The toll of caregiving

Barbara Blum was content for decades to play the role of straight person to husband Jack's creative comic.

Women especially loved him. A bra and girdle salesman for more than 40 years, Jack Blum always had a tip, a free sample or a joke at the ready for a legion of female admirers.

"He used to say we lived off the fat of the land," Barbara said.

Today, the laughs steadily escape the Blums. Jack, 88 and afflicted with Alzheimer's disease, is forgetting his repertoire. At age 78, Barbara finds herself less in the role of doting wife and more in the capacity of exhausted caregiver.

Gratitude and love notwithstanding, a landmark study of seniors with serious illnesses shows that their spouses, like Barbara, often are jeopardizing their own health — even their own lives — when they care for an ill mate. The study was published last week in the New England Journal of Medicine.

Barbara, mother of five and grandmother of 12, knows her health is wearing out. She's contemplating whether Jack should live in a full-time facility for patients with Alzheimer's instead of in their Sandy Springs home. He's steadily worsened the last five years.

"I need to decide what to do," Barbara said. "My children all say, 'We've lost Daddy. We don't want to lose you.' "

Caregivers of partners with many illnesses — dementia chief among them — are significantly increasing their own risk of death. Dementia in a spouse raised the risk of death in a partner by 22 percent, slightly higher than the risk of spousal death if the partner died.

The study could affect not only the elderly but also the nation's health care policymakers and insurers as 78.2 million baby boomers roll into their sunset years, several researchers and analysts said.

A generation that wondered whether love endures at 64 may well be asking a more pressing question instead: Can you still care for me in old age?

"Health care providers and families need to be mindful that elderly people will be vulnerable with the illness of a spouse in ways we were not aware," said Dr. Nicholas Christakis, the study's lead author and a researcher at the Harvard School of Public Health.

The nine-year study of more than 500,000 couples, funded in part by the National Institute of Aging, is the first such large-scale study to examine not only the effect of grieving the death of a spouse but also to look at caregiver burden, or the health toll on the spouse of a sick person.

Barbara Blum didn't need a study to tell her what she already knows as she cares for her beloved Jack. She had a heart attack in October, had three stents put in and was hospitalized five days. She's down to a couple of hours of sleep a night. Jack roams the house often, placing chairs against doors to keep invaders out, making it hard for her to sleep. She feels anxious.

"He was such a wonderful husband and father," said Barbara. "I was in a bad automobile wreck years ago, and my own mother couldn't have taken as good a care of me as he did. I try to remind myself of that as I deal with this."

Jack gets lost a lot if Barbara lets him out of sight at their apartment complex.

Barbara gets help through adult day care, which Jack attends almost every weekday. The couple has one child who lives in Atlanta and is able to help them regularly.

Even so, the demands wear on Barbara.

For several months, she has been setting out each day's clothes for Jack, who was always meticulous about his wardrobe. She has watched him become careless and sometimes sloppy about his appearance, nonchalant about wearing a shirt stained with coffee or a sweater that doesn't match his trousers. He digs his fingertips into ice cream rather than using a scoop.

Last Thursday, she experienced a heartbreaking first.

"This morning, I called him to breakfast, and he didn't come," she said. "I went to find him, and he was standing there puzzled. He couldn't figure out how to button his shirt. I just broke down in tears."

Jack loves to talk on the phone but can't remember how to hang it up. He asks her the same question over and over again — 11 times in one 10-minute period, Barbara counted on Valentine's Day: Who's Labella, this person who sent us a Valentine's card?

"It's our daughter," Barbara said. "It's her Jewish name."

Barbara also has to police Jack.

"My husband takes things," Barbara said, then quickly corrects herself. "No, he steals things. If something's missing at day care, they'll say, check Jack's pockets."

And yet, Jack is as gentle and thoughtful as he was when Barbara first met him.

"He still tries to open the door for me, and if he sees me carrying the garbage, he tries to take it from me and do it himself," she said. "But I can't trust him to remember where it goes."

It is such heartbreaking loss for Barbara and others, said Dr. William McDonald, the director of the Fuqua Center for Late Life Depression and the chief of the Division of Geriatric Psychiatry at the Emory University School of Medicine.

Over time, the experience begins to wear on caregivers, which puts them at risk.

"The relationship starts to leave, and the responsibility of the caregiver goes dramatically up," McDonald said. "It creates such stress, and you're faced with the stress of it getting worse over time."

Barbara Blum worries most about just that: How bad will Jack's illness get, and how much of it can she bear?

"The hardest part is you don't have conversations any more," she said. "I'll say something, and he just keeps asking questions. Sometimes I tell him to just be quiet. I'm not a saint."