Keeping it All Together: Life as a Caregiver

Caregivers of people with epilepsy are the backbone of a successful treatment plan. They are often the unsung heroes at the center of a loved one’s life who is coping with a chronic health disorder. They are in charge of coordinating doctor’s appointments, administering medications, staying calm and educating others about what to do during a seizure, along with a thousand other details. The caregiver is often the connection to the outside world, someone dedicated to making the person with epilepsy’s life livable, manageable and, in some cases, even possible.

Caregivers come in all shapes and sizes. They are parents, siblings, spouses, friends—there is even a fourlegged variety.

Sometimes other family members or friends and neighbors are able to help, but many caregivers do most or all of the caregiving for a loved one alone. The stress associated with the caregiving role can contribute to depression, so it is essential to take care of yourself and—more importantly—remember, you are not alone. There are caregivers all across the country, so reach out to epilepsy support groups—either online or in your community—to connect with other caregivers.

Listening to other people’s stories and finding out strategies and coping skills from people going through similar challenges can alleviate the burden tremendously and remind you that you are not the only one coping with the enormous responsibility of caring for a person with a chronic disorder.

‘This is what family does.’

Erin Stone and her sister, Rebecca Poston, are identical twins who have shared almost every major life experience for 27 years, except one very important one: Erin has epilepsy and Rebecca doesn’t. Raised in a small town in South Carolina, Erin made sure everyone in her community of about 1,000 knew about epilepsy, beginning a longtime commitment to epilepsy advocacy. She is now the outreach coordinator for the Epilepsy Foundation of South Carolina in Columbia.

Erin’s caregiver, from the time she was diagnosed at 10, has been her sister Rebecca. They went to elementary school, high school and college together. Growing up in a small town, Rebecca says, “I was pretty much the first line of defense on her seizures because we were always together.” She says her sister’s openness about her condition helped them educate their community about epilepsy. For online discussions with other caregivers across the country, visit epilepsyfoundation.org/ecommunities to connect with other caregivers. Or, contact your local Epilepsy Foundation to find a local support group near you.

Both sisters speak glowingly of one another; however each acknowledges that the caregiver dynamic can put strain on even the best and closest of relationships. They pointed to adolescence as particularly difficult because just as Erin was ready to establish her independence, she still needed to depend on her sister. As hard as it was, Rebecca says, “It was easier for her to make the transition because she had me there with her in a way that wasn’t overly protective, like a parent might be.” Rebecca says she never felt resentful about being her sister’s caregiver, but she did need to strike a balance so Erin could live her life more fully without “worrying myself to death.”

As twins, the question is bound to hover: How does Rebecca feel about being the twin who doesn’t have epilepsy? She admits to feeling some guilt but she says her sister’s activism inspired her. “Erin has always tried to turn something that was potentially very negative into something so positive.” Erin, in turn, says she didn’t feel resentful her sister didn’t have epilepsy because “Rebecca was so supportive of me.”

As a caregiver, Erin says one of Rebecca’s best traits is her ability to stay calm under pressure, especially when Erin is having a seizure. Her equanimity was put to the test when the girls were freshmen in college. They were both working for the same restaurant during the summer when Erin had a seizure and fell face first onto a tile floor and ended up with 250 stitches. Through it all she says her sister “kept it together.” Despite the catastrophic injury and a fog of medications, Erin says her greatest fear was, “We weren’t going to look the same anymore.” After plastic surgery, she says the scars are almost unnoticeable and they are back to being the twins they always were.

As adults, the sisters experienced another challenge. After Erin gave birth to a baby Rebecca describes as the “prettiest baby in the history of time,” Erin had a breakthrough seizure and couldn’t drive. She was working for the Epilepsy Foundation and her baby, Cameron, was in daycare. Rebecca says, “The cool thing about our family is, we just rallied and we set up a carpool and took turns taking Erin back and forth to work.” Older sister Leigh Ann, who also lives in Columbia, helped with the effort. The sisters juggled trips across town to take the baby to daycare and ferry Erin to daycare during her lunch hour so she could nurse the baby, then coordinated getting her back home in the evenings.

Erin felt “blessed” to have her sisters’ support, but she also worried about being a burden, a common fear among people receiving care. Her sisters said, “You are not a burden. Don’t even let that cross your mind. We love you and this is not up for question. This is what family does.”

As a caregiver, Rebecca stresses the importance of “having a very open, honest dialogue with the person you’re giving care to.” She said when she constantly reminded Erin to take her medication it became a bone of contention. She says it’s essential to come up with strategies, such as a weekly pill pack, to make sure the person is being compliant without stepping on their toes.

The sisters are clearly devoted to one another. Erin says of her sister, who has been by her side their entire lives, “I’m proud to have her as a friend and, even more so, I feel very lucky to have her as my sister.” She adds, “And she’s super cute. People say she’s pretty and I say, ‘Yeah, but she looks just like me!’”

‘Find your support where you can.’

Ginger Gaitor and her husband, Bill, of Albany, N.Y., were 7 months into what was a second marriage for both when Bill suffered a traumatic brain injury (TBI) in 2006 that led to a severe seizure disorder. Bill has complex partial seizures and has gone into status epilepticus* several times, requiring frequent trips to the ER. It was difficult to pinpoint his diagnosis because when he had a seizure, it presented with stroke-like symptoms. He needs 24-hour supervision, which Ginger largely manages on her own.

Initially she thought, “I don’t know if I can keep doing this because I’m not a nurse.” Then she worked with their neurologist and started calling him first before making the trip to the ER. She says, “I manage him pretty well at home now. I know what medications help him.”

Ginger quit her job to be a full-time caregiver to Bill, who is on Medicaid. She applied for assistance from the TBI Waiver Program through the New York State Department of Health. The program is designed to help people with TBI achieve maximum independence, without being unnecessarily confined to nursing homes. The program provides a service provider through the Epilepsy Foundation of Northeastern New York. Bill attends a day program working on peer support and cognitive work. Ginger used to help with those activities but, she says, “Bill felt that he wanted to have me as a wife rather than as a nurse.”

Bill got a vagus nerve stimulator in March and they are hopeful it will help control his seizures, affording each of them more independence. He has improved in his dayto- day abilities, but the one-time CPA who used to do the New York Timescrossword puzzle daily can no longer read because of a vision impairment caused by his injury.

Ginger believes his innate intelligence helps him compensate for the cognitive abilities he has lost. Best of all, she says, he is “very cheerful and motivated.”

Every caregiver knows that the grasp on day-to-day equilibrium is tenuous at best, especially when a health difficulty of their own arises. Ginger began getting migraines again and then she needed to have gallbladder surgery. She says, “That was the biggest crisis I think we’ve had.”

They made it work.

Ginger got emergency staffing, also through the TBI Waiver program, which assisted them during Ginger’s surgery and afterward while she recovered. Family members were not able to provide a lot of assistance, but her counselor said, “Find your support where you can.”

Strategies for Survival

Ginger says she and Bill have made a conscious effort to enjoy life. “We’ll eat dinner on our way home, an early dinner, and we enjoy that time just together. I’m kind of supervising him, but we’re doing something fun together.” Sometimes she has doubts about her abilities as a caregiver and thinks, “I can’t do this.” But the neurologist reassures her and says, “But you are doing it and you are handling it well.”

She stays positive through daily exercise, counseling, book sharing with friends and her special times with Bill. She also learned that as Bill’s primary caregiver and advocate, she needed to have her records in order. She uses a large daily calendar to record Bill’s seizures and symptoms so she can provide an accurate description to health care providers. She also maintains a Word file on her computer listing all of Bill’s medications, as well as her own, and she records the seizure symptoms on that document. She says, “The nurses all love it. They say, ‘We wish everyone had one of these!’”

Despite all the difficulties of caring for a spouse with epilepsy and other disabilities, Ginger says, “I love Bill; he’s a good man.” She adds, “He’s happy being married to me.”

Caregivers are usually loving, but what happens if they’re furry, too, and like to lick your face a lot?

Spencer Wyatt, 8, of Dacula, Ga., was diagnosed with epilepsy when he was 3 years old. He’s currently in second grade and got his seizure response dog, Lucia, through the Canine Assistants program this summer. He calls her his best friend. More than that, she is an added caregiver to the family. His mother, Amy, says, “It gives us an extra set of eyes and ears—watching out for him, listening to see if he’s going to have a seizure and then getting help if he is.”

Lucia is especially helpful because Spencer has nocturnal seizures and before they got her, Amy had to get up every 30 minutes during the night to check on him. Then they relied on video cameras. Now, they feel reassured to know Lucia is in the room with Spencer at night and can alert them if he’s having a seizure. She gives Spencer an added measure of independence, too, because now if he wants to go outside to play, he doesn’t have to be shadowed by his mother constantly. He has his dog with him—who also happens to be trained in recognizing seizures.

Seizure response dogs are trained to remain next to a person with epilepsy during the course of a seizure and summon help. Certain dogs may even be able to predict and react in advance of an oncoming seizure. So, while they are not a substitute for actual human supervision, they are definitely an added, if slightly unconventional, member of many family caregiver teams.

At first, the family had to get used to Lucia’s way of signaling them. Amy says, “She’d hop up and begin to whine. The only problem with that was, we thought she had to go to the bathroom.” It turns out she was signaling that Spencer might be about to have a seizure. Amy says several times Lucia has come over to lick her hand and about 15 minutes later, Spencer has had a seizure.

Spencer is quite vocal about his epilepsy and enjoys educating people about his condition. Lucia is the perfect co-ambassador for him because she attracts a lot of attention, which gives Spencer plenty of opportunities to talk to people and explain his condition.

Amy says the added attention helps get the word out about epilepsy. “It’s changing people’s opinions and ideas and helping to erase the stigma that’s attached to epilepsy, to see this kid that’s so full of life and personality. For him to say, ‘I have epilepsy,’ I think shatters a lot of preconceived notions about what that is.” Amy says they have tried to instill in Spencer the knowledge that while he has a condition some people might view negatively, it’s his job to take his epilepsy and turn it into a positive so he can help other people. He seems to understand. Lucia’s name means “light,” which Spencer likes. He says, “Mom, that’s so cool because when we introduce her to people, it’s like telling people about light—that there can be light in their lives.”

* A single, prolonged seizure or series of seizures that lasts 5 minutes or more without the subject regaining full consciousness.