Epilepsy and Seizure Support at Home

Care by condition

Epilepsy affects people at every age, and what families most often need is not clinical treatment — that comes from the neurologist — but somebody reliable in the house who knows what to do when a seizure happens and does not panic.

For many households the real cost of epilepsy is vigilance. Someone is always listening. Support that lets a parent or a spouse genuinely stop listening for a few hours is worth a great deal.

What actually changes at home

• Somebody is always on watch. Parents of children with epilepsy, and partners of adults with frequent seizures, describe never fully being off duty.
• Medication timing is exact, and missed doses are a common trigger.
• Baths, stairs, cooking and swimming all need thinking about differently.
• Recovery after a seizure can take hours, and needs someone calm, quiet and present rather than alarmed.
• Triggers are individual — sleep loss, illness, stress, missed meals — and the household usually knows them better than anyone.

How we help

• Carers briefed on that person’s seizure pattern, their triggers, and the household’s written seizure plan
• Correct, calm first response: keeping the person safe, timing the seizure, recovery position, and knowing when it becomes an emergency
• Medication reminders on schedule, and administration by a nurse where the plan requires it
• Supervision during the everyday activities the household has decided need someone present
• Accurate recording of what happened, which is often the most useful thing a neurologist receives
• Support for children and young people at home, including after school
• Personal care and daily support for adults whose seizures affect independence
• Respite so a parent or partner can sleep properly, work, or leave the house without listening

Who provides the care

Personal support workers provide this support, briefed on the individual seizure plan before the first visit. Where medication has to be administered rather than prompted — including rescue medication — that is nursing work and we place an RN or RPN. We will be clear with you about which you need.

Common questions

Can your carer give rescue medication?

Administering rescue medication is a regulated act. A personal support worker cannot do it; a nurse can. If your plan includes rescue medication, tell us at the outset and we will place accordingly rather than leaving you to find out at the wrong moment.

Do you support children with epilepsy?

Yes. Support for children at home, including after school and overnight, is one of the more common reasons families contact us about epilepsy.

What will the carer do during a seizure?

Follow your written plan. Keep the person safe and clear of hazards, time it, recovery position afterwards, stay calm and quiet through recovery, and call emergency services at the point your plan specifies. Then write down exactly what happened.

We just need to sleep. Is overnight care available?

Yes. Overnight support is common in epilepsy and is often the single thing that changes a family’s quality of life most.

Will the same carer come each time?

We aim for a small consistent team. Someone who knows what this person’s seizures normally look like will notice when one is different, which is exactly the information the neurologist needs.

Where we provide this care

We provide this support across 146 communities in Ontario, from the Greater Toronto Area to Thunder Bay. If your town is not listed, call us — we will tell you honestly whether we can staff it properly rather than promising and then failing to turn up.

Related

• Stroke recovery
• Parkinson’s
• Multiple sclerosis
• Home care — what it covers
• Respite care for family carers
• 24-hour home care
• All 146 communities we serve