Archive for Monday, September 7, 1998


September 7, 1998


Some of it I'm not going to tell you. But a few months ago Ray Crews, a 74-year-old retiree living here in Lawrence in Midwestern comfort, forgot how to close his garage door. The controls were hanging in full view, just like always, but that day he could not find them or even look for them. He went inside the house to tell Barbara, his wife of a half-century. Her stomach knotted, she took him back to the car and solved the problem.

Only of course she didn't. This was not the first forgetting, or the third or the fifth.

It was, in fact, just one more rip in the fabric of his memory, one more scary and mysterious episode in a series that had discolored their last few years. But it set in motion an upheaval from which they are only now emerging.

Ray and Barbara are my parents, and during those two or three years his lapses, his anger over them, his refusal to acknowledge them -- and her frustration over all that -- had brought dankness and tension to a home that had never known those things. Over and over he would ask her the same question. Mechanical skills, never his great strength, declined markedly. Simple tasks -- getting dressed, making cocktails -- seemed to take longer and longer to complete. Once last fall he asked her to drive home after a night out. He couldn't remember how to turn the car lights on.

Still, it's the garage door they speak of.

We expect the body to slow down, to fail. If it's not your heart, it's your kidneys; if it's not eyesight, it's hearing. Or both, or all. But ourselves, and the people we love, are supposed to remain constant. We may not look the way we did decades ago, but it's understood that certain parts of us won't change -- won't diminish. It's understood that we'll remember.

When we can't remember, there are so many ways of denying, of evading: I didn't get enough sleep. Anybody could make that mistake. I'm just not going to think about it. And so Ray told himself some of those things, or all of them or none. The problem, his but also by extension hers, lived there with them, an unbidden and unacknowledged visitor that threatened somehow to become the head of the household.

People who aren't used to living with discord don't necessarily handle it well. Barbara has always been pretty upfront, but Ray was brought up to believe that in times of trouble, the less you said the better. Barbara tried repeatedly to get him to talk about the forgetting, but he always refused.

``What do you want to do? Put me in a home?'' he asked.

``I want you to talk to a doctor because there may be something they can do to help you,'' she said.

Finally last January, in the heat of argument, she told him, ``I'm scared.'' And he said, gently, ``There's no point in both of us being scared.''

They went together to see his doctor, who first ruled out Parkinson's disease, strokes and depression. Then the doctor gave Ray a drug prescription.

The good news is that the drug, Aricept, helped. It's not that he was all the way back, but he stopped repeating himself, made fewer mistakes. He was a lot happier.

The bad news is that Aricept is used to treat Alzheimer's disease, and its effectiveness means that almost certainly Alzheimer's is the problem. And there is something more: After a time the drug stops working.

  • **
  • It happened to his maternal grandfather, known to Ray's generation as Paw-Paw. For the last few of his 92 years, Paw-Paw was there but not there -- doing nothing, communicating not at all. Once he grabbed my newlywed mother's wrists and looked into her face, giggling. She was frightened. Ray had a hard time prying her free.

Paw-Paw had to be bathed and taken to the toilet. Eventually, his wife, Maw-Maw, couldn't care for him. She'd call my grandmother and say, ``Paw-Paw's had an accident.'' Grandmother might be fixing dinner for everybody, but she'd hurry over to bathe and change him. It went on like that for quite a while.

  • **
  • You're reading a book or watching television or folding laundry, and suddenly the telephone rings. It sounds the same as always, but this time it isn't a friend inviting you to dinner or some idiot offering such a deal on your long-distance service. This call, you know instantly, brings information that will leave a dent where it lands.

Ray and Barbara were on the line. So were my siblings: Penny, who lives in Austin; Jenny, in Raytown, Mo.; and Byron, in Minneapolis. Conference call. My father was talking, although it was probably also possible to hear the four of us trying to be calm.

He told us about the drug he was taking and the implications of its success. He said he wasn't sad and joked that he had decided he should tell us while he could still remember what the problem is. He said he'd answer any questions.

The general silence that greeted his announcement -- I don't remember any questions -- was of course largely out of shock at the news that his sun was beginning to set. But it was more complicated than that: The jaunty narrator of the tale was a man we knew very well who had managed, quite late in the game, to show us a new side of himself.

My dad was somebody who always had to be in control of his situation, be the equal of any problem. And he always was, or at least he was as far as we could see. But now, finally, he was telling us about a problem that will one day grow bigger than he is. A problem that, given the time, is going to carry him off. He'd accepted that new burden, but in so doing, he seemed to have laid aside another one -- that of infallibility.

  • **
  • In turn Ray's mother, my grandmother, started to fade. Once, in her 70s, she confided in a daughter-in-law.

``She just cried and cried and cried,'' Barbara says. ``She said, `I'm afraid I'm getting like Papa. I really can't remember things.' ... I think about that sometimes, that she went through it all alone.''

Grandmother began leaving burners on all night, or the iron. Then one day she called a daughter and said her television was broken. When the daughter got to the house, Grandmother took her by the hand, led her to the kitchen and pointed to the oven door.

``Now you tell me where the picture is,'' she demanded.

My father was the designated breaker of the news that she had to move into a nursing home. She was hurt, he says. She cried. She said he was breaking a promise.

But she went into the home, and from there she went straight downhill. Which is not to suggest her children had any choice.

Ray has just finished telling her story. Lightly, he adds, ``I may be closer to that stage than I realize.''

  • **
  • Ray Crews grew up in the small town of Odessa, Mo., about 40 miles east of Kansas City, the straight-arrow oldest of eight children in the proverbial poor-but-hard-working Middle American family. He put himself through college, interrupting school for a hitch in the Naval Air Corps. Had Harry Truman chosen a Japanese invasion over the Bomb, Ray was to have been part of the first strike.

After graduating from college, he went to law school, and it was during this period that he met Barbara. It took him about six weeks to call her for a date, but he worked pretty fast after that. They were engaged in a little more than a month. In most matters they agreed, then and now. Two boys and two girls seemed like the ideal family, so that's what they produced.

The idea, obviously, was for Ray to practice law. But after he passed the bar, he found that the market was glutted with GI Bill lawyers. There were, however, opportunities in insurance.

Depression babies, a lot of them anyway, learned fast to go where the opportunities were. And so into insurance Ray went, and he stayed for 45 years. The early going was a little tight, but by the time I, the oldest, got out of school he was doing very well. I had an offer from the Kansas City Star, and he seemed mystified that I could turn it down.

But Dad, I want to be in New York.

But Chip, it's a good job.

He liked being the father, the provider. When he and Barbara gave me a car one Christmas, they were committing themselves to buy one for each of the others. Televisions, stereos and, later on, housing down payments were duly dispensed.

And he seemed to believe it was his function to solve problems, his own and others'. My early work frustrations were hard for him. He didn't own a newspaper or know any newspaper people, so he couldn't help me get a better job. When he had troubles of his own -- always work-related -- he might sometimes allude to them. But by your third question, he'd be cutting off the discussion with a quick ``It'll work out.''

Retirement was not easy for such a man. Their cozy life today is the result of his years of labor, but he says, ``I don't have to worry about wanting to live as long as I'm productive, because I'm not productive now. I'm already past that mountain, or molehill.''

Barbara counters, not for the first time, ``By that you mean you're not making any money.''

``I'm not earning my keep around here,'' he says. ``Emptying wastebaskets doesn't quite cut it.''

But the familiar exchange is airier than it might read on the page. In person it has the feel of a delicate dance step invented and enjoyed by two lifelong partners who have brought it out for one more spin across the floor.

  • **
  • Ray visited his mother regularly in the nursing home. One time she thought he was his father, then 15 years dead. On other days she would speak only of her mama and papa, how good they were, how much she loved them and her brothers and sisters.

One day he and Barbara visited her together. Grandmother was a little evasive that day, and finally he asked her whether she knew who he was.

She touched the cheek of her firstborn, smiled her angel smile and said, ``I can't call your name, honey, but I know you're one of mine.''

  • **
  • ``Come on. There's nothing we can't talk about.''

The three of us are an hour and a half into a discussion of Alzheimer's disease. Alzheimer's in general and his Alzheimer's in particular. We have never, never had such a conversation. The erstwhile Mr. It'll-Work-Out has taken every question head-on. Now he senses that there's something I can't find a way to say.

He, for his part, has been saying quite a lot recently. A couple of weeks after the conference call, they placed one to his siblings. And last month, on his 75th birthday, he and Barbara hosted a dinner for about 20 friends in a private room at the country club.

Everybody was there -- neighbors, the guys he plays golf with, members of her service club.

What's going on, people asked.

``Ray's running for governor,'' Barbara joked.

Then, after everyone had eaten, he stood up and told his story. When he had finished -- some of the women were crying -- she offered her own reassurances.

``We are not afraid,'' she said.

Though she insists again on this day that she meant that, there is much to fear.

Alzheimer's takes many forms, which is why Aricept doesn't work for everybody. Though it is always characterized by lesions on the brain, it can present an array of symptoms in addition to memory loss: decline in language skills, inability to make decisions, worsening hand-eye coordination, agitation, tremors. Some types run in families, but in general researchers speak cautiously about any hereditary aspect.

``The conventional wisdom is that if one has a close blood relative with the disease, the chances go up,'' says Zaven Khachaturian,director of the Alzheimer's Assn.'s Ronald and Nancy Reagan Research Institute. ``How much is in dispute.''

Ultimately Alzheimer's kills by attacking vital functions, such as the ability to eat and maintain body temperature, but its progress is so gradual that very often the patient dies of something else. In rare cases, major deterioration can occur within a couple of years of the first symptoms, although the average is nine or 10 years, according to Khachaturian.

But there is still the now. Somehow, Ray has been liberated by what has happened to him. When he found out that I wanted to write about Alzheimer's, he and my mother called me and asked to be part of the story. I admit that I have decided to keep certain moments of their lives private, but not because they made any request. The omissions are not significant -- they're just small things that break my heart.

But for my parents, the point of telling their story is that people should talk about this disease.

My parents are people who, if given the choice, elect to be cheerful.

They joke about their situation. And once again, as it always used to, a spark flies between them.

I mention that the Alzheimer's association says people with the disease need to do as much for themselves as possible. Ray's face lights up, they exchange a look, and Barbara bursts into laughter.

``All right!'' he exclaims. ``Get that Viagra in here by the ton!''

You need to laugh where you can. Though the strains of the last few years have mostly evaporated, the disease is leaving its mark. And the pain of having the problem and the pain of watching someone you love try to fight it are never entirely gone. The conversation has ranged from dependency to debilitation, frustration to fright. Also losses -- the bit-by-bit giving up of pieces of his life.

A couple of weeks ago, he announced he would no longer drive a car.

Barbara supported his decision. Of course, now she must do all the driving. Every four-block trip to the grocery store is her job. They're both sensitive to the ways his disease conspires to change things between them.

She speaks of ``tiptoeing,'' trying to alert him to his mistakes without seeming to nag. And Ray admits, ``I do resent being told this, that and the other thing like a 4-year-old child.'' His anger, they remind themselves, is with Alzheimer's, not her.

He has never needed her so much, and need itself can be terrifying.

``You're going to be damn tired,'' he tells her. ``It seems to me like Alzheimer's is a vicious disease, because it just stretches out forever.''

``Well, honey, I was tired when we were raising kids,'' she says.

``I know that. But there was a future for that. You were tired, but you knew what you were doing for the ...''

She breaks in: ``Well, there's a future for this. I'm taking care of you.''

``That's not much of a future, is the point.''

``That's your evaluation,'' she says with finality.

Though he insists he was never haunted by it until he started to slip, he has known this disease for a long time. It took away his grandfather, his mother and two of her sisters. Of the four, my grandmother, at 86, died the youngest.

``Come on. There's nothing we can't talk about.''

OK: What do you hope for? What do you want to happen?

``Demise,'' he says without emotion. ``A quick death.''

Here is the man who jumped way up in the air at the news that his firstborn was a boy, who taught me to ride a bike and shoot baskets and love Mexican food. And it is my kid-self, about to eat his first taco, who has heard him say this.

Then he adds, ``Let me qualify that'' just as Barbara breaks in with ``not while it's like this.''

``No no no,'' he continues. ``That's what I was going to say.''

Looking into his eyes, she says, ``I told you the other day I feel closer to you than I've ever felt in my life. I feel like we're in a race together, and I just feel so close to you, honey. And I would feel a little cheated if something happened right now.''

My father is trying to answer the question fully. He is trying to be a good interview. He is trying to help me, to be a dad.

``You're asking me what I want,'' he says. ``I want, and I'm selfish about this obviously, but I don't want anything to happen to Barbara before something happens to me. ... I'm enjoying what we've got now. I don't want anything to happen to that.

``For my part of it, I couldn't have had a better marriage than I have, and I just don't want anything to mess it up at the end of the road. So if you figure out how we can do it together, that's fine. If not, let me go early. But don't let me be the remainder of this thing.''

There is another pause, maybe the longest of the day. Finally Barbara says, ``Wise words.'' It is an old family joke, and we all laugh.

It is not true, as some would have it, that every time life slams one door shut it opens another. Sometimes it's just a closed door and no options and deprivation wherever you look. But in certain other cases there can be unexpected bounty.

If his disease follows its full course, my father will die two deaths, at least for those of us who love him: once when his head stops and again when his heart stops. We all know that, and we all try not to think too much about it. But even if things turn out that way, it won't be the whole story.

A couple of people have suggested to me that Ray's openness could be a function of the disease itself -- a loosening, a first letting go. I don't believe that, but if it were true, all it would prove to me is that even Alzheimer's can carry a little kindness.

My parents had lost something even dearer than memory -- or rather, they had lost something so precious that the memory of it had come to taunt them: Look, look what you used to have. And now, by confronting the crisis that took the thing away, they have found it again. They are two people who have received a gift and know it, one that came in some of the ugliest wrappings imaginable.

And Ray, who always had such an agenda, now has one again. On the phone a few days after I have returned to Washington, Barbara's voice is both heavy and prideful.

``Well,'' she says, ``he showed you how to live. And now I think he's going to show you how to die.''

  • **
  • Last Thursday, Barbara and Ray celebrated their 50th wedding anniversary. Celebrated it in the manner of their choosing: another in our series of We Six gatherings.

Once a year or so, the four of us converge on the house for a very exclusive reunion. No spouses, no kiddies, just us.

This time, as before, we had cocktails and dinner, laughed and made toasts, teased and tweaked. And, of course, remembered.

  • **
  • I am driving to the Kansas City airport for an early morning flight. My two passengers are offering counsel.

``Here's the underpass,'' he says. ``Just beyond is your turnoff.''

``No, honey -- it says to go straight.''

``Barbara, listen to me.''

And sure enough the turnoff is there, just as he said. The small talk resumes.

Outside, the green land, the river, the trees are blanketed in mist, very like the beginning of the world.

Commenting has been disabled for this item.