To Anna Blackman, Randy Thomas is still her little boy.
ìOh,î Randy says, as his motherís minivan heads west to a red light on 151st Street in Olathe. ìThat oneís closed.î
It changes to green.
ì Oh, hey!î he says. His voice rises with excitement. He peers from the passengerís seat up through the windshield. ìItís open now! Hey, yeah, that oneís open.î
At 63, Randy Thomas is defined by a rare form of dementia that has stolen much of his language and nearly all of the sharp, adventurous spirit he once had.
At each green light itís the same: ì That oneís open.î And red: ìItís closed now. Oh, that oneís closed.î
But when his mother, who is 83 and lives in Leeís Summit, stares into her sonís face, she still sees the child she had just short of her 20th birthday. The boy who, she says, was not well-loved by a biological father who never wanted children. After Blackmanís divorce when Randy was nearly 12, she raised him to adulthood on her own.
ìIt was just Randy and me,î says Blackman, who later remarried. But even before the divorce, it was always Randy and her taking on the world.
So it now rips at Blackmanís heart to know that Denise, Randyís wife, is struggling with whether to place Randy in a nursing facility. That final, difficult decision lies ultimately with Denise, Blackman understands, but it also is a family matter.
And this family is torn.
ìThe whole family has completely changed since the diagnosis,î says Jordan Thomas, 28, the younger of Randyís two sons and who, coincidentally, works at a long-term care facility. ìI feel that before we were all one big unit. I feel like now itís all become disorganized. We have internal fights. Words have been exchanged.î
Whereas Jordan thinks, like his mother, that perhaps it is finally time that his father be moved into the care of others, Justin, his 32-year-old brother, agrees with their grandmother.
Justin would rather have his father stay, at least a little while longer, in the home where he feels comfort in his patterns and routines. When Justin last year landed a good job with Winchester Ammunition that moved him and his young family to St. Louis, he went sleepless with guilt for not being closer to help care for his dad and mom.
In no way could he say no to the job. The economic recession had hit him hard.
ìIf we lived here. And I wish we could Öî Justin says on a recent visit. He stops talking. His voice chokes with emotions. His eyes pool with tears.
ìEverybody can only do so much, Justin,î Denise says, consoling.
ìIím sorry,î he says, head bowed, ìI feel bad.î
ìJustin, you canít feel bad,î his mom says.
ìBut if we lived here Öî he says.
Blackman, meantime, fears that placing her only child in a nursing home will just worsen his condition and hasten his death.
ìI just hate to see it happen,î she says. ìMy mom died in a nursing home. I hate nursing homes.î
Healthy and vital, Blackman in no way seems elderly.
A woman of sharp intelligence, she went on to receive a college degree after being a teenage mom and later earned her masterís degree. She spent 30 years teaching elementary schoolchildren in the Raytown School District, 11 of those years in the gifted-student program. When she remarried in 1970, it was to Russell Blackman, a World War II veteran who later lost a leg to cancer and prospered as the owner of C.H. Blackman & Son Funeral Home. Three stepsons came with the marriage.
When her husband died at age 82 just before Christmas in 2005, it was after a short rehabilitation at John Knox Village Care Center, while convalescing from a heart illness. Years earlier, when Blackmanís father was sick, she went through three at-home nurse aides, only one of whom was ìtolerable.î One stole her fatherís car, later found in Florida.
So Anna Blackman understands what Denise is going through. She loves her daughter-in-law, and vice versa. ìSheís amazing,î Denise says of Randyís mom.
Everyone in the family knows that, eventually, full-time nursing care will become necessary for Randy as the disorderís protein deposits progressively hinder the functions of his brain.
Life expectancy varies for people diagnosed with frontotemporal dementia, or FTD. Most people live about eight years after diagnosis, although some can live many years longer. Itís hard to predict. Randy was diagnosed five years ago.
ìIíd honor her choice,î Blackman says of Denise, should she decide to place Randy. ìIíd be against it. Iíd be upset. But I know, for Denise, itís really hard for her.î
The problem is that itís just so difficult to know whatís best for her son without really knowing whatís going on in the remnants of his mind and emotions.
ìItís devastating to me that heís in this condition,î Blackman says. ìItís like heís back to a child.î
Blackman wheels her minivan into a McDonaldís parking lot off Kansas 7 near 151st Street.
Mother and son have a routine. Twice a week, while Denise is at work, Blackman picks up Randy.
On Mondays she takes him to lunch and then back to her home in Leeís Summit. He falls into his patterns there ó vacuuming, cleaning up leaves, putting away dishes, checking for and getting the mail. Although it seems like work done by rote, every now and then Blackman senses that maybe there is more of an internal life to her son than he can reveal.
Like the time when he was given a new shirt. Every day he prefers to wear the same checkered shirt and jeans. But this one day, Blackman explained to him several times that she wanted him to put on the new one. He didnít seem to understand.
ìThen he came out of his room with the shirt on,î Blackman says.
Earlier this summer, Denise and Randy were looking at a calendar for August, the month that marks both their birthdays. When Blackman arrived at their home to pick up Randy, he got in the minivan holding a Hallmark envelope. He pointed to the emblem, and they drove to a store.
ìHe picked out the prettiest and biggest card,î Blackman says.
More recently than that, Blackman was flipping through family photographs. Randy pointed to an image of his younger son. No one was sure he even recognized his children any longer. He hadnít spoken a family memberís name in at least two years.
ìJordan,î he said.
On still another occasion, after a visit by Justin and his family, he retrieved a framed photograph of Justinís family that was in Blackmanís house.
ìHe picked up that picture and took it over to Denise,î Blackman recalls. ìShe said, ëYeah, they have already gone back home.í He knew that that was who had been at his house.î
Although the disease ostensibly stole Randyís ability to show care or feel empathy long ago, when he leaves his motherís home he still hugs her. Maybe that merely reflects the ups and downs of a confounding brain disease. Blackman wonders: Will there really be anyone around at a nursing home like her, or Denise, who can relate to him in this personal way?
ìI feel a sense of helping him,î she says of their time together, though sheís never quite certain. ìI hope Iím doing some good.î
On the second outing each week, Blackman first drives Randy to lunch at the McDonaldís off Kansas 7 and then to Hollywood Casino near The Legends in western Wyandotte County. The old Randy, careful with his money, would never have gambled. Now, with his inhibitions gone, ìitís his one enjoyment,î Blackman says.
At McDonaldís, his order is always the same. Quarter Pounder with cheese, chicken McNuggets, hot fudge sundae and a Coke. The cashiers know him. The bill: $11.21 for both their meals. Blackman pays the $11. Randy, who doesnít like change in his pocket, contributes the 21 cents.
ìHe always gives the change,î says Blackman, who then heads to a booth. As Randy eats, he hums constantly and loudly, like a child happy with his food.
ìHe hummed like that when he was a little boy,î Blackman says, watching her son, his head down, eating without stopping. ìHis father used to get mad at him for it. Ö Now heís back to doing it.î
They drive toward the casino.
ìOooh, thatís a lot of things out there, too!î Randy says, looking west. Blackman glances west, too, and sees a long train heading north.
ìYeah, itís a coal car,î Blackman says.
ìOoooo, thatís a lot of things,î he says.
At Hollywood, the air redolent with cigarette smoke, Randy winds his way through the thicket of lights and bells and spinning wheels of the penny slot machines. A thick wad of $20 bills sits in his hip pocket. Surprisingly, or maybe not, luck often smiles his way.
ìHe wins more than he loses,î Blackman says.
Randy eyes the machines: Texas Hold íEm, China Shores, Zeus II, Hot Hot Harpooner Ö
Itís unclear whether he knows or can read the names, but he seems to remember which ones paid out in the past.
ìOoo, that one did come by,î he says. ìThat one did come by a lot.î
He sits at the machines, one after the other, and slips in the $20 bills and the gaming card that tallies his bets. His mother stands at his side. She only watches. At each machine, at each press of the button, about once every three seconds, Randy bets the maximum allowed, $1.50 or $2 or $2.50.
The slots roll. The money dwindles, down $5, $10, $15, $20. But then, up, he wins some. Down, he loses again. Up. Down.
The Randy she raised would never have gambled this way. She recalls how much her stepsons admired Randyís financial skills, how they sought his help to find bargains.
ìRandy, you want to quit and go somewhere else?î Blackman urges her son. ìWhy donít we quit.î
But the disease has rid him of reasonable fear. Where others might leave, Randy continues. Up. Down. But soon lights flash. Bells ring. Up $5. Up $20. Up $40.
ìThat did come by. That did come by a lot,î Randy says, his voice rising, but his face showing no great excitement. ìOh, hey, that one did come by.î
Yet heís not foolish. More machines: Choy Sun Returns, Rome & Egypt Ö
ìHey, should I do that one? I could just do that. Should I run that?î
At machines that donít pay off quickly, he stays only a minute or two, ejects his card, and moves on.
Again, knowing what Randy knows and doesnít know is confusing. Obviously, Blackman thinks, her sonís brain and memory work on some level. When they drive to the casino, or almost anywhere in town, heís like GPS, remembering every turn at every street, although he canít name them.
At Kronos, another penny slot, Randyís eyes narrow in a look of consternation.
ìI donít think that one came by. It didnít come by there,î he says.
Blackman explains what he remembers: ìHe used to win on this one, but he hasnít in a while.î
At a Hotshot slot, Randy slips in his bills and card.
ìWhy donít you quit?î his mother cautions again as the losses mount.
The machine suddenly jolts to life in blinking lights and bells. Money mounts in a big win.
ì Boy,î Randy says, ìit did come by a lot further. Maybe Iíll do that temporarily.î
ìHe says ëtemporarilyí a lot,î Blackman says.
ìMaybe it will come by again,î Randy says.
ìThen we have to go,î his mother insists. Itís nearly 3 p.m.
Theyíve been at the casino a bit more than two hours.
At home, Randy will organize his money into $100 piles of $20 bills, spreading it on the living room couch.
ìHey,î heíll say, fanning the money out to Denise, ì that was that. And, hey, yeah, that was that, too. It came out a lot.î
Then, as Denise and Blackman well know, heíll hide his money away until next week. Winnings: about $120. The disease has caused him to become something of a hoarder.
When Denise talked to the people at Evergreen, the nursing facility in Olathe that she is considering for Randy, they assured her that the trips to McDonaldís and the casino or to be with family need not end. They could visit and take him on outings as often as they would like.
If Evergreen calls to say that it will have an opening soon, Denise is still unsure what she would do. Exhausted, she is leaning toward placement. Her mother-in-law has said she would offer to help pay the $20 an hour or so it costs for some at-home care and even suggested that perhaps Randy and Denise could move into her home in Leeís Summit.
Deniseís two sisters, meantime, are adamant: Because nursing care inevitably will be needed, it is time for Denise to reclaim part of her life, they feel. Nine years of illness and care is a long time.
ìI have a lot of self-doubt,î Denise says. ìI think Iím worried about displeasing other people in the family.î
For Blackman, the possibility of a nursing home became that much more emotionally charged after she and Denise took Randy on a drive into Oak Grove. They wound down a country road and headed up a hill. A house sat at the crest. Something sparked.
ìThatís mine,î Randy said, recognizing the home he lived in until age 5.
ìI dread it,î Blackman says of a nursing home.
Then, on Monday, Nov. 18, Denise receives a phone call. The day marks her 35th wedding anniversary.
Itís Evergreen. The facility has an opening.
Time to decide.
Wednesday: After an agonizing weekend, the outcome of Deniseís decision surprises all.
To reach reporter Eric Adler call 816-234-4431 or send email to firstname.lastname@example.org