Denise Thomas stands in her kitchen, shaken. Her eyes pool with tears.
“What am I going to do?” she says.
The call from the nursing home two days before struck like a slap. She thought she had more time. But now it’s real.
In the next 30 minutes on this Wednesday the week before Thanksgiving, an admissions social worker from the Evergreen nursing home in Olathe will walk into her house with a nursing manager to meet Randy, her husband, who has been stricken with a rare form of dementia.
Denise knows they’re going to want an answer. Maybe not immediately, maybe not tonight, but very soon.
“I thought I was ready for this, but I’m not,” she says.
Over the weekend, one of the four men in Evergreen’s memory care unit died. Denise had put Randy, 63, on its waiting list months ago. Now, with an opening, they’re coming to evaluate him.
In some ways, everything up until now seemed prospective and almost theoretical — all the emotional talks with her younger son and her sisters, who support the decision to place Randy, and her older son and her mother-in-law, who are against it. Even hiring the lawyer and figuring out the finances seemed in preparation for some moment in the vague future.
Right now, it is hard for Denise to comprehend that in the next several days, she may actually be gathering her husband’s clothes and, without him really understanding what’s happening, moving him forever out of the home they have shared for almost half their lives. The clinical, practical part of her mind understands. She is exhausted. It’s no longer safe for Randy to remain at home alone.
“It’s my heart,” she says. It aches.
The doorbell rings. Two women enter — young, gracious and polite.
Denise calls Randy to the door.
“We don’t want him to be nervous,” Emily Filla, 25, the social worker and admissions manager, says to Denise. Kendra Howard, 30, a nursing manager and licensed practical nurse, stands with her. “It’s really pretty informal, just a chance to get to meet Randy and ask you some questions.”
Denise introduces them to Randy. He doesn’t understand.
“Oh?” he says. “OK. Uh-huh, OK. Yeah, OK then.”
For the next 90 minutes, he will sit in the living room in silence, eyeing the same newspaper he has eyed day after day for weeks. The women talk, asking Denise questions about Randy’s typical day, his demeanor, his hygiene abilities. Does he need help? How is he among strangers? The memory unit is smaller than his home. How does he handle change?
“Does he ever use full or complete sentences?” Filla asks.
“No,” Denise says. Soon she’s crying.
“Sorry,” she says.
“You’ve done this for five years,” Howard says. Denise grabs a tissue.
“Yeah, longer than that really,” Denise says of the last nine years.
Soon Denise is asking questions, unclear how Randy will react to any of it. Will he be happy? Scared? Evergreen is a nonprofit home to 112 residents.
“How many people are on the memory unit?” she asks.
“How many other men?”
Will you take him on outings? … We can still come and take him and do things, right? … He likes snacks before dinner, Oreos or Chips Ahoy. Can he have those? … Can he have his Pepsi? … Can he sleep in? … What if he wants to go out and do leaves, would you let him go out and be in that courtyard or whatever?…
The answer to pretty much every question is “sure.”
“You’re not going to hear ‘no’ from us very often,” Filla says. “We’re not in the habit of saying ‘no.’ We’re in the habit of saying, ‘How can we?’ All of our schedules go around their (the residents’) schedules. That’s our whole philosophy. That’s why we ask what their typical schedule is. How do we re-create that? If someone gets up at 10 a.m., if they have snacks before dinner, there’s no reason that should change.”
Denise knows this is true.
She’s checked out other nursing facilities. Some were horrible. This one, in a brick and white clapboard complex off 119th Street in Olathe, doesn’t even call itself a nursing “home.” It’s a “community” where the residents live in “neighborhoods.” The memory unit is “Country Lane.” The place has won awards for its sensitive, resident-focused care.
It has a gardening group, a men’s group. They take residents to the theater, movies, even to the casino. They have a happy hour. The staff turnover rate is relatively low, a good sign. When the staff learned one of the residents was a retired custodian, they constructed a board full of locks and wires and bells for him to fiddle with. They gave him a toolbox.
Randy likes to wait for the mailman, Denise says. “He’ll wait all day. He is real concerned every day until the mail comes.”
Howard nods. “We have just recently talked about putting a mailbox inside or outside the neighborhood,” she says. “He could get the mail for us.”
that,” Denise says, as Randy stands and begins to shut the living room blinds: another routine.
“Hey, but what else? That? Go ahead? Yeah, I can dothat
one right now,” he says.
Denise knows the young women are working to put her at ease. They tell her that, typically, it takes about a month for new residents to truly acclimate. Many residents are agitated at first, but it passes. It’s not the residents, but the families of residents who have the hardest time adjusting, they say. They also understand Denise’s conflicted emotions.
“He is your husband,” Filla says.
“I have absolutely no idea how he is going to react when I leave,” Denise worries.
But Howard and Filla remind Denise.
“You do have an escape plan,” Filla says. Evergreen is not a prison.
“At the end of the day,” Howard says, “nothing is permanent.” If it doesn’t work, she can always take Randy home.
“I’ll be calling you tomorrow,” Filla says.
Normally, they would want him placed in the next three or four days, but because next week includes Thanksgiving, they say they might be able to wait until the Monday after.
The women depart. Denise again chokes with tears.
“I just feel like I’m betraying him,” she says.
The weekend after Thanksgiving passes as what Randy’s 83-year-old mother, Anna Blackman, calls “hell on earth.”
Evergreen accepted Randy for admission and would like him to come Monday, Dec. 2.
When Denise told her younger son, Jordan, 28 and working as a nursing aide, he was supportive. Her older son, Justin, 32, and wife Stephanie were still pushing for a home health aide. Denise’s biggest fear was telling Randy’s mother.
On Thanksgiving Day, the whole family, some 35 people, gathered at Blackman’s Lee’s Summit home for dinner. Denise didn’t say anything, wanting the holiday to pass nicely. She also knew that if she didn’t take the room at Evergreen now, there’s no telling when the next opening would be.
On Saturday night, Denise picks up the phone.
“I’ve been avoiding telling you this,” Denise says.
The next two days are agonizing. Denise continues to talk to her sons and call her sisters, and she discusses the decision even more with her mother-in-law, who offers to help pay to care for Randy at home. Denise stands in her kitchen under such strain that her daughter-in-law Stephanie can’t help but see it.
“Justin,” Stephanie says later, “your mom is just done. She can’t do it anymore.”
On Sunday night, Blackman calls Denise and apologizes. She spoke to church friends who convinced her to think about Denise’s position and what might really be best for Randy in the long term.
“I was being selfish wanting him to stay at home,” Blackman tells Denise. “I will go along with whatever you decide.”
No one fully anticipates the force of Randy’s reaction.
Jordan has just arrived back home from leaving his dad at Evergreen when Justin calls. It is almost midnight.
“Dad escaped,” Justin tells him.
Denise had battled her guilt and misgivings all night Sunday before finally deciding Monday morning that, yes, about 3 p.m. she will drive Randy to Evergreen. Justin and Stephanie will follow in their car; Jordan and his fiancee, Casey, will meet them after 4 p.m.
Denise concluded that whatever decision she made was going to be right and wrong and emotionally wrenching. But, in the long term, nursing care will be necessary and she needs to give it a chance lest she lose the room and the opportunity to place Randy at a facility she likes and trusts.
“It was going to be hard anytime we did it,” she reasons.
Shortly before 3 p.m., Denise leads Randy to their Mountaineer. She has packed nothing. No suitcases. No bags. The last time she did, it ended terribly. They were supposed to drive to St. Louis to see Justin, Stephanie and the kids. Randy refused to go.
“If I had packed any bags,” Denise says, “he would not have gotten in the car.”
She drives from their home, north to 119th Street, then west to Evergreen.
“Hey, but, hey, what is this?” Randy says as they pull up to the community.
Denise says nothing.
The Evergreen staff greets them inside. They are kind and patient. But, all around, Denise is struck harder than before by how much older and feebler many of the residents are than Randy.
As she signs papers, Randy sits nearby, unconcerned. They show him his room, No. 404, his single bed, the view of the courtyard with white arbors strung with Christmas lights.
He never takes off his coat.
Then, early in the evening, they all briefly leave to see how Randy will do. Justin and Stephanie return to the house to pick up clothes and toiletries. Jordan and Casey drive to Wal-Mart, where they buy a 24-inch flat-screen TV for Randy’s room. They meet their mom for dinner at Taco Bell.
Inside Evergreen, meanwhile, Randy walks the corridor, staring through the glass door, searching for Denise.
“She’s coming,” he says. “Hey, wait, hey. She’s out there. She’s coming.”
By the time they return, Randy’s agitation is palpable. He doesn’t have any idea what is going on. People have been going in and out.
To create calm, they set up his room: two shirts and pajamas in his closet, a framed picture of him and Denise. They place his favorite coffee mug on the dresser. Jordan connects the television and, soon after, he and Casey leave for their home. Denise, Justin and Stephanie stay. They begin to watch the late-night news.
Then Randy sees his mug.
“Oh, what’s this?” he asks.
He grabs it and shoves it inside his coat. The framed picture follows. He sees the shirts. He clutches them to his chest, hangers attached.
He sits on the edge of the bed.
“Are we going to go?” he asks. “Are we going to go?”
“You’re going to stay here tonight,” Denise says. Soon she suggests, “Randy, why don’t you put on your pajamas?”
“No,” he says, holding his belongings close.
The staff offers to give him a single Ativan, an anti-anxiety tablet, if the family approves. Randy refuses to take it.
They try to hide it in an Oreo. No.
In his water. No.
He stands and leaves the room.
“I think I need to stay the night,” Denise decides. Maybe it will calm him. She can sleep in the recliner at the end of his bed.
Justin hears a thud outside the room. Then again. He peers into the hallway and sees his dad, a few feet away, pushing against the memory unit door.
“He’s trying to get out,” Justin informs the others.
Randy pushes on the control pad, studies the card swipe. The County Lane memory unit is locked, so no one worries.
Ten seconds later, Justin looks again. His dad is gone.
Justin looks down the hall, enters the nearby common area, checks the eating areas. Randy is nowhere. Justin tells his mom. He tells the staff. He also figures out how Randy has disappeared.
Although the memory unit is locked, its eating area shares a kitchen with another part of the facility. Even with his dementia, Randy has a nearly savant sense of navigation. As best as anyone can tell, Randy, on his own, has gone through the kitchen, found the one entry into the adjoining area and then walked down two long corridors toward the front of the facility.
They hurry down the corridors. There, they find him, at the final locked door leading outside.
“Come back this way,” they try to reason. “Let’s go back down here.”
“No,” he says. “No.”
Again, he’s pushing on the door, trying to figure out the latches.
“Randy, don’t push on that,” Denise says.
That’s when it happens. Randy is not yet a resident. Nor does he look like one, a relatively young man, his arms bundled with clothes. Visitors often need to be buzzed out the final door when exiting. As a staff member picks up the phone to call for assistance, the door buzzes open as it might to any visiting family.
Randy marches to the car and stands waiting. Denise slumps, exhausted.
“We can’t do it,” Denise recalls thinking. “He’s not ready. I couldn’t drag him back in there. I couldn’t do it.”
Justin gets behind the wheel.
“We going home?” Randy asks.
“We’re going home, Dad,” Justin says.
Days later, as the first week of December passes, Denise prepares dinner.
The clock on the microwave clicks to 5 p.m. Randy, as always, grabs his Pepsi from the cupboard. He cleans his glass. He fills it to the top with ice. He places it in the refrigerator.
Back to the routine.
“Randy, do you want to close the blinds?” Denise asks.
“Clean that up?” he says, his fingers tucked in the pocket of his jeans, checkered shirt on as always. “Yeah, I’ll clean that up. OK, yeah. I’m going to do that first.”
“OK, Randy,” she says.
“But, wait, all right,” he says. “I’ll do that. And I’ll just do that first.”
Denise doesn’t regret trying to place Randy in Evergreen. She’s on the waiting list again. In the future, if it is time and she senses Randy is ready, she hopes a place will be available for him. She was impressed with their understanding.
But for now, they will look into home-based care. Her mother-in-law said she would pay for the first year. Cost, she figures: $4,000 a month. She’ll foot up to $50,000 as long as that lasts.
“I’m just taking the money out of my savings,” Blackman says.
They’re a bit concerned about how Randy will react to a caretaker in the house.
“It’s worth it for him to be home for a year,” Blackman says.
If anything was truly solved by making her decision, Denise realizes, it was family unity.
Justin and his grandmother both now know that nursing care is very likely to be a part of his father’s and her son’s future.
Maybe it’s a year from now, maybe a bit more or less.
“Everybody knows it’s not going to get better,” Denise says. “It’s only something that’s going to get worse.”
But Randy’s reaction also convinced Denise and Jordan that now obviously is not the time. Justin and Jordan became allies again in the process.
Chief among the lessons learned, Denise says, is that the consequences of any decision are always in play.
Had Randy been placed at Evergreen, she would have spent her days and nights and weekends visiting her husband and monitoring his care.
At home now, a new set of decisions presents itself, starting with how to select a caregiver.
“This is never going to be easy for anyone, or the family, no matter what we do,” she says.
Time for dinner now. Randy is ready to set the table.
“Randy, why don’t you wash your hands first?” Denise says.
She runs the water.
“Go ahead and run that up,” Randy says. “I’ll do this now. That’s what it was. And, OK, I’ll do that.
“I’ll do that first.”