Epilepsy and the family: Caregiver stress and sibling experiences


  • newswise-fullscreen Epilepsy and the family: Caregiver stress and sibling experiences

    The DeWoody family

  • newswise-fullscreen Epilepsy and the family: Caregiver stress and sibling experiences

    The Scheinman family

  • newswise-fullscreen Epilepsy and the family: Caregiver stress and sibling experiences

    Anita Mago

  • newswise-fullscreen Epilepsy and the family: Caregiver stress and sibling experiences

    Nina Mago

  • newswise-fullscreen Epilepsy and the family: Caregiver stress and sibling experiences

    Credit: Epilepsia Open. 2019 Jun; 4(2): 293–301.

    The frequency, severity and unpredictability of seizures have multiple effects on families.

Newswise — About two-thirds of people with epilepsy can have their seizures controlled with medication. Another small fraction undergoes successful epilepsy surgery. The others—which include millions of people around the world—must live with drug-resistant epilepsy. Still more have uncontrolled seizures because they have no access to treatment.

Seizures affect their daily lives in hundreds of ways—as well as the lives of their family members, such as parent caregivers and siblings.

The seizures and their consequences affect every aspect of a caregiver’s world: their physical health, emotional health, psychological health, social relationships, education, employment, finances and futures. These multiple effects often result in stress and anxiety.

A perfect storm for traumatic stress

Caring for someone with uncontrolled epilepsy can be like living in a constant state of danger. There will be another seizure, but no one knows when. Even for those who have witnessed hundreds of seizures and know exactly what to do, seizures generate stress. Someone they love is in distress. Something different could happen this time. The seizure might go on for too long. Their loved one might stop breathing. They just don’t know.

Stress is a normal part of everyday life, with stress-response systems that alert people to danger or motivate action. But the stress associated with caring for someone who has uncontrolled seizures ticks all the boxes for traumatic stress: it’s severe, recurring, chronic and unpredictable.

“Many parents who care for children with special needs, especially ones that require them to be hypervigilant, are suffering from post-traumatic stress disorder (PTSD),” said Eileen Devine, a private-practice therapist in Portland, Ore., who focuses on parents of children with special health care needs.

Research on the effects of epilepsy on caregivers and families is relatively sparse, though nearly every study concludes—somewhat obviously—that a heavy stress burden exists and that it can affect family relationships, income and emotional health, including PTSD.

A 2019 study in Epilepsia Open examined seizure burden in young children and the effects on parents. The study concluded:

  • Seizure unpredictability is an important contributor to seizure burden.
  • Seizure unpredictability creates a constant state of impending or actual crisis.
  • Parents experience the long‐term effects of their children’s seizures as a type of chronic traumatic stress disorder

And yet, it’s still largely unacceptable for parents to acknowledge how stressful and exhausting it can be to care for, love and live with someone who has epilepsy.

“It’s hard for many parents to recognize or admit, because it can feel as though they are betraying their child by doing so,” said Devine. “If we can realize that we can love our children immensely and also recognize that parenting can be a traumatic experience due to their illness, that is the first step towards recovery and reclaiming health of body, mind, and spirit.”

Recognizing and normalizing caregiver stress

Recognizing stress is another crucial step; it can be difficult for caregivers to identify their own feelings when they’re focused on caring for someone else. According to Devine, the initial signs of relational stress—conflict between a person and other people, or a person and the environment—is moodiness and irritability. People also often experience physical manifestations – aches, pains, digestive issues. They may begin isolating themselves, lashing out at people, feeling resentful or distrustful, and being distracted or agitated.

Yssa DeWoody uses objective measures to make sure she’s on a somewhat even keel. “I look at a checklist every now and then and think ‘Okay, am I not delegating anything? Am I being compulsive?’” she said. “There are all kinds of checklists for anxiety and stress and it’s good to use those, because you can lose perspective and think you’re fine when you’re not.”

DeWoody and her husband Andrew have three daughters. The youngest, 13-year-old Marie, has Ring Chromosome 14 Syndrome, a rare genetic condition characterized by seizures and intellectual disability. The DeWoody family is profiled in another article.

DeWoody emphasizes that there’s an urgent need to acknowledge and normalize caregiver stress and anxiety on a societal level: in doctor’s offices, workplaces, with friends and other family members. “We need to give parents permission to talk about these issues,” she said. “The whole acknowledgment that things are going to be difficult is important.”

Sources of stress

Caring for someone who has uncontrolled seizures can have a range of effects that touch every aspect of life. The 2019 Epilepsia Open article cited 13 categories of stressors. Some may be obvious, such as seizure-related injuries, side effects of medications and trips to the emergency department. But others are just as important, according to parents:

  • Limitations on family activities – one parent must always “stay back” as caregiver
  • Financial considerations – care is expensive; financial concerns are exacerbated if one parent leaves employment to become a full-time caregiver
  • Effects on siblings, including trauma and psychological issues
  • Time considerations – the caregiver must manage medication schedules, medical appointments, coordination of care, health insurance issues, seizure tracking, plus managing any school-related issues if the child attends school, and any applications for state benefits or disability benefits if those are relevant to the child’s condition
  • Personal impacts on the caregiver:
    • Physical: Injuries from seizures or from lifting/moving the child, sleep deprivation, lack of exercise, difficulty eating a healthy diet due to time constraints
    • Relational: Stress on all relationships, including partner/spouse, other children, extended family, friends
    • Professional: Caregivers often stop working altogether or take part-time work. Any existing career is put on hold.
    • Emotional: Isolation, loneliness, fear, grief, guilt
    • Social: Social life is often limited, and caregiver may feel responsible for the social reactions of others (for example, if their child has a seizure in public or at school)

Within these categories, certain activities or limitations may cause more stress for some people than others. For Jonathan Scheinman — whose 14-year-old daughter Livy has intractable seizures, cerebral palsy and other health issues — communication among doctors’ offices and with health insurers is a major source of stress.

“The communication at doctors’ offices can be poor – both with us and with other offices,” he said. “With insurance companies, you can feel as if you’re running in circles trying to get answers about why something isn’t covered. Those extra stresses, when you’re watching your child have dozens of seizures a day – they bleed into the rest of your life.”

Nina Mago, 30, was diagnosed with epilepsy at age 6. After years of uncontrolled seizures, her epilepsy is now controlled by medication. She and her mother, Anita, and started a nonprofit in Uganda to raise epilepsy awareness. Neither felt they had anyone to talk to about Nina’s condition and its many effects on her and her family.

The stigma and myths — one doctor told her that Nina’s facial birthmark was causing her seizures — left them feeling helpless and alone. Anita still feels anxious about Nina’s future in a country where many people believe that seizures stem from supernatural causes.

“Sometimes I still feel quite hopeless,” said Anita. “If the entire population was ‘epilepsy smart’, life would be much easier for caregivers.”

Stress relief: As individual as a fingerprint

Finding ways to relieve stress is crucial, and different for everyone. Yssa DeWoody enjoys social interactions; her husband prefers alone time, and daughter Audrey turns to art. Jon Scheinman recharges by exercising, and his daughter Hailey listens to music.

For any caregiver or sibling, counseling can provide a supportive place to share feelings without fear of judgment; support groups also can give reassurance that others are going through similar experiences. Many parents become advocates, taking some agency over the feelings of helplessness.

Whatever the outlet for stress, experts emphasize making time for self-care.

Devine’s suggestions:

  • Take the issue seriously. Caregiver stress is real, and ignoring it will not make it go away.
  • Choose your support wisely. Complaint sessions merely for complaining’s sake, which don’t address how to take positive action, actually make people feel worse.
  • Delegate, and learn to say “No”. Let go of the idea that you must do it all, and that it all must be perfect.
  • Be direct and clear about how you are feeling. Don’t assume that people close to you will understand that you’re stressed or need help.
  • Make time for yourself to do things that bring you joy. You may feel as if you don’t have 10 free minutes in the day to yourself. If that’s the case, find a way to get them – through delegating or saying no.
  • According to the Family Caregiver Alliance, many people have preconceived notions that prevent them from taking care of themselves. Some caregivers may view self-care as unnecessary or selfish, for example, or may feel they are only a “worthy” caregiver if they are on duty 24/7. Identifying these barriers is a necessary step to removing them.

Sibling experiences: Lifelong, and underappreciated

The DeWoodys’ older daughters were 7 and 5 years old when Marie was born. Now college students, they were both intimately involved in caring for Marie and continue to participate in her care whenever possible.

“When we talk about anxiety and stress, it’s easy to focus on the parents and forget the siblings,” said Yssa. “Yet they are so profoundly impacted. We need to make sure we’re caring for the siblings’ emotional well being, too.”

Said Taylor DeWoody, 21, “I think the most difficult part about a sibling experience is that there is no ‘life before epilepsy’. Parents have a life before their children, but we don’t remember what it’s like to not have our sister. It’s very formative to grow up and have your main feeling be helplessness.”

Siblings of children who have epilepsy or other complex health needs may keep their personal worries to themselves because they don’t want to bother their parents, according to Emily Rubin, director of sibling support at the Eunice Kennedy Shriver Center in Massachusetts. Rubin spoke as part of a podcast about the siblings of children with mental health issues, but noted that many issues are globally relevant to the siblings of children with any complex health condition.

“The sibling experience closely mirrors the parent’s, so when a parent is feeling overwhelmed or guilty, chances are the sibling is feeling something similar,” Rubin said in the podcast.

Rubin sees patterns in siblings as they grow up. “They tend to be kind and generous; they enter helping professions,” she said. “Because they’ve grown up loving people who have tremendous challenges, they tend to be accommodating in relationships.”

Most are more independent than their peers, because they’re accustomed to less parental attention. “That’s bittersweet, because that sense of independence bodes well for the future, but the way they’ve come to that is by not getting as much attention as they might want,” Rubin said. Read more about sibling experiences in our companion article. (link to DeWoody profile)

How can doctors help?

Physicians don’t have to be therapists to help families deal with anxiety and burnout, Devine said. At any office visit, they can:

  • Make it clear that anxiety, stress, and burnout are normal.
  • Help families learn to recognize when they are stressed or nearing burnout.
  • Emphasize that these feelings should not be ignored or dismissed as not important.
  • Offer an empathetic ear and listen to what parents and siblings have to say.
  • Help families seek care for themselves through support groups, counseling, respite care or other avenues.

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Founded in 1909, the International League Against Epilepsy (ILAE) is a global organization with more than 120 national chapters.

Through promoting research, education and training to improve the diagnosis, treatment and prevention of the disease, ILAE is working toward a world where no person’s life is limited by epilepsy.

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