Caregivers Struggle with Needs of Alzheimer’s Patients
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GWEN IFILL: Now, the battle against Alzheimer’s, part two. Last week, the NewsHour’s health correspondent, Susan Dentzer, looked at efforts to better understand how the disease affects the brains of its victims. Tonight, she considers its impact on the caregivers and families of the afflicted. Our Health Unit is a partnership with the Robert Wood Johnson Foundation.
SUSAN DENTZER, NewsHour Health Correspondent: This is how Meryl Comer begins each day: crouching, in the dim morning light, to empty her husband’s urine bag.
MERYL COMER, Wife of Alzheimer’s Patient: Just a minute, love. I’m coming.
SUSAN DENTZER: That accomplished, she removes his catheter and helps him out of bed.
MERYL COMER: OK, I’m going to swing your legs around, Harv?
SUSAN DENTZER: In a moment, she’ll get one of the occasional fleeting acknowledgments that he knows she’s there. He’s probably not aware she’s his wife; more likely, she’s a familiar presence.
MERYL COMER: Hi.
HARVEY GRALNICK, Alzheimer’s Patient: Good morning.
MERYL COMER: Good morning. Good morning. You OK?
SUSAN DENTZER: Harvey Gralnick, Comer’s 70 year-old husband, is in his 12th year of Alzheimer’s disease. He’s entering the final phases, when most normal human interaction ceases and patients completely withdraw.
MERYL COMER: Let me check your eyes, huh? Honey, you’re having some problems with your eyes.
SUSAN DENTZER: As devoted as she is to caring for him, Comer told us she’s now in her 12th year of something like hell.
MERYL COMER: I call myself a POA. I’m a prisoner of Alzheimer’s. I’m an extension of his disease.
SUSAN DENTZER: And Comer says she’s madder than hell about inadequate support for the nation’s caregivers, including proposed cuts in federal programs aimed at Alzheimer’s care.
MERYL COMER: I feel compelled to speak out for both victims, because they have no voice, and for caregivers, who are worn out.
One disease, two patients
SUSAN DENTZER: Comer's story echoes that of millions of families across the country coping with the ravages of this mostly untreatable and so far incurable disease. They're part of an informal care-giving network that provides the equivalent of tens of billions of dollars of care for free and sustains a burden many would find unimaginable.
Dr. Sam Gandy is a top neurologist at Thomas Jefferson University and chief scientific adviser to the Alzheimer's Association.
DR. SAM GANDY, Thomas Jefferson University: Caregivers are typically exhausted, depressed, withdrawn, overwhelmed.
MERYL COMER: This is for you. Ready?
DR. SAM GANDY: They may have exhausted their financial resources, in addition to their emotional resources. There's actually always a second patient with Alzheimer's disease, because the caregiver requires attention by the physician, as well.
SUSAN DENTZER: The second patient in this case, Comer, was a long way from that when her husband first fell ill.
MERYL COMER: Hello, I'm Meryl Comer, on special assignment in Tokyo.
SUSAN DENTZER: Then a TV newswoman, she spent her days interviewing business leaders, Washington political figures, and even presidents.
Divorced from her first husband and with a young son, Comer had married Gralnick in 1980. He was then at the peak of a prestigious career as a physician and scientist specializing in blood-related cancers at the National Institutes of Health.
But in the mid-1990s, Gralnick was diagnosed with early onset Alzheimer's and eventually had to leave NIH. In what was left of his mind, it was a long goodbye.
MERYL COMER: For five years, he carried around his briefcase. And every morning I got him up, saying, "Love, you have to get up. Your patients are waiting." He carried around his research papers, shuffled them around. It was heartbreaking. That's what he cared about; that was his world. And we stayed in that world with him until he didn't care about it anymore.
SUSAN DENTZER: Comer eventually quit her job and became Gralnick's full-time caregiver. As often happens with Alzheimer's patients, he'd also become paranoid, delusional, and occasionally even violent.
MERYL COMER: All personal care was a confrontation. When the mind's dementing, they don't understand personal care, so they take it as if you're attacking them. I had my front teeth knocked out in the hospital.
But I was the one who got there early in the morning to bathe him, shave him, dress him, because I could get closer. I just missed the left hook, so to speak.
Determined to reveal Alzheimer's
SUSAN DENTZER: As Gralnick grew sicker, the couple's social isolation grew, too.
MERYL COMER: The behaviors are inappropriate. Inhibitions are the first to go. One of the chapters of the book that I have yet to write is, "Is That Your Husband Peeing on the Barbecue?" Subtitled, "Social Improprieties and Why Invitations Stop Coming." You get embarrassed. You protect them. You pull them away. Nobody sees them. Nobody sees the horror at night.
SUSAN DENTZER: Comer told us she was determined to show us some of that horror, so we lent her a camera to record scenes when we were not there. She captured one typical nighttime calamity, when her six-foot, two-inch husband, weighing 200 pounds, falls to the floor and can't get up.
MERYL COMER: I'm going to try to get you up, Harvey. I'm going to get behind you, lovey. Harvey, sit up for me.
HARVEY GRALNICK: No, no, no, no, no.
MERYL COMER: Harvey, please help me, love. Harv, I can't do it. Honey, I can't do it. Here, I'm going to call the fire department. OK, honey? I've got to call somebody to come help us.
I'm told to call 911 and say it's a non-emergency, and then I break into tears because I can't do it. And I've watched these two burly men wrestle with this man to get him up off the floor.
More than a one woman job
SUSAN DENTZER: Aside from those dramatic episodes, even routine care-giving tasks are taxing, especially on the staggered four hours of sleep Comer says she gets most nights. Determined to help his life stay as ordered as possible, Comer gives her husband a daily shower as he sits on the toilet.
MERYL COMER: Get some cologne, and you're good to go.
SUSAN DENTZER: Comer counts herself lucky that, at age 62, she's more able than most spouses of Alzheimer's patients to cope.
MERYL COMER: Think of an 80 year-old woman doing this to an 85-year-old man.
SUSAN DENTZER: Comer also says she's more fortunate than most, since she can afford to hire nurses and other aides to help out.
CAREGIVER: Brush your teeth, Dr. Harvey.
MERYL COMER: Medical Assistant Marvin Angeles (ph) has worked with the family for three years.
CAREGIVER: That's it. That's it. You almost got it.
SUSAN DENTZER: Still, just coordinating the care Angeles and other members of the team provide is a job in itself. To keep track, Comer logs daily notes in a book.
MERYL COMER: Were you easy today? I'll give you a two today. How about that?
SUSAN DENTZER: Whatever its complexities, Comer says prefers home care-giving to placing Gralnick in a nursing home, where on average half of all patients have Alzheimer's. That's a path she's already tried and rejected, partly because the costs of top facilities with private-duty nursing range from roughly $100,000 to nearly $200,000 a year.
Medicare won't pay any of those long-term care bills, and Medicaid will only pay them for low-income people who've exhausted their assets. But Comer's reluctance also stems from her belief that even supposedly top-notch facilities don't always provide high-quality care.
MERYL COMER: In the facilities, his feet would get infected and swell up because he was walking in his own urine at night. We haven't had any problems here.
When will the help come?
SUSAN DENTZER: Four-and-a-half million patients in the U.S. are struggling with Alzheimer's today, and millions more are likely to develop the disease in coming years, so you might think that support for caregivers like Comer would be increasing. But at the federal level, says Steve McConnell, who oversees advocacy and public policy for the Alzheimer's Association, that's not the case.
STEPHEN MCCONNELL, Alzheimer's Association: There is a very high awareness of Alzheimer's disease among members of Congress and the administration. Many of them have seen it in their own families. But for some reason, there's a kind of head-in-the-sand approach to it, that they see the problem but they're not doing much about it.
SUSAN DENTZER: And in fact, says McConnell, the Bush administration has proposed eliminating several key programs to support Alzheimer's caregivers. Comer and other Alzheimer's disease advocates are now working to reverse those cuts in Congress.
Meanwhile, with her husband nearing the end stages of Alzheimer's, but possibly still able to live a long time, we asked Comer what her greatest hope was now.
MERYL COMER: I hope that I don't wear out. Caregivers have a very bad rate. They tend to die before the patients, statistically, because of the intensity. So my wish for Harvey is that I just don't wear out, or give up, or there's an episode where I can't manage it somehow.
SUSAN DENTZER: Until then, she says, they'll manage as best as they can.
MERYL COMER: That's all we can do. As good as it gets, Harv.