A typical visit for me was on July 7. Mike was in bed when I got there. He was lying on his side, facing the door.
“Hi, Mike!” I said, smiling my most cheerful smile.
He brightened and said “hi.” I did the usual, asking how he was. “Fine.” What had he been doing? “Playing the piano.” I gave him news of Sharon and her family, Matt and Mika, etc. He was blank, then turned with his back to me and faced the wall. I sat in the chair beside his bed and read the paper for a while. Mike appeared to be sleeping. I gave him a light kiss on the forehead and left. Thirty minutes out. Thirty minutes back. Twelve minutes there.
Dale and Marg visited a few days later. Mike was in the living room with the others, batting a big balloon-like ball around. They joined in, then the three of them went to “Mike’s table” in the dining room where they each had a latte. In addition to being the hairstylist assistant, Marg generally brings lattes when she visits. Their report of this visit was that Mike was momentarily engaged when they talked of Marg’s upcoming trip to Montana, then he was gone again.
Although Mike now usually gives one-word answers to questions and doesn’t talk beyond that, he sometimes surprises me. On another July visit, Mike was in his room but got up when I suggested we go out to the patio. We sat for a short time while I tried to keep the chatter going.
“Shall we go inside?” Mike said.
I followed him into the dining room where we sat at his table. I had a bite of lunch with him, then left before he was finished. He stays fairly focused on food, so it was easy to leave without him trying to follow. But the question, “Shall we go inside?” was surprisingly clear and in context with the situation.
From what I can tell, Mike is more talkative with other visitors and staff than he is with me, though ”talkative” is an exaggeration. With me he is mostly blank, though there are times when he sits watching me intently, waiting, I suspect, for me to take him “home.”
On another July visit, Mike asked, “When do we go to the boat?”
I said I wasn’t sure and asked what time he thought we should be there.
“Five o’clock,” he said.
I told him that sounded about right, then took him out to the patio where I handed him the clippers and sat with him while he clipped his nails. It’s quite a chore for him, though so far he gets the job done.
On the way home, processing the visit, I wondered about the boat remark. Earlier in the day I’d told Mike that his brother, Jerry, was coming to town soon. He gave no reaction to that news until I said, “It will be fun to see Jerry, won’t it?”
“Yes,” he’d said, but without affect.
But … some 30-plus years ago Mike, Matt and I joined Jerry, Jackie, and their son David for a Caribbean cruise. We flew into Miami and met Jerry and family at the ship. Did Mike jump from news of a visit from Jerry to that long ago cruise? To wondering when we needed to go to the boat? There’s no making sense of any of it, but I can’t help trying.
Besides Jerry, his three grown kids, Beth, Laura, and David, are also coming to see Mike. I’m eager to see them, but I dread having them see Mike. He is so very changed from when they saw him just a little more than a year ago. As much as I write and talk about the changes in Mike, there is no real way to prepare others for the reality of today’s Mike.
EMERGENCIES—IT DOES TAKE A VILLAGE
2011
2011. During my nomadic period I made a two-week trip to Southern California, stopping first in the Arcadia/Pasadena area for overnights with longtime friends. From there I drove to Buena Park, headquarters of Morning Glory Press, where I spent a few days with my publisher/friend, then farther south to San Clemente for a visit with friends, then to San Diego, for an overnight with a cousin on my mother’s side. From San Diego I drove to Palm Desert where I spent the night with a near-contemporary cousin—she from my father’s side—who’d been my partner in cousinhood growing up. Back to Arcadia/Pasadena, and from there I set out to Santa Barbara, the last leg of my trip.
I’d been in daily contact with Rachel during this time, and also in contact with the people who visited Mike regularly. Things were going smoothly in my absence. As for me, it had been good to visit longtime friends. We laughed and cried as we reminisced about Mike. We caught up on each other’s lives and families. We ate well, drank well (but not too well), went for walks, shared book recommendations and movie recommendations, stewed about the growing vitriol that seemed to be the new standard for political discourse, and reminisced some more. There were times when I felt almost lighthearted.
I was close to Santa Barbara where I’d planned to spend two nights with Karen, a fellow writer and friend, when my cell phone rang with the distinctive ringtone I’d assigned to Rachel. As soon as safety allowed, I pulled to the side of the road and returned her call. She said Mike was ill and needed to see his doctor. He’d been running a fever all day and was very shaky and unsteady on his feet. If I could get him to the doctor’s office by 4 o’clock, they would see him. It was then 3:10, and I was at least five hours from home. Even if I’d been home, I couldn’t have made it out to Cameron Park and back to Dr. O’s office with Mike before 4. Neither could Dale, Marg, or any of my other local emergency contacts.
“That’s unfortunate that no one can take him, because Dr. O’Connor is going out of town on Monday,” Rachel said, sounding a bit peeved.
“I’m sorry,” I said, “but it is simply physically impossible for me or anyone else I knew to pick Mike up and drive him to the Med Center for a 4 o’clock appointment.” I could also have sounded a bit peeved asking why she’d waited so long to call, but I knew when silence was my friend.
The next call came around 6 o’clock, as I was sipping wine and taking in the glorious view of the Santa Barbara bay from Karen’s deck. Rachel said we should get Mike to a nearby Rapid Care facility to try to figure out what was going on and to get an order for Tylenol, maybe also an antibiotic.
Although I felt guilty about calling Dale and Marg from my scenic paradise, I didn’t know what else to do. They dropped what they were doing, drove to Cameron Park, and took Mike to Rapid Care. When I talked with them later that night, they said Mike had been so shaky and unsteady on his feet, it had taken both of them to get him to the car. He was even more blank than usual and looked lost and confused. Rapid Care did a urinalysis and throat swab, but nothing was conclusive. They got the order for Tylenol and an antibiotic and took Mike back to The Guiding Star.
By the next day, on a Thursday, Mike was a bit better, and I decided to stick with my original plan and stay at Karen’s again that night. When I called The Guiding Star on Friday morning, Mike was again running a fever, his neck was swollen, he was eating very little and staying in bed. I headed home.
During my Saturday morning visit, Mike was quite groggy. He sat on the edge of the bed for a few minutes, then lay back down. He made no move to follow me out when I left. Rachel and I talked about another trip to Rapid Care, then followed her inclination to give it another day.
By Sunday morning, Mike’s mouth and lower jaw were swollen, and he had blisters inside his lower lip and tongue. I needed to get him to Rapid Care.
It takes two people to manage Mike’s getting in and out of the car. Then there’s the parking problem. As soon as the driver stops the car in a parking space, or wherever, Mike hurries out and starts walking at a very fast pace to some unknown destination. The driver can’t possibly get out and around the car fast enough to get him. So someone always has to be in the back seat, directly behind Mike, to catch him and guide him in the right direction.
I called Dale to ask for transport help, cutting short his happy ramblings through the Sunday Farmers’ Market. The same receptionist and aide who’d seen Mike Wednesday night welcomed him back. Cameron Park Rapid Care has to be one of the most user-friendly emergency places in the whole nation.
It turned out that Mike had thrush, a form of yeast infection. The doctor’s fi
rst choice was to treat it with lozenges, but there was no way Mike would keep a lozenge in his mouth long enough for it to dissolve. We got a prescription for some kind of anti-fungal pills and got him started in the hope that we would see some improvement by bedtime.
Poor Mike. He couldn’t say how he was feeling. If asked he’d say “fine.” He answered yes or no to other questions, but the answers were not reliable.
“Are you feeling okay?” Yes. “Are you in any pain?” Yes.
We have an appointment with the regular doc on Wednesday. Marg will go with me.
The need for a later visit to Rapid Care occurred on one of Joe and Kathy’s visits. While they were walking outside with him, he fell and hit his head on a low brick wall. There was, as always with head wounds, a fair amount of blood, and he was rushed to Rapid Care, this time by ambulance. I arrived at the hospital shortly after he was admitted. Kathy was in the examining room with him, entertaining him as best she could.
Mike remained conscious, needed no stitches, and was released within an hour. I called The Guiding Star to say we would be back within the next 15 to 20 minutes, and asked that someone be watching for us at the door so they could grab Mike when I stopped opposite the entrance.
Once there, I left Mike at “his” dining room table with the understanding that someone would check on him every hour, watching for signs of a concussion. Both the emergency room doctor and Rachel thought a concussion was highly unlikely but, as my mother would have said, it’s better to be safe than sorry.
NO MORE NOMADING
July 2011
Sometime around April or May, I renewed my search for a more permanent place to live. I again looked at “affordable housing” possibilities. Most used the same financial criteria for acceptance as had Vintage Woods Senior Apartments. One complex, however, Broadway Senior Center, took medical expenses into consideration, and categorized Mike’s residential care costs as “medical.” There were 119 one- and two-bedroom duplex units, on well-maintained, nicely landscaped grounds, with a pool, clubhouse, and laundry facilities—walking distance to markets and cafes, and just blocks from Dale and Marg’s. At $500 a month including utilities, it seemed a perfect match. My application was accepted, but at number 38 on the waiting list it seemed unlikely that a place would become available during my lifetime. According to the new director the list hadn’t been culled for at least a year, maybe two, so the wait might not be so long.
“Things change fast,” she said. “Keep in touch.”
Within a matter of weeks I moved from 38 on the list to No. 1. As with Vintage Woods, I pictured myself enjoying time in the Broadway Center pool, sauntering up to Starbucks for a latte, occasionally dropping by Dale’s alley garden on my morning walk with Sunny.
When the director called to say two units had opened up, I rushed over, prepared to leave a deposit. I went through both units, one a two-bedroom, the other a one-bedroom. The rooms were quite small, without much natural light. Closet and cupboard space was limited. I doubted that any of my stored furniture would fit. But the outside area and clubhouse were inviting, the location was perfect, and the price was right. With a single bed, it looked as if the bedroom could hold a small bedside table and chest of drawers. I thought the second bedroom could, with a little maneuvering, serve as my office. There would be room for a small computer table, a bookshelf and two basic file cabinets. I reached for my checkbook, saying I’d like to leave a deposit for the two-bedroom unit.
“Why the two-bedroom?” the director asked.
“I’m a writer. I need some office space.”
“A writer?” she said, brightening.
As is often happens when people learn that I write, she told me of a book she wanted to write—if only she could find the time. I recommended a couple of “you-can-find-the-time” motivational books for her, then got back to business.
“Do you need first month’s for a deposit?” I asked.
Yes, she did, but it would have to be for the one-bedroom. They didn’t rent two-bedrooms to singles. It was a hard and fast rule. I went through the one-bedroom again, then asked the director if she would hold it for me for 24 hours, while I mulled things over.
I know. Beggars can’t be choosers. And the one-bedroom was certainly larger than the car that was, of sorts, a home base. Still, I was pretty sure that such a cramped space would not be conducive to writing. Of course, I could always go to a coffee place, or library, or some other public space, but even though the book/workshop business had greatly diminished, I still needed a few files. I needed a few books. I thought back to the ’40s and to my Granny’s trailer—the table with two benches that provided seating for four relatively slim diners, which converted to a bed that could accommodate two very slim sleepers. Maybe I could use such a set-up in the tiny bedroom? I would probably never find another place for only $500 a month. The nearly $200,000 cushion we’d had in 2008 had quickly shrunk to around $30,000. My recent rent-free months had enabled me to stop hemorrhaging money. I didn’t want to start again. But as much as I wanted the Broadway Senior Center to work for me, whenever I tried to envision myself in the tiny space, I found myself breathing more deeply, unconsciously fighting a sense of things closing in on me.
I let it go.
I watched the ads, checked Craigslist, drove around, looked at a few advertised places, gradually getting a sense of what was available, where, and for how much. I saw two, 1930s two-bedroom places for $750. Each had spacious rooms with gleaming hardwood floors. The downside was that, although they were in different parts of town, their locations were in competition for the highest crime rates in the Sacramento region. I looked at other rentals that listed for between $700 and $800. Most were shabby, or in high crime areas, or in some noisy, industrial setting. The ones I thought might work weren’t interested in renting to anyone with a recent history of bankruptcy.
Dale, in his wanderings about town, had noticed vacancy signs at two large apartment complexes near Sac State. He took a detour and visited both of the places, talking with each of the managers and soaking up details. He later called, identifying himself as my personal shopper, and urged me to take a look at The Reserve on Cadillac Drive. The manager there had assured him that recent bankruptcy need not be a deal breaker.
The apartment was freshly painted, the carpeted areas newly cleaned and in good condition. There was a fenced patio that could be accessed either through living room sliders or an outside gate. It would be nice to be able to open the slider for Sunny first thing in the mornings, rather than having to rush out for a walk while still barely awake. Both bedrooms looked absolutely spacious in comparison to the Broadway place. There was a small kitchen with a dining space that could accommodate up to six people—again if all of these people were of average or less bulk. According to the manager, Marlene, the residents of the 60-unit complex were split about 50/50 between Sac State students and retirees, with a few working couples scattered in. It was quiet.
In July 2010, I signed a one-year lease, got the basics from storage, and moved in, setting up solo housekeeping for the first time in my life. Not exactly solo. Sunny was with me, but there were no human cohabitants.
After taking the $3,200 each month for Mike’s care from our teacher’s retirement and Social Security income, I was left with about $2,000. My rent would be $950 a month. Tight, but I hoped not impossible. I borrowed enough money against a paid-up insurance policy to cover the deposit and moving expenses and took the leap.
Mike always had very definite ideas about home decor and so did I. He loved antiques and busyness. Royal Doulton figurines and gold-trimmed crystal dishes. Given full reign, he would have filled every inch of space on any table or shelf in our house with a little dish, or silver ornament, a candle in an ornate holder, something he’d brought back from the Soviet Union, or Israel, or from any other number of places he’d visited on choir tours. I loved uncluttered simplicity. We’d lived in a constant state of mostly genial c
ompromise. How far might I take my desire for simplicity when the necessity of compromise was lifted?
Everything needed to be reinvented. Having so long shared the order of my days with Mike, what order would my solo days take? Now I could read all night and sleep all day if I wanted to. Would I? I’d never particularly liked coffee, but I’d liked the companionship and ritual of sharing a cup with Mike each morning while we exchanged sections of The Sacramento Bee. We’d had other casual rituals, too. There was the glass of wine before dinner every evening. The after-church Sunday lunches. Would I develop a habit of solo morning coffee? Would I still have a glass of wine in the evenings? What new rituals might I develop?
From the storage unit I took the furniture that would fit the apartment, and the rest went to consignment. shop, Between what I took for the apartment, had already given to Matt and Leesa and to Cindi, or sold through Craigslist or donated to the Goodwill and The Salvation Army, there was not much more left to deal with.
The figurines, fancy vases, little decorative boxes, crystal candle holders and carafes, were either safely packed away in Joe and Kathy’s barn, or sitting on consignment in an antique shop in Fair Oaks. Winter clothes were stuffed into my office closet. The storage unit was emptied.
As for rituals, it turned out I did still like a cup of coffee in the morning while I read the newspaper. In the evening, Sunny and I generally sat on the patio around 6 while I sipped wine and she sniffed every inch of ground, as if during her two-hour absence some unwanted critter had infringed on her space.
There was the new ritual of hauling my week’s dirty clothes and linens to the laundry room on Tuesday mornings. Tuesdays, because the machines were often taken on weekends and Mondays, and I preferred to have the place mostly to myself. There was the ritual of walking the rent check up to the office every month. Just after coffee and the newspaper, there was the ritual of checking email and sitting at my second bedroom office computer for my daily wrestle with words.
'til Death or Dementia Do Us Part Page 24
