Grandpa and boy, both with hemophilia

Generation Sandwich

Caring for aging parents and children with bleeding disorders
Author: Sarah Aldridge

Growing kids. Aging parents. Adult children in the middle. People raising their children while coordinating care for their parents constitute a new generation—the sandwich generation.

According to a 2005 study by AARP, 44% of Americans between 45 and 55 years old have aging parents and children under 21 years old. It identified the typical caregiver in the US as a 46-year-old woman with some college education who works outside the home and provides at least 20 hours of care per week. As men in the bleeding disorders community continue to live longer, a relatively recent phenomenon, many of their daughters play dual roles—caregivers to kids and parents with chronic health conditions. In addition, they have their own healthcare concerns—many are carriers, and a rare few have hemophilia.

Gina Dunn, 47, of Oceanport, New Jersey, fits this 21st-century demographic. She is the mother of three children—Elizabeth, 13, Alexandra, 8, and Nicholas, 11, who has mild hemophilia A. Further, she oversees some of the medical care for her father, Umberto Rescinio, 79, who also has mild hemophilia A. In ­addition, Gina works full-time as a ninth-grade teacher.

“When you have a child with hemophilia, you make the decisions,” says Gina, who is divorced. “But when you’re trying­ to help a parent, you can’t say, ‘This is the best way to do this.’”

Medical Advisory Role

“With an aging parent, the focus may not be the hemophilia. They’ve lived with it all their lives and have a handle on it,” says Diane Standish, LSW, of the Hemophilia Center of Western Pennsylvania in Pittsburgh. “Diabetes, arthritis, heart problems—anything else can be the primary issue.”

The primary health issue for Umberto, a semiretired certified public accountant (CPA), was carotid artery disease—blockages in the neck arteries from a buildup of plaque. Gina stepped into the role of caregiver when her father needed carotid artery surgery in 2005. Then her knowledge and experience with her son’s hemophilia came into play. “My mother came to me and said, ‘I want to show you the test results,’” says Gina.

Gina’s mother, Margaret, is a registered nurse, so Gina felt she could appeal to her through their shared medical knowledge. Gina recommended that her father be seen at Newark Beth Israel Medical Center’s Comprehensive Hemophilia Treatment Center, her son’s HTC, which she considers “tops.”

However, not all of Gina’s advice was well taken. The HTC was 50 minutes away, and her parents were content with their local hematologist. “They felt comfortable with my father’s hematologist, who was on staff at the hospital where the surgery was performed,” Gina says. The local hematologist and HTC did not agree on the management of her father’s care. Gina came down firmly on the HTC’s side. “At one point I had to say, ‘This is what I think needs to be done, but I can’t make your decision for you. You need to make your own choice.’”

In the end, Umberto’s blood work was done at the HTC. Gina spoke with the surgeon before her father’s surgery and was there during the presurgery infusion.

While she did not win all the battles, Gina had what she calls “little wins” with her father. “He’s now going to the treatment center and getting all the blood work done there,” she says. “At least I was able to smooth the path for that.”

Gina’s experience with treatment protocol differences is common. “There are always going to be the standard generational differences between the parent and the adult child in terms of treatment philosophy,” says Standish. She attributes it to the advancements in medicine over the years. These different medical care protocols can cause friction between the generations. “The way that you as a mom may choose to treat your child with a bleeding disorder may be completely different from the way your grandparents raised your parent.” Most older patients are reticent to change after years of following a familiar protocol, she says.

Family Affair

Standish advises adult children to share caregiving duties with other family members, if possible. “Enlisting other family members is the best option,” she says. “If they’re available and they’re all willing, they can all pitch in.”

In Gina’s family, there is a divide-and-conquer mentality among her siblings. One brother, a lawyer, handles her parents’ legal issues while another brother, a CPA like their dad, handles the financial issues. “Once I got involved with my son’s hemophilia and became an advocate for him, I started handling my parents’ medical stuff,” says Gina.

In return, Gina’s parents offer what support they can. They are available to watch their grandchildren after school when Gina has appointments. And they are there during emergencies. When Nicolas bumped his head at recess, Gina had to make a trip to the emergency room. Her parents didn’t think twice about coming over to her house to greet Elizabeth and Alexandra when they got home from school.

The Rescinio family sticks together, no matter what. “We’re a typical Italian family,” says Gina. “We’re always in each other’s business. We don’t always agree with each other, but we always have each other.”

Parenting Your Parent

Amy Denton of Howell, Michigan, has a slightly different caregiving scenario. She is married to Jay and has two young children—Claire, 2, and Nolan, 3 ½. Nolan has severe hemophilia A, as does Amy’s father, Gil Ferguson, 62, a semiretired payroll administrator for a chain of nursing homes. After Amy’s mother died in 2006, she became her father’s primary caregiver.

“I took over a lot of the caregiving role that my mom used to provide for my father,” she says. “I’ve taken over his infusions, which is something she primarily did for 35 years.”

Gil had been treating on-demand for decades, but Amy saw the benefit of prophylaxis, which Nolan has been on since he was two days old. Convincing her father, though, took time. “I can’t say he’s always quick to react. He really dragged his feet,” she says.

Six months later, Gil agreed to try prophylaxis. While this scenario is not typical, it worked for Gil. “That took a lot of pushing, a lot of persuading and a lot of reminding,” Amy says. But it was worth it—Gil has had no major bleeds since he started prophylaxis. “He certainly sees the benefit of it,” says Amy.

Managing parents’ affairs, especially healthcare issues, entails assuming a whole new role. “It’s a complete role reversal, and it’s uncomfortable for both sides,” says Standish. “The parent does not want to be questioned, and the adult child may resent having to do that. The daughter doesn’t want to step on her parents’ toes. She may worry and have anxiety about how much she should do.”

In her expanded role overseeing her father’s care, Amy has had to find a way to communicate with Gil. “I preface everything that I do or say with, ‘Dad, I’m not trying to be overbearing, but…’ My approach is, ‘I’m only saying this because I care about you.’”

“Women tend to be the ones who give the nudge,” says Standish. “They’re the ones saying, ‘Hey, remember, you have to do this.’”

With her mother gone and her father living alone, Amy feels the weight of that responsibility. “I do have to parent my parent. Of course, I respectfully do that. I hope my father respects my judgment.”

One area of concern is Gil’s lack of exercise. “He really does lead a very sedentary lifestyle,” Amy says. She and her father walk once a week after she infuses him at her home. But Amy feels that’s not enough. A session on the benefits of hydrotherapy at the National Hemophilia Foundation‘s 59th Annual Meeting in Orlando, Florida, in November 2007, grabbed her attention. “I’m trying to get him to go with me to a local senior aquatic therapy program. I’ll be the youngest senior citizen there,” says Amy, laughing.

Nutrition is another concern. “I’ll say, ‘Dad, what did you eat for dinner?’ He’ll say, ‘Oh, I had an egg.’ One egg? That’s it?’” says Amy. To make sure Gil is eating well, she invites him over once or twice a week for dinner. Her brother provides meals, too—he brings a homemade casserole once a week. One solution that has provided peace of mind for everybody is a home food-delivery service. “He can go online and order. It’s delivered right to his door. That way, at least, I know he is getting nutritious food,” Amy says.

But none of these changes has come easily. “I have to keep the pressure up for all these things,” says Amy. “The minute I relent a little bit, he will fall back into the same routine. I have to be kind of pushy about it.”

SELF-Care Rx: R & R

Overseeing the healthcare needs of children and parents can mean that women neglect their own needs. “I don’t think this is unique to the bleeding disorders population, but most moms do not take care of themselves,” says Phyllis Kandl, MA, program manager of the Newark Beth Israel HTC. “They’ll come into our treatment center with their sons and say, ‘Oh, by the way, I’m having a procedure next week.’” That’s when Kandl says, “Wait a minute, remember you’re a carrier. Get your factor level checked first.”

“One of the biggest issues these women face is figuring out how to balance,” she says. “They’re juggling a lot.”

Stress is inherent in taking care of so many things at once. So is guilt. “The compelling issue is always going to be guilt with the sandwich generation,” says Standish, the social worker from Pittsburgh. “Trying to divide yourself all those different ways makes you feel like you’re constantly shortchanging everyone.”

[Steps for Living: Managing Stress]

Amy confesses that she has very little time for herself. As a stay-at-home mom, she has kids underfoot most days. Children’s story time at a local bookstore and play dates are treats for her, she says. Having just spent the past 18 months pursuing a night school program to earn her master’s degree in business administration, most of her spare time has been spent studying.  “Frankly, going to the grocery store is a great private trip for me,” she says.

[Steps for Living: Babysitters and Play Dates]

Women who bear the burden of caregiving need breaks. Standish recommends doing things that are enjoyable or bring relief. “If you can, fit in things just for yourself, whether it be a manicure, exercise or prayer—anything that gives you a little time and space alone.”

Standish also recommends keeping social networks alive. “It’s so important to have a friend who will listen to you—somebody you can be yourself with and not have to take care of.”

Women who give need to receive, too. “You have to have a sense of being selfish and do things for yourself,” Amy says. She enjoys going out for dinner or having a glass of wine with girlfriends. She is involved with her local chapter of MOPS International, a Christian organization for mothers of preschoolers. “It’s nice to have adult conversation while the kids are cared for,” she says.

Gina’s alone time comes twice monthly, when her children spend the weekend with their father. Although she still feels she’s on call if medical issues arise, she makes time for relaxation. “A girlfriend and I get together once or twice a month to make some good food and watch DVDs of old movies.” Two of Gina’s favorite pastimes are reading and dancing. “Salsa dancing is a great release for me,” she says.

When stress hits, Gina combats it with her faith. “I’ve been trying to spend some time each day focusing inward and ask for clarity for what I need each day. Church is an important part of my life.”

Reaping Benefits

Although overseeing the needs of two generations can be demanding, it also has its benefits. “My kids and my father see each other twice a week. Grandpa likes his time with his grandkids,” says Amy. “I get such gratification watching the two generations learn from each other.”

Gina hopes that helping her dad pays a small portion of the debt she feels she owes her parents. “As children—even as adult children—how can you ever repay your parents? The only way is through our children, by doing for them what our parents did for us.”