Denises decision: How will know she when its time to place her husband in nursing care?

Eric Adler (via The Kansas City Star)

For Denise Thomas, the choice back then was as easy as it was joyous. They were young together in November of 1978. She, a slight and easygoing 26 year-old Johnson County girl with curly brown hair and a white dress. He was the hard-working and hard-partying Missourian a 28 year-old in a beard and suit who was once devil-may-care enough to race muscle cars down the streets of Raytown and live in a buddy s closet as a bedroom. They met through friends and became inseparable. To them, the vow was real. Do you, take Randy to be your lawfully wedded husband, to have and to hold, from this day forward, for better, for worse, for richer, poorer, in sickness and health, until death do you part? We had the best marriage, she says of so much of their 35 years together. Because of that, Denise Thomas, now 61, views the decision she knows she must soon make as one of the most wrenching in her life. It is one she already realizes may never settle as right. Emotionally, physically and financially, deciding whether to place Randy in long-term nursing care because of his early dementia is now tearing at her and her conflicted family, just as similar choices confront ever more Americans with aging or ill parents, spouses or even children. More than 1.5 million America, still a fraction of those afflicted with diseases such Alzheimers mount, the number of people in need of what is broadly known as long-term care is only expected to rise. By the year 2050, the U.S. census estimates that the elder population will more than double to 90 million. Each day, some 10,000 baby boomers turn 65. Millions already find themselves caring for their parents or spouses.

For the last decade, the preferred and less expensive trend has been for ever more of that population to receive home-based case among loved ones or in the community. Yet each, many thousands of children or spouses, out of exhaustion or worry, find they no longer posses either the energy or ability to continue as caregivers. As a last resort, they choose a nursing home. The current typical cost is $6,000 per month, an unfathomable amount for the average middle-class family. Its far from the only price paid. For months, questions have tortured Denises sleep. Should she place Randy in nursing care? When? Where? Who will pay, and how? Will she have enough to live on? What, for Randy and everyone in the family, is the best and right thing to do? You feel guilty about everything that goes along with this, she says in tears. Its a horrible decision to have to make. When she thinks of it, she measures it against the man she once knew, picturing their happiest moments always as a family, with their two boys, boating at the lake, laughing while water skiing, taking trip after trip to Destin, Fla. He always used to say, I want us to go to Europe together someday! Denise recalls. He always said we would go to Europe. But time passes. Obligations get in the way. Maybe after the boys are grown, or when they finish college, when we retire. It never happened. Now their sons, Justin 32, and Jordan, 28, find themselves in a stony and silent tension, differing not only about what is best for their mother and father whose once-sharp mind and personality have been slipping away but also about their roles in helping their parents. Randys own mother, meanwhile, healthy at 83, is deeply opposed to her only biological child being placed away, as she remains haunted by images of her own mother s time and death in a nursing home. Aware of the growing universality of her decision, Denise and her family allowed The Star to chronicle her plight. If her situation is at all unusual, she says, it is that her decision must be made for a husband, father and son who, at 63, is still so relatively young. I know she is going through absolute hell now, Jordan says. She is. We all are.

Randy? Denise calls into their Olathe home from the garage. Already she is concerned. Theirs is a modest colonial, taupe with purple shutters, purchased 27 years ago when Justin, their first born, was in kindergarten. Exhausted from work, Denise has just pulled into the garage in her 9-year-old Mercury Mountaineer. Four years ago, when it finally became certain that dementia would cause her husbands mind to deteriorate, she took a full-time job at an insurance call center to ensure she would have insurance and money. When Randys condition worsened, she reduced her weekly hours to 30. All day she wears a headset, listening to the questions and concerns of home and auto policyholders, many in crisis. Randys dementia has made him obsessive in his habits. When Denise arrives home soon after 3 p.m., he unfailingly comes to the garage. But today he hasnt. Its a first and perhaps a sign, she thinks, that he is getting worse. Randy she calls, entering the house, peering about. Randy? He appears on the second-floor landing. Oh, he says, blankly. Oh, hey. Oh. To an outside, Randy appears not just healthy but, as a once-avid runner, exceedingly fit. Short silver hair, tight silver bears, checkered shirt tucked neatly into his jeans. For most of his adult life, he worked in the concrete business a middle-class life as a finisher and a cost estimator and then as the owner of Thomas Concrete Specialists, which suited his detailoriented nature. Hey, what are you doing? Denise asks wearily. Randy tucks his fingers into his front pockets and strolled down the stairs. Denise has not expectation that he will answer cogently. Randys ability to name simple items fork, spoon, pencil left him long ago, as did the names of his wife, children and mother. They havent heard him speak their names for years. Justin and Jordan are no longer certain their father recognizes them. When they visit or attempt to talk to him he walks around them as if they were chairs. Justin, one a recent visit, found a model of a ship he and his father worked on when Justin was a child. It contained a note Randy had written, and Justin had hoped it would jog his fathers memory. But it evoked nothing.

Should strangers enter, Randy often looks past them. They might as well be transparent. At most, he surreptitiously watches them from the corners of his eyes in a vague way, as if he s trying to decide whether he seems something or not. Then, without emotion, he looks away and soon is ignoring them altogether. Hey, I just cleaned up that. Randy says to Denise, his stare steady. He approaches a stack of mail on the kitchen counter. His voice has an excited lilt. Hey, I cleaned up a lot. Thats what I did, Randy says. Hey, look, I cleaned up a lot of those things, too. I walked out there, and it did come by. I cleaned that. At first, the references seem nonsensical. Denise explains that with most of his language abilities gone, two primary verbs remain: cleaned and watered. She doesnt know why, but at this stage in Randys brain disease, he has become fixated on a few tasks. One is tending to the yard, watering potted plants and the grass, and cleaning leaves. Another is eating. A third is the mail. He waits for the mail carrier every day, pacing until he arrives. Retrieving the mail is cleaning the mail. Stacking or opening it is cleaning it. When Denise arrives home, the routine is always the same. She pulls into the garage. He is there. He checks the backseat for groceries. If there are any, he cleans them, bringing them inside. Hey, I watered those. And I watered those. I watered that a lot, he says of plants at the front and back of the house. Yes, OK, Randy, thats great, Denise says. Hey, Randy says, again focusing on the stack of mail. Denise has begun to open a letter. But what is that? What is that? Its a letter about your new prescription, the medicine youre taking, Denise tells him. She is patient. Oh, Randy says. But het, what is that? What is that? What, what, what, what is that? Oh, huh. Denise explains again. Its about your medicine, Randy. OhI cleaned that a lot, he says. But, hey, that was that. And that was that. But that was that first. Oh, and that came by, too. But, hey, what is that?

So it goes, letter after letter, until Denise is finished with the stack. Then, as Randy waits for dinnertime, the house and couple fall into an empty silence that has been going on for so long that Denise no longer remembers that last time she spoke to the Randy she once knew. People ask me what we talk about, she says. I tell them: nothing.

Of the 800 or so dementia patients being tracked by the memory research team at the University of Kansas Hospital, only 40, including Randy, have what is called FTD, frontotemporal dementia. Like its notorious and more common relative, Alzheimers disease, FTD is a degenerative brain disease of unknown cause that somehow leads to a buildup of damaging proteins in the brain, impeding its function and forcing it to wither. Alzheimer s afflicts about 70% of the 5 million people in the United States with dementia. FTD accounts for about 5 percent. What sets FTD apart is whom it strikes and how. Unlike Alzheimers, which generally begins by affecting memory in the elderly, FTD targets younger people, men more frequently that women, and accounts for more than half the dementia cases in people younger than 65. First signs usually crop up in the mid to late 50s. But Ive seen it in people in their 30s and heard of in the 20s says neurologist Jeffrey Burns director of KYs Alzheimers Disease Center, where Randy has been evaluated. Equally devastating is how it strikes. It may be the most difficult disease in terms of family and living with it, Burns says. Theyre all bad. Alzheimers is terrible. Theyre all tragic. Of the cases Ive seen, those with (FTD) are often the most tragic. Variants of FTD exist. All devastate language and understanding either early or later. But FTD also infiltrates those parts of the brain that control judgment and emotions in a way that utterly changes personalities and behavior. It happens at such a young age and so unexpectedly that family, friends and co-workers frequently have no idea whats going on.

A person who was always warm and kind can turn hypercritical and mean. Empathy and emotional connections become nonexistent. Whatever veil of propriety exists in the brain to keep people from saying inappropriate things gradually thins to nothing. Behaviors can turn impulsive, rash, obsessive. People often dont recognize it as a brain disease, Burns says. Instead they wonder whether loved ones are going through midlife crises, affairs, depressions or emotional breakdowns. Separations and divorces are common. Everything about their personality can change, from their style of clothing to food preferences, says Burns. Life can go on like that for years before a diagnosis is made, if ever. I had a patient once, Burns says of a woman in her late 50s, who raised a family and was an upstanding citizen. Then she had a falling out with her family and moved out and took all her clothes to the church and gave them away. She bought a whole new wardrobe from the flea market. She picked up some guy at the bus stop who promised to move in with for a while, and then he stole all of her stuff and moved out. This is someone who from a responsible person to someone who was irresponsible and did not care. The failed marriage devastated the kids. She became this whole different person. It was no midlife crisis. It was frontotemporal dementia. By the time I saw her, she had been divorced and been through a couple of years of this behavior and in a couple of pysch wards, Burns recalls.

Denise Thomas understands all too well. Part of her guilt in deciding when or whether to place Randy in nursing care goes to nearly nine years of incredible strain and confusion in their marriage. By nature, Randy had always been the kindest of men, his friends and family say. He was witty. He had a dry sense of humor. He was a real guys guy, says his son Jordan, who is engaged to be married and applying to nursing school. He worked on cars. He liked guns. He liked history. He liked airplanes. He was the kind of guy who could fix anything. My car broke down in high school or whatever, it was something Dad would fix. For Randy, there was a time to work and there was a time to play.

Even in the days before he began his own concrete business, his family cannot recall him ever missing a day of work. Obsessive, regimented qualities revealed themselves even then. Failure met anyone attempting to wrest him from Saturday chores around the house. But when Randy Thomas let loose, he let loose. The four best friends he made after leaving Raytown South High School Stiegler, Pitts, Fergie & Smith remained his best friends for life. Every party ended too early for Randy. On weekends back from college in Warrensburg, Mo., the bards of Westport and elsewhere became home base. He was a late-night guy, Dave Stiegler says. He enjoyed drinking and partying and, Hey, whats next? Where do you guys want to go? Greg Pitts met him while racing down U.S. 50. He always had a hot-rod car. He had a GTO. He had a Corvette. They race, tied and became fast friends. He was one of those guys you never saw him in a bad mood. Ive never known Randy to raise his voice, friend Jack Ferguson of Lees Summit says. He walked in the room, and he had a smile on his face. One night out, he met Denise. From then on, no other girl mattered. They married. The kids came. Justin now lives in St. Louis with his wife and two children and works as a salesman for Winchester Ammunition. When he talk of his dad, its of an active guy who left no stone unturned. Every minute of every vacation was planned. Among the cruel ironies of Randys disease, robbing him of his language, is that he loved telling stories, about his former wild times with his friends, but also about bizarre mysteries. Books on pirates and sunken treasure sparked his imagination. Tales of the occult, of ghosts and ghouls, fascinate him. Late nights, on vacation drives across the country, he would listen enraptured to radio host Art Bell spinning stories of the paranormal. He loved haunted houses, Justin recalls. Justin tells the tale of how his dad, never wanting Justin or his friends to drive home drunk from bars, was willing to give them rides at any hour. One time, he picks us up. Its me and all my friends in the van, Justin says. were all older than 21. He starts driving us around Kansas City, Kan., to Sauers Castle. Sometimes he would go there on his lunch breaks. He would just go eat lunch there and watch it.

Were in the van and hed pull up and park and tell us, Heres the story on this one. Then wed go another one. Everyone loved it. Which is why it was so unsettling when it all began to change. Only in hindsight does the family see that the shift in Randys behavior began to show about nine years ago, when he was about 54, and just as Justin was preparing to marry Stephanie. Denise and Randy had known and loved Justins high school sweetheart for years. Suddenly one summer day, Justin recalls, his father turned uncharacteristically harsh toward their marriage. Although they were 24, he said he thought they were marrying too young. Justin and Jordan noticed something else, too: His stories were gone. He got harder to talk to, Justin says. He wasnt interested or animated. At home, worse, he was turning mean. Never critical of Denise in the past, he began calling her fat. Money became an obsession. He made lists and charts, pointing out how much more he was supporting the marriage than her. Arguments erupted. Whatever was once caring or empathetic about Randy disappeared. His behavior turned inappropriate, his social boundaries lost. During one party, his family says, he walked around with a picture of a magazine model in his wallet. She was the pretty daughter of a college friend. To one person and then the next, he unfolded and displayed the picture, saying, Look at this. This is my friends daughter. I was so unhappy, says Denise, who had no sense of what was wrong. Is it a midlife crisis? Why is he treating me this way? I couldnt talk to him. I would try, and it would be, Theres nothing going on. Nothings wrong. Im OK. Meanwhile, Randys trouble with words and memory had begun to show. One weekend, Randy helped Jordan move an entertainment center. Later that day, he not only couldnt remember the name of the piece of furniture, he didnt remember moving it. Randy, Denise recalls saying, youre scaring me. He began forgetting the most basic things: names of friends, the name of his favorite movie. The forgetfulness was stress, Randy said. The general doctors she insisted he see agreed.

For Denise, one of the most hurtful moments came in the summer of 2005 on a couples trip to New Orleans only a few months before Hurricane Katrina. They were getting on a boat for a tour. Denise slipped and smashed her arm on the dock, sending her to the emergency room. The hospital put her arm in a sling and gave her pain pills but failed to diagnose the problem: a fractured left humerus, the large upper arm bone. For the next three days, she remained either loopy on pills or grimacing in pain. Randy couldnt care less. He didnt walk next to her. Hed leave their hotel room on his own with no mention of her injury. He had no empathy, Denise says. When a neurologists diagnosis of dementia finally came nearly four years later, in February 2009, she accepted it with sadness and relief. Relief because she now knew why Randy had changed so much. The misery that had become her marriage was neither his fault nor hers. Up to the very day and even after he was diagnosed unable to name items such as a pen or computer mouse Randy continued to insist there was nothing wrong with him. Those doctors dont know what theyre talking about, Denise says he would say. Sad because she also now knew what the future held. People with FTD can live up to 20 years with the disease, but most patients live an average of eight years after being diagnosed. Randy is now close to five. Denise thought of the decisions she would be forced to make and, until the diagnosis, the one she almost did. I was seriously preparing to leave him, she says. I feel terrible. I often wonder what would have happened if I had divorced him without knowing what was going on. What if the diagnosis had come after I left? What would have happened to him then? She stayed.

In the kitchen, the microwave clock blinks over to 5 p.m. As if triggered by remote control, Randy stands up from a chair in the living room and walks to a kitchen cabinet. Five oclock on the dot, Denise says. Not 5:01, not 4:59. At 5 every night, Randy grabs a clean glass from the cabinet, turns to the sink and washes the glass over and over, filling it with water, pouring it out, filling it again, pouring it out.

He turns to the refrigerator, opens the freezer door and crams the empty glass to the top with ice, which he then places inside the freezer, along with a can of Pepsi. Its his preparation for dinner. Tonight, Denise is heating chicken nuggets and green beans. Water boils for macaroni and cheese, one of the kids meals that have become Randys favorites. Ooh, ooh, Randy says, looking at the boiling water. Oh wow. He paces the kitchen, coming back to the water. Oh, he says, another thing, I could eat that thing, and later I can do that. A dryer nearby tumbles with dish towels. Another habit: Randy likes to fold them. Yeah, Denise says. You can eat first. You dont have to do the towels first. Look, oh, wow, Randy says, his attention shifting between the water and the dryer. Thatll come by in a little bit or, or, hey, another thing, I can just do it later, oh, oh Oh? Wait. Dinner will be ready soon, Randy. You dont have to do the towels now. Over the next 10 minutes, she will tell him this again and again and again. In her most despairing moments, Denise likens her life to years of the movie Groundhog Day, in wh ich the main character lives out the same day over and over. Hey, Randy says. Hey, that is I mean, that did come by some other time, but, but Ill just do it later. Its not a movie. Hes my husband, Denise says. If only she had some idea of what, if anything, Randy perceives or thinks or feels or whether it even matters that he is in his home with her. They never got a chance to talk seriously about his wishes regarding nursing care. I do know that he wouldnt want me to go through this, she says of her decision. Her sense, of course, is that Randy is comfortable here, in his own home, with his routines. Most days for Randy are largely the same: He gets up early with Denise and makes her coffee, something he still remembers, then he returns to bed until nearly noon. He dresses, waters the plants or rakes leaves. He waits for Denise. They go through the mail. He eats. They watch TV in silence. These days, shes been helping bathe him, as hes been forgetting to us e shampoo and soap. He goes to sleep. Then it begins again.

Twice a week there is some variation when Randys mother, Anna Blackman, drives over from Lees Summit at noon to take her son on outings of their own. Its devastating to me that hes in this condition, his mother says. She is convinced that if he is placed in a nursing facility, his condition will worsen. The change in routine will upset him, she fears, and he will require forced sedation. It will only hasten his death. I hate to see him go there, she says. I think it will be the end of him. Older son Justin, in many respects, feels the same, while Jordan differs. Meanwhile, everyone, including Denises two sisters, worries about her health. All ar e aware of how common it is for overwhelmed caretakers to die from exhaustion or stress, long before the people they care for. Right now Randy appears to be relatively safe on his own for the hour or so before his mom comes by, or the few hours before Denise arrives home. She hasnt yet hired a home health care aide. At $20 an hour, they make more than she does. This isnt to say there havent been scares more in the past, in fact, than now. Denise worries. More than once, Randy wandered away from home. Once he was found miles away walking among the Ford Mustangs at a car dealership. Neighbors have found him peeping in their windows. He once wandered into a neighbors house. Police were called after he tried to enter another. Once, when he could still drive, they found he had gone for miles with a flat tire, rattling on the naked rim. Denise immediately took his keys and license. Everybody, everybody was against me, she says. They said, What is he going to do? I said, Would you give a 10-year-old car keys? Because thats the speed hes operating at right now. At home, he nearly electrocuted himself by grabbing wires exposed when the homes power box detached from the side of the house. More recently, Denise and Justin had to tug barbecue chicken wings from his hand when he tried to eat them, bones and all. Not too long ago, Denise was upstairs when she heard an odd sound in the kitchen. Downstairs she found Randy with a pocketknife and a beer. Unable to pop the flip-top, hed sliced the top off the can and was ready to drink from the jagged aluminum. Nobody wants to place anyone in a nursing home, Denise says. But she also doesnt want to be unprepared for the day when, inevitably, it becomes necessary.

In March, she began researching and visiting, entering nursing homes that smelled like urine and others where the residents seemed to sit in sad, lonely isolation. Without long-term care insurance, Denise already knows that paying the $6,000-amonth bill is beyond her abilities. She has hired an elder care attorney to help sort through options. Its completely overwhelming, she says. Tomorrow is her second appointment with someone who will help see her through the confusing maze of Medicaid and savings accounts and division of assets. Meanwhile, she has put Randy on a waiting list at a place called Evergreen, a skilled nursing facility in Olathe that began long ago as the Johnson County Poor Farm. It takes Medicaid. It is near her work. And over the years it has won awards for its progressive and humane care. Even now, should the phone ring telling Denise that a place is ready for Randy, she has no idea what she would do. They are married. He is her husband. How does one just pick up and displace a spouse from the home and life they have shared for decades? I cry all the time, Denise says. I pray to God for guidance. The rest of the night passes in silence. Monday: Denises emotional decision is compounded as she wrestles with the overwhelming cost of care.