'til Death or Dementia Do Us Part

by Marilyn Reynolds

  Would it comfort you to know that you’re still such a powerful force in my life?

  I expect you always will be. Now that my grief and emptiness is much less constant than before, I’ve decided to welcome these random gobsmacking experiences, these reminders of you, of us, of love.

  Marilyn

  ARRESTED!

  February 2012

  On the way to the parking lot, I check my cell phone, silenced for the past two hours for the sake of movie-goers around me. Two calls—one from The Guiding Star at Porto Sicuro, one from Dale, who is the Guiding Star backup when they can’t reach me. In the car I switch to a Bluetooth connection and call Guiding Star. I’m immediately transferred to Stanley.

  “We’ve had a hard time with Mike today,”

  “The usual?”

  “More than usual. Chuck [one of the caregivers] asked Mike if he wanted orange juice and Mike pushed him to the ground,” Stanley said, talking so fast that if the gist of the story were not so familiar it would have been hard to follow. “He yelled, ‘Fuck you’ at Mrs. Samson—poor, sweet Mrs. Samson who broke into tears and got onto a crying jag that lasted for more than an hour. When I tried to lead Mike back toward his room, he kicked me so hard it drew blood through my jeans. He shoved Mr. Percy. We can’t have that.”

  While I picture the chaos, Stanley pauses for a breath. “We had to call the sheriff,” Stanley says. “Mike’s been arrested. They took him to Marshall Emergency.”

  “When?”

  “About an hour ago. We had to. We couldn’t reach you.”

  The exit for home dissolves behind me in the rearview mirror as I set my sights on Marshall Hospital.

  “You’re going to have to find another place for Mike,” Stanley says. “We just can’t do it any longer. It’s not fair to the other residents.”

  “I know.”

  “I’m sorry. We’ve tried everything.”

  “I know.”

  Silently thanking the goddess for Bluetooth, I call Dale.

  “You talked to The Guiding Star?”

  “Yes. I’m on my way to Marshall.”

  “We’re in Tahoe,” he reminds me.

  “I know. There’s nothing anyone else can do anyway.”

  “Well, but it would be best if you could have company.”

  “I’m okay.”

  “Yes, well, other than that, Mrs. Lincoln, how was the movie?”

  A sheriff is seated at the door, outside the room where Mike is being held.

  “Mrs. Reynolds?” he asks.

  I nod and walk into the room. Mike’s wrists and ankles are shackled to the bed with hefty iron cuffs. He is heavily sedated but awake. I stroke his bruised cheek, his bruised arm.

  “You’re in a mess,” I say.

  Mike smiles, gives a slight nod of his head and closes his eyes. The wreckage left from who he once was haunts me more sometimes than others, but what a sight this is, this remnant of Mr. Fun, charades genius, golden throat, silver tongue, gentle listener, pie baker, and so much more, arms and legs spread, shackled to the corners of the iron bed.

  The sheriff peeks in the door and gestures for me to come out.

  “It took three of us,” he says. “He’s strong. There was no reasoning with him.”

  “He’s beyond reason,” I say.

  The sheriff nods.

  “We can 5150 him, put a 72-hour hold on him while he’s evaluated, then get him transferred to a more appropriate setting.”

  I mull it over. If we did this, Medicare would, for a while, pick up the bill. Medi-Cal would take over after that. What a huge financial relief that would be. I glance in at my groggy, shackled, shell of a husband. I can’t do it. I can’t go the 5150 route. I’ve seen those “more appropriate” settings. Overworked staff, zombies in hallways, unending cries of distress—“Help!” “Help!” or “Mommy! Mommy!” emanating from six-bed rooms, wafts of odors that insult the olfactory nerves.

  “I don’t want to 5150 him,” I tell the sheriff.

  “He’s dangerous.”

  The nurse comes down the hall to say Social Services returned her call. The answer to what resources they might offer was that since Mike’s condition was “organic” and not “psychotic,” his case is beyond their concern.

  I call Stanley and ask if I can bring Mike back for just a few days, until we can find a better placement.

  “Four days max,” Stanley says.

  “Okay.”

  “We’ll have him arrested again if he lashes out.”

  “I understand.”

  “You know Mrs. Fitzgerald?”

  “The one with the poodle?”

  “Yes, the poodle that Mike kicked. In the middle of all of the chaos her heartbeat shot up. She was having palpitations. She has a weak heart as it is. We had to call the ambulance. She’s now under observation in the hospital.”

  Poor Mrs. Fitzgerald, poor poodle, poor Mr. Percy, poor Mrs. Samson, poor Stanley, poor me, poor Mike. Poor gentle Mike. How he would hate who he’s become.

  I arrange to have someone waiting at The Guiding Star door so they can help me get drugged-up Mike out of the car and into his room.

  The sheriff reminds me of how violent Mike’s been, how it took three strong men to get him into the squad car just hours ago. He encourages me to reconsider the 5150 alternative.

  “I can’t bring myself to do that,” I tell him.

  He shakes his head. I assure him that I’ll be okay, that someone will be waiting to meet us at The Guiding Star. Unconvinced, he says he’ll follow close behind me on the way back. If I need help, if Mike starts acting up, I’m to blink my lights twice and pull to the side of the road.

  I sign the release papers. The sheriff unshackles Mike, and he and an aide get him into a waiting wheelchair. Because Mike is so heavily sedated, it’s a struggle to get him into the car and buckled up. True to his word, the sheriff follows close behind me from Placerville to Cameron Park. Seconds after I pull up in front, two aides, one pushing a wheelchair, are out the door. The sheriff, too, comes over to the passenger side of the car to help get Mike out and into the wheelchair. Mike’s not uncooperative, just unwieldy.

  With Mike safely in the wheelchair, I thank the sheriff and turn to follow the aides as they wheel Mike back to his room.

  “Good luck to you,” the sheriff says.

  “Thank you.”

  I know I’m going to need more than luck, but I appreciate his kindness.

  AFTER THE GUIDING STAR

  February 2012

  From my first, tentative explorations of a move to a retirement community, through other explorations of what might be the next move for Mike, Carol Kinsel of Senior Care Solutions had been a major source of information, insight, and support. The morning after Mike’s arrest I called to see if she knew of other possibilities. She said there was one private facility in Sacramento that was quite successful in dealing with difficult-to-manage dementia patients. The woman who ran it was a neurologist. It was a top-of-the-line facility, with top-of-the-line $9,000-a-month fees to match. Not possible.

  Carol also knew of two local nursing facilities that might possibly take Mike. Another possibility was Sister Sarah’s Care Home, a six-bed residential care facility. Carol said the owner and director, Sang Phan, was rather unconventional but had been effective in managing people with extreme behavioral difficulties. Sister Sarah’s had an opening, but it probably wouldn’t last long. There was also a nursing home/assisted living place an hour away in Fairfield that, except for the distance, sounded as if it might be a good fit.

  Dale and I visited both of the nursing facilities Carol had suggested. The first one, a depressingly institutional 80-bed facility, said they weren’t equipped to deal with the behavioral difficulties Mike was likely to present. The second one, North Point, was also institutional but with an impressively cheerful and connected staff.

  The North Point buildings were clean bu
t, in some sections, bordering on shabby. However, there were three spacious, well-maintained, outdoor areas that residents could access by simply walking through an unlocked door. Mike might do better with more outdoor space in which to wander, but how would he do in a five-bed room? Hard to imagine.

  I would much rather see Mike in a more home-like setting than in a 100-plus bed facility. On the other hand, the nursing facility had the available resources of RNs, staff doctors, a psychiatrist, social workers, and a dentist, and it was equipped to deal with all manner of difficulties. Another North Point advantage was that the fee would be at least partially covered by Medicare. After Medicare, Medi-Cal would kick in for approved Medi-Cal patients. There were still more Medi-Cal hoops through which to jump, but, according to a case worker, it looked as if Mike would be approved. What a huge relief it would if the whole financial burden weren’t resting on me.

  The same day we visited the nursing facilities, I visited Sister Sarah’s Care Home, a private residence on about an acre of land in Orangevale, about 18 miles northeast of Sacramento. Sister Sarah (aka Sang), in sweat pants and a T-shirt, met me with a strong handshake and a big smile.

  One man and three women were eating lunch at a large table at the end of the kitchen. Sang’s husband, Daniel, the facility administrator, was sitting with them. One man was sleeping on the living room couch, half-covered by a fuzzy red blanket. Sang showed me the available room. It was basic but homey. There were two windows in the room, an advantage over Mike’s present room, or any room he would have at North Point.

  To say that Sang had a bubbly personality would be a gross understatement. She talked the proverbial mile a minute and expressed total confidence that she could deal with Mike. She told me about Ron, the man who was sitting happily at the lunch table. When he first arrived, he might take a bite of food, then throw the rest of it on the floor. He wouldn’t talk. If anyone was watching TV, he’d purposely stand in front of it, blocking their view.

  “He angel now!” Sang said.

  (I don’t want to be disrespectful in my attempt to portray Sang’s speech patterns. However, if I’d written “He’s an angel now,” it wouldn’t accurately portray Sang.)

  Sang showed me the bathroom that Mike would be sharing with Ron and the other man. She took me back to the kitchen where she talked about how she cooked everything from scratch. “Lots of vegetables!” she said. “Even in cookies and cake. Vegetables!”

  Ron was still at the table. One of the women was in the living room watching TV. The other was outside, wandering around the enclosed yard.

  I followed Sang to the yard, where she pointed out her roses and citrus trees. The property was fenced around the perimeter with a secure gate. Residents were free to go outside whenever they want to.

  “Plenty space!” Sang said. “Everybody need space!”

  I told her of Mike’s violent outbursts and of his recent arrest.

  “Don’t worry, honey. He be good here. They all good here.”

  Daniel joined us outside.

  “Right?” she said to him. “They all good here.”

  Daniel smiled. “Sang has a way. If she tells you your husband will be good here, you can count on it.”

  “Mike’s big—about 6 feet tall, weighs around 180. He’s strong.”

  “Me—not big. Strong!” Sang said. She flexed her bicep. “Feel this!”

  I hesitated.

  “Come on. Feel this,” she said, standing in a body builder pose.

  I felt her rock-hard muscle.

  “See? No worry!”

  On the way home from Sister Sarah’s I consider the possibilities. It’s $2,800 a month, $200 less than I’ve been paying, though still a huge stretch. North Point has financial advantages and also a strong support staff. But, for the moment at least, I’m leaning toward Sister Sarah’s. Thankfully, Matt will arrive tonight from Walla Walla, and Sharon is coming over early tomorrow. We’ll visit North Point and Sister Sarah’s in the morning. Dale and Marg will visit Sister Sarah’s tomorrow afternoon. Maybe Marg can also see North Point.

  In the evening, with the help of martinis, we’ll share our observations, pool our opinions and insights, and hope to come up with the best decision for Mike’s immediate care. How lucky I am not to be in this alone.

  After batting around abstract pros and cons—available resources and support, money, location, rooms, staff, outdoor areas, we try to picture Mike in each of these places. None of us can easily see him in a five-bed room. The constant noise and activity in the North Point hallways would likely raise his level of anxiety to a trigger point. He wouldn’t do well with set mealtimes. On the other hand, the North Point staff may have a better chance of finding a balance of meds to counteract his anxiety and explosiveness. And there’s the money.

  Sister Sarah’s? By now we’ve all, at her insistence, felt her bicep. We’ve heard her take on food—all fresh, home-cooked, vegetables in everything including desserts. We’ve been inundated with her good cheer and positive attitude.

  “The decor is not exactly to Dad’s taste,” Matt says.

  That’s true. The lampshades still sport their cellophane wrap. Furniture is covered with plastic. The place is teeming with plastic flowers. A wallpaper mural depicting a golf course covers one whole wall. Where The Guiding Star was designed and furnished to look like an upscale hotel, Sang’s place looks like our Aunt Gladys might have decorated it and, although Mike loved our Aunt Gladys, he did not admire her taste in home furnishings.

  “I think Dad’s beyond caring about decor,” I say. “Even if he’s not, my guess is that he’d prefer Sister Sarah’s decor to that of North Point.”

  This turns out to be a two-martini decision, but in the end, the last pretty glass drained, the last stuffed olive eaten, Mike’s on his way to Sister Sarah’s Care Home.

  Both Sharon and Matt offer to help with the cost.

  “Not yet,” I tell them. “It’s not time yet.”

  After years of graduate school, and more years before Matt landed a tenure track teaching position, plus child care expenses when Leesa worked, and less income when she didn’t, Matt and Leesa are barely beyond living month to month. Sharon and Doug are more established financially, but the combined private school tuition for Lena and Subei has got to be a budget strain. There’s still a little left in the last of our IRAs.

  I tell them the same thing I told Dale after he’d talked with some of the closest 100 Hours friends about possibly pooling resources to help on a monthly basis.

  “I’m not totally desperate yet. I’ll let you know when I’m totally desperate.”

  I am grateful beyond words to have such stalwart support. My fervent hope is that I will never become an item in anyone else’s budget.

  SISTER SARAH’S

  February 16, 2012

  Moving Mike requires the precision of a synchronized swim team. Knowing how discomfited Mike becomes with any shifting of things, Sharon, Marg and I, go out to The Guiding Star with the purpose of keeping Mike busy and out of his room while Dale and Matt dismantle it. Clothes, shoes, lamps, our bedside table, bedding, CDs, TV, CD player and radio, Mike’s stack of snapshots, cards and daybook, 20 or so framed family pictures that hang on the wall of his Guiding Star room—all of that needs to be transferred and set up before Mike enters his new home.

  We arrive around 11 to find Mike on the bed in his room. He smiles broadly when he sees us.

  “I brought some pictures to show you, Dad,” Sharon says. “Do you want to come see them?”

  Mike gets up and follows us out to the living room. Sharon shows him pictures of the girls, and old family vacation pictures, many that include him. He gets up and walks toward the hall, in the direction of the room. I lead him back. We take him out on the patio. We tell him stories. We draw him back as he turns to go back inside, as if determined to go back to his room.

  “Do you need the bathroom?” I ask.

  He n
ods yes.

  I walk him over to the lobby men’s room and open the door for him. I wait by the door. He comes out a few minutes later.

  “Did you wash your hands?”

  He goes back in. Stalling, stalling, stalling is what we’re doing. If it’s tedious in writing, that’s only a hint of the reality.

  It’s finally close to lunchtime, and the four of us sit at Mike’s table. The caregivers know what we’re up to and try to help by bringing us snacks and drinks. When it’s truly lunchtime and the others are in the dining room, they bring Mike his soup and salad. After a few tastes of soup, Mike gets up. One of us calls his attention to his salad. He sits back down. One bite, then up again.

  Finally, after more of this, encouraging him to eat, taking him out on the patio, showing more pictures, and doing it again and again, we hear from Dale. They’re at Sister Sarah’s. Daniel was there waiting for them when they arrived. The three of them unloaded Dale’s truck, and the big stuff is now in Mike’s new room. They just need to make up the bed, get pictures on the wall, and clothes in the closet and chest of drawers. He figures they’ll be ready for Mike in about 45 minutes. We stall a little longer, then take Mike to the car.

  Once in the car, I explain to Mike that we’re taking him to a new place. I assure him we want him to be someplace where he will be relaxed and comfortable. I remind him of his recent horrible experience with the sheriff and tell him we wanted to do everything we can to keep that from happening again.

  “I’m sure you don’t want that to happen again, do you?”