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Caregiving
By Natalie Pompilio

How to Share Caregiving Duties Among Family Members

Families who distribute the caregiving load provide better care for the patient—and themselves. Try these tips to get everyone involved.

What began for Kathy Villella as a limp foot and difficulty walking without assistance led to a diagnosis of progressive multiple sclerosis (MS) in 2008. A few years later, she had to retire after 35 years of teaching, use a wheelchair exclusively, and rely on her family—her husband, Ed, daughters Samantha and Nikki, and son, Brent—for care. Fortunately, they fell into caregiving roles that played to each person's strengths.

The Villella Family
Kathy Villella (seated at right) with her husband Ed and their next-generation team. Courtesy: The Villella Family

Ed manages most of his wife's daily needs, including driving her to medical appointments and overseeing finances. Samantha, 38, is the family's advocate, researching new treatments, acting as a liaison with doctors, and managing their nonprofit organization, KV's Krew, which works to increase MS awareness and raise money for research.

Nikki, 36, who was diagnosed with relapsing-remitting MS in 2014, fills in for Ed on weekends, taking Kathy to dinner with former colleagues or to the hairdresser and going along on medical outings, while keeping her own disease in check. Brent, 33, handles home upkeep and repairs, while his wife helps by preparing and delivering food. When out in public with Kathy, the sisters handle toilet visits. Ed is no longer allowed to choose Kathy's jewelry: He once put different earrings on her to be funny.

"There was no sit-down meeting with a long list of responsibilities," says Samantha. "We all have stuff we're really good at."

It's a family disease, she adds. "That's how we live it. It affects all of us."

Expand Your Team

A diagnosis of a neurologic disorder is a call to action for many families. But the Villella family is unique in how easily they've found roles that help their mother and provide support for one another.

Kathryn Pears, founder of Dementia Care Strategies in Conway, SC, says her own experience as a caregiver and advocate has shown her that "caregiving responsibilities are rife with opportunities for resentment."

"Some families band together, establish clear areas of responsibility and work effectively as a team, but that seems to be the exception rather than the rule," says Pears. "In my personal and professional experience, responsibility generally falls to one family member. A common pattern seems to be, 'You are doing such a great job of caring for the person that I get a pass.'"

In years past, caregiving was primarily a woman's job, but that's changing, says Beth Kallmyer, vice president of constituent services for the Alzheimer's Association. A 2017 report by the AARP found that the gender breakdown among caregivers was 60 percent women and 40 percent men. Eight years ago, a similar report found that 34 percent of caregivers were men. (The Alzheimer's Association has drawn similar conclusions.)

Ask for and Accept Help

An ongoing challenge, Kallmyer says, is caregiver isolation. A 2017 Alzheimer's Association survey of more than 1,500 adults, including current and past caregivers of Alzheimer's patients, found that 64 percent of caregivers felt isolated or alone in their situations, and more than 84 percent would have liked more support.

The number one reason non-caregivers gave for not helping was that they felt another family member was managing the situation.

"Many times, main caregivers, whoever they are, think it's obvious that they need help. They're like, 'What's wrong with you? Why aren't you volunteering?'" Kallmyer says. "As the caregiver, you have to ask specifically for what you need, and that can be hard sometimes. For example, 'I'm going out of town this weekend and I need someone to drive Mom somewhere on Saturday and Sunday.'"

Even harder, for some caregivers, is accepting help when it's offered, says Maisha Robinson, MD, assistant professor of neurology at Mayo Clinic in Jacksonville, FL. "That's one of the primary issues I see. Caregivers are offered help but they don't accept it." That's an important point to remember, she says. When help is offered, don't turn it down.

Communicate Often

Anne Rathman's mother was 55 years old when she was diagnosed with young-onset Alzheimer's disease in 2012. Rathman was still in college, so her older brother and her aunt took on the caregiving duties. Two years later, Rathman replaced her aunt as one of her mother's caregivers, and there were some tensions with her brother.

"It was very hard to figure out how to make it a 50-50 co-guardian relationship instead of one person taking the lead," says Rathman, 26, of Eden Prairie, MN. "With family dynamics, it can be difficult communicating about something so close to your heart."

After multiple misunderstood text message exchanges that put both siblings on edge, they made a rule: No more texting about issues that involve decision making. Those require phone conversations or in-person meetings. If the siblings disagree during those decision-making sessions, they remind each other that it's about their mother's needs, not theirs.

"When things get heated, I try to say, 'What would Mom want?' Mom wouldn't want us to be fighting about this. That's the last thing she'd want to happen," Rathman says. They also take great pains to ensure that each sibling is pulling his or her weight.

"There has to be constant communication: This is expected of me. This is expected of you," she says. "When we talk, I always express gratitude, and I think he appreciates that."

Avoid Assumptions

Assuming one person can handle everything can lead to tensions. Stephanie Pratico's children, John and Sara, have Down syndrome. When John, now 24, was younger, his father was able to help out thanks to his rotating schedule as a firefighter. When Sara, now 19, was born, Pratico's husband withdrew.

"He took a back seat because he felt I could do a better job," says Pratico, who lives in Hamilton, NJ, and manages the Children's Hospital of Philadelphia's Trisomy 21 Program. "He thought I had everything under control. I didn't."

The couple separated when Sara was 2 years old. When they divorced, one of Pratico's friends noted that her husband hadn't provided much support with the children's needs anyway. Still, Pratico says, the parting was devastating on many levels.

"Even if it's just the illusion that someone's there, you pray for the 15 minutes you can shower in peace," Pratico says. "People ask me if my marriage didn't work because of my children, but I don't believe that. I just believe that the tension and stress magnify the things that are missing, and you don't have time to fix them."

Create Partnerships

Pratico remarried in 2006. Her husband, Michael, tries to take on at least half of the family's caregiving responsibilities, she says. He shares in medical and education decisions, attends Sara's Individual Education Plan meetings, and has taught John how to shave and give a strong handshake.

"I still do most of the coordinating, but he's a partner," Pratico says. "I always say he married me because he fell in love with my kids."

Work Together

The first step to success is getting all potential caregivers working together, says Anne Leserman, assistant director of community services for the Huntington Disease Society of America.

"Creating a village to get things done is really critical," she says. "Some people are in denial, so instead of saying, 'This person has Huntington's,' focus on what's happening in the moment that everyone can agree on."

If the patient is falling and getting bruised, for example, the caregivers can find ways to make the home environment safer. If the patient is losing weight, the team can decide how best to provide healthy meals. If the patient can't be trusted to operate a stove anymore, maybe a microwave or prepared meals would be better.

"Some people run into the fire and others run away," Leserman says. "Getting everyone to work together to put out the fire safely is the goal."

Encourage Help from Everyone

One of the complaints Amy Goyer, the AARP's family and caregiving expert and author of Juggling Life, Work, and Caregiving (American Bar Association, 2015), says she hears most frequently is, "I'm doing more than my siblings are."

"It's almost impossible to have a completely fair distribution of caregiving responsibilities among everyone," Goyer says, "but everyone has to do something. If you're not pulling your share of the load—'I don't know how to do that.' 'My sister likes doing that.'—you're fooling yourself. You can learn."

Some people use distance as a reason not to be involved with caregiving. In fact, "not living in the same area" was the second most common reason people gave on the Alzheimer's Association survey when asked why they did not help with caregiving.

That's no excuse, Goyer says. For about 10 years, she was the primary caregiver for both of her parents. Her mother died four years ago, and Goyer now cares for her 94-year-old father at her home in Phoenix. One of her sisters relocated from Ohio to Arizona to help.

Another sister, since deceased, sent her chocolate-covered strawberries and a kind note, a gesture Goyer still remembers. The third sister, who lives in California, visits for at least one week each year, tackling projects that Goyer has saved up for her, such as cleaning out closets and landscaping.

"Even if it's not hands-on care, she can come in with a lot of energy and do things that need to be done. It makes me happy every time I see the flowers she planted," Goyer says. "Just visiting gives the caregivers a boost, as long as you don't create more work for them."

Distribute the Care

Corina Villalobos, now 69, was diagnosed with Parkinson's disease 11 years ago, when family members noticed her right hand was shaking during lunch. That prompted her four daughters to move her from Mexico to Arizona. After living with one of her daughters in Tucson for a few years, Villalobos moved into daughter Ruby Rendon's home in Tempe five years ago to take advantage of programs offered by the nearby Muhammad Ali Parkinson Center at Barrow Neurological Institute in Phoenix. Rendon, 40, works full-time and has a husband and three children between the ages of 15 and 21.

A caregiving class at the Muhammad Ali Center has equipped Rendon with tools and tips to manage her load, she says. "If I need help, I call one of [my sisters] and say, 'Can Mom stay with you for a couple of days?'"

The sisters have also established a schedule for their mother built around the center's programming. "If Mom doesn't have anything going on, she'll go stay with my sister for a few weeks," Rendon says. "Mom likes it. She always has her little suitcase ready to go just in case."

Plan for the Future

Of course, there have been tensions. What's helped, Rendon says, is learning about the disease and keeping everyone up-to-date on their mother's needs and physical changes. "It took a couple of years to figure it out, but until she needs care 100 percent of the time, what we have is working," she says.

At the moment, Rendon says, her mother is independent, but Rendon has made changes to her house to accommodate her mother's physical limitations. For instance, she replaced the tub with a shower in the bathroom and made the toilet a little higher. She also met with a social worker to learn about the various options available for when her mother needs more help. "I can have someone look after my mother for a few hours during the day, or I can take my mom to a day care center for adults while I'm at work."

Keep the Team Lean

Corina Villalobos with daughter
Corina Villalobos with daughter Ruby Rendon. Courtesy: Ruby Rendon

It's important to realize that some people who should step up and help won't, says Pears, of Dementia Care Strategies. She advises dropping those people from your team. "Don't waste time and emotional energy on recalcitrant family members or friends," she says. "The reality is there will always be some people who simply can't or won't lend a hand. Cut them loose."

Ashley and Will Bermeo's sons were "good-sized, healthy twins" when they were born 18 years ago, their mother recalls. Perhaps that's why some relatives had a hard time accepting it when Javier was diagnosed with myasthenia gravis (MG) at 15 months and Miguel received the same diagnosis seven months later. "When they were first diagnosed, up until they were about 10, we had some family members who didn't really get it." Ashley recalls.

One relative continued to make meals with red meat even though it was difficult for Javier to chew it, saying he was simply being picky. Others noted that the boys seemed healthy. "When we were younger, we were still able to do a lot of things. We played soccer and got scuba certified," says Miguel, whose disease has been in remission for about a decade. "They saw that, but they didn't see behind the scenes, the ice baths and the days when Javier and I would have to just rest and recuperate."

Stick with Supporters

Fortunately, most of the Bermeo family stepped up, which was especially important when Will Bermeo was deployed overseas with the United States Army for year-long stints from 2003 to 2004 and 2006 to 2007. He also served shorter tours in 2008 and 2009 and a six-month domestic assignment in 2005.

Three family members took turns driving with Ashley between Palm Coast, FL, and Duke University Medical Center in Durham, NC, where the twins received treatment. A beloved aunt spent a summer helping the family immediately after the twins' diagnosis and was present for every medical milestone for years.

"We just stuck with the family members who could understand," Ashley says. "We gave them information about the disease, and they educated themselves and got CPR certified." The twins, who live in East Palatka, FL, with their parents, graduated from high school in May and are looking ahead. Javier would like to study economics, perhaps at the University of Florida. Miguel wants to fly planes and hopes to attend Embry-Riddle Aeronautical University.

"Our motto is, 'We have MG, but MG doesn't have us,'" Ashley says. "They have it, but we still want them to enjoy life as much as possible."