Caring for someone with a chronic health condition like epilepsy can be challenging. It can also be rewarding. There may be many things to remember to keep your loved one healthy. Plus, seeing a loved one injured or in the hospital is difficult.
The disease can also interrupt your daily life and put a large physical and emotional burden on your shoulders. Finding ways to cope with the many challenges are a necessary part of adjusting to life with epilepsy.
Because epilepsy is a brain disease, it affects everyone differently. What is common to people with epilepsy and their caregivers is the tremendous disadvantages it may cause to health, social life, and finances. The good news is that studies show strong support results in better outcomes for adults with epilepsy.1,2
Preventing caregiver burnout
It can be hard to ask for help with caregiving. This is especially true if you feel like you should be able to handle it yourself. However, you need to recharge in order to take care of your loved one. You may have to learn to say no in order to preserve your energy for what is most necessary.3-5
A home healthcare service can help with daily tasks like bathing, dressing, physical and occupational therapy, or medicine management. Family and friends may be able to watch over your loved one while you run errands or get some exercise. If the stress of caregiving interferes with daily life or feels overwhelming, a counselor, therapist, or clergy member may help you manage your stress.
Giving yourself breaks prevents burnout and preserves your health, so you can keep on caregiving.
Supporting a child with epilepsy
The things you need to do for a child with epilepsy will change as the child grows. Your child will face all the usual challenges and risks of any child as they grow into a tween or teen, plus some extras. Keeping the lines of communication open can be one of the best ways to help your child stay safe and healthy.3-5
Having a child with epilepsy also puts a strain on the family’s budget. Several federal programs may help ease the financial burden of caring for a child with epilepsy. Your child’s epilepsy care team may offer valuable support.
Supporting an adult with epilepsy
Caring for an adult with epilepsy can be very different from caring for a child or teenager with the condition. Your adult loved one may once have been completely independent and be reluctant to accept help. Or, brain damage from repeated seizures may leave your person unaware they need as much as they do.3-5
Overlapping roles are another challenge for caregivers. Your original relationship may have been one of parent, spouse, friend, sibling, or offspring. The change in relationship can be mentally and emotionally demanding, on top of the physical demands of caregiving.
Coping with grief and loss
Caregiving for someone with epilepsy can be an emotional rollercoaster. You may mourn the loss of your loved one’s independence, personality changes, or mental decline. Witnessing their changing health may trigger many emotions that challenge your mental and emotional health.
It is normal to feel shocked or sad when a loved one is diagnosed with epilepsy. Anxiety and grief about the future are also common. Diagnosis may be delayed from when symptoms first appear. This can add to feelings of shock, sadness, and frustration.6,7
There is no wrong way to feel or cope with your emotions. The most important thing is to find support and take care of your mental health.
Managing your grief can be overwhelming. You may be mourning the way things used to be while also learning to manage your person’s healthcare.
Coping with caregiving
If your child or loved one has epilepsy, try not to despair. There are many support services you can access to help you manage your loved one’s care. Members of your epilepsy care team can help you find those resources and give you extra support. You can also educate yourself about the disease and about current treatments and promising research.
Remember, asking for help or admitting you cannot do it alone is nothing to be ashamed of.