The Daily Living section equips caregivers with practical, everyday support strategies. It outlines personal care tasks – such as bathing, toileting, and similar routine activities – and explains how to determine if home health services might best support your loved one’s needs. Additionally, the section offers guidance to help families assess and plan for evolving residential needs, including exploring alternative living arrangements as their loved one with a rare epilepsy ages.
This information is designed to help families proactively manage daily routines, promote safety, and ensure a sustainable care environment over time.
Having a checklist prepared in advance of your loved one’s appointments can help ensure you don’t forget important topics and can help to minimize additional follow-ups.
This fillable PDF includes an appointment checklist and at-a-glance annual appointment schedule.
Bathing your child can be a fun ritual filled with bathtubs full of bubbles, toys, and laughter, but it can also be a challenge. Some families may find it difficult to help their loved one with rare epilepsy perform basic tasks such as brushing teeth or washing hands. Some of our loved ones may not have the motor function to perform these tasks. Each family determines their own plan to care for their loved one. There is no right or wrong—there is only what works for your family.
Please use the fillable PDF to document your loved one’s daily bathing and personal hygiene plan. Things always seem to be changing with our loved ones; therefore, feel free to come back to this form and update anytime you feel the need.
We all know how important it is to be able to communicate. Some of our loved ones are able to verbally express their needs and wants; however, many of our loved ones struggle to communicate. As the caregiver, you probably know exactly what your child needs—when they are happy, when they are hurting, when they are frustrated, and when they are excited. Many families have their own language and communication methods to engage with their loved one with rare epilepsy. Sometimes our loved ones are able to speak in complete sentences, some a few words, others may express how they feel using facial expressions, sounds, or physical movements. Sometimes our loved ones use an electronic device to communicate. Every family has implemented what works best for them.
When a new person steps into the picture, who may not be familiar with your daily living routines, they may need assistance learning how your loved one and family communicate with each other. Please use the fillable PDF to document with as much detail as possible, how communication with your loved one works in your family, so that others will be able to understand and communicate in a way that your loved one with rare epilepsy will understand.
Things always seem to be changing with our loved ones; therefore, feel free to come back to this form and update anytime you feel the need.
When you or your loved one with rare epilepsy is in crisis, everyone in the family is in crisis and it’s very difficult to know what to do. Having a plan in place that ensures continuity of care can help provide comfort and guidance for all in your support circle during a very difficult situation. There are different types of crises that can happen at any time. You may have situations where your loved one with rare epilepsy experiences a crisis that requires immediate action. Are you, and those in your support circle, prepared for your loved one’s inevitable medical emergencies?
We often discuss the care of your child with rare epilepsy, but we also need to talk about what would happen if you, the primary caregiver, experience a crisis that prevents you from managing your normal daily tasks. What if you get sick or become injured and are temporarily unable to care for your loved one? What if that temporary situation became permanent? Who would care for your child? Would those in your support circle know how to immediately step in to provide the daily care your loved one with rare epilepsy requires? Having plans in place that address what happens when your loved one is in crisis and provides guidance should something happen to you, the primary caregiver, will be critical to ensure continuity of care. While these are tough scenarios to consider, thinking about them when you are not in crisis can help make sure you are preparing for the most difficult situations when you are at your best, instead of when your family is under duress.
Download crisis planning guide
What is Hospice?
Hospice care is medical care for individuals who have experienced a sudden decline in their health or have received a terminal diagnosis. The life expectancy is six months or less and the intention is to focus on aggressive care management to optimize comfort and quality of life for the time that remains. The hospice care team includes medical professionals trained to address the needs of the individual at this stage. This can mean anything from pain management to physical, psychosocial, and spiritual needs, as these become the focus of care with less emphasis on the disease.
Hospice Services
- Organization Description Hospice Foundation of America: Educates the public and health care professionals about death, dying, and grief
- National Hospice and Palliative Care Organization (NHPCO): Works to expand access to a proven person centered model for healthcare; one that provides patients and their loved ones with comfort, peace, and dignity during life’s most intimate and vulnerable experiences
- National Association for Home Care & Hospice: Promotes, protects, and advances the highest quality health care at home.
Use the fillable PDF to document Day Programs your loved one with rare epilepsy attends. Additional pages can be added by going to the Attachments section of the C.A.R.E. Binder.
Dressing your child can be challenging. Does your loved one with rare epilepsy like to pick out their own clothes? Some of our loved ones do not like getting dressed at all—some even prefer to be in various stages of undress. Whatever your situation at home, completing the information below can help those in your support circle provide the best experience possible when they are stepping into your shoes to assist with the care of your loved one with rare epilepsy.
TIP: Some of our loved ones have sensitivities to certain fabrics that can create difficulties with the dressing experience and can also cause distress for your loved one throughout the day. If your child is unable to communicate their distress, this may cause frustrations for them. If your child has any sensitivities, please be sure to note it in the fillable PDF.
Many of our loved ones with rare epilepsy have very specific nutrition needs. Some may have a G-tube, need a thickening agent, and/or be on a ketogenic diet. Certain foods may interact with their medications, cause GI or other issues, or simply aren’t tolerable for various reasons. Feeding our loved ones with rare epilepsy may be very challenging at times, and ensuring they receive adequate nutrition can sometimes be difficult. It is important to provide as much detail as possible so that others providing care assistance for your loved one can maintain the feeding and nutrition plan you’ve thoughtfully developed for your child. If your loved one with rare epilepsy has a nutritionist, dietician, and/or is on a medical diet (such as the ketogenic diet), please provide the healthcare professional’s name and contact information in the fillable PDF.
TIP: If your child is G-tube fed or on a ketogenic diet, be certain to print out the information/documentation necessary to follow your specific instructions and include with this C.A.R.E. Binder.
TIP: It’s important to make note when your loved one experiences changes in appetite. It could be that your child is just being picky about their food—or it could be an indication that something is wrong, such as GI distress or dental issues. Capturing details about your loved one’s likes/dislikes and other mealtime routines can help others caring for your child better able to recognize changes that may need to be addressed.
Every rare epilepsy family has their own unique situation; therefore, each family can have their own unique living arrangements. There is no right or wrong—your plan is the best plan for your family. The goal of this fillable PDF is to capture the details of your loved one’s living arrangements so that anyone who may assist you with care has all the information they need to provide the best care possible for your child with rare epilepsy.
TIP: Please provide additional detail about your loved one’s residence(s) that may help others care for your child. For example, if your loved one has more than one residence, you may want to document what days/times of the week they live in their primary residence and how transportation is provided when traveling to secondary residence.
We will all likely need some sort of assistance with mobility over the course of our lives. Most of our loved ones with rare epilepsy will also require assistance during certain situations and/or assistance at some point in their lives as gait issues develop, and some may require 100% mobility assistance. Families adapt their homes and lives to accommodate their loved one with rare epilepsy to ensure they are able to move about as freely and safely as possible (please refer to the Safety section of the C.A.R.E. Binder for more information).
TIP: Some of our loved ones have the ability to move around independently; however, may still use a wheelchair during certain situations such as going out in public. This may be to maintain safety for our loved one or to control their behavior. Make sure you include details in the fillable PDF.
Being a caregiver can be equally rewarding and overwhelming at the same time – it is completely normal to feel this way. Many caregivers start this journey as parents, yet others might be relatives (grandparents, siblings, etc.) or close family friends who are all essential parts of the “village” that cares for someone with a rare epilepsy. Western society often considers the village as solely for the loved one who needs assistance; however, the reality is the village is the support system for the primary caregiver in addition to the loved one with a rare epilepsy.
Caring for a loved one with a rare epilepsy means having to work especially hard at finding balance. It is all too common for caregivers in our community to find themselves without a sense of balance in their lives. Too often, caregivers can find themselves exhausting their minds and bodies in an effort to provide the absolute best care for their loved ones while neglecting their own basic needs.
View the Caregiver Support & Resources Page
Finding Your Caregiver Zone
This chart can help you identify where you need help. You’ll find yourself moving between zones, which is completely normal. Try to track this monthly and share with close friends and family so they, too, can help you to recognize signs of burnout.
If you feel an immediate threat to yourself or others, please call 911 for immediate assistance.
If you are having suicidal thoughts, please call the National Suicide Prevention Lifeline at 1-800-273-8255.
Every caregiver knows the most important thing you can do is to ensure that your loved one with rare epilepsy is safe…and feels safe. Depending on the temperament of your loved one, side effects of medication and other variables, behavior may be a challenge. Especially when communication is challenging, our loved ones may show aggression towards us that can be very difficult to handle. When behavioral outbursts happen, it can be frustrating, and sometimes even frightening, but even during these difficult situations, it’s still our priority to keep our loved one with rare epilepsy safe, as well as ourselves and other family members. To maintain safety, there are several important areas to address and document for those who may care for your loved one with rare epilepsy.
- How your home is set up to keep your loved one safe
- How to keep your loved one safe outside the home
- How to keep your family safe when aggressive behaviors are displayed
- How to keep your loved one safe from other people
And remember, if you or your loved ones ever feel unsafe, contact emergency services or call 911 for assistance.
Most families with loved ones with rare epilepsy struggle to get the sleep needed each night. This can be very stressful for everyone in the family. Not getting proper sleep makes it difficult to function. You must get up every morning (or several times a night) and keep pushing forward. Doing what we can to standardize bedtime routines can be helpful to obtain the best rest possible. We’ve said it multiple times throughout the C.A.R.E. Binder because it’s true—every family will have their own routines that work best for their family. There is no right or wrong, only what works best for you. The purpose of this fillable PDF is to document what your family routine entails so that anyone else providing care for your loved one can do their best to care for your loved one as you would.
Your loved one with rare epilepsy is a very special person with many positive qualities and gifts. Use the fillable PDF to tell others what makes your loved one laugh and smile, what activities bring them joy, what is challenging for them, and of course, information about their medical challenges. Providing this important information is needed to help others to provide the very best care with dignity, respect, and appreciation for all your loved one has to offer.
We all want to provide the most enriching life we can for our loved ones with rare epilepsy, and we do that through different activities such as Day Programs. While we acknowledge that the majority of our loved ones will not qualify for supported employment, we wanted to include information for those caregivers with loved ones who may qualify.
Toileting can be a tricky and challenging endeavor for many of our loved ones with rare epilepsy. Some of our loved ones are able to toilet independently, some use the toilet with assistance, and some will use diapers throughout childhood and into adulthood. Please use the fillable PDF to document the level of independence your child has when it comes to toileting. Things always seem to be changing with our loved ones; therefore, feel free to come back to this form and update anytime you feel the need.
Click Here to Download the Full C.A.R.E. Binder
This Guide can help you get organized, but should not be considered as a substitution for legal, financial, or medical advice.
VIPrareCARE.com and the C.A.R.E. Binder were proudly developed in collaboration with the Dravet Syndrome Foundation, Lennox-Gastaut Syndrome (LGS) Foundation, TSC Alliance and other organizations who support families like yours and was made possible through UCB funding and partnership.
Updated 08/27/25 (AM)