For Caregivers
Caregiving can be rewarding and exhausting at the same time, and you do not have to carry it alone. This page is here to support caregivers with guidance, resources, and connections to help you navigate ALS day by day.
Understanding the Role of a Caregiver
Caregiving can take many forms. When someone is diagnosed with a disease such as ALS, care is rarely provided by one person alone. It is important to recognize that you cannot and should not try to do everything on your own.
Taking time for yourself, asking for help, continuing to work, or setting limits based on your emotional or physical capacity does not mean you are inadequate or uncaring. Sustainable caregiving requires support.
You are considered a caregiver if you provide care or assistance to a family member, friend, or someone you consider “like family” who is living with a chronic illness, physical or mental disability, or age-related health challenges. The person you support may live with you or reside in a care facility.
Many people do not identify with the term caregiver. They may see themselves as a spouse, partner, child, or friend simply doing what needs to be done. However, recognizing yourself as a caregiver is often the first step toward accessing resources and support for both you and your loved one.
You May Be a Caregiver If You Help With
Personal Care
Assisting with activities of daily living such as bathing, dressing, grooming, eating, or mobility.
Household Management
Managing groceries, preparing meals, doing laundry, and maintaining the home.
Medical Coordination
Organizing prescriptions, scheduling appointments, attending medical visits, and communicating with healthcare providers.
Transportation and Mobility
Emotional Support
Financial and Administrative Tasks
Providing companionship, encouragement, advocacy, and psychological support.
Driving to appointments or assisting with movement within the home.
Helping with banking, bill payments, insurance matters, or legal documentation.
Types of Caregivers
Family or Informal Caregiver
Provides care based on a personal relationship and is typically unpaid.
Formal or Professional Caregiver
A trained individual, such as a nurse or personal support worker, who provides care as part of their employment.
Recognizing the demands of caregiving is essential. The emotional and physical responsibilities can be significant, and caregiver burnout is common without appropriate support.
Support For Caregivers
The ALS Society of New Brunswick and Nova Scotia is an important resource for caregivers. We offer guidance, information, and a monthly support group for both the person living with ALS and their caregiver.
Caregiver and Family Resource Manual
The Society provides a comprehensive manual containing practical and educational information, including:
An overview of the healthcare team and their roles
Medical management of ALS
Guidance on discussing an ALS diagnosis with family members and children
Accessing community and palliative care in New Brunswick and Nova Scotia
Planning ahead
Equipment Loan Program details
The Purple Book
The ALS Society also provides access to an online resource designed to help you organize and coordinate care. This tool assists families in documenting daily routines, nutrition, medications, preferences, and care needs.
To request access to this resource, please contact our Client Services Manager, Emily Wells, at:
Community Care Programs
Government-funded programs are available to support care at home.
New Brunswick
Extra-Mural Program
This program provides in home healthcare services and coordinates access to occupational therapy, speech language pathology, dietetics, and other supports.
Nova Scotia
Continuing Care Program
This program assesses care needs and assigns a care coordinator to arrange services in the home.
You may contact your provincial program directly to begin an assessment.
Additional Resources
