marilyn Reynolds

  Looking back, I see that dealing with email had already become difficult for Mike. I now doubt that he’d even read the emails or seen the pictures I’d sent. I also think he may truly not have known where I was. And he may not have known from one day to the next when I was coming home. No wonder he was distraught! But all I knew then was that I was less and less able to reach him in any meaningful way. And yet, there were still rare times that gave me hope. Times that kept me from jumping out of the soup pot. A case in point was Northminster Presbyterian’s summer choir picnic, held in the welcoming and spacious backyard of one of the choir members.

  Mike did what he had always done at the end of a choir season, whether with high school singers, church singers, or other choral groups. He gave awards and tributes to each of the singers. No one was left out, and none of it was phony. He had an uncanny knack for finding the best in each choir member and honoring that. He made the presentations with grace and gentle humor, but never humor in the slightest way at anyone’s expense. On their part, members of the choir and other church staff heaped accolades on Mike—his warmth and musicianship, his capacity for bringing out the highest quality of music they were able to produce. It was a love fest on all sides and a welcome three hours when the old Mike was on the scene.

  On that day, as on so many past days, he’d made it a point to include me in conversations, connect me with other teachers there, occasionally mention my books. When we left, I allowed myself to hope. Maybe the therapy was working after all. Maybe the meds were kicking in. Maybe. Maybe. Maybe.

  “THERE’S NOTHING WRONG WITH ME!”

  June 2008

  Our adult kids noticed that we had become easily irritated with one another, but attributed it to a change in our relationship. I did, too, at first. Something was wrong between us that I couldn’t understand or fix, and after 40 years together I was seriously considering separation if not divorce. But I’d also begun to think that maybe there was more to Mike’s changes than trouble in our relationship could explain.

  At first when I would express my concerns to friends, they might remind me of Mike’s “artist’s personality,” or even scoff, saying he was the same good-time Mike they’d always known. Closest family and friends, though, were beginning to note some puzzling observations of their own. Dale remarked that when he and another good friend, Dave, met for their regular monthly lunches, Mike no longer took much of an interest in what either he or Dave was saying. However, he was still quite interested in what he had to say, at times getting stuck on one subject to the exclusion of all else.

  On a weekend visit, Sharon mentioned that it was painful watching Mike try to make pie dough. One of his areas of expertise had been pies, always making a pecan pie and a pumpkin pie, both from scratch, for our Thanksgiving dinners. Then one day he got the pie dough wrong. That can happen to anyone. Even Julia Child made mistakes in the kitchen. But it was notable.

  Other ominous signs were emerging. Mike had always kept our social calendar. We checked dates with one another, but he was the busiest, performing as a singer, or organizing and conducting concerts, so the master calendar task fell to him. Then gradually, without at first even being fully conscious of the change, I was more and more checking dates. Then I noticed that people who had arranged a date with Mike might also email me to confirm that date. Changes in Mike began to be a major topic of family conversation. What was going on?

  In June we joined family and friends in Woodacre for Sharon’s 50th birthday party. Although she was not Mike’s daughter from birth, he loved her as if she were. And she, at the age of 9, had finally gotten the kind of dad she’d always wanted.

  Shortly after we married in 1967, Mike adopted Sharon and Cindi, happily and wholeheartedly becoming their father. Two years later, when Sharon was 10½ and Cindi had just turned 9, our son, Matt, was born. We all doted on him, to the point of arguing over who got to give him his evening bath. We were a family of five, not counting pets.

  At the Woodacre party, Mike raised his glass to toast Sharon’s 50th birthday. He talked of his respect for her and for her dedication to education. He spoke of her work at Sonoma State College, and of her great achievement in becoming a Doctor of Chiropractic. And then he took a turn, saying that, of course, he hadn’t been at her high school graduation because he was still living in Tampa at the time.

  In truth, he’d not lived in Tampa since he’d left home for college in 1958.

  I laughed and said, “We were all living together in Altadena then.”

  He turned to me, angry, and said, “No, I wasn’t! I was in Tampa when Sharon graduated from high school!”

  For the people who didn’t know our history, who were most of the people at the party, either version sounded credible. But the 10 or so people who did know our history stood looking wide-eyed and puzzled. Though in truth Mike never drank to excess, Jeannie made a joke of taking Mike’s wine glass from him.

  “No more for you,” she said.

  The tension eased, someone else made a toast, and the party continued.

  Later, when only family was left and Mike had gone to bed, several of us sat outside on the deck, talking about Mike’s time gaffe, and also citing other puzzling incidents we’d noticed over the past year or so. It was no longer “things aren’t right between Mom and Dad,” it was “what’s going on with Mike/Dad?”

  Sharon, the holistic medicine chiropractor, said that if it were Doug, she would get him off of all drugs. Marg, an RN, thought that might not make a big difference, though she said sometimes the immediate cessation could bring improvement for a short period of time, then the difficulties that were being treated by meds would often return with more intensity. I was having a hard enough time dealing with Mike. To take it upon myself to start experimenting with his meds seemed risky to me.

  When we awakened the morning after Sharon’s party, I said, “You don’t really think you were in Tampa when Sharon graduated from high school, do you?”

  “I was in Tampa,” Mike insisted.

  I tried to walk him back through the time of our marriage, Sharon and Cindi’s participation in his children’s church choir, his taking Sharon to piano lessons when she was in the ninth grade, but he would have none of it.

  “I don’t like it when you contradict me!” he said.

  “Then stop making such ridiculous statements!”

  On the way home I told Mike how concerned I was about him. I cited missed appointments and other time gaffes. I urged him to see our doctor. He resisted.

  “There’s nothing wrong with me!” he said, then closed his eyes and went to sleep.

  June 2013

  Dear Mike,

  I’m sitting at the big glass table in Jerry and Jackie’s* condominium at Madeira Beach. How strange it is to be in Florida without you—to wake in the mornings, in the bed we shared on past trips and watch, alone, the giant pelicans fly close past the eighth-story balcony. Last night I slept with the drapes drawn and the sliders open. I don’t think any of the Florida family ever do that, but how we loved being lulled to sleep by the gentle rhythm of the gulf waves. I continue the now lonely tradition.

  Beth** stayed over last night. We had wine and cheese on the balcony and talked until we could hardly keep our eyes open. Before the rest of the Baptists return later in the week, we’ll dispose of the evidence of our sins.

  Much of the talk was of you, Mike. You hold such a warm, favorite-uncle place in Beth’s heart. When you and I were down here in 2009, just after you’d been diagnosed with frontotemporal dementia, Beth was frantic to find a treatment, or something to stop the progression. She followed the path the rest of us, Doug, Sharon, Matt, Dale, Marg, and I had followed earlier on. Sadly, her search was as futile as ours had been. She now, like so many other close friends and family, has become numbed to the reality that the essence of you is gone from us, and it’s not coming back. You are sorely missed. Not a day, not an hour, goes by that I don’t think of you
, and even when the frequency of such thoughts dwindles, I know it: I will never fully stop missing you.

  Joan Kaywell was the impetus for this Florida visit. A few years back she asked that I donate my “papers” to the Ted Hipple Memorial Special Collection at the University of South Florida. I told her everything was in total disarray, and I wouldn’t know where to start. “Dump it all in a box and mail it to us. Let the librarians sort through it,” she said. But as much as I wanted to continue the task of clearing things out, finding the boxes of writing related papers in Joe and Kathy’s barn, and in my garage, and repacking them for mailing, was not high on my list of priorities.

  Because Morning Glory Press no longer sends me to English teachers’ conferences, Joan and I haven’t seen much of each other these past few years, but we reconnected when she emailed, asking for a signed hardcover copy of Too Soon for Jeff for the collection. I sent one off. She called to thank me. In the course of our conversation we allowed as how we’d been missing each other. She invited me back for a visit, suggesting I bring a suitcase full of my papers. I confessed that my present travel budget would get me as far as south Sacramento. Within an hour, she and Frank called and said they wanted to bring me back using their rewards miles. I was surprised and touched by their generosity and accepted their offer without hesitation.

  The old me, the me you knew back when we were solvent, would have been loathe to accept such a gift—concerned about putting someone out, or exploiting a friendship, or even about not wanting to be left with a sense of obligation. But back when I was most in need, in the midst of caring for you, and later during those months without a home base, and living with the loss of so much that had been ours together, I learned to welcome the support of others with gratitude.

  I landed in Tampa last Tuesday a little after 1 o’clock in the morning, the plane having been delayed for hours in Dallas/Fort Worth. Joan was waiting for me at baggage claim, all smiles in spite of the late hour. I easily grabbed the red suitcase from the carousel—the suitcase that had gone with us to England, Akumal, and Italy, plenty of other less exotic travels. Then with all the strength I could muster, I dragged your suitcase off. It was crammed with books, letters and manuscripts, and barely squeezed under the maximum weight allowance when it was checked in Sacramento.

  When we got back to their house, Frank was waiting with an opened bottle of wine and an offer of snacks. I’d already eaten during the long layover, but as you know, I’m not one to turn down an offer of wine. We stayed up until after 3 o’clock in the morning. Poor Joan had to work the next day, though she didn’t have to go in until 11 or so. Still, a short night for her, but we had much to get caught up with.

  As is so often true, especially with people I’ve not seen for a while, we spoke of you at length, the tragedy of your loss of cognition, the randomness of life. Joan and Frank have a list of people for whom they pray every morning, and we are both included on that list. Jerry and Jackie, too, pray for us every day. Although such prayers are not my own practice, I appreciate the kindness of their daily remembrances.

  Now 5:30 in the evening, after a sunny, clear day, the sky turns grey and within moments there is the boom of thunder. Soon a flash of lightning, more thunder, and I wonder if we’re going to get one of those electrical storms I’ve learned to expect while in Florida. Oh, yay! Another bright flash of lightning and the crack of thunder within a millisecond!

  Where was I? Joan and Frank. They are very happy together, and hospitable. Who could have predicted? Frank sometimes refers to Joan as his lesbian wife. For one who had never been in a sexual relationship with a man until Frank, now in her mid-50s, she’s apparently made an easy transition. While Joan dragged herself off to work and Frank did what he does around the house, I had a long soak in their whirlpool—just what I needed after spending much of yesterday crammed into totally filled airplanes with seats that could comfortably hold most 7-year-olds.

  Thursday we hauled the suitcase of papers to the University of South Florida Education building where the Hipple Collection is housed. They are mainly interested in anything pertaining to YA fiction, so after they have a chance to go through it all, the adult books and manuscripts will be sent back to me. The truth is that although talking about my “papers” seems overblown, I feel honored to have my work included in the collection.

  In the afternoon, Beth picked me up at USF and took me to Jerry and Jackie’s. That evening the whole Tampa family came over for dinner—Larry, Laura and Ryan, Beth, Paul, Lindsay and Laura. Maggie was away at summer camp but will be back tomorrow. David will also be in town for a few days, so by the end of the visit I will have seen all of Jerry and Jackie’s kids and grandkids except for Laura and Larry’s son, Stephen, who is in Geneva on an internship.

  For dinner, Jerry brought in an abundance of Cuban sandwiches, yellow rice and beans—how you would have loved that.

  As I prepared for this trip, memories of our first trip to Florida to visit your family kept rising to the surface. It was 1967. You, me, Sharon and Cindi—our “honeymoon.” Thank you for being a father to those two little girls—now both in their 50s. Yikes!

  I’m on my way to the rocker on the balcony—a little wine and cheese while I watch the sunset. Not nearly the same without you, but the sunset is still worth watching.

  Thinking of you morning and night.

  Marilyn

  *Mike’s brother and sister-in-law

  ** Jerry and Jackie’s daughter, Mike’s niece

  AN ILLUSION OF NORMALITY

  July through December 2008

  In spite of growing concerns and attempts to make sense of what was happening with Mike, there remained a semblance of normality in our daily lives. We were both thrilled with the election of Barack Obama, feeling for the first time since our country’s invasion of Iraq that there was a possibility we might have the patient leadership necessary to work more through diplomacy than through war. We were together in our hope that our new president would be someone who could deal with complexity rather than offering simple answers.

  Mike continued to be the jovial grandpa, taking the kids to our community pool and swimming with them, then providing sugary snacks of the sort they didn’t often get at home.

  Dinners and movies with friends, overnight visits from SoCal pals, a few days with family at Stinson Beach, breakfasts at the Gold Miner, the trappings of our lives were in place.

  In early July, Mike flew to Denver where he met Matt, who was on his way from Pittsburg to Washington state, driving a U-Haul full of his, Leesa’s and Mika’s accumulated possessions. After having completed his Ph.D. three years earlier, Matt had been employed from year to year in positions that were prestigious, but not ongoing. Now he was starting a tenure-track position at Whitman College, a small liberal arts college in Walla Walla, Washington. It was exciting and a relief for him to be launched on a career path in a position that would be steady, challenging and meaningful. But the cross-country move was a task of mammoth proportions, and Mike was eager to help.

  The two of them, Mike and Matt, shared the driving from Denver on. Leesa and 2-year-old Mika met them in Walla Walla the day after they’d arrived. Mike stayed on a few more days to help them get settled. He came home happy about his time with Matt, enthused about the town of Walla Walla, the beauty of the Whitman College campus, the house “the kids” had moved into, and, above all, the brilliance and beauty of little Mika.

  Although Matt was appreciative of Mike’s help, his take on their time together was not quite so glowing. One morning shortly after Mike returned home, Matt sent a gentle, loving email, outlining some of his observations and concerns:

  July 11, 2008

  Dear Dad,

  Now that we’ve arrived and settled down a bit, I wanted to thank you so much for joining me on the final leg of a tough trip…. I was anticipating a relaxing time in Denver and a nice, easy drive the rest of the way to Sacramento. As it panned out, I felt too stre
ssed and distracted to enjoy much of the trip, and I’m sorry if I wasn’t very good company. I was hoping for something more along the lines of our time in LA six years ago (six!!) when you helped me find an apartment. It has meant so much to have your help and encouragement, to feel your excitement and enthusiasm during these major life-changing markers. Your love, friendship and unconditional support are precious to me, and I am continually grateful for who you are and the father you have been to me.

  We talked last week and during the trip about how you’re feeling these days. You said to me in the car that you were willing to look at anything about yourself—another trait that I know to be true. Your capacity for self-reflection is something else that is very important to me, something that I’ve learned from and tried to emulate in my own life. Well … now the tough part. As I mentioned, I was concerned because you seem to be repeating yourself and losing your train of thought more frequently. You said that Mom had raised the same issue with you. There were a few things I noticed in particular that may be minor but are also uncharacteristic of how I’ve known you to act. You seemed to get disoriented in the hotel lobby whenever we stepped out of the elevator. In general, you seem more easily distracted. And, not to harp on this, but it was difficult to follow your speech at Sharon’s party—a kind of tic or slip I’ve noticed on other occasions as well. To describe the phenomenon more specifically, it’s almost as if you’re inserting non-sequiturs into a conversation. For those who know you it’s fairly simple to follow, but there have been times I’ve noticed slightly confused looks on the faces of those less familiar with your history.