Feature article: Support for parents of children who have epilepsy: Resources and ideas
If you ask a parent of a child who has epilepsy, they will tell you that there is nothing as scary as seeing their child have that first seizure because it seemed to go on forever and it was terrifying and confusing.
And then, once the diagnosis of epilepsy is established, there are other challenges that the parents and the child face. This article focuses on the parents' wellbeing which is very often overlooked when caring for a child with a long-standing illness.
Typically, parents are expected to ensure their child's safety, welfare, and happiness from birth until the child reaches adulthood and then "flies off" to live independently. And usually this goes pretty smoothly with a few bumps in the road (e.g., accidents, brief illnesses, and so forth). But when a child develops a chronic illness, the stress that the parents experience can be severe and go on for years. There may be sleepless nights, numerous doctor visits, hospital stays, problematic school encounters, unpleasant medication side effects, and subsequent parental generalized anxiety and distress, and much more. Parents may feel that they should shoulder all this without complaint, that it is part of their responsibility as a mother or father and that if they are worn down or feeling overwhelmed, that they should just soldier on in silence. They may feel that their child is going through so much more and therefore, that whatever they are experiencing does not merit being mentioned. But parents are human and what a mom or dad of a child with epilepsy goes through day to day, can be very tough. In many ways, these parents are warriors and heroes (just like the kids are) and they can benefit from understanding and support from others.
Emotional Stress:
When a child is diagnosed with a chronic illness, parents may react by overprotecting the child; this is because they are doing what parents do--they are trying to keep the child safe in a situation that is perceived as dangerous--and it can be hard to find a healthy balance. The parents may also find themselves feeling all kinds of different emotions including sadness, guilt, anger, anxiety and fear. Stress and exhaustion may cause conflict between the parents. The couple may find themselves disagreeing on how to respond to the child's epilepsy, how to manage and communicate with others (relatives, friends, school), how to communicate with the child, etc. And undoubtedly, if the parent is a single mom or dad, the pressure and responsibility can be at least doubled and especially draining with little reprieve. Also, let's not forget, epilepsy and seizures are in essence accompanied by a sense of loss of control. Psychologists have determined that feeling that one has little or no control over something is especially stressful. These parents may find that they are having trouble controlling what is happening to their child (e.g., seizures, medical procedures, life changes) and that can be very unsettling and hard to swallow.
Below you will find a number of suggestions and recommendations for those who are parenting and caring for a child with epilepsy: some involve self-care, others highlight social support and also how to best manage real-life and practical concerns.
Although it may seem that there is no leftover time, parents are urged to set aside some time to caring for themselves and managing their own stress because, in the long run, this will allow them to stay healthy. And also, by being healthy, they can be better prepared to care for their child and the rest of the family. Actor and epilepsy advocate, Greg Grunberg, who is also the father of a son who has epilepsy, recently launched a project called "The Care Giver." Because of his own experience is why he chose to pursue this recent project and to shine a light on these silent helpers. In it, he visits and spends time with caregivers who have been very consumed with caring for their family member who has epilepsy. For a few hours, Greg and his guest get to do something the caregiver loves and which they have had a chance to engage in for a very long time (e.g., paint in a studio or drive a very cool car) and they get to chat with Greg Grunberg. Watch the trailer for this wonderful new series: https://www.youtube.com/watch?v=kzmmbyR2EnM
It's important to have a support network but not everyone has a big family or group of friends standing by to step in. Or even if they do, they may not always be the most helpful or prepared to deal with a chronically ill child. Parents are encouraged to speak openly to their child's healthcare team if they are feeling overwhelmed and need support. The team might include the child's medical doctor, nurses, nutritionist, and other health staff. Staff can connect parents with in-house personnel (e.g., case workers, social workers, support group leaders), local agencies (e.g., Epilepsy Services of New Jersey, Epilepsy Foundation of Northeastern NY, etc.), and national foundations (e.g., Epilepsy Alliance of America).
Speaking to a professional at an epilepsy program or from an epilepsy foundation can be especially helpful because that person understands what the family is going through and is probably one of the best prepared to connect them with the social and financial resources in the area. In this way, the parents can not only meet others in the community but also access important resources.
Attending a parental support group can allow parents to be with others who understand. The other parents who are there don't need explanations because they know what it is like to be a mom or dad of a child who has seizures. They have dealt with epilepsy doctor and hospital visits, with sticky and smelly EEG leads, with medication side effects, they have kept seizure logs, and so much more. Often parents find the emotional support there that even their best friends and relatives can't always provide. More importantly, parents that attend can also learn from the other parents who may have already gone through challenges successfully and who can teach others (e.g., already dealt with a teen with epilepsy, found a great doctor, tried out a seizure detection device, etc.).
Attending an epilepsy conference can also be a step in the right direction. Remember the old adage: "knowledge is power?" For some people, it really is true. The more they know about their child's illness, how it is diagnosed, treated, how to keep the child safe, what resources are out there, the stronger and better prepared they are to confront it. Parents should check with their epilepsy program and local epilepsy programs about conferences and webinars.
Some parents find that becoming active as educators or fundraisers helps them master what may initially have felt like helplessness and which instead, they turn into a fighting stance against epilepsy. Some of the greatest initiatives have been created by parents of children with epilepsy (e.g., Paint your pumpkin purple, CURE, etc.).
Concerns about safety:
Many parents report that since their child began to have seizures, their sleep has never been the same. Some parents use a baby monitor and develop very light sleep, waking to the very slightest sounds, others start sleeping separately, taking turns with one parent sleeping with the child on different nights. Obviously, this can have a negative impact on the parents' health and on their relationship but the concern for safety outweighs the rest. Fortunately, there are several devices that have been produced over the last few years, (not surprisingly, some were invented by parents!) and they are meant to give some peace of mind and a bit better sleep to all. These include a special pillow, mattress pads, and several types of smart watches that detect motion. Parents who have safety concerns are encouraged to learn as much as possible about these devices and tools. They could provide some peace of mind and added safety for their child. For more information, click on this link: https://www.epilepsygroup.com/notes6-35-261/feature-article-seizures-can-be-scary-how-you-can-incre.htm
Also, the Epilepsy Foundation is offering online courses: Seizure recognition and first aid with a certification for those who complete the 75--90-minute course. Parents and adults involved in caring for the child should look into this course and certification. https://learn.epilepsy.com/courses/SFA-Cert-ILT-v2
Parents can also lower their concerns at home by learning about ways to seizure-proof their home. It is especially important to learn about safety in the bathroom and kitchen. To learn more about this, click here: https://www.epilepsygroup.com/newsletter_notes.php?idseccion=6&idsubseccion=35&idnota=232
Service dogs are another option that many families are turning to for increased safety and protection. Dogs can alert to seizures, calling the family and working on keeping the patient safe and protected from serious injuries. There are several Service and Assistance dog programs in the US that parents can explore (e.g., 4pawsforability.org). For a more complete list, click here: https://chelseahutchisonfoundation.org/helpful-links/
Financial Stress:
Parents sometimes report feeling strained due to the cost of the anti-epileptic medications which is understandable because the cost of some medications is outrageous! In the last few years, prices for anti-epileptic medications have experienced a significant increase. In addition, sometimes, a parent needs to leave their job or to cut down on her/his hours because the child requires more dedicated care, and this affects the family's finances. It might offer some relief to know that there are some financial resources that can be accessed to seek assistance with some of these costs. For more detailed information, read this article https://www.healthline.com/health/cost-epilepsy-medications#price-factors
There are also some resources that help cover the cost of travel if the child and family have to travel a long distance for epilepsy testing or treatment. Click here to learn more: (https://epilepsygroup.com/info17-55/living-with-epilepsy.htm).
Communicating with the child:
Parents may be having a hard time understanding all the medical jargon being thrown their way: names and dosages of medications, names of tests, seizure classifications, etc. So, imagine what this is like for the child. Parents need to remember that the child needs age-appropriate explanations of what is going on, what is going to be done to her/him, of how to explain things to friends, of how to manage things in school, etc. Just like the parent is experiencing a gamut of feelings, the child is also likely experiencing a series of emotions and may not necessarily have the words for them. In addition, medication side effects and epilepsy can also impact the child's behavior. Parents can feel overwhelmed if in addition to everything else they are juggling they are now trying to manage the child's emotional reactions. This is when it might make sense to have the child meet with a child psychologist for a few sessions or longer. The psychologist may help the child understand and describe her/his feelings and reactions through verbalization, play and drawings (depending on her/his age). Also, the psychologist can help the child and the parent communicate about these emotional reactions and to problem-solve on a variety of topics that come up in school and socially.
Parents taking time for themselves:
When a child is sick, a parent can feel guilty for taking time for her/himself. However, by recharging parents can stay healthy and come back with more energy to continue to care for the child better. It is important to have a healthy diet, to exercise, to keep up hobbies and interests, and socialization with adults. It is important to make sure that whoever is caring for the child while the parents are away know what to do in case of a seizure or other emergency so mom and dad can really disconnect while they are away. Respite care can be accessed through some local epilepsy and family services agencies. Parents may also need to have their own psychotherapist where they can safely and confidentially express everything that they are going through. Many therapists now see patients online so these sessions can occur while the parent is still home and only really requiring 45-50 minutes of time.
In sum, kids often see their parents as superheroes and parents often wish they had the power and strength of superheroes. However, when a child is chronically ill, parents will likely need to recalibrate. It is recommended that parents remember that they are in a marathon, not a sprint. If they are going to be in it for the long haul, rest, recharging, and caring for themselves are not luxuries, but in fact, necessities.
Final thought: It's important that parents speak up to their child's healthcare team at the epilepsy program or contact epilepsy organizations if they are feeling overwhelmed. They may be surprised to learn about many resources that are available.
Resources:
https://www.psychologytoday.com/us (find a therapist)
Psychologist Locator:https://locator.apa.org/?_ga=2.90314394.1295471558.1654545814-2106256782.1654545813
Epilepsy Alliance of America: https://www.epilepsyallianceamerica.org/
