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Unseen, unsung

The true toll of caring for an ill family member -- stress, depression and poor physical health -- is only now being tallied.

June 11, 2007|Melissa Healy | Times Staff Writer

LISA WOOD describes herself as a woman in the middle -- a daughter and mother struggling to nurture one new life and, with equal tenderness, attend another on a fitful journey to its end.

At 44, she cares for a 5-year-old daughter and a once fiercely independent mother with early Alzheimer's disease, who at times can be as demanding and exasperating as her child. The result, says the Sunland resident, is a life lived on a hamster wheel of constant motion and little progress.

"There are times when I'm so stressed I know [my blood pressure] has to be high," says Wood. "I feel trapped sometimes; on the bad days I feel trapped."

At some point in their lives, vast numbers of baby boomers and their children will become caregivers for ill and elderly relatives. Ten years ago, a study estimated that nearly 1 in 4 American workers provided informal care for an elderly or ill family member. Today, experts think that about 46 million American adults (or 1 in 6) do so and predict those numbers will surge in the coming decade, as a wave of baby boomers age, expected life spans grow and institutional care becomes more costly and uncertain.

Studies show that few will regret the time spent caring for an ill or dying relative, but new research suggests that many will pay dearly in terms of family income and their own mental and physical health.

The majority of those caregivers who are employed juggle paid work and elder-care, reducing hours on the job (and often pay, promotions and pensions) to do so. A 2003 study found that family members caring for those with dementia suffered suppressed levels of immunity for three years following their stint of caregiving, raising their risk of developing a chronic disease themselves. Other surveys have found that compared with the general population, caregivers -- especially those with intensive caregiving demands and those already in fair or poor health -- are less likely than their noncaregiving peers to attend to their own healthcare needs, less likely to exercise or see their doctor regularly and more likely to eat poorly and drink alcohol excessively.

For the 30% of caregivers who are elderly themselves, and hence more likely to be in frail health, the experience can actually be their undoing. A 1999 study published in the Journal of the American Medical Assn. found that when a spousal caregiver with a history of chronic disease was under stress due to caregiving, he or she was 63% more likely to die during the study period than a peer without such caregiver responsibilities.

And depression is nearly epidemic among this population -- more than half of family caregivers appear to suffer substantial depressive symptoms, says Kathleen Kelly, executive director of the Family Caregiving Alliance in San Francisco. In a recent survey of caregivers who identified themselves as being in fair or poor health at the outset of taking on duties, 91% suffered from clinical depression.

It is a reality underscored by Wood, who says she has struggled with the isolation, the never-ending needs and the growing irritability of her mother as Gwendolyn Grimes' ability to function independently ebbs. Wood says that some days, she's calm. But on many others, her moods swing between annoyance and anger about her predicament to guilt and sadness about her mother's condition.

"I don't always have the joy that I should," she says. "I need to work on that."

On occasion, Wood questions whether her family's house is the best place for her highly social mother. But converting a cottage to house the 83-year-old was costly, and that cost has foreclosed the option of placing her in a facility with more structure and social interaction. Also foreclosed for Wood is the option of escaping to the rewards and distractions of a workplace away from home. Wood says she "had a bit of a career" going, but left her job in 2001 when her mother developed breast cancer and needed her help.

As her duties have mounted, Wood says, a few key things have gone by the boards. There's a full night's sleep, for one, and privacy for another. Also gone from Wood's caregiving existence are the mountain hikes and visits to the gym that used to be part of her routine, and the medication that she is supposed to take to control her high cholesterol. And finally, there's the loss of a mother's help and guidance in the quotidian mysteries of parenting -- a promise that is fading like the memories in the ailing mind of Grimes.

"Sometimes I just want to be a daughter," says Wood, her voice catching on tears. "There are things a woman has an idea about sharing with her mom when she has a child.... To have a second child when what you wanted most is your mom, it's just hard."

For caregivers, the unrelenting emotional and physical stress of tending to an ill or dying loved one appears to set off "a downward spiral" of health, says Richard Schulz, director of the University of Pittsburgh's gerontology program and author of a landmark study of informal caregivers.

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