A family torn by disease

ERIC ADLER
Last updated 05:00 30/12/2013
dementia family
Tammy Ljungblad/ MCT

MOTHERLY LOVE: Twice a week, Anna Blackman, 83, left, dines with her son, Randy Thomas, 63, at McDonald's. They share no conversation, but yet Blackman believes the meals are enjoyable for her only son, who suffers from dementia.

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To Anna Blackman, Randy Thomas is still her little boy.

"Oh," Randy says, as his mother's minivan heads west to a red light in Kansas, USA. "That one's closed."

It changes to green.

"Oh, hey!" he says. His voice rises with excitement. He peers from the passenger's seat up through the windshield. "It's open now! Hey, yeah, that one's open."

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 it's the same: "That one's open." And red: "It's closed now. Oh, that one's closed."

But when his mother, who is 83, stares into her son's 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 Blackman's divorce when Randy was nearly 12, she raised him to adulthood on her own.

"It was just Randy and me," 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 Blackman's heart to know that Denise, Randy's 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.

"The whole family has completely changed since the diagnosis," says Jordan Thomas, 28, the younger of Randy's two sons and who, coincidentally, works at a long-term care facility. "I feel that before we were all one big unit. I feel like now it's all become disorganised. We have internal fights. Words have been exchanged."

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.

He could not say no to the job. The economic recession had hit him hard.

"If we lived here. And I wish we could ..." Justin says on a recent visit. He stops talking. His voice chokes with emotions. His eyes pool with tears.

"Everybody can only do so much, Justin," Denise says, consoling.

"I'm sorry," he says, head bowed, "I feel bad."

"Justin, you can't feel bad," his mum says.

"But if we lived here ..." he says.

Blackman, meantime, fears that placing her only child in a nursing home will just worsen his condition and hasten his death.

"I just hate to see it happen," she says. "My mum died in a nursing home. I hate nursing homes."

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 mum and later earned her master's degree. She spent 30 years teaching elementary schoolchildren, 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.

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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 Blackman's father was sick, she went through three at-home nurse aides, only one of whom was "tolerable." One stole her father's car, later found in Florida.

So Anna Blackman understands what Denise is going through. She loves her daughter-in-law, and vice versa. "She's amasing," Denise says of Randy's mum.

Everyone in the family knows that, eventually, full-time nursing care will become necessary for Randy as the disorder's 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. It's hard to predict. Randy was diagnosed five years ago.

"I'd honor her choice," Blackman says of Denise, should she decide to place Randy. "I'd be against it. I'd be upset. But I know, for Denise, it's really hard for her."

The problem is that it's just so difficult to know what's best for her son without really knowing what's going on in the remnants of his mind and emotions.

"It's devastating to me that he's in this condition," Blackman says. "It's like he's back to a child."

Blackman wheels her minivan into a McDonald's 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 Lee's Summit. He falls into his patterns there - 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 didn't seem to understand.

"Then he came out of his room with the shirt on," 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.

"He picked out the prettiest and biggest card," 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 hadn't spoken a family member's name in at least two years.

"Jordan," he said.

On still another occasion, after a visit by Justin and his family, he retrieved a framed photograph of Justin's family that was in Blackman's house.

"He picked up that picture and took it over to Denise," Blackman recalls. "She said, 'Yeah, they have already gone back home.' He knew that that was who had been at his house."

Although the disease ostensibly stole Randy's ability to show care or feel empathy long ago, when he leaves his mother's 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?

"I feel a sense of helping him," she says of their time together, though she's never quite certain. "I hope I'm doing some good."

On the second outing each week, Blackman first drives Randy to lunch at the McDonald's 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, "it's his one enjoyment," Blackman says.

At McDonald's, his order is always the same. Quarter Pounder with cheese, chicken McNuggets, hot fudge sundae and a Coke. The cashiers know him. 

"He always gives the change," says Blackman, who then heads to a booth. As Randy eats, he hums constantly and loudly, like a child happy with his food.

"He hummed like that when he was a little boy," Blackman says, watching her son, his head down, eating without stopping. "His father used to get mad at him for it. ... Now he's back to doing it."

They drive toward the casino.

"Oooh, that's a lot of things out there, too!" Randy says, looking west. Blackman glances west, too, and sees a long train heading north.

"Yeah, it's a coal car," Blackman says.

"Ooooo, that's a lot of things," 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.

"He wins more than he loses," Blackman says.

Randy eyes the machines: Texas Hold 'Em, China Shores, Zeus II, Hot Hot Harpooner ...

It's unclear whether he knows or can read the names, but he seems to remember which ones paid out in the past.

"Ooo, that one did come by," he says. "That one did come by a lot."

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 Randy's financial skills, how they sought his help to find bargains.

"Randy, you want to quit and go somewhere else?" Blackman urges her son. "Why don't we quit."

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.

"That did come by. That did come by a lot," Randy says, his voice rising, but his face showing no great excitement. "Oh, hey, that one did come by."

Yet he's not foolish. More machines: Choy Sun Returns, Rome & Egypt ...

"Hey, should I do that one? I could just do that. Should I run that?"

At machines that don't pay off quickly, he stays only a minute or two, ejects his card, and moves on.

Again, knowing what Randy knows and doesn't know is confusing. Obviously, Blackman thinks, her son's brain and memory work on some level. When they drive to the casino, or almost anywhere in town, he's like GPS, remembering every turn at every street, although he can't name them.

At Kronos, another penny slot, Randy's eyes narrow in a look of consternation.

"I don't think that one came by. It didn't come by there," he says.

Blackman explains what he remembers: "He used to win on this one, but he hasn't in a while."

At a Hotshot slot, Randy slips in his bills and card.

"Why don't you quit?" 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.

"Boy," Randy says, "it did come by a lot further. Maybe I'll do that temporarily."

"Temporarily"?

"He says 'temporarily' a lot," Blackman says.

"Maybe it will come by again," Randy says.

"Then we have to go," his mother insists. It's nearly 3 p.m.

They've been at the casino a bit more than two hours.

At home, Randy will organise his money into $100 piles of $20 bills, spreading it on the living room couch.

"Hey," he'll say, fanning the money out to Denise, " that was that. And, hey, yeah, that was that, too. It came out a lot."

Then, as Denise and Blackman well know, he'll 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 McDonald's 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 Lee's Summit.

Denise's 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.

"I have a lot of self-doubt," Denise says. "I think I'm worried about displeasing other people in the family."

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.

"That's mine," Randy said, recognising the home he lived in until age 5.

He remembered.

"I dread it," Blackman says of a nursing home.

Then, on Monday, November 18, Denise receives a phone call. The day marks her 35th wedding anniversary.

It's Evergreen. The facility has an opening.

Time to decide.

-MCT

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