Story URL: http://news.medill.northwestern.edu/chicago/news.aspx?id=219263
Story Retrieval Date: 4/19/2014 5:07:34 PM CST

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After returning from her job as the nursing director of a long-term care facility, Kimberly Turner, 51, comes home and becomes caregiver for her mother, Constance. At 88 years old, she has early onset dementia and congestive heart failure. Even though today is a "pajama day," Kimberly and her 22-year-old son, Ahmed, prepare a breakfast fit for three.


Labor of love: Struggles of being a caregiver

by Donald Leonard, Kimberly Shineand Sarah Sipek
Mar 14, 2013


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Donald Leonard/MEDILL, National Alliance for Caregiving, AARP

In a survey of about 1,300 caregivers, each caregiver selected ways they use most to relieve work-related stress.

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Donald Leonard/MEDILL, National Family Caregivers Association, Family Caregiver Alliance

It’s estimated that in the U.S. caregivers combined work about 31 million hours in a year. Illinois contributes the most of the Midwest states. 

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Kim Shine/MEDILL

In 2008, Kimberly Turner moved to Denmark with her husband, Mikael Nielsen only to return in 2010 to care for her mother, Constance. Now living in Chicago's Bronzeville, she mostly communicates with Mikael via Skype – an Internet application used for online calls and web chat.

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Kim Shine/MEDILL

“I just want to make sure she’s comfortable while she’s here. The main thing is creating memories,” Ahmed Turner, 22, said contemplating life without his 88-year-old grandmother, Constance, who has early-onset dementia.

Today is a pajama day.

For Kimberly Turner, 51, these are the worst kind of days. It means that her 88-year-old mother Constance, who suffers from early-onset dementia and congestive heart failure, is sick and lacks the strength to even get dressed.

It also means that Turner’s plan to get her taxes done today must be cancelled.

But as a nursing supervisor at a long-term care facility in Chicago’s south suburbs and her mother’s primary caregiver, Turner has grown accustomed to putting the needs of others before her own.

“If I don’t do it, then everything is going to fall down around me,” she said.

Turner bears a heavy burden, but her situation is not unique. Nearly 65.7 million Americans are currently caring for an aged, ill or disabled relative, according to the National Alliance for Caregiving’s 2012 report. Despite the high number, the efforts and struggles of caregivers are often overshadowed by the focus placed on the health problems of the elderly population that they serve.

“People don’t understand what we go through,” said LuAnn Arnson, the bereavement coordinator at Spectrum Health Hospice and Palliative Care in Grand Rapids, Mich. So much attention is paid to the needs of the patients that the impact of being around suffering on a daily basis is not considered, she said. 

As a former in-home and hospice caregiver, Arnson experienced first-hand the cost of caring for another person.

“You’re exhausted,” she said. “It’s the result of repeatedly being exposed to uncontrolled pain, restlessness and eventual death.”

Arnson chose caregiving as a career, but the effects she experienced are often magnified among family members who care for sick and aging loved ones without any formal training.

Before Jill Brengle became a registered hospice nurse with Spectrum, she spent 2 ½ years caring for her 92-year-old father who was battling colon cancer.

“It’s so much harder caring for parents because if you get frustrated or angry you take it home,” she said. “I can remember many times driving home and thinking, ‘I’m such a terrible daughter for losing my patience.’”

The feelings of guilt and failure that Brengle experienced are the byproduct of the unreasonable expectations that family members place on themselves.

“Families think of caregiving as something that they are just naturally able to do,” said Lillian Sweeny, a registered nurse and a training educator with the Family Hospice and Palliative Care’s Compassionate Caregiver Training Program in Pittsburgh, Penn. “They don’t understand the impact of taking care of someone 24/7” in a home environment.

Physical Demand

Even though she is a registered nurse, Turner suffered physical ailments while caring for her mother. Since taking on the responsibility in 2010, she has developed back pain and a poor eating habits.

“I eat when she eats,” Turner said, which varies based on how well her mother is feeling each day.

According to the Bethesda, Md.-based National Alliance for Caregiving, Turner’s experience is not unusual. Its most recent survey of caregivers in the U.S. found that 11 percent of family caregivers reported deterioration in their physical health as a result of their caretaking duties. This included an increased tendency to develop serious illness, high levels of obesity and bodily pain.

Judy Bartel, chief clinical officer at Hospice of the Western Reserve in Cleveland, said that a large percentage of physical injuries result from the combination of an overestimation of ability and improper technique.

During her time as a hospice nurse, Bartel encountered this combination when addressing bathing, an area in which family caregivers are not likely to ask for help.

“I once worked with a son who would put on swim trunks and get in the tub and support his father with his arms while washing him,” Bartel said. “Not the safest thing for him or his father.” 

Dave Colley, registered nurse and caregiver training program educator at Family Hospice, teaches proper technique to family caregivers.

“We emphasize where [family members] need to be to spot so that they can be efficient and move their loved one’s body weight,” Colley said. His tips for protecting the back include squatting and using the legs, trunk and thighs to move weight.

In addition, Colley also checks in with questions about family members’ diet and sleep patterns.

The Family Caregiver Alliance recently reported that 60 percent of caregivers had experienced a decline in their diet and exercise regimens since they began taking care of a loved one. In addition, 72 percent admitted to neglecting yearly physical checkups.

“It’s about rest, protection and eating right,” Colley said. “But a lot of times family members are still looking out for the patient rather than looking out for themselves.”

And this is very much the case for Turner, although her two sons, Ahmed, 22 and Sunni Ali, 28, help care for their grandmother as well.

“I don’t exercise and do the things I need to do for myself because I’m always doing something for her,” she said.

Mental Health Consequences

In 2010, Turner was diagnosed with clinical depression and prescribed the anti-depressant drug, Lexapro. Though her depression has lessened since then, there are still days where it affects her. Even so, she tries to remain honest and positive.

“I just look at it for what it is and it’s a short-term thing. I know there’s a light at the end of the tunnel, somewhere,” Turner said.
 
Many in the field consider depression and its symptoms to be the natural consequence of a job that requires their constant attention.

According to Diana Morris, a professor of gerontological nursing at Case Western Reserve University in Cleveland, Ohio, one in three caregivers suffer from some degree of depression.

“They’re hyper-vigilant,” Arnson said. “Ninety-nine percent of caregivers never really let their guard down.”

This phenomenon is represented in the fact that family caregivers rarely have the opportunity to leave the high-stress environment. Professionals, however, do not enjoy much of a break. They are always accessible by phone, Arnson said.

A Virginia Tech University study published in the Journal of Gerontology supports the case for hyper-vigilance. The research found that the more disrupted a caregiver was by the behavior of their loved one, the higher their stress levels became.

Researchers took saliva samples from participating caregivers at five points during the day in order to measure cortisol levels in the brain.

Cortisol levels directly increase with an increase in stress, said Tina Savla, an assistant professor of human development at Virginia Tech and the project’s lead researcher.

The results showed that prolonged exposure to stress impaired the brain’s ability to shut off the receptor that produces cortisol. As a result of the altered brain chemistry, the caregivers were more likely to suffer from depression.

“This inability to recover from the flooding of the brain with cortisol increases the likelihood that a caregiver will experience a sense of burnout,” Salva said.

There is currently no drug treatment to reverse the effects of cortisol on the brain. As a result, the best advice physicians can offer caregivers is to pursue outside interests and get enough rest.

Unfortunately, this advice is not easy to follow. “People don’t have crises on our time,” Arnson said.

Turner also suffers from severe sleep deprivation. She works as a full-time nursing supervisor in addition to her caretaker duties. After an eight-hour night, she usually gets home around 8:30 a.m. and then prepares her mother for breakfast an hour later.

“I average maybe three hours a sleep a day, if I’m lucky,” she said.

Financial Strain

Caregivers spend between 20-40 hours a week caring for their family members, an unpaid service that is valued at an estimated $450 billion a year, according to the CaregiverSurvival Network.

“(It) seems like there’s no end. It’s just a lot of money that I put out every month,” Turner said.

The National Alliance for Caregiving found that 30 percent of caregivers experience moderate to high financial hardships as a result of caring for family members.

But Turner’s situation is different than most caregivers. Her mother owns a six-unit apartment building in Chicago’s Bronzeville neighborhood. Turner took on this financial responsibility after her mother’s failing health prevented her from continuing to manage the building.

In an average month, the building’s expenses can cost more than $6,000.

With the apartment viewed as an asset, Turner’s mother is unable to qualify for Medicaid, a health care program for low-income individuals that covers long-term care for eligible clients.  Nationwide, Medicaid and its Children’s Health Insurance Program provide health care to nearly 60 million Americans.

“The apartment building is in her name so the government believes she is financially stable,” Turner lamented.

In Illinois, more than three million people are currently enrolled in Medicaid, according to the government Medicaid website. Likewise, seniors and persons with disabilities account for 55 percent of Medicaid spending in Illinois, according to the Illinois Department of Healthcare and Family Services.

Even with government assistance the financial burden creates stress for the caregiver, their family and extended family, said Russell Mark, director of programs for the National Alliance for Caregiving. He strongly advises early discussion of finances.

However, when this option isn’t available, he recommends contacting a financial planner or elder law specialist.

“On average, a family is going to probably pick up a minimum of $5,000 in added personal expenses annually. Federal assistance is critically important if someone needs nursing care,” Mark said.

“Making Memories”

Coffee, Turner said, is how she holds everything together.

“I’ve invested too much time, energy and money and if I don’t do it, and keep doing it, there’s a possibility that the building can begin going into foreclosure…and then I’m lost all the way around cause then she has to go into a home,” she added.

Putting her mother into a home is not an option.

“Being a former director of nursing and knowing what long-term care is all about and seeing it with my own eyes, it’ll never happen,” she said.

Even if her mother’s condition worsens, Turner is dissatisfied with the long-term care facilities in the U.S.

“The last thing I want to see is (her) put on a feeding tube. If it happens, it happens. It’s not something I can’t deal with, because I can do it here. But she’s not going in a home.”

Even with the occasional pajama day, the good outweighs the bad. Turner is thankful she is able to care for her mother herself and has learned to find joy in the things most people take for granted.

“When I see my mother enjoying a good meal, and I see her face light up, or when she gets out (of the shower), gets dressed, gets her hair washed and knows she’s been pampered and I see that smile, that makes it all worthwhile.”