Caregiving Is Killing Us: A Nation Of Daughters In Crisis

For family caregivers, everything is fine until it isn’t.

One cough, minor medical procedure, or incident of forgetfulness can spiral into months and years of emergency department visits, confusion, financial stress, and strained family relationships. That’s what happened to Yolanda Carter 11 years ago after her mother had knee surgery.

“The hospital called me every five minutes,” said Carter , 46, of California. “My mother was trying to break out of the hospital. She went from kind of okay to can’t drive to living in assisted living in two years.”

Carter initially attributed her mother’s behavior to the ordinary stress of aging. However, signs of dementia increased as her mother frequently got lost, missed appointments, and grew agitated and violent.

“You have to constantly watch people with dementia because they want to leave,” Carter said. “I used to travel for work, but I had to quit my job. Since then, I haven’t been able to find comparable income. I have had jobs, but I couldn’t have a career anymore.”

While Carter has siblings, they have not taken an active role in their mother’s care. Carter is managing her mother’s care and raising her daughter with the help of a loving and supportive husband. But sometimes it all gets to be too much.

“Even though I act like I’m tough, I’m really not,” said Carter. “I don’t wear my emotions on my sleeve. No one knows how tired I am.”

The Costs of Caregiving 

Carter is not alone.

Roughly 66 percent of all family caregivers are women. The average caregiver is a 49-year-old woman who works outside the home and provides at least 20 hours a week of unpaid care to her aging parent, according to the latest data from the Family Caregiving Alliance.

While men are caregivers, women spend as much as 50 percent more time than men in providing care. Survey data analyzed by Rich Johnson and Josh Wiener at the Urban Institute found that daughters account for seven out of 10 adult children who help frail parents. Daughters are also five out of every six adult children responsible for the daily, labor-intensive tasks such as feeding, bathing, and dressing that keep their parents out of a nursing home bed.

The work may be unpaid, but it doesn’t mean that it’s free.

Women bear significant financial, emotional, and health costs for caring for aging parents, especially if they are also raising children.

Caregiving has a significant economic impact on the family – whether it’s paying for prescription medications, installing a ramp for a wheelchair-bound parent, or paying for assisted living home expenses not covered by Medicare, private insurance, or long-term health insurance.

More money is needed to cover these expenses. But female, family caregivers often limit their earning potential to take care of frail parents by working fewer hours, passing up job promotions, training and other assignments that lead to career advancement, taking a leave of absence, or switching from full to part-time employment.

A 2011 MetLife study estimates that female caregivers lose about $324,044 in lost wages and Social Security benefits.

One four-year study found that women caregivers were nearly six times as likely to suffer depressive symptoms and anxiety than non-caregivers. Researchers also found that women caregivers are also more likely to defer their health needs while caring for others which can lead to significant decline in their own health.

Photo Credit: www.ml.com

Well-meaning friends may suggest that we take time out for self-care, but that’s not always possible.

Debra Gibson, 55, of Mississippi cared for her critically ill mother and husband while taking care of two grandchildren while her youngest daughter worked. On some days, Gibson had no choice other than to bring her grandchildren to the hospital while she looked after her husband and made a makeshift pallet on the closet floor for the children to sleep.

“I used to cry every day,” Gibson said. “My break was going outside in the backyard and screaming. Then, I would get myself back together and go back in the house to take care of my mom.”

Gibson found comfort in her faith to see her through.

However, women caregivers are also at increased risk of: elevated blood pressure and increased risk of developing hypertension; lower perceived health status; poorer immune function; slower wound healing; and an increased risk of mortality.

In short, caregiving is killing us.

Photo Credit: www.nia.nih.gov

A Constellation of Challenges 

Family caregivers face a constellation of challenges. Among them are care, family, and money.

Care includes managing medications, making decisions, providing day-to-day care, dealing with hospitals and doctors, and finding the right care.

“When you start taking care of your parents, it’s a race against the clock to get the experience and knowledge you need in the shortest amount of time possible so that you don’t run out of energy or money or both,” said Anne Tumlinson, a health care and public policy expert with 25 years of research and consulting experience in post-acute and long-term care financing and delivery.

Long-standing family dynamics, especially sibling relationships, become magnified when a parent is critically ill. It’s often up to the primary family caregiver, who is in most cases the daughter, to figure out how the family will pay for the cost of care, as well as handle wills, legal issues, Medicaid, and private insurance.

However, the most significant yet unspoken stressor female, family caregivers face is the expectation that they will continue to do and be it all.

Women are still expected to be the perfect mother, wife, and employee while taking care of an elderly parent who demands more of their attention as their health declines. Black women and other women of color face additional pressure to live up to expectations of the “strong” one or dutiful daughter who will take care of everyone without a complaint or thought to her own needs.

“We (women) think we are the greatest multi-taskers,” said Dawna Fields*, 47, of California. Fields’s mother is in the throes of advanced dementia. “But when it all came to a head, I was not.”

Fields wasn’t sleeping because her mother was up at all hours. Her husband and son felt neglected. She stopped exercising and experienced back issues. Finally, her husband insisted Fields rest at a resort for a few days after her recent back surgery.  (Continue)

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Caregiving Is Killing Us: A Nation Of Daughters In Crisis