THE VIRGINIAN-PILOT
Copyright (c) 1994, Landmark Communications, Inc.
DATE: Sunday, July 24, 1994 TAG: 9407220066
SECTION: DAILY BREAK PAGE: E1 EDITION: FINAL
SERIES: SPECIAL ALZHEIMER'S REPORT
PART I
SOURCE: By DEBRA GORDON, STAFF WRITER
LENGTH: Long : 278 lines
THE UNSPOKEN question had been pounding in Tom Chapman's head for months.
``I've been having trouble remembering things,'' he told his doctor, who was examining him after he'd passed a painful kidney stone. ``Do you think my kidney stone had anything to do with that?''
Hazel Chapman stared at her husband, open-mouthed.
Suddenly, things began to click into place.
The small examining room receded in her mind, and she saw again that cold January day four months ago when Tom told her he was forgetting how to do his job. Thirty years as an air conditioning/refrigeration mechanic, and suddenly he couldn't do the simplest things. Like getting a refrigerator motor humming. Filling the freon in an air conditioner. His father had invented the automatic ice machine, and now he couldn't remember how to get one running.
She realized it had been months since he'd fixed anything around the house, that his huge collection of tools was gathering dust in the garage.
And when was the last time he'd stayed up late reading the Bible? Seemed lately he didn't even want the neighborhood kids playing in the house. Said they made ``too much noise.''
That wasn't Tom.
``I'm going to ask you some questions, Tom,'' said Dr. Howard Weinberg. ``I want you to answer them as best you can. What is today's date?''
``April 15, 1991.''
``What time is it?''
``2:10.''
``What season is it?''
``Spring.''
Hazel felt the rubber band around her chest loosen.
``Tom, call these numbers back to me: 4,5,8,9.''
``4, um, 5 . . .'' Tom's voice trailed off.
``Repeat these words: ball, flag, tree.''
Tom was silent.
The doctor asked again. ``Ball, flag, tree.''
Tom opened his mouth to answer, but no sound came out. His eyes, confused and frightened, sought his wife's, and she reached out to take his hand.
It would be five more months before anyone used the words ``Alzheimer's disease'' to describe Tom Chapman's condition.
By then, he would have forgotten how to read. Been relegated to sweeping floors at work.
He was 49 years old and he'd just been given a death sentence.
A West Virginia girl, Hazel Chapman met Tom 16 years ago when he followed her into a restaurant off the street and asked her to dance.
They were married two years later.
Pictures from their wedding show a younger, thinner Hazel, dressed in white and wearing a large straw hat. Even in the pictures, Tom's vivid blue eyes snap with joy and excitement. This would be his second marriage, and he was determined to make work.
Doctors had told Hazel she couldn't have children, but four months after their wedding she became pregnant. When Angie was born, Hazel quit her job as a secretary to the state's governor to become a full-time mother. Later, she thought, she'd probably go back to work.
But Angie was only a few months old when Hazel was critically injured in an elevator accident, leaving her with a history of seizures and a bad back.
Luckily, she'd never needed to work during her marriage. Tom took over his father's refrigeration/air conditioning business and, until the mid-1980s, made a success of it.
Years later, when she tried to think back to the beginning, back to the very first signs of his memory loss, she would point to this time as the start.
Tom would leave on sales trips and come back without any new clients. He stopped doing the paperwork and she took it over, thinking he was just getting lazy. His established clients dropped off, until finally there was no business left.
She thought it was a midlife crisis. So when he suggested moving the family to Hampton Roads, where his daughter lived and where he thought he could find work, she agreed.
He was fired from two jobs before he found a job with the government at Dam Neck Fleet Combat Training Center. The income, combined with the extra money he earned doing handyman jobs on the side, enabled the couple to buy a four-bedroom house a few miles from the base, two campsites, a van and a yacht. Angie took piano and dance lessons. She had her own waterbed, phone and television.
And then on Sept. 14, 1991 it all fell apart.
The psychiatrist called Hazel and Tom into her office, leaving Angie thumbing through magazines in the waiting room.
A summer of testing was finished. The results were in.
``It's Alzheimer's disease,'' she said almost immediately.
Hazel just sat there, disbelieving. It was the first time anyone had mentioned Alzheimer's. It was an old person's disease, that much she knew. But Tom wasn't old.
Then the questions came, flooding her mind. What is it? What kind of problems would it cause?
Each answer hit her like a physical blow.
It was a regressive disease, ending in death, the doctor told them. Since Tom was getting it so early, he could look forward to three, maybe four more years.
That night, Tom and Hazel held each other in bed, crying. It was a devastating diagnosis, but in a weird kind of way it was also a relief. After six months of unanswered questions, they finally knew what was wrong.
Hazel remembered a conversation she'd had a few years back with Weinberg. She thought she was retarded, she'd told him seriously. With each seizure, she was certain she was becoming a little slower, forgetting more. She feared spending her life dependent on Tom, and just knew she wouldn't be able to finish college or get a job.
And now it would be Tom who would be dependent. She was the one in charge.
At the support group for caregivers she sat, sickened, listening to the stories.
There was Dixon, an older man in his 60s, with the tired, careworn face of the long-suffering, whose wife was diagnosed seven years ago. He cuts her nails, brushes her teeth, cleans out her mouth, he told the group.
``But she can still smile,'' he said with a small chuckle. ``Sometimes she hums.''
He'd promised when she was diagnosed that he would always take care of her at home. ``She gets twice the care and 10 times the love at home,'' he said. ``She might not be living if she weren't there.''
Was this herself a few years down the road? Hazel wondered. Would she, too, be changing her husband's diapers, spooning baby food into his waiting mouth, wiping drool from his chin?
What if Tom became violent, as some Alzheimer's patients did? He was much larger than she; he could seriously hurt her.
Back home, she picked up the book she'd ordered, ``The 36-hour-Day,'' a family guide to caring for persons with Alzheimer's Disease and dementia.
She read the first chapter, which described a woman's descent into dementia. Horrified, she threw the book across the room. She never picked it up again.
Then someone told her about the Alzheimer's program at the National Institutes of Health (NIH).
In late 1991, there was still no treatment for Alzheimer's. The disease couldn't even be definitively diagnosed without an autopsy, although conventional psychological testing was about 90 percent accurate.
But research in the field had been intensifying. If a breakthrough were to come, NIH in Bethesda, Md., would be one of the first centers involved in clinical trials.
Hazel called the next day.
``Bring him right up,'' they told her, eager to have so young a patient to examine, one in such an early stage of the disease. They would pay for the family's transportation, lodging and meals, and all Tom's medical care would be free.
It took just a five-minute interview and some word games for the NIH doctor to confirm the diagnosis. Even worse, with this type of early onset Alzheimer's, he told them, chances were it was genetic. Her daughter, and Tom's four grown children, might eventually develop it.
The Chapmans rode back to Virginia Beach in silence, the only sound in the car Angie's childish chatter.
And then they faced another crisis.
Tom had missed five days of work. He needed a doctor's excuse to return. Once his boss saw the diagnosis of Alzheimer's, he could fire him because Tom could no longer do his job. Then the family would lose his health insurance. So Hazel put her 49-year-old husband on early retirement.
Their income plunged from $3,000 a month to the $700 a month she and Angie collected in disability.
Hazel applied for Social Security benefits for Tom and he was approved. But there was a five-month waiting period until they received their first check.
So she sold the campsites, the van, the boat. Emptied their savings account. And when all the money was gone, swallowed her pride and applied for food stamps. Accepted donations from her church. Let the bills pile up.
In May, she got the first Social Security check for Tom - $800. With a $650 mortgage payment, orthodontist and medical bills, food, insurance and car payments, it wouldn't go far, but at least they wouldn't starve or lose their home.
Yet.
If there is anything kind about Alzheimer's disease, it is that it spares its victims the knowledge of their decline.
So when Tom lost his ability to write, he didn't remember he ever could write. He didn't mourn the loss of the camping and fishing trips with his daughter, because he didn't remember ever having gone. It didn't bother him that Hazel was now the one paying the bills, fixing the sink, driving everywhere. He didn't remember having done those things.
But Alzheimer's makes up for that small crumb of kindness in the jolt of agony it delivers to a victim's family. For they can remember.
Hazel coped by staying busy. Never stopped moving or doing. She started volunteering at the local Alzheimer's Association, writing letters to senators and congressmen, speaking out about the disease.
A therapist told her that if she ever sat still, she'd burst into tears, fly apart. Hazel knew it was true. And she just couldn't afford to do that.
For in addition to Tom, she was trying to deal with the effects his illness had on Angie.
Angie was 9 when Tom was diagnosed. She'd always been a sickly child, with autoimmune problems and a rare form of epilepsy that affected her stomach.
The stress from Tom's disease tore at her.
Some days, her stomach seized up so badly she couldn't go to school. Once, she clenched her teeth so tight she couldn't open her mouth. By the time she was 13, she was taking an antidepressant, seeing a therapist and using tranquilizers to calm her anxiety.
She'd stopped bringing friends to the house. Her dad was too weird, he acted funny. Only Stacy, her best friend, came over. Stacy's grandmother had Alzheimer's, so the girl knew what it was like.
It was like suddenly having a little brother to take care of, instead of a father.
It was having to ``babysit'' her father when her mother went to the store, making sure he didn't walk outside where he could get lost.
It was biting back the tears and the anger when he could remember the dog's name, but not hers.
One weekend she took her dad bike riding, something he'd loved to do. She came back from the ride hot, rumpled and scared.
``Never again,'' she told her mother, describing how he had ridden off, ignoring her calls. It was the last bike ride they'd take together.
By April 1993, Tom had been included in two clinical trials for drugs to treat Alzheimer's. Both were designed to delay the breakdown of acetylcholine in the brain, the chemical that was thought to account for many of the memory problems Alzheimer's patients experienced.
For six weeks each time, they shot the experimental drugs into Tom's veins. And each time, Hazel saw his cognitive abilities change. His short-term memory improved; he could hold real conversations. He even began to read and write a bit.
But without the drugs, he quickly regressed.
Then Hazel heard about a new drug.
It was Tom's doctor in Virginia Beach who learned that Eastern Virginia Medical School was participating in national clinical trials for the most promising Alzheimer's drug yet - Tacrine.
When he started on Tacrine, Tom had begun to lose his ability to dress himself, to reason, to think or make any kind of value judgment. He couldn't answer questions.
But three weeks after starting the drug, he sat down and talked to WAVY-TV reporter Kelly Wright about his disease.
``I know this condition will take away my memory, and it's painful,'' he told Wright in a clear voice. ``I feel like I'm lost, like I'm not able to fight it. I want to push this back and be with my family.''
He began dressing himself, washing the floors, folding and putting away his clothes.
For the first time since the diagnosis, Hazel felt some flicker of hope. Tacrine - later called Cognex - seemed a miracle drug. It was giving her back her husband.
But Tacrine had a sinister side. In about 75 percent of those who take it, the drug caused temporary liver damage.
When Tom started turning yellow after six weeks, doctors stopped the drug.
Wright called two weeks later. He'd lost the initial interview with Tom and needed to reshoot it. Hazel warned him about the change in Tom. But nothing prepared him for the man he saw when he and his camera crew returned to the Chapman house and he again asked his carefully prepared questions.
Tom couldn't answer a single question.
For Hazel, the failure of the Tacrine, and Tom's subsequent regression, meant she could no longer pretend he was going to get better. By now, his illness was too advanced for any other drug studies; his visits to NIH would be for evaluation only.
She needed to start thinking about the future. About how - or if - she would care for Tom as he got worse. How Angie would cope. And how the family was going to survive financially when - it was no longer an if - Tom died. MEMO: Tomorrow: Hazel struggles to keep her family together as she starts
to make some tough decisions. ILLUSTRATION: Color photos
BILL KELLEY III/Staff
ABOVE: ``Tom was so confused. He didn't understand what was
happening. He didn't know he was going into the nursing home. He was
just very depressed.''
``This picture was taken (in 1989) for the church directory before
Alzheimer's. I look at this picture and can't believe what's
happened to Tom. It's a nightmare and I want to wake up.'' - Hazel
Chapman
LEFT: ``Angie loves her dad very much and they have always played
together. They are still very close and play even at the nursing
home. His eyes light up when she comes in the room and he is ready
to play.'' - Hazel Chapman
``Dad and I dreamed of one day putting together a show. We made up
lots of tricks. I know now that dream will never come true.'' -
Angie Chapman
BELOW: ``This picture is typical of Tom. He would rather play with
the kids, whatever they were doing, than anything else. This was
right after Tom had been diagnosed.'' - Hazel Chapman
by CNB