THE VIRGINIAN-PILOT
Copyright (c) 1994, Landmark Communications, Inc.
DATE: Monday, July 25, 1994 TAG: 9407220496
SECTION: DAILY BREAK PAGE: E1 EDITION: FINAL
SERIES: SPECIAL ALZHEIMER'S REPORT
Part 2
SOURCE: BY DEBRA GORDON, STAFF WRITER
LENGTH: Long : 506 lines
In February 1994, Tom lost his right leg.
Oh, it was still there - physically. But in his mind, he couldn't remember he had a right leg.
In the morning, he'd pick up his right sock and shoe and bring them out to Hazel, a puzzled look on his face. He knew they went somewhere, but where?
He could still use the bathroom, but he didn't know how to wipe himself or flush. Hazel did that for him.
She also bathed him, because he'd forgotten how to wash his hair, and, without the memory of a right leg, wouldn't wash that side of his body.
He was at Sentara Adult Day Care two days a week now, courtesy of a grant from the local Alzheimer's Association. It was the only assistance, except for Social Security, he could get.
He didn't qualify for Medicare because he wasn't old enough and hadn't been sick long enough. He didn't qualify for other social programs available to the elderly, like respite care, because he wasn't old. He just had an old person's disease.
Tom loved day care. It stimulated his mind, gave him something to do. The staff took their charges on walks, played bingo, had them cut pictures out of magazines.
As grateful as she was for the break though, the thought of what he did there nauseated Hazel.
``Tom's a man, not a child,'' she'd told Angie when the girl suggested projects to keep Tom busy at home, like making Valentines out of paper plates and doilies. ``I can't see doing things like blowing bubbles with him.''
But Tom was a child. Like a child, he was restless, following her around the house all day, even into the bathroom. He loved sweets, and would hide candy bars under the bed, behind the dresser, where they'd melt into a mess Hazel would find months later while cleaning.
The high point of his day was watching ``Little House on the Prairie'' every morning. It was the only hour Hazel had to herself to get some housework done.
On this bleak, cold morning in mid-February, as Tom folded and refolded clean towels in the den, Hazel sat at the kitchen table, its sticky top still littered with breakfast dishes, and sorted through the monthly bills.
The electric bill for January was $425. With that figure staring her in the face, she reached a decision.
She had to sell the house.
It was part of the planning she'd started to do. She knew Tom had a year, maybe two, before he died. When he died, the Social Security checks would stop.
She had to get a job.
If only she could get him in day care five days a week, she thought. But the $20-a-day cost was beyond her budget.
Maybe next week, when he went to NIH for his two-week annual evaluation, she thought, maybe then she could start a real search for a job.
Feb. 15
It was one of the worst ice storms to ever hit the Mid-Atlantic states, and the radio announcers had one message - keep off the roads.
Hazel gripped the steering wheel of her small, red Toyota so hard her knuckles were white. Tom was due at NIH for his annual evaluation, and she was not going to miss it.
The past week had been hell. One of the few things Tom could remember was his visits to NIH for scans of his brain.
He hated them.
All week he'd been nervous. He came in one day from day care and hid behind the piano, crouching there like a terrified child. Every night he was up, pacing, muttering. The Nazis are coming, he told Hazel. They're coming to get me.
What should have been a three-hour trip took twice that, and it was 1:30 by the time they reached Bethesda.
The dementia unit at NIH is a small ward. Four double rooms open up into a central living area, decorated with mauve wing chairs, a flowered couch, even a fake mantlepiece with candlesticks.
The chairs, however, are vinyl - most of the patients here are incontinent; and the magazines and books on the coffee table are for the families and staff - the patients can't read.
Tom, wearing a thick, white cableknit sweater, jeans and topsiders, looked more like a man ready for a weekend skiing trip than a hospital patient. In stark contrast to the only other patient there, an elderly woman whose husband spooned scrambled eggs into her mouth, Tom was bursting with vitality, his cheeks ruddy, his black hair thick.
Tomorrow, his two brothers were due from West Virginia. Both were exhibiting signs of Alzheimer's and NIH wanted blood samples to test for genetic markers. It was a test Hazel both dreaded and wanted; the results would determine Angie's fate.
Angie and her friend Stacy, brought along as a distraction, disappeared into the hospital. They rode the elevators, visited every floor collecting information for a school project, raced wheelchairs down the deserted halls.
Hazel didn't try to restrain her. It was the first time in weeks she'd seen her acting like a kid again.
Besides, she had enough to deal with Tom.
He was angry. Furious, really. He blamed her for the tests he had to undergo. He sat with his arms crossed over his chest, staring sullenly at her.
``Look here, Tom, your favorite fish, salmon steak,'' Hazel said as the nurse brought in the supper tray.
He ignored her and walked into his room.
Undaunted, Hazel followed with the tray. She buttered his roll, poured his juice, cut up his fish.
``Look, Tom, that looks like cream of mushroom soup,'' she said.
But he just picked at the food. Then he asked everyone to leave.
``He's really mad at me because I'm putting him here and he doesn't want me to leave,'' Hazel said to the nurse.
``I'm upset that he's so upset. I don't like to see him hurting, but I know this is very, very important. These tests have to be done because if there are any resources to help, Tom will be the first one to get it. And what they learn here might help others like him. I would take him anywhere if I thought it would help him.''
Tom's doctor arrived, and they went into the conference room for the admitting conference.
``Does he speak complete sentences?'' he asked.
``Rare, very rare,'' said Hazel. ``More typically he says, `get me that thing,' and I'm totally confused because I have no idea what that `thing' is.''
``Has his personality changed?''
``He's become more stubborn.''
``Same range of feelings from high to low?''
``No. They're more exaggerated. If Angie starts to cry, he starts crying.''
``Hyperactive?''
``Yes, a lot. He's also depressed a lot. Says he just wants to get it over with. Has crying spells. He has ideas of guilt, like he's let others down. He expresses hopelessness that things will never improve.''
``It is pretty hopeless,'' agreed the doctor.
He handed her the forms to sign. PET scan. Lumbar puncture. Arterial catheter. Two MRIs, an HIV test. The first time they came here three years ago, Tom signed all the forms. Now she had total power of attorney.
They walked down the hall to visit Tom.
``Hi, Tom,'' said the doctor cheerfully. ``What did you have for dinner?''
Tom looked at the dinner tray in front of him. ``I don't know,'' he mumbled.
Feb. 24
The PET scan room is down corridors crowded with file cabinets, past the tiny rat-hole warrens where the researchers work, through the modern, brightly lit lobby, into a maze of hallways lined with shelves.
The machine itself looks like a giant, black donut. Tom will be slid into the hole and the machine will take pictures of his head as radioactive water travels into the arterial catheter in his arm, through his arteries and into his brain.
Tom was white, silent. A technician put a piece of soft rubber over his face and pressed down until the rubber hardened, taking on the exact shape and contours of his features. Wearing it, he looked like a hockey goalie.
``Why do you do these things to me,'' he pleaded with Hazel. ``Please. .
Angie stood at the foot of the table, softly rubbing his leg. ``Remember what I told you, Daddy. It's just like lying out in the sun.''
The doctor cleared the room and slid Tom into the machine, while an aide hooked up ``The Wizard of Oz'' for Tom to watch during the three-hour test.
Hazel peeked through the window into the room where Tom's legs stuck out of the giant machine. She felt physical pain in her stomach and chest as she watched him disappear into the black hole. But she knew this test was crucial. Maybe this time the results will be good, she thought. Maybe this time, they'll have some good news.
Before the test was finished, though, they paged Hazel over the hospital loudspeaker. Tom was too agitated to finish.
But they shot enough to know the news wasn't good.
Tom's brain had continued to shrink, the doctors told her in the discharge meeting. There was less brain matter, more blank holes. One part of his brain seemed to be filled with fluid. ``That shouldn't be there,'' he said.
Then the psychiatrist handed her the results of Tom's cognitive tests. As the impact of the low scores hit, she covered her eyes with her hands and began crying.
``Hazel, you need to start thinking about if you can care for him at home,'' said the unit's social worker gently. ``It's important that you start planning.''
March
Since NIH, Tom is worse.
He isn't sleeping at night, and Hazel rarely gets more than two hours sleep before she is awakened by his relentless pacing.
He is on Haldol now, a tranquilizer. She slips it into his orange juice each morning. Otherwise, he'd just spit it out.
She sold the house, and is trying to find a two-bedroom apartment she and Angie can move into by early May. Reluctantly, she has come around to the decision she thought she'd never make.
She's going to put Tom in a nursing home.
Everyone says she should do it. The doctors. The social workers. Angie is such a mess that the doctor told her to either do it or lose both of them.
The teenager just can't handle her father's decline. Every time her dad can't do something, she doubles over in pain and then Hazel has both of them to deal with. She hasn't gone a full week of school in months. And when she does go to school, she comes home and goes right into her room and shuts the door.
Yesterday, Hazel kept Angie tranquilized and in bed all day, hoping it would help her stomach unclench.
And then there are the practical matters. She's got to get a job, get on with her life.
But the thought of leaving Tom in a nursing home . . . She remembered the home her grandfather died in. Smelly. Dirty. Old people tied to their wheelchairs, mumbling gibberish to themselves.
How will she explain it to their friends? To Tom's oldest daughter, who still won't accept her father's illness?
It feels like she's putting herself in there. And she's afraid he's going to feel it. He's going to know she's done this.
It's like he is and he isn't there. Like there's still a spark of the old Tom left.
April 11.
Washington, D.C.
Angie is so excited she can't stand still. She whirls. She twirls. She jumps up and down on the balls of her feet, tugging at her mother's jacket.
``When will she be here? When will she be here?'' she pesters Hazel.
This is the annual public policy forum for the national Alzheimer's Association, when family members of Alzheimer's victims descend on Washington to lobby for increased funding and research into the disease. This year, they have a special mission - inclusion of long-term care in the Clinton health care reform proposal.
Hazel and Angie are honored guests for this conference - they've been selected to testify before a Senate subcommittee on aging tomorrow when it holds public hearings on long-term care.
But today is even more exciting.
Today, they get to meet Hillary Rodham Clinton, here to address the conference.
She seems much smaller in real life, thinks Hazel, as she shakes the First Lady's hand. Angie gets a hug. Then the three of them move to the chairs in a corner of the large meeting room and sit down. And in a soft, hesitant voice, Hazel tells Clinton about her husband.
The Chapman's story, Clinton tells the packed auditorium later that morning as Angie and Hazel sit behind her, is but one of millions of similar stories. ``Alzheimer's disease is one of the most expensive and least insured illnesses most Americans will face. It is not an aging issue; it is a family issue. We have to make all of America know, there but for the grace of God go all of us.
``People like Hazel should not have to sell their houses to be able to put their loved ones into nursing homes,'' she says. ``They should have access to in-home care, to respite care, so they don't have to turn to nursing homes.''
Later, Angie stared in wonder at her autograph book. ``To Angie, thanks for your courage and support,'' Clinton wrote.
``She's cool,'' Angie said.
That evening, the Alzheimer's delegation pin purple forget-me-not flowers to their coats and walk in a long line from the hotel to the Mall, clutching candles in their hands. As the soft lights of the memorials twinkle on, they light their candles one by one.
Angie wanders away from the group and sits by herself on a ledge overlooking the Reflecting Pool, away from the speeches and applause, the stories about memory loss and dementia. I don't want to hear anymore of it, she thinks. I'm tired of it.
But the next day, in a clear, strong voice, she tells the nine senators in the dark-panelled hearing room her story.
``I used to be a daddy's girl when I was little. Anything I wanted, my daddy did for me. Before his disease he used to help me. Now it's the other way around.
``Mentally, my dad is younger than me. I have to help feed him, put on his shoes and dress him . . .
``If there was one thing I could ask you for, it would be to change things so my dad could get some help. He can't get any services now because he's too young. If someone could come to our home to help care for my dad, it would make things easier for me and for my mom.
``But what I really want is to have my daddy back.''
April 25.
By the time she reached the counter at Virginia Beach Social Services, Hazel was crying so hard she couldn't talk. Then she gave herself a mental shake and straightened up.
``I want to apply for Medicaid to put my husband in a nursing home,'' she said in a clogged voice.
The woman behind the glass shield told her to take a number and sit in the waiting area with the other people there to apply for welfare. Embarrassed, ashamed, Hazel waited.
She'd brought two briefcases stuffed with medical papers, bills, receipts and checkbooks, but even so, she'd forgotten two papers. She'll have to come back, the social worker said. And she didn't give Hazel much hope. It didn't sound to her like Tom was sick enough to qualify for a nursing home.
``He could stay in an adult home,'' she suggested.
But neither Medicaid nor their private insurance would pay for adult home care. And Hazel knew Tom wasn't well enough to be in a group home. He needs to be on an Alzheimer's unit, she told the social worker.
The woman nodded. ``We'll come by and do the screening.''
When the nurse and the social worker come for the screening, they barely look at Tom. Don't ask him any questions or examine him. Just glance at the paper from NIH Hazel hands them, ask her a few questions about Tom, and leave. They were there about 10 minutes.
When they leave, Hazel cries. She's certain they're not going to approve Tom.
Four days later, Tom tries to kill himself. A friend walks into the bedroom and finds him there with a knife.
He'd been telling Hazel for the last few days that he wanted to die, so some part of her isn't surprised. On some level he knows he's going into the nursing home, she says.
``Are you going to put me in an asylum?'' Tom asks. ``I'm crazy, aren't I?''
May 6.
The house looks like a war zone. Boxes piled in every corner. A mattress leaning against one wall. Cabinets hanging open, their insides bare. And in the midst of it all, Angie has decided to make sugar cookies.
Hazel is getting Tom ready for day care. She shaves him, then slips a Haldol into his orange juice and watches him drain the glass.
Tomorrow is moving day for her and Angie. A friend has found them a small house they can rent for $150 a month - a godsend.
But today is Tom's moving day. After she personally appealed to a case worker at Social Services, strings were pulled and Tom was approved for a nursing home and for Medicaid insurance. Luckily, Sentara has an opening, although not on the Alzheimer's unit.
The plan is that at 3 p.m. the aides will walk Tom from the day care next door to the nursing home. Hazel will meet him there later that evening. He has no idea that he's never coming home again.
When they leave, Angie hugs her dad tight - so tight, even Tom notices.
``I love you daddy. Goodbye.''
Hazel and Tom hold hands as they walked into the day care center. ``Bye sweetheart, see you this evening,'' she calls, a false grin plastered across her face.
Then she walks the 100 yards to the nursing home entrance, where the admitting director waits.
``This is hard,'' Hazel says as the woman puts a comforting arm around her shoulder. ``I can't do it. I can't leave him.''
Things get worse when she stops by Social Services to sign the papers for Medicaid reimbursement.
When the social worker hears that Hazel will be renting a house for only $150 a month, she's surprised. ``That's going to change all your figures,'' she says, doing some rapid calculations.
``You're going to have to contribute $580 a month towards the nursing home.''
``That's OK,'' Hazel says. ``I'm going to get a job. I can handle that.''
``But if you get a job,'' continues the social worker, ``we'll have to consider the income you bring in and you'll have to contribute even more.''
Hazel is stunned. She sold her house because she couldn't handle the $650-a-month mortgage payment plus the high utilities; now it looks like she's going to wind up paying more than that for her rent and the nursing home.
And she'd been counting on a job. But it didn't make sense to work if every penny would just go to the nursing home.
``This is crazy,'' she says.
``Oh, but it's much better than it used to be,'' confides the social worker. ``Used to be, spouses could only keep $2,000 in assets. Things are much better.''
Later that day
Tom Chapman sits alone in his room at the nursing home, staring at his hands. He looks up as Hazel enters and his eyes fill with tears.
``Do you know where you're at?'' Hazel asks softly, sitting down on the bed next to him.
``Yeah,'' he mumbles, unable to say the name.
``You're in a nursing home,'' she says, holding his hands in hers.
``Why? Why?'' he asks, his voice breaking.
``I'll come every day,'' she says, trying to sound cheerful. Her eyes take in the mauve-and-blue room, the twin beds, the matching armoires and night tables. ``This is a wonderful room . . .'' she says. Then her voice trails off and she starts crying.
She puts her arms around Tom and holds him, both of them crying.
``They can do better therapy here than I can,'' she says as he moans against her shoulder. ``I'm not putting you here and leaving you, but you can get the care you need because I can't give it to you at home.''
``If this is where you want me,'' he says, wiping his eyes.
``This isn't where I want you. But this is where it's best. This is what you need.''
June
On the television screen in the corner of the day room, the beautiful, rich soap opera characters play out their problems. This one's pregnant and unmarried. That one's having an affair. This one is going to lose her child in a custody case.
Tom Chapman, several pounds lighter than when he entered the nursing home two months ago, his hair thinner, his face pale, sits on the bottom shelf of the empty bookcase staring at the door, his eyes blank.
``Tom, wouldn't you like a chair,'' an aide offers brightly.
``N. .no,'' he mumbles, and continues sitting, staring, his hands twitching and reaching up to scratch his head every few seconds.
Three miles away, in a living room cluttered with boxes, a laundry basket of clean clothes and piles of papers, Hazel Chapman sits in a recliner watching the same soap opera. The fan is on high and she's wearing little more than a slip, but still her skin is shiny with sweat in the steamy summer air.
Upstairs, Angie leaps around her bedroom, her excitement at the evening's dance recital too immense to contain within her small frame.
All her thoughts are focused on the coming evening, on the neon-colored costume she'll wear as she dances to the music of Michael Jackson's ``Thriller,'' the applause to follow, the roses she suspects her mother will give her.
She runs downstairs and calls her friend, Stacy. ``Are you ready? Did your mom give you your surprise?'' she says, glancing over at the graceful dancer caught in gold on top of the piano. ``Yeah, mine has my name on it, too.''
It's all so normal Hazel just has to smile. It's working. Angie's been acting like a normal teenager these past two months. Last week, she had her first date.
Her own health is improving, and she hasn't had a seizure since she put Tom in the nursing home. She's paid off some bills with the money from the house, worked out a rent agreement with the landlord so she doesn't have to pay more to the nursing home and sent away for college catalogs.
Tom's going to die in six months. She knows it. If it isn't the Alzheimer's that kills him, it will be a stroke. And no one will try to save him. She's made sure of that with the ``Do Not Rescucitate'' form that stays in his bedside table at the nursing home.
She can think of his death now without that hollow feeling in the pit of her stomach. For whatever vestiges of her husband remained when he entered the nursing home are gone now; extinguished in the blankness of the disease.
He still cries every time she leaves, but he doesn't even understand where he is.
It's the first time in 25 years she's lived alone, and she's adjusting pretty well - except at night.
She sleeps on the old guest bed instead of the king-sized waterbed she and Tom shared. That leans against the wall in the extra room; she'll never sleep in it again.
She rarely gets through an entire night without jerking awake, feeling for Tom, thinking she hears him stumbling around in the dark on one of his midnight forays for chocolate bars.
She misses him, but - and maybe this is wrong - it's just so much easier without him. There's so much less pressure. She can finally start taking some steps towards the future.
Tonight she'll watch her daughter dance lithely upon the lighted stage. Next week, they leave for a visit back home with her parents in West Virginia. It will be the first time she's made the trip without Tom, and she's looking forward to it.
She glances at her watch, trying to muster the energy to go visit Tom. She tries to visit every day, usually around mealtime so she can feed him. If she's not there, he just sits, watching his food cool, because he doesn't know how to lift up the cover on the tray.
But it's so hot. So darned hot. She promises herself one more soap, then she'll go.
At the nursing home, an aide has persuaded Tom to walk down to the day room to watch the residents bowl. He sits on the sideline as the elderly bowlers throw the rubber ball from their wheelchairs, clapping when they clap, then immediately lapsing back into his blank staring.
Another aide brings his afternoon snack - juice and graham cracker cookies - and helps him lift the cup to his lips and sip.
Tomorrow, she tells him, he's going to go to the day care center.
``Won't that be fun,'' she says, wiping the crumbs from his chin. ``Won't that just be spiffy.''
And from within Tom's shrunken brain, there is a brief spark, and he remembers blowing bubbles, hugging the aides at the center, cutting pictures out of magazines.
And he smiles at the memory. MEMO: Tomorrow: Researchers are closing in on a treatment, maybe even a cure
for Alzheimer's.
ILLUSTRATION: [Color Photos]
BILL KELLEY III/Staff
ABOVE: "I knew my dad was leaving soon, but I wanted to make him
feel as though it was just a normal day. I didn't want to let him
know how sad I was, so I just played and laughed. After he left, I
cried."
- Angie Chapman
RIGHT: "Grooming Tom was a big part of each day for me at the end.
He liked the attention I was giving him. He still likes for me to
shave him in the nursing home."
- Hazel Champman
BILL KELLEY III/Staff
ABOVE: "The PET (Positron Emissions Test) determines what part of
the brain is still functioning and how much is diseased. The test is
3 hours long and is very hard on the patient."
- Hazel Chapman
LEFT: During Tom's spinal tap. "I thought they were hurting him. I
don't know what a spinal tap is and I just wanted to know there were
lots of nurses and doctors in the room. I thought something went
wrong."
- Angie Chapman
ABOVE: "This picture made me cry because I miss him so much the way
he used to be. Always laughing, playing with the kids and cutting
up."
- Hazel Chapman
RIGHT: Watching TV at the institute of health. "Tom always held my
hand when we were together. We were very close and always wanted to
touch each other."
- Hazel Chapman
BILL KELLEY III/Staff
LEFT: During candlelight service in Washington, D.C. "I thought of
all the good times. How many other people and families were going
throught the same thing. Hearing the songs and the stories made me
think I'm not alone."
- Angie Chapman
ABOVE: The day before going to the nursing home. "I was in the
middle of packing. He always fell asleep watching TV because he
didn't sleep at night. Also because he was very depressed."
- Hazel Chapman
RIGHT: With Carol Kinslow. "This was when the doctors told me that
the disease had reached the hippocampus part of the brain, that
there was no longer anything they could do to help Tom. Now it would
just be a matter of months - not years that I could expect to have
with him. Before, I had always had hope that they would come up with
something. Now I have none..."
- Angie Chapman
LEFT: At the candlelight service in Washington, D.C. "This was a
memorial to all Alzheimer's victims and it was really sad. Both
Angie and I fell apart and grieved for the loss of Tom's mind."
- Hazel Chapman
BELOW: July 13, 1994. "This is just the beginning of the end. I'm
afraid he will get a lot worse before he dies. I don't think about
Tom the way he is now. I think about the way he used to be: happy,
carefree, loving, kind. And he was always there if someone needed
him."
- Hazel Chapman
BILL KELLEY III/Staff
This is just a shell of Tom - not Tom.
Hazel Chapman
KEYWORDS: ALZHEIMER'S DISEASE by CNB