When Mike returned home after that lunch, he’d stood at my office door. “They let me go,” he said, his tone implying disbelief.
“Tell me about it.”
“I guess they found someone they liked better.”
“Is that what they said?”
“They let me go,” Mike repeated, then went upstairs to bed.
Later, when he told others that he was no longer leading Chanteuses, he always said, “They like someone else better.”
The following month, a few weeks after the church choir had sung their last service of the season, the minister called and asked if he and the nurse might meet with the two of us in our home.
“They want us to join the church,” Mike predicted. “I’m not going to join the church.”
I knew they were coming to ask that Mike take a “medical leave.” I told him I thought it had to do more with things we’d talked about at our earlier meeting, things related to choir.
“I’m not joining the church,” he said.
The minister and nurse arrived at 1 in the afternoon. We offered coffee, or tea, and cookies. We sat in the living room, Mike and I on the martini couch, the nurse and the minister each sat in one of the burnt orange barrel chairs. Then started the chit-chat. How lovely our house was, so nicely decorated, how long had we lived there, did we like it, how cute Sunny was, how old was she. I wanted to scream, “Just get the fuck on with it!” Instead I sat with my legs crossed, returning chit-chat with a frozen smile, while Mike threw in details of his baptism.
Finally, after much hemming and hawing, the minister said the choir had met and they all felt it would be best if Mike took a medical leave. They would love to have him back if and when his medical issues were resolved and he regained the competence needed to continue as choral conductor. They prayed with us. The nurse gave Mike a prayer shawl she had knitted for him, and they left. They’d been there for two hours that had seemed like two years. They were both very kind and sincere people, strong in their faith, and I could hardly wait to say goodbye.
Mike’s puzzled response was, “I thought they liked me.”
January 2011
Dear Mike,
I’m sorry. I wish I’d known early on that FTD was to blame for your lessened love—that it wasn’t your fault. But by early 2006, your times of distance were coming more often and lasting longer. It was hurtful and maddening when you would walk out of the room while I was talking to you, or when you no longer bothered to greet me when we met at the end of the day. One scene still lingers.
The four of us, you, Jeannie, Bill and I, were meeting for dinner at 6 at Il Forno Classico. You had been at a choir related meeting at UUSS, and I had been sequestered in my office at home, working on yet one more draft of No More Sad Goodbyes. You were already seated when I arrived. You stepped out so I could slide into the booth beside you.
“How’s your afternoon gone?” I asked.
“Same old thing,” you said.
Your face had that tight, grey, sad look about it that let me know you weren’t interested in conversation. I tried anyway. I mentioned a phone call with Sharon and talk of a possible visit from them. I told you I thought I was over the hump with Chapter Seven. When you didn’t respond, I turned my attention to the menu.
We sat in silence until Jeannie and Bill came through the door. You stood to greet them, giving each a quick hug, your face bright and warm.
I don’t remember the conversation. What I do remember is how animated you’d become with them, and how disengaged you’d been with me. Later, at home, I’d told you I wanted some of what you gave others.
“What do you mean?” you asked.
“I want some two-way conversation. I want your warmth and good cheer.”
“You’re my wife. I don’t have to pretend with you,” you said.
“Really?” I asked, but you were already out of the room.
I nursed my hurt, already losing the sense of your love that had so long sustained me.
Now, hanging on the wall to the left of my desk in the room you’ve never seen, is the colorfully stylized ceramic plaque you gave me years ago. “Save the Last Dance for Me,” it says. Over the desk, high on the wall, is the sign you gave me one Valentine’s Day: “Well-Behaved Women Rarely Make History.” To my right is the framed art nouveau-style poster touting a production of Noel Coward’s “Hay Fever.” Noel Coward. No one does Coward’s “Mad Dogs & Englishmen” as well as you did—perfect comic timing. Reminders of you are scattered about. I don’t know if that makes things easier or harder. Either way I’m missing you, missing us.
My love to you,
Marilyn
DIAGNOSIS
2009
In early June 2009, Mike and I met with Dr. Lee, a highly respected UC Davis neurologist. I had requested that Mike’s medical records be forwarded, including the brain MRI and the neuropsychologist’s report. As had become his pattern, Mike balked at “one more wild goose chase,” but, with me chauffeuring, went when the time came.
Dr. Lee was thorough and honest, with a gentle manner. He put the MRI up on a screen and said he disagreed with the earlier interpretation of those results. There was significantly more damage than could be accounted for by “mild, age-related changes.” He pointed to an area that showed signs of atrophy. I’m sure his explanation was clear and easily understandable, but I remember very little that he said beyond “significantly more damage.”
Dr. Lee watched closely as Mike walked from one end of the room to the other. He did the usual physical exam—ears, eyes, nose, heart, lungs, reflexes. Then he proceeded with a series of questions and tasks, some of which our regular doctor had done with Mike, the usual count backwards by sevens, name the president, state the date, and some that were new.
Dr. Lee handed Mike an article from Good Housekeeping that told the story of two women, Emma and Martha, who had been close childhood friends in London, but had been sent to different regions of the English countryside during the blitz and had never reconnected. Then, more than 50 years later, there was a back page story in “The Guardian,” complete with a picture, about Emma who, through a string of coincidences, had found a long lost locket that had belonged to her old friend. With the help of the Internet, she managed to get in touch with Martha. Though neither of them lived in London, they met at a hotel in that city and spent the weekend renewing their friendship. There were details about their families, careers, trials and successes.
Mike’s confusion with dates and times was no surprise to me, but I was surprised by his response to the article. He read it through, out loud, perfectly. Then Dr. Lee asked Mike to tell him about what he’d just read. Mike said it was about a locket that had been lost for a long time and then it was found.
“What were the women’s names?”
“They found the locket.”
“Where did they meet when they got together again?”
“It was an emerald.”
“Do you know where the women lived as children?”
“It was on a gold chain.” And so on.
Dr. Lee said he couldn’t be sure what was going on with Mike. He doubted it was Alzheimer’s. His guess was that it was some form of frontotemporal dementia. That was the first I’d ever heard the term. I wrote it down so I’d be sure to remember it. Dr. Lee recommended a brain PET scan, saying that because it measures brain activity, it would provide different information than the static picture of the MRI. Although it wouldn’t offer a positive diagnosis of frontotemporal dementia, it would enable him to rule out Alzheimer’s. Mike said he didn’t want any more tests. There was nothing wrong with his brain. Dr. Lee very gently told Mike that something was going on that made it difficult for him to process information. He advised that we do everything possible to figure out what the source of his difficulties was, so that treatment might be possible.
“No more tests,” Mike said. “There’s nothing wrong with my brain!”
Matt timed his July visit from Walla Walla so that he could go with us to our post-PET scan consultation with Dr. Lee. The three of us sat in a small, windowless examining room, facing the illuminated PET scan film clipped to a backlit screen. Dr. Lee said his first impression had been verified. There was no evidence of Alzheimer’s. Everything pointed to early to mid-stage frontotemporal dementia (FTD). He explained that FTD affects the part of the brain that controls executive functioning—processes that have to do with self-management, self-control, planning, reasoning, judgment, inhibition, and more. My reasoning brain was thinking that explained a lot. My feeling self was rolling up into a tiny protective ball.
Dr. Lee informed us that the condition would get steadily worse, though it was impossible to say at what rate. There was no known treatment, but Aricept, a drug often used with Alzheimer’s patients, sometimes appeared to slow the progression of FTD. Dr. Lee recommended that Mike get started with that.
“I’m not putting another drug into my system!” Mike shouted. “There’s nothing wrong with my brain!”
With that he rushed out the door and down the hall. Matt and I made hasty goodbyes and rushed after him. In the car on the way home, Matt was able to reassure Mike, saying we would do everything we could to help deal with all of this. He encouraged Mike to at least try Aricept. As with the brain PET scan, it was Matt’s influence that enabled us to get him started on Aricept.
Horrifying as the FTD diagnosis was, it also helped me, and others around us, to understand what was going on with Mike. Although I continued to be frustrated by Mike’s distance from me, his repetitions, misinterpretations of events, inability to follow through with any decisions we made together, and his extreme inaccuracy in telling others stories of our lives together, I now knew that none of this was Mike’s fault. In fact, “It’s not his fault. It’s not his fault” became an oft-repeated mantra of sorts.
When my patience was stretched thin by constant repetition, or by finding dirty dishes back in the cupboards before the dishwasher had been run, I would silently remind myself, “It’s not his fault. It’s not his fault. It’s not his fault, no, it’s not.”
A variation of that chant was, “He can’t help it. He can’t help it. He can’t help it, no, he can’t.”
Both of those phrases I chanted to the tune of Beethoven’s “Ode to Joy,” the same tune to which, back in 1967, I’d been escorted down the aisle by Dale, to take my place next to Mike.
As simplistic as the chanting routine sounds, it helped me kick up empathy and tamp down anger. Something that was sorely needed. The serenity prayer, yoga breaths, maintaining low expectations and watchfulness also helped me find patience. Not that I always found enough patience, but more than I would have had I not been working at it.
Having never even heard of frontotemporal dementia previous to our visits with Dr. Lee, I, along with close friends and family, began searching out and sharing whatever information we could find on that form of dementia. None of what we learned offered hope for Mike’s future, or for my future with him.
In Doug’s search for answers he found What If It’s Not Alzheimer’s and sent copies to me, Dale and Marg, and Matt and Leesa.
We read that people with FTD are sometimes “obsessed with a particular subject or event and that they will keep bringing the conversation back to this topic. Reminding the patient that they’ve already told the story many times before has no effect.”
We were already witnessing such behaviors in Mike.
I searched the Internet for more clues about the nature of FTD, wondering what Mike might possibly be experiencing, trying to garner any hints as to what the trajectory of the disease might be. Wikipedia, the Mayo Clinic, the University of California, San Francisco, Memory and Aging Center—all said the same thing. There would be gradual and steady changes in behavior, increased language dysfunction, and/or, problems with movement. The rate of decline was unpredictable.
The websites that ultimately garnered most of my attention were the Association for Frontotemporal Degeneration and the FTD Support Forum. In the months that followed Mike’s diagnosis, I checked the FTD Support Forum nearly every day, hungry to learn of how others were dealing with FTD, what symptoms they were observing in the person they cared for, how fast was the decline they were witnessing, what tactics were effective in dealing with difficult behaviors, etc., etc. Of course, no matter how often I checked the website, it didn’t tell me what I most wanted to know. What course would the disease follow? What would be the time trajectory? But even though answers to my most pressing questions were not to be had, the personal stories gave me an awareness of how others were coping and helped me feel less alone.
A month or so after our visit to Dr. Lee, I sent a group email to friends and out-of-town family who had been expressing concern for Mike, telling them of the FTD diagnosis, that there was no cure or effective treatment, and that so far we were managing. People were amazingly generous with their expressions of concern and offers of help.
Sharon and Doug talked with friends and colleagues in health professions, the orthopedic doctor who shared space in their chiropractic office, a psychologist who was a close friend of Doug’s, other doctors, nurses, caregivers. Marg used all of her nurse contacts to eke out any insights and information they might have. Dale talked with a good friend who had been caring for his parents for years and who had recently moved them into an assisted living facility. Cindi offered to move back to Sacramento from Nevada in order to help. Matt and Leesa stayed in close touch through email and phone calls, and, along with the others, asked the hard questions.
Sharon, Doug, Matt, Leesa, Dale and Marg all talked with me about the importance of being proactive. There would come a time when I was no longer able to take care of Mike. What then?
May 2013
Dear Mike,
Yesterday, Dale took me to the airport where I boarded a plane for Seattle, the first leg of the trip to Walla Walla. In Seattle, on the way to gate C2G, I was suddenly flooded with memories of our last trip together to Walla Walla. It was 2009, and although you had recently been diagnosed with FTD, you still were able to manage the basics—at least it seemed that way. But on that trip you abruptly left the table where we were eating lunch, saying you were going to the restroom. I sat at the table. Waiting. My mood shifting from mildly irritated to extremely worried. I tried your cell phone and got voice mail. I went to the gate where we were scheduled to depart for Walla Walla in about 45 minutes, thinking—hoping—you might have gone there without me. You weren’t there. I spoke with an agent, who advised that I call the police, which I did. You don’t need all of these details. Ultimately what happened was that the police located you and brought you to the gate where I was waiting. When you saw me you, called out, “I’ve been looking all over for you!” We were last on the plane, but we made it. In Walla Walla you disappeared from the bookstore, and the three of us, Matt, Leesa and I, searched the whole town for you. Eventually, I went back to the house while they continued looking. You’d been missing for nearly two hours when you came waltzing through the front door. “Where’ve you been???” you demanded.
I’m sorry. This is not what I want my focus to be. It’s just that sometimes memories of such difficult situations overcome me.
This trip was uneventful. I walked through the doors of the Walla Walla airport and there was 8-year-old Mika, right in front, a huge smile on her face.
“Gramma!” she said, throwing her arms around me, giving me a long, tight hug.
On the way to the car, Leesa told me that Mika wanted to be my host and my servant during my stay.
“Only host,” Mika said.
Back at th
eir place Mika made a potholder from a kit I’d brought with me. She chose the colors and was careful to repeat a certain pattern. She told me she’d made one of those before. It wasn’t her favorite thing to do, but she would do it for me. After dinner Mika gave a piano concert. She’s doing well with the piano, and her current teacher’s methods seem to work well with her. It’s not the standard method of teaching notes and scales, but it gets kids playing songs from the very beginning, and I think that’s particularly important for Mika.
It’s beautiful here in Walla Walla, sunny and mild, with a light breeze. I walked into town this morning, admiring the array of color in so many well-tended yards. There’s a place in front of my Sacramento duplex where Lloyd, my landlord, is going to tear out some ugly bushes to make room for new plants, so I’m getting ideas for what might best go there. It’s mostly shady, so maybe azaleas or camellias, though I might like something a little less common. You would likely go for azaleas. What fun that was, when we first moved to Promontory Point and hired Kathy, the decorator-turned-landscape designer, to help with our patios. The professionally installed water fountain, the custom-made redwood trellis on which an espalier lemon tree would climb, artful stonework walkways, a densely planted carpet of wonderfully aromatic Corsican mint, a wall of jasmine along the side fence—$8,000 worth of patio upgrades. I could use that $8,000 now, but I wouldn’t really trade it for the fun we had putting those patios together, and enjoying them on long summer evenings.
'til Death or Dementia Do Us Part Page 13
