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The New Faces of Caregiving

People across the country take up the challenge. Here are their stories

Millions of millennials are giving back

Members of the millennial generation (ages 18 to 34) have a reputation for being self-involved. But the estimated 10 million millennials caring for adult family members certainly don't fit that mold. About 25 percent of U.S. caregivers fall into that age range, according to AARP and the National Alliance for Caregiving's 2015 caregiving report.

There are particular challenges that these young caregivers face, says Carly O'Brien, a social worker for CancerCare. "Often they have little or no experience with serious illness, with making important health care decisions, dealing with insurance." Many are also long-distance caregivers in new careers, O'Brien adds, and can feel tremendous guilt when they can't visit their loved ones.

Support groups can be helpful, though there aren't many focused on this age range, says O'Brien, who facilitates caregiver groups for people ages 20 to 39 in New York and online at cancercare.org. But having even one person in a similar situation to confide in is critical. "I hear again and again that no matter how well intended they are, their friends or other people close to them just don't get it."

Cargiver profile

Photo by Maisie Crow, LLC

Ken Takeya, 71, has been taking care of his wife Charlotte, 71, for 10 years after she was diagnosed dementia.

The demands and rewards of dementia patients

More than 15 million family and friends provide care to people with dementia, according to the Alzheimer's Association, and most say they experience high or very high levels of emotional stress-. The challenges are very different from those faced by the average caregiver, says Ruth Drew, director of family and information services for the association. For one, there's the emotional toll that comes with, as Drew puts it, "watching someone you're very, very close to lose not just their memory but their personality, their sense of humor, their ability to care for themselves — all of the things that make people who they are."There's also the fact that someone with a dementia disease can require caregiving for years.

"Just do the best you can. If you try to be too perfect, you're going to frustrate yourself."

KEN TAKEYA, 71, of Kailua, Hawaii, whose wife of almost 48 years has dementia, manages his stress by sharing his story with other caregivers — encouraging them to seek respite care and to understand that feelings of resentment are normal. "Every caregiver will get frustrated, myself included."

Ken's own caregiving journey started 10 years ago when his wife, Charlotte, who was having memory problems, was misdiagnosed with Alzheimer's disease. They discovered six years later that her steadily worsening dementia was a symptom of normal pressure hydrocephalus, or water on the brain. The years it went untreated caused serious brain damage.

Charlotte, now 71, has since had surgery, and while she still has trouble communicating, she can now walk with assistance. Ken says, "She's getting better slowly. She's eating regular food now and can recognize more and more people."

He regularly monitors things like her temperature, blood pressure and oxygen level, and has a video camera trained on her when she goes to sleep before him at night. He plays her favorite music nearly 24/7, brushes her teeth, crushes her pills into applesauce to get them to go down easily, walks her to the bathroom.

Their two adult sons moved home to help out, and Ken gets further respite from a senior care center, where Charlotte spends four days a week. During this time he volunteers as a caregiver educator — reaching out to others like him who need resources and advice.

To others whose loved ones have dementia, he says, "It's nothing to be ashamed of." And second, "Just do the best you can. If you try to be too perfect, you're going to frustrate yourself.

(Video) More than 15 million people provide care to loved ones with dementia. Watch Ken’s story.
 


Caregiver

Photo by Taylor Glascock

Marcus Waller, 56, works full-time and has been caring for his mother, Melida Butler, 83, for the past 14 years.

More men fill traditionally female role

Though family caregivers are predominantly women — only 40 percent are men, according to the AARP/National Alliance for Caregiving report— the gender gap is narrowing. Just six years ago surveys found that only 34 percent were men. While male caregivers face many of the same challenges, they also "tend not to have strong networks of support," says Jennifer Tucker, vice president of the Denver-based Homewatch CareGivers, which hosts an online forum called the Male Caregiving Community. "That means they're more vulnerable to stress and stress-related illnesses, including depression."

Surveys have shown that between 40 and 70 percent of caregivers have significant symptoms of depression — and men are far less likely to seek treatment.

"Sometimes I don't want to go home — I want to just drive on by."

MARCUS WALLER, 56, is one male caregiver who doesn't have much of a support network. A full-time mail handler for the U.S. Postal Service, he has spent the last 14 years in Chicago living with and caring for his mom, Melida Butler, 83. She's had rheumatoid arthritis for decades, but four years ago her spine became infected after a spinal tap, and it nearly killed her. "She just never really recovered properly from that," he says.

Today, Waller explains, "She is my light and my darkness at the same time." He loves her of course, but he often feels resentful that so many of his own needs are subsumed by hers.

Evenings follow a familiar pattern: As soon as he gets home from work, he gives his mom dinner and her meds, including eye drops now that the arthritis has affected her eyes. Then he encourages her to exercise, either by riding a stationary bike or walking up and down the block. They relax together in front of the TV — they both like The Walking Dead, he says, "zombies and witches and stuff like that" — before he helps her take a shower and gets her to bed.

What's tough is that Butler can be moody and demanding. "I get depressed," he admits. "Sometimes I don't want to go home — I want to just drive on by."

Though he's never considered attending a caregiver support group (he didn't even know they existed), Waller says that he handles the stress his own way, sometimes performing poetry, which he writes, and singing at various venues around town. It's his crucial outlet for blowing off steam and expressing himself, he says. "It lifts me up mentally and spiritually. I do whatever it takes."

 

Dealing with veterans' invisible wounds

Feeling isolated can be a problem for any family caregiver, but it may be more so for the 5.5 million caregivers of veterans or current members of the military — about 17 percent of all caregivers. Gail Gibson Hunt, president and CEO of the National Alliance for Caregiving, says, "Sometimes they feel as though only people in the military can understand what it's like to care for a veteran."

A high proportion of these caregivers (68 percent) consider their situation highly stressful. The good news is that the Veterans Administration now has what Hunt describes as "the most comprehensive program for caregivers in the country," thanks to the Caregivers and Veterans Omnibus Health Services Act of 2010. The legislation authorized the VA to implement a broad range of services for those caring for veterans or members of the military seriously injured post-9/11, such as paying qualifying family caregivers the amount that a home health aide would cost.

But of the 1.1 million family caregivers of post-9/11 veterans and military members, only about 22,000 are receiving this extensive assistance -— generally those faced with the most severe physical injuries. "The eligibility criteria are very limiting," says Steven Schwab, executive director of the Elizabeth Dole Foundation, which works to raise awareness and support for military family caregivers. "We're partnering with the VA to explore extending support," Schwab adds, "but it will take Congress to change that."

Caregiver

Photo by Matt Eich

Alice Arnold, 69, with her husband D.W., a 65-year-old veteran of Vietnam and Iraq wars.

FOR ALICE ARNOLD, 69, and her veteran husband, D.W., 65, these services make a big difference. She met D.W. in 2008, three years after he was injured in a mortar attack while serving as an Army chief warrant officer in Iraq. He broke a knee and both ankles, cracked disks in his spine and suffered a traumatic brain injury in the explosion.

Now D.W., who lives with Alice on North Carolina's Outer Banks, is considered fully disabled. He walks with a cane, has short-term memory loss and PTSD. He sometimes wakes up yelling at night, and is quick to anger. "These are the invisible wounds," Alice says. "They're the worst part."

But his meds and regular psychiatric consultations through the VA keep his moods relatively stable. The VA has also paid to build a more accessible bathroom and a lift in their small house, and has provided caregiving training for Alice, periodic respite care, a home health aide for four hours twice a week and free medications for D.W., who served in Vietnam as well as Iraq. "We have been blessed," Alice says. "We've had the best of care we can get from them."

The couple is able to spend quality time together sitting by the ocean, watching movies and eating out. "I wouldn't trade my life for the world," she says.

It helps that she has no qualms about requesting the assistance she feels they deserve. "He earned it," she says, firmly. And she encourages other caregivers of veterans to be just as assertive: "You're not used to asking for help. But you have to swallow that pride sometimes and ask."


Caregiver

Photo by Elinor Carucci

Hannah Roberts, 28, is taking a year off from medical school to help care for her mother, Karla Johnson, 62, who was diagnosed with pancreatic cancer last spring.

Millions of millennials are giving back

Members of the millennial generation (ages 18 to 34) have a reputation for being self-involved. But the estimated 10 million millennials caring for adult family members certainly don't fit that mold. About 25 percent of U.S. caregivers fall into that age range, according to AARP and the National Alliance for Caregiving's 2015 caregiving report.

There are particular challenges that these young caregivers face, says Carly O'Brien, a social worker for CancerCare. "Often they have little or no experience with serious illness, with making important health care decisions, dealing with insurance." Many are also long-distance caregivers in new careers, O'Brien adds, and can feel tremendous guilt when they can't visit their loved ones.

Support groups can be helpful, though there aren't many focused on this age range, says O'Brien, who facilitates caregiver groups for people ages 20 to 39 in New York and online at cancercare.org. But having even one person in a similar situation to confide in is critical. "I hear again and again that no matter how well intended they are, their friends or other people close to them just don't get it."

(Video) There are about 10 million millennial caregivers in the U.S.  Watch Hannah's story. 
 

HANNAH ROBERTS, 28, has often logged in to CancerCare's support group since her mother, Karla Johnson, 62, was diagnosed with stage 4 pancreatic cancer last spring. "I don't think many people in my age group have experienced anything like this, so that can be isolating," she says. "It's hard to see them on Facebook going on with normal lives."

She has taken a year's leave after her third year at Columbia University Medical School, moving from New York into her parents' home in the Boston suburbs to care for Johnson. She drives her mother to medical appointments, organizes nursing visits and helps prepare meals, while her dad has taken on more tasks at the architectural firm the couple founded.

Another difficult part of her caregiving role, she says, "is not worrying about the professional and personal goals that I've put on hold." But because patients diagnosed with this particularly aggressive form of cancer typically have months, not years, to live, she adds, "I'm trying to be really in the moment with my mom."

Roberts is also working on a cancer research project at the Boston hospital where Johnson goes for chemotherapy treatments, and is aware of the coincidence of her specialty — radiation oncology — a field she chose two weeks before her mom's diagnosis. "It's been quite surreal," she says.

If there's any good to come out of this experience, Roberts says that as a physician she'll be more attuned to the needs of her patients' caregivers, and understand that the challenge "is definitely emotional, but it's also logistical — just everyday tasks that have to be done, and putting yourself second."


Cargiver profile

Photo by Ryan Young

Grace Estrada, right, is a single mom who is balancing work, raising her two kids and caring for her mother Mercedes, 75.

Squeezed between two generations with needs

Nearly half of all adult caregivers are younger than 50, according to AARP and the National Alliance for Caregiving's 2015 report. Many on the older end of this range are members of the "sandwich" generation: those 40-somethings whose energies are focused both on their school-age children and their ailing parents.

Grace Estrada, 47, a single mother of two in Claremont, Calif., became her parents' caregiver several years ago. It happened gradually, she says — for a while "they were helping me and at the same time I was helping them." Her Mexican-born mother, Mercedes, 75, and father, Gilbert Estrada, who passed away two years ago, watched her children while she went to graduate school and later to her job as a social worker. Then at some point Grace realized that their roles had quietly reversed.

"... I have to be strong. She's my mother. She's everything to me."

Now she and her kids, ages 10 and 12, share their home with Mercedes, whose health issues include diabetes, restless leg syndrome, frequent migraines, serious arthritis and a thyroid problem.

Mercedes is fine at home alone for a few hours at a time, but Grace checks in frequently by phone. She assists her mother with everyday tasks such as bathing and dressing, and keeps track of her complicated mix of medications. And every evening Grace, Mercedes and the children, Jeremiah and Cesiah, take a walk through their neighborhood, Grandma using her walker, the family dog alongside.

Grace has six brothers, though only one lives nearby, so she bears the full weight of caregiving — a fact, she says, that her mother appreciates: "She said, 'I wish I could help you more.' I told her, 'Mom you're done with your work. You did that when we were young.' There's no need for her to do anything anymore." Grace adds that she considers her caregiving role "a privilege, a way of giving back for them bringing you into this world" — even though it takes an emotional toll.

The hardest part, she says, is when her mother grows melancholy: "The kids say, 'Mom, Grandma doesn't want to get out of bed.' That gets me really sad, because I think, 'Is she giving up?' I have times where I'll just go in my room or I'll go to church and be by myself, praying, talking to God. Because I have to be strong. She's my mother. She's everything to me."

 

Caregiver

Photo by Randy Harris

Estelle Sandler assists her partner, Angie DiPrinzio, who is working to overcome the effects of a stroke.

When caregiving is around the clock

A family caregiver's duties can run the gamut. But for some it requires total devotion. Those who work 21 hours or more as caregivers are considered "intensive caregivers" in the AARP report. They claimed the highest stress of all caregivers (a 4.4 rating out of 5).

Estelle Sandler, 68, has a saying taped to her computer: "We never know how strong we are until strong is the only answer." She's at the intensive end of the caregiving spectrum, spending most of her day assisting her partner, Angie DiPrinzio, 67, who is working to overcome the effects of a stroke.

The couple's life has been uprooted since 2008. DiPrinzio, a former personal trainer and serious athlete, had a routine root canal that allowed bacteria into her bloodstream, leading to a blood clot and stroke that nearly killed her. Since then Sandler, a retired teacher, has been helping DiPrinzio regain her balance, as well as relearn tasks as simple as folding laundry and turning on the tap water.

The contrast between their lives today and pre-stroke is sometimes heartbreakingly stark, Sandler says, considering that DiPrinzio once had "balance like a cat," and would start many mornings with a five-mile run.

They live in Cortland Manor, N.Y., but have recently been spending time in Palm Springs, Calif., so DiPrinzio can take advantage of the Neuro Vitality Center, a stroke recovery facility. The center, says Sandler, "has saved my life." It allows her four hours to herself every weekday, when she can do errands like grocery shopping. "But I'm really fortunate," she adds. "Angie works really hard. And we laugh, we have fun. So life continues — I'm hoping for a long time."

Taking on Complex Medical Tasks

Caregiving is difficult under any circumstances. But it's gotten even more difficult in recent years, as more caregivers take on complex medical tasks once performed by doctors and nurses. In fact, 6 in 10 caregivers perform such tasks, according to new findings from "Caregiving in the U.S. 2015," a report jointly prepared by AARP and the National Alliance for Caregiving. More than 4 in 10 say they received little or no training.

"That places an enormous burden on them physically, psychologically, even spiritually," says Matthew J. Loscalzo, executive director of supportive care medicine at City of Hope, a cancer research and treatment center in Duarte, Calif.

The reasons for the increased burden are varied: Medicine itself has become vastly more complex, with new medications, new ways to deliver them and increasingly sophisticated procedures to ease pain and prolong life. Patients are also being released from the hospital much earlier than in the past. In 1980, the average hospital stay was 7.3 days. Today, it's just 4.8 days.

That's slowly changing. New Medicare regulations penalize providers when patients have to be readmitted to the hospital within 30 days, adding a powerful incentive for health care systems to give patients and caregivers the practical support they need to make the transition from hospital to home.

Meanwhile, a handful of initiatives are filling the void. The Rosalynn Carter Institute for Caregiving recently released free training webinars on all aspects of caregiving, the San Francisco-based Family Caregiver Alliance has posted instructional caregiving videos on YouTube, and major medical centers are also producing print and video instruction for caregivers.

But much more needs to be done, experts say. "We have to recognize the increasingly demanding work that family caregivers do," says Barbara Given, a professor at the Michigan State University College of Nursing, "and provide practical help at every step of the way."

— Peter Jaret

 

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