It’s taken a long time for you to recognize me. When your father died, I couldn’t even get through the door, much less find a place in your living room.
I was busy with the cousins—Anger, Disappointment, Abandonment….
You had all those armed guards around your place—special instructions to keep me out.
Yes. Well, it turned out I had to banish the guards. They were arming for a hostile takeover and … Hey! Hey! What are you doing?
Unpacking. The guards are gone.
No, you don’t! Out of the living room. You’ve been here long enough for one day. And take your family with you! You’ve got way bigger jobs to do. Make your way to the people who are sick and hungry, to the ones fighting wars, the ones being tortured and abused. My grief is petty in comparison. Out!
Have it your way. But I’ll be back. You can count on that!
I know. You are always hovering, waiting for that moment when the door opens and you can rush in.
Yep. And don’t sell me short. I have many keys to that door—the smell of morning coffee, the red wool jacket still hanging in the closet, the morning surprise that the warm body you wake to is only a dog. So many keys to the door.
Yes, but you’ll have to keep the visits short.
MY LIFE AS A NOMAD
January through July 2011
Without Mike, I have no need or desire to live in a three-tiered retirement community. As much as I appreciated Carmichael Oaks as a port in the storm, I’m eager to move on. Also, because of the $3,000-plus rent, I need to get out of here as soon as possible.
As I busy myself with packing, separating the necessities to keep with me from things to be stored, wherever, until I decide where I’ll be for the longer term, as I wait in the checkout line at Raley’s, as I drift off to sleep at night and waken to reality in the morning, there’s the overpowering image of Mike pacing round and round, behind locked doors, a caged tiger, poised to bolt, an image more real than the groceries in the basket, the cheerful cashier asking about my day, the debit card I’m pulling from my purse.
First thing in the morning, last thing at night, pre-dawn times of wakefulness, all day, every day, Mike caged. Mike rushing the door. Mike peering out, watching for the Prius, for me, to pull up to the curb and come to him. I am haunted. Tortured. How could I do that to him, essentially put him in prison? How could I not? What else might I have done? Over and over the images, the questions, the indescribable ache of emptiness in the center of my being. All day. All night. Every day. Every night. Us separated. Mike caged.
It seemed necessary to have my phone on and within reach at all times, in case of an emergency call, but after the first week or so I stopped answering Mike’s nighttime calls. During the day I took to answering only one out of every two or three calls from Mike. That still left me hearing his come-get-me-fuck-you mantra 10 to 15 times a day.
Rachel advised that, since I was a “trigger,” I not visit Mike until he’d become better adjusted to life at The Guiding Star. Other friends and family visited. Mike was happy to see them. Joe and Kathy lived just a few miles from The Guiding Star and often dropped by for a quick visit when they were on their way to the market, or Home Depot, or any number of places that took them right past Porto Sicuro. If the weather was nice when they visited, they’d take Mike for a walk around the grounds. When it was time for them to leave, he willingly returned to The Guiding Star with them. Once inside, one of the caregivers would distract him while they were “buzzed out.” Marg, Dale, Judy, Jo, others of the 100 Hours Club all visited Mike before I did.
Friends and family called Mike on his cell. He greeted them happily, responded to questions. How was he? Fine. Was he playing the piano? Yes. How was the food? Good. He didn’t initiate conversation, but he maintained his old cheerful phone persona. As far as I know, the only original remark he made in any phone call was when, after two weeks at The Guiding Star, he told Matt quite matter of factly, “Your mother divorced me.”
Though his brain had lost all capacity for logic and reasoning, his intuition was still at work. I had not, in fact, divorced him, but neither had I been his wife for some time. My recent roles with Mike had been closer to mother, financial conservator, caregiver and behavior monitor, none of which was conducive to a husband-wife relationship. It had probably been over a year since we’d gone through the motions of “making love,” a euphemism for the kind of sex one may have with a partner who has lost the capacity to love. Who knows how long it had been since we’d actually made love? I hadn’t been keeping track.
By the end of the first four weeks at The Guiding Star, Rachel felt that Mike was sufficiently adjusted to the move that I could visit. I took chocolate chip cookies from his favorite bakery, snapshots of the grandkids, a CD of Artur Rubenstein playing Chopin waltzes, and a few more clothes. I got there around 10 in the morning and found Mike sitting alone, expressionless, at a table in the dining room. He rose from his chair, smiling broadly, crossed the dining room and greeted me with a kiss.
“Let’s go,” he said.
“Can I see your room?”
He turned and walked quickly down the hall. I followed close behind. His room was neat, with the familiar pictures on the wall. A favorite lamp that had belonged to his great aunt was on one of our bedside tables that now sat beside Mike’s extra long twin.
“Look,” I said, holding up the CD. “Shall we listen to some of the waltzes?”
“Let’s go!” he said, walking quickly out the door and down the hall. I caught up with him at the entryway. He was carrying a leather picture album, the size of a paperback book, that contained family pictures and some loose postcards.
“Let’s go!” he said, pushing at the thick glass door.
“Look, I brought some cookies. Can we get some coffee?”
He followed me into the dining room. I got coffee from the ever-present giant coffeemaker and took the cups to the table where I’d first seen him.
“Come sit down for a minute.”
He did. I gave him a cookie. He downed it in two big bites, took a swallow of coffee and stood.
“Let’s go!”
Rachel, who had been watching from a distance, came over to Mike and took his arm. “Can you please help me with some music?” she said, leading him toward the lobby piano.
I went to the door where an aide was waiting to let me out.
In the Prius, my face covered with my hands, my head leaning against the steering wheel, I sobbed. Poor Mike. Poor me. Goddamnitall!
Rachel and I were keeping in close touch through email and the evening after that first visit she wrote:
After you left, Mike became extremely agitated, shouted, stormed the door several times. We just got him calmed down. He is back to the behaviors of before the medication change. We need to ride this out to see if he settles down before any more visits. I don’t want to have his meds adjusted just because of visitations…. It will take more adjustment time for him to acclimate to the routine. One day at a time.
It was another four weeks before I visited again. In the meantime Mike lost his cell phone. He could still call me, and did, but because he now had to use the phone in Rachel’s office, his calls were less frequent. On the rare days when he didn’t call me, I called him. Matt and Sharon called often.
During this time of separation I sent cards to Mike, sometimes including a family snapshot of better times. I posted his mailing address on the blog in case others wanted to drop him a line. I looked at rentals.
Mike’s care used all of his retirement income and half of mine. At the rate I was cashing in our lessened-in-value IRAs and mutual funds, I had another year, at the most two years, during which I could meet basic expenses. Over the past year, I’d watched what had once seemed more than adequate retirement savings hemorrhage away. With the house in foreclosure and many credit card balances long overdue, our once pristine credit rating was in the sewer. Landlords were not eager to r
ent to me. Decent places within my perceived price range were rare.
I toured Vintage Woods Senior Apartments, an “affordable living” complex somewhere about halfway between Sacramento and Cameron Park. It had two bedrooms, one of which would work nicely for an office. It was freshly painted and carpeted, and there was a well-maintained pool and clubhouse. They accepted pets of 20 pounds or less. Sunny hovered around 18. The rent was low enough that I could almost cover Mike’s expenses and still make ends meet. Because I would be left with so little discretionary income after paying for Mike’s placement in a memory care facility, the manager of the complex was certain I would qualify. Credit scores were not a consideration.
There was one available apartment, upstairs, overlooking the courtyard. The rooms were not spacious, but I knew it could easily work for my pared-down life. The design was such that even though the rooms were small, the apartment felt light and open.
I pictured myself living there. The complex backed up to a large park, a perfect place to walk Sunny. It was only a block to a Raley’s market, my favorite Northern California chain. I pictured myself walking to and from the market, my portable rolling cart filled with the few weekly supplies necessary for my simplified life. I pictured myself reading by the pool. Playing Scrabble in the clubhouse. I pictured where the desk would go.
My application was turned down. I made an appointment with the manager’s immediate supervisor but it was of no use. Our gross income was too much for me to qualify for a designated affordable senior apartment. The corporate contact person clarified that, yes, they did deduct valid medical expenses from gross income when evaluating whether or not a potential renter qualified as “low income.” Unfortunately, costs related to memory care were not considered to be valid medical expenses.
Had Mike’s disease been anything other than FTD—diabetes, or cancer, or heart disease or any of the other major killers of our time—his expenses would have been completely covered by our health insurance. If we’d had no health insurance coverage, the expenses related to such a disease would have been deducted from my gross income, thus meeting the low-income requirements of the affordable living complex. Not so with FTD.
There were other housing options. Matt and Leesa assured me that I would be more than welcome to stay with them in Walla Walla. We agreed it would be a good thing all around if I could be a regular part of Mika’s life.
I couldn’t picture myself living in Walla Walla, 900 miles from Mike in Cameron Park. As I weighed the possibility of such a move, I explored memory care facilities that might work for Mike. The two private facilities were dreary beyond description, but I was impressed with the Walla Walla Odd Fellows home. It offered independent living, assisted living, and nursing care. It was considerably less expensive than any places available in the Sacramento area. It was long established, with a friendly, caring staff and spacious, beautifully landscaped grounds. Just blocks from where Matt taught at Whitman College, and just a few more blocks from where they lived, Walla Walla had its appeal. The Odd Fellows didn’t have a secure memory care facility. They had a buzzer system that alerted staff whenever anyone left the assisted living facility, but they were not set up to deal with residents with “exit-seeking behavior.” If I chose to make a move, they were willing to give Mike a try in the hope that he would adapt within a month or so. But what were the chances that Mike would adapt? Slim to none was my guess. Then where would we be?
Another option was the downstairs apartment at Sharon and Doug’s in Woodacre. One-bedroom with a nice-sized living room, a small but convenient kitchen, full bath, and large outdoor deck, it would easily accommodate my needs. Sharon and Doug assured me that I would be welcome there. As with the Walla Walla possibility, I would be happy to be a part of the grandkids’ everyday lives. In both cases, Walla Walla or Woodacre, I could offer basic help to overburdened parents. Hanging out with Mika after school would be great fun. For Subei and Lena, hanging out with Gramma wasn’t quite as exciting as it was to Mika, but they still liked me. I could still make them laugh. My greatest Woodacre asset would be providing taxi service, something I could happily do.
I needed to get out of Carmichael Oaks, but I didn’t yet know where I would go.
I arranged for the moonlighting movers to move things from storage to Joe and Kathy’s barn, then to move furniture from the apartment to storage.It seemed certain that I’d never again have a bedroom large enough for our Stickley furniture, so I had the bed delivered to a local furniture consignment store. One of the movers was happy to get the still relatively new king-sized mattress and box springs. The large chest and bedside tables were stored in the hope that they might someday fit into a new space.
In the Prius I kept Sunny’s bed, food and dishes, a medium-sized suitcase packed with the essentials of a one-to two-week outing, including medications and cosmetics. My laptop was tucked out of sight under the passenger seat. There were two plastic hanging file containers, one with basic personal business necessities, bankruptcy papers, bills, tax information, insurance documents, Mike’s medical records and the Porto Sicuro contract. The other file had basic book-business papers—an accepted proposal for an upcoming English teacher’s conference, the Morning Glory Press contract for Over 70 and I Don’t Mean MPH, and the nearly completed manuscript for that essay collection. A lightweight garment bag contained hanging clothes, mostly cottons.
I would be a nomad until I could settle on something more permanent.
August 2015
Dear Mike,
Sometimes I hear you calling my name—not frantically, but as if you want to draw attention to something. It’s the way you called my name on thousands, tens of thousands, of occasions. Like that time way back in the ’60s, when we were in Dr. Groat’s office, getting blood tests for our marriage license. I’d already had my blood drawn and was walking down the hall to the exit when I heard, “Marilyn!”
It was almost a whisper, and I turned to see you sitting in an examination room, motioning to me. I expected you were going to point out something that was funny, maybe that standard picture of the uterus that so often adorns the walls of doctors’ examining rooms. The one that includes ovaries, fallopian tubes, cervix and vagina. The one that looks like Bessie the Moo Cow. But instead of sharing something humorous, you said, “I think I’m going to faint.” Your squeamishness at the sight of blood was another detail to add to my getting-to-know-you cup of characteristics.
You called my name when you woke me gently on mornings when you were already up and showered, ready for your zero period class. Or when, unlike in the doctor’s office, you did draw my attention to something we could share a laugh over. Or when you caught my attention in a restaurant, or a party, or any number of places where, because of our unsynched schedules, we’d arrived separately.
At first, before I was used to you being gone, when I heard you call my name, I would turn instinctively, expecting to see you. That was years ago. Now, I just get quiet and listen, welcoming the memories that come with the unique tone and rhythm of your voice and my name.
This morning, at UUSS, we sang “Come, Thou Fount of Every Blessing.” The singing of that familiar melody is just as rousing with the UUs as it was with the Baptists, but the words to the hymn have been adapted to UU sensibilities. Today’s lyrics are much more in keeping with my own understanding and insights. Jesus and His blood are nowhere to be found in today’s version. But at the beginning of the second verse, as the congregation sings, “Come, thou fount of every vision, lift our eyes to what may come …” I shift back to the Christian hymnal version:
“Here I raise mine Ebenezer/Hither by Thy help I’ve come/And I hope, by Thy good pleasure/Safely to arrive at home….”
We were young. Well, at 28, you were young. At 33, I was young-ish. Dale and Marg at, what, 22? Maybe 23? They were definitely young. I don’t remember when and where it was that the four of us got so silly over that song. What I do remember is that when we got to
“Now I raise mine Ebenezer …” you, with your comedic gestures and timing, glanced furtively down toward your “Ebenezer” and sang with gusto “… by Thy help I’ve come” and “… good pleasure …” and “arrive at home,” and forever after, that song transports me back to a time of shared laughter and silliness, and though some might interpret this as sacrilegious, to me it’s a sacred joy. I doubt that whatever God there may be is offended.
I cherish memories of those times, Mike. I cherish hearing you call my name. I cherish memories of laughter. I cherish memories of your raised Ebenezer.
Marilyn
FEWER OUTBURSTS
May 2011
Mike has had very few outbursts these past few weeks. That’s a huge relief, even in the midst of my overwhelming sadness at Mike’s present state of being. Are the lessened outbursts due to the tweaked and balanced drug regimen, or is he indeed adjusting to life at The Guiding Star? Who can say? Whatever the reason, I’m grateful.
During a three-week stay in the Reynolds-Kyle downstairs apartment, I managed to finish the semifinal draft of Over 70 and I Don’t Mean MPH. Part of that time included keeping the Woodacre ship afloat while the others were on vacation. My duties were few—feed their elephant-sized dog and the bitchy cat, keep seed in the feeders for the hoard of ravenous birds that Sharon supports, and water a few plants. Easy-peasy.
The next stop in my nomadic route will be at the Dodsons’, in time for their annual July Fourth KFC pig-out.
These days Mike is usually in bed when I visit. He doesn’t want to associate with anyone at The Guiding Star, and so, other than meals, he takes to his bed. Now that he’s less agitated, the caregivers take him out for a walk a few times a day, but that’s about it.
'til Death or Dementia Do Us Part Page 23