Sharon calls. They’ll take the table. We’ll gather around it on the coming Christmas Day, as will the spirits of so many others who’ve gathered around it over the decades. Altadena, Gold River, Woodacre. It doesn’t matter. It will bring its essence with it wherever it goes.
May 2012
Dear Mike,
Yesterday evening, after Leesa and Mika went into the bedroom for their before-sleep reading time, Matt and I sat in their Walla Walla living room and talked about where and how to do your memorial. We didn’t talk about when. When still seems a long way off, though we’re both aware of a certain fragility that comes with the weight loss you’ve been experiencing.
We want to do justice to your whole life, your whole self, to remember so much more of you than now exists in your shell. I’ve arranged with UCSF for a brain autopsy. I believe that would have been your choice if we’d had this conversation 20 years ago. Such autopsies are so important for FTD research. Still, when it came time for me to sign on the dotted line, I could barely put pen to paper.
Sometimes it seems as if I’m watching this all from a distance, as if it’s happening to some other couple. Not to us. Would that it were so. The “not to us” part. I would never wish this on any other couple in the world. Why am I even talking about wishes? The rain falls on everyone, and likewise shines the sun. Wishes have nothing to do with it. Hmmm. Did I just get Biblical?
Leesa graduates with a master’s in social work next month. They’ve missed her work income for that past two-plus years, and they’re now saddled with even more student loan debt, but I think they’ll soon see some light at the end of the proverbial tunnel. Leesa already has a few part-time social work jobs. Now that she’s graduated, there will be more coming her way. Matt and Leesa seem to have come through a stormy period with a new dedication to working things through. I’m relieved to see them being more affectionate and playful than I’ve seen in some time. You would be happy to see what good parents they both are.
Hoping to do right by you,
Marilyn
THE KINDEST LIE
May 2010
On the advice of “ours-for-life” Rachel, we worked on the kindest lie to tell Mike when he arrived at Carmichael Oaks after his Florida trip. In one of my many phone conversations with Mike, about halfway into his trip, I told him we’d received a notice from the homeowners association demanding that we repair our dry rot-infested fence or face a fine. Every day that I talked with Mike I added a few details. The fence guys found evidence of termites. The termite company found extensive infestation. The house needed to be tented. The next conversation would tell of evidence of toxic mold. I didn’t know how much “stuck,” but he did have some idea that not all was well with our house.
Our plan on Mike’s return was that Matt would pick him up at the San Francisco airport. I would be at Carmichael Oaks waiting to greet them.
Although logic and reasoning was gone, Mike’s intuitive side was more intact. One of his strengths had always been his capacity to connect with another’s emotional distress. We hoped that if he thought I was in great emotional distress over the state of the house, he’d be his old, reassuring self. Here’s the story Matt told when he met Mike at the airport:
He’d flown down to help me. He, Sharon, Doug, Cindi, Dale, Marg, etc., had to practically drag me out of the house. The house wasn’t livable with all of the work they were doing on it. It was actually toxic. The only people who could go inside had to wear those haz-mat suits. But I was refusing to leave. He’d never seen me like that before. They’d had an emergency session with Dr. C and, with his help and the help of heavy-duty medication, they managed to get me settled into a nice residential hotel. They were lucky to find a place with a vacancy. Dr. C encouraged them to bring as much of our familiar furniture and things to the hotel as possible, so it would feel more like home to me. They got everything else into storage so it wouldn’t be damaged by the chemicals and construction. I was doing a little better today. Matt thought I was really relieved that Mike was coming home, but he was worried about me. They had to do everything they could to reassure me. It would be months before the house would be livable again and I simply didn’t seem to understand that.
WHEW!! During all of this someone asked, “What would happen if you just sat Mike down and explained to him what was happening, and that you had to move?”
I’m sure that would have been my question, too, if the tables had been turned. But after two-plus years of trying to explain things to Mike, and make sense of things, and talk through things, and do all of the things that once worked, I knew there was no way to deal truthfully with Mike in that situation.
The necessity of lies was, for me, one of the more difficult aspects of the whole mess. Although I enjoyed writing fiction, I’d always placed a high value on honesty in my real life. Now I found I was becoming more and more at ease lying to Mike. Would lying turn into a convenience that carried over to other aspects of my life? That was frightening to me.
The advice to tell the kindest lie was well taken, but looking back on that time I wonder: What were we thinking in conjuring that convoluted story? I suppose Rachel, or Felecia, the memory care director at Carmichael Oaks, had already told us at one point to keep things simple. The fewer details the better since the more details included the more confusing things become for someone with dementia. By that time, I’d already read numerous books about dementia—memoir, fiction, anything I could get my hands on. I’m pretty sure there was a unanimous opinion about keeping things simple. As much as I understood that in theory, it took a while for me to put the “keep it simple” tactic into practice. Even so, other than the effort it took for Matt to explain all of those details to Mike, there was no harm done. Matt’s take on it was that Mike only listened to the first sentence anyway.
Matt tried to engage Mike in conversation on the drive back. How was Florida? Fine. Who did you see while you were there? Everyone. How’s Uncle Jerry doing? Fine. Mike soon went to sleep and stayed asleep until they pulled up in front of Carmichael Oaks. I’d been watching for them from the “living room” and rushed out to greet Mike as he got out of the car. He gave me a quick hug, then stood under the portico, taking in the entrance to the facility. Looking confused and worried he asked, “Do we live here now?”
“Just for a while,” I said.
Matt got Mike’s bag from the car and the three of us took the elevator to the third floor. Inside the apartment I pointed to his treasured paintings, showed him the bedroom, complete with all of the bedroom furniture from Promontory Point. The closet space, the two bathrooms, the balcony with two chairs, plants, and a fountain. When I asked if he didn’t think we could live here for a little while, he nodded, said he was tired, and went to bed.
We couldn’t believe how easy that had been! All of our fretting, and worrying, and story conjuring! Matt and I were not the only ones who’d been so concerned. Dale and Marg were eager to hear how things went, as were Sharon and Doug, Cindi, Jeannie and Bill, and a host of others. After Matt and I sharing our relief to the point of near-giddiness, he went back to Dale and Marg’s where he was staying. From there he sent a group email, reporting the easy re-entry. The next morning Dale, Marg, Matt, and Sharon met us for breakfast downstairs in the dining room. In terms of Mike’s responses to family and close friends, it still remained the more the merrier, and we wanted to keep Mike as merrier as possible.
Of course, I knew this easy entry might have been the calm before the storm, but I was quite happy with the calm, however long it might last.
GOODBYE, GOLD RIVER
May 2010
Two nights before Mike’s return from Florida, I spent the night at Carmichael Oaks. There was still much to be done at the house, but the C.O. apartment was put together. Two accent walls were painted, the one in the living room was a “burnt caramel,” in the bedroom “sage green.” All of the boxes that contained things to be moved to the apartment had been
unpacked and recycled. Pictures and mirrors were in place, fresh flowers were on the table that divided the kitchen from the living room. Clothes were hanging in the closets, towels and sheets in the little linen cabinet. The bed was made. It did all have a familiar look. Anyone who had been in our house more than once or twice could have come in here and thought, “Mike and Marilyn live here.”
Two chairs, a little table, and a few plants were on the balcony just outside the living room sliders. The balcony overlooked a broad driveway that divided Carmichael Oaks from a large acute care facility. It wasn’t a pretty view, but if one looked in the right direction, from the right angle, there were oak trees and sky to be seen.
Mike’s desk fit easily opposite our bed, as did the small rolling file cabinet from my downstairs office. All but the most current and immediately necessary files would go to storage. That hadn’t been done yet.
A little before 10, I took Sunny for a walk through the courtyard and down to a grassy area outside the assisted living section. She sniffed around with great interest—nothing like new scents to fascinate a dog. She found the spot that would become her toilet. I cleaned up after her and dropped her package in a nearby container. Back at the apartment we settled in for the night, she in her familiar bed beside the desk, and I in my familiar bed on the opposite side of the room.
I slept surprisingly well that first night. It probably helped that I’d been working nonstop from early in the morning until late at night since the morning I’d seen Mike off to Florida. I woke early, walked Sunny, and tried out the shower in what would become “my” bathroom. There were two bathrooms in this apartment, a luxury neither of the more upscale places we visited could offer.
Breakfast at 7. I was greeted cheerfully by Ronnie who asked my name, told me of breakfast options (plenty) and took my order. I had grapefruit, one poached egg, bacon, toast and coffee. It was all good. Halfway through breakfast Janice came into the dining room, greeting people by name. She brought a cup of coffee to my table, asked how things were going and if there was anything I needed. The dining room quickly filled up. There was lots of chatter. Most of the people looked to be 10 to 20 years older than I. That was okay. I’ve always liked old people.
After breakfast I went back to the house and continued packing. No one room was completely empty yet. The guest room was totally intact. Matt and Leesa would be taking the queen-sized bed and the linens and pillows that went with it. The chest that was Sharon and Doug’s to begin with would go back to them. The clothes it contained— extra bathing suits for the grandkids from years past, assorted winter things, extra pajamas—all could go to Goodwill. I boxed it up and labeled it.
Friends arrived to pack more dishes and crystal. Those boxes would go to the barn. In the afternoon Felicia, a local musician friend with whom Mike had happily worked for many years, dropped by with her adult son, Barry. When she’d told me that Barry had sold rocks from his garden on Craigslist, I asked if I could hire him to sell some of my things. I didn’t know the first thing about maneuvering such sales, but I had a number of things that I thought might be sold in that way. Felicia arranged for Barry to come over the next day to check things out.
As we went from room to room, Barry jotted down notes and I identified what I wanted to sell. I’d already talked with each of the kids about what they wanted. The wrought iron and glass coffee table plus patio furniture to Cindi. The guest room bed, martini couch, Mike’s black leather chair, washer dryer and assorted smaller pieces to Matt and Leesa. A few decorative items and the dining room set to Sharon and Doug. Occasional chairs, bar stools, side tables, a few lamps, more patio furniture, vases, pots, a file cabinet, a rice cooker, large pots and pans that I expected never to use again, a coffeemaker with bells and whistles, footstools, a printer, hoses, garden tools, so much of our lives—all to Craigslist.
Barry arranged a time to come back with his van. He took everything to his place and sold it from there. I offered him a 50/50 cut. He said he didn’t want anything. We haggled. I was so overwhelmed with the moving process and all that went with it, I knew that left to my own devices I’d probably end up giving it all away. Anything he brought in was more than I’d have had without his help. We agreed to disagree for a while and work things out later. He loaded his van.
That night, before Sunny and I went back to the apartment, I took a nearly full bottle of Chardonnay and a blue plastic cup upstairs to our almost empty bedroom. The little portable stereo was still there, sitting on the floor, as were a few CDs. I got cushions from the sofa bed in the bedroom we’d called Mike’s office and piled them on the floor. I opened the shutters on the window that looked out over Promontory Point. I started Emmylou Harris’s “Stumble Into Grace” album, poured wine into the cup, sat on the cushions and stared out the window at the familiar scene. The tops of redwood trees, the moon bright and full—a clear, crisp night, like so many other clear, crisp nights had been. One of the things we’d both loved about this upstairs bedroom was that even with the windows wide open and uncovered, we were in a private space, breathing in the scent of pine that filtered in through the open windows.
I refilled the plastic cup and scooted down so I was resting my back against the cushions. I let my mind wander to happier times in this room, the window open, a mild breeze freshening the air, us curled together under a light sheet, laughing maybe. Loving maybe. Loss washed through me, hollowed my inner being. The plaintive voice of Emmylou sang that even though her lover was standing on the other side of the river, he could still see her face. She will be standing there forever. The verse ends with the plaintive question, “Why won’t you look at me?
Here I am. Here I am.”
We’d bought this album shortly after it was released, back when Mike was fully Mike. For a while it had been one of our go-to albums when we were in the car. At the time we simply enjoyed the music and appreciated the poetry of the lyrics. Now, though, I was struck by how strongly I identified with the person who was standing by the river, her love on the other side. Why wouldn’t he look at her?
It seemed Mike had been on the other side of the river for such a long, long time. It’d been such a long, long time since he’d looked at me, since he’d truly seen my face, since he’d heard my plea. I lay there sobbing, catching my breath and sobbing. I turned my face into the cushions and surrendered to the force of grief. I felt Sunny inching close to me, until she was lying next to my stretched out legs, her head resting against my thigh.
The Mike with whom I bought “Stumble Into Grace,” with whom I listened to it in the car, the Mike who did once see me, and hear me, and love me, was gone. I knew that. I’d known that for a long time, but maybe the certainty of that knowledge came in stages—at first knowing, but not believing. Then knowing, but still hoping. Then knowing, but not feeling. Finally, knowing, believing, feeling, hopeless.
I reached for Sunny and rubbed behind her ears. She scooted closer. The wine. Emmylou. I knew I was becoming maudlin. I didn’t give a shit. I’d not cried, really full-out cried, for months. I poured the rest of the wine and let the next song wash over me, the one that imagines her love as her “dear companion.” Imagines that “I’m the one you cling to/And your voice still calls my name …”
I cried over that, too.
Sunny still at my side, I lay propped against the cushions, half-listening to the rest of the album, half-seeing what was beyond the window, half-wondering what would become of us.
After a while in silence, I rose and walked to the double sinks and vanity that formed the short leg of an L off what was our bedroom. Only what we would need in the apartment had been taken from these cabinets. I grabbed an empty box and pulled out a wide variety of unopened travel shampoos, conditioners, lotions. I added an unopened package of four rolls of toilet paper and several plastic bags collected from trips to the dentist. Those all contained one toothbrush, one container of floss, and one small tube of toothpaste. All but one of those bags went into t
he packing box. I took a new toothbrush and tube of toothpaste from the remaining bag and brushed the aftertaste of wine from my mouth. I taped the box closed, labeled it “Loaves and Fishes,” then, with Sunny following close behind, I carried the box, and the plastic cup, and empty wine bottle downstairs.
It was over. So much was over.
November 21, 2014
Dear Mike,
The mornings are cold now, 51 degrees when I got up—not cold to someone in Rochester, NY, I’m sure, but to an old Southern California girl, it feels like Siberia. These days I’m more cold-blooded than ever. This morning I woke up around 6 and lay in bed, clothed in my makeshift pajamas, jersey workout pants, a long-sleeved turtleneck shirt under a short-sleeved T-shirt, heavy socks and fingerless gloves, under the bedspread comforter and both of Aunt Ruth’s quilts. You would laugh, if you could.
I lay there all warm and toasty, dreading getting up to the cold, remembering how you were always the first one out of bed, getting the house warmed up, starting the coffee. Remembering how, when I was pregnant with Matt, you would go out and start my car five minutes before leaving time, so it would be warm by the time I left for Wilson High School.
How happy you were with that pregnancy. I was barely three weeks late and yes, because I was regular as clockwork, it was likely I was pregnant. We had, after all, been “trying” for two months.
“We’re going to have a baby!” you’d said, beaming.
“Maybe, but let’s not say anything until we know for sure.”
You just stood there, smiling.
'til Death or Dementia Do Us Part Page 18