Dimensions of Dementia : Family Struggles to Reconcile Images of a Vital Man They Love With the Daily Reality

Every morning before she leaves for work, Linda gives her husband a list of things to do and prays that it will keep him out of trouble while she’s gone.

It usually does because he follows it with a childlike eagerness to please the high school sweetheart he married 39 years ago. After completing every task, the man Linda had always depended on as the primary breadwinner and decision-maker in their family sits in front of the TV and waits for his wife to come home. And, he says, “I try to think of how to get myself in an operational mode.”

Speaking in short sentences and phrases that prematurely fade into silence, Ed tells his visitor: “I’ve tried to go back to work. . . . It would be more of a miracle if it came through . . . because of the constraints of my dementia.”

My dementia.

This youthful, energetic 57-year-old who should be enjoying the prime of his life speaks with a startling matter-of-factness about how he is losing his mind: “I’ll be trying to explain something to someone, and all of a sudden I’ve dropped off and I’m not talking. It just goes.”

He finishes with a helpless shrug and a quizzical look that his 56-year-old wife finds completely out of character in the tall, handsome, take-charge man she married at 17.

Ed, who has striking blue eyes and white hair, is at such an early stage of memory loss that he doesn’t belong in the facilities that provide care and companionship for people with dementia, most of whom are over 65. He is set apart by his age and his awareness of what is happening to him.

He’s jovial and coherent enough among strangers--and in brief conversations with friends--to give the impression that nothing’s wrong.

A part of him must believe that because he still reads the classifieds and sends out resumes. But the truth is poignantly evident in Linda’s tired, often-tearful brown eyes, which reflect a burden--financial, physical and emotional--that is so overwhelming that she once found herself screaming in the shower.

She and her youngest son agreed to talk about their family’s ordeal on condition that their real names not be used.

Linda would like to be able to say her family, which once enjoyed carefree summers of boating and scuba diving together, has pulled together in this crisis. But, she muses, she and her three grown children are like people who have just been dumped out of an unstable canoe: “Everyone grabs for something to stay afloat before they can help each other.”

The oldest, a 38-year-old Vietnam veteran with mental health problems, spends time with his dad but suffers after each visit from the depressions to which he is prone.

His 36-year-old sister, who lives in Hawaii and has the only grandchild, has cut off all contact with her parents; Linda fears that Ed will no longer remember his daughter if she doesn’t visit soon.

Mike, 26, was also living in Hawaii when he was told of his father’s dementia, but he came home soon after. He now lives with his parents in a small Orange County apartment that reflects the scaled-down lifestyle they had to adopt when Ed was no longer able to work in the construction business and Linda had to find a job after years of homemaking.

She began to notice that Ed was having difficulties about three years ago but thought it was just work stress. He started losing things, asked her to do his bookkeeping because he couldn’t get the figures to add up and began answering simple questions in ways that didn’t make sense. When he got lost for 2 1/2 hours in an airport while they were on vacation a year ago, she knew she had to get him to a doctor.

The tests that began soon after that are still under way, but doctors have told Linda there’s just a 2% chance that Ed has Alzheimer’s disease--the diagnosis most often given patients with his symptoms.

Although Alzheimer’s is the most common cause of dementia, there are more than 70 others, some of which can be treated, according to Mildred Lee, nurse coordinator of the UC Irvine Alzheimer’s Disease Diagnostic and Treatment Center.

Ed, who is being tested at the UCI center, may have suffered from a series of small strokes, which, along with Alzheimer’s, accounts for 80% of dementia cases, Lee notes.

But his dementia may also be related to high blood pressure or the alcoholism he conquered years ago. (Among other causes are medications, brain tumors and infections, depression and rare diseases that cause brain damage, including Pick’s, Huntington’s and Parkinson’s.)

The brain damage Ed has already suffered can’t be reversed, Lee says, but the remaining tests will help determine the cause of his dementia and whether anything can be done to slow down its progression.

Meanwhile, his family is still in shock. They haven’t begun the kind of talk that often takes place when there is an early diagnosis of dementia--the decisions about the future that are best made when the patient can still speak for himself.

Linda says that will happen eventually, but “now my goal is just one day at a time, making ends meet, getting food on the table.”

They are just getting by on her modest income. The relief she feels that she could use her accounting skills to get a job is matched by her guilt over leaving Ed alone--and an endless fatigue that makes it hard to be patient and loving with him.

“I get angry when he asks me 20 questions or loses things,” she admits, “but I try to think of the good things he does every day. If he does get worse, I want him to always hear, ‘I love you. You’re the best friend, lover, companion--even fighting buddy--I’ve ever had.’ ”

It’s hard to let him know that when he gives her so little breathing room, following her around the apartment as if he’s afraid he’ll lose her.

“He’s becoming very, very dependent on me,” Linda says.

His world is gradually shrinking. Although he recently had his driver’s license renewed, he gets disoriented in unfamiliar areas. (“It’s probably time for an ID bracelet,” Linda tells him. “Yes,” he answers. “We’ve been talking about that.”)

He also has begun to get panicky in elevators and hotel rooms. “My world is a kind of small area right now,” he says. “I’m afraid of situations I might get into.”

Ed, who can vividly remember his boyhood but forgets things that happened 30 seconds ago, helps Linda by doing the grocery shopping--she signs the check and the clerk writes the amount down for him--and some housekeeping.

And it’s clear he would like to do more. For example, when she pays the bills, one of his former responsibilities, he stands over her restlessly. “He knows he’s supposed to be there, but he doesn’t know why,” Linda explains.

Her frustration is eased when her son, Mike, takes over.

A gentle, soft-spoken man who has his father’s good looks, he says spending “quality time” with Ed is especially important to him now.

At first, he embraced their moments together as though time was quickly running out. He took Ed on a camping trip and other outings closer to home. Now he realizes that helping to care for his dad is going to be a long, day-to-day process.

And, like his mother, he has to fight the frustration he feels when Ed starts a sentence and finishes it 15 minutes later, or when they’re talking and his dad nods in agreement but doesn’t seem to really hear him.

“I’d love to sit back and talk to him again. I miss my old dad,” says Mike, who helps his mom by paying rent, doing household chores and keeping her car running.

“It’s hard to put my life aside, but he’s worth it,” he adds. “I love him dearly. He’s like a little kid now in an adult body. There’s no way you can turn your back on that and walk away.”

It bothers him that his sister has lost touch with her father. “I’d like to see everybody getting closer rather than farther apart,” he says. “We should be spending as much time with dad as possible.”

Pat Messinger, a Santa Ana social worker and gerontologist, says it’s not unusual for grown children to withdraw when a parent is diagnosed with dementia.

“It’s always difficult for an adult child to see his parents as less than competent,” says Messinger, who will lead a support group for spouses of younger dementia victims that is being started this month by the Alzheimer’s Assn. of Orange County.

Families find it hard to pull together, she adds, because “any vulnerabilities or conflicts or relationship issues that are already there come to the forefront in a crisis.”

Linda, who plans to participate in Messinger’s support group, is struggling with her relationships with friends as well as family. She knows that many friends are uncomfortable because they don’t know how to deal with her pain--and don’t understand why she looks worse than Ed.

“People know you’re hurting, but they feel there should be a time limit and then you should switch back to your normal mode. You have to have a smile on your face and say everything is fine. That’s what people want to hear.”

She knows the support group will help her feel less isolated. But it won’t be enough. She also needs to see her family reunited.

“What I miss most is the laughter we all used to have,” she says. “You take things for granted. You don’t realize you need to hang onto each day.”

Linda vacillates between tears and the conviction that she will find the strength to deal with whatever is ahead.

She admits that she’s still hoping for a miracle. “I cling to Ed now, not wanting to let him change. But deep down I know it has to happen.”

She desperately wants to find a way for Ed to feel that he’s accomplishing something. She tried enrolling him in a college computer class, but he couldn’t keep up with the other students. She’s also considered getting him involved in some kind of volunteer work but hasn’t been able to find anything.

Sometimes when Linda feels like giving up, Ed’s optimism keeps her going: “I try to do the best I can with what I’ve got. . . . I want to get out and do things. I’ll do it when the time comes.”