Do you see yourself as a parent caregiver?
The parent caregiver supports the child living with a temporary or permanent disability. Do you recognize yourself in this definition? What realities do you experience?
Parents supporting a child or children living with a temporary or permanent disability are among the 1,500,000 caregivers throughout Quebec. They are both parents and caregivers.
When you read these words, some of you are bound to react: “I'm a mother, that's all! - I take care of my daughter, it's normal, I'm not a caregiver, just her father.”
You are right. You are first and foremost mothers and fathers linked to your child by an emotional bond that no expression can successfully describe.
But your role takes you far beyond being a simple parent. You offer ‘ongoing or occasional, short or long-term support (…) to help maintain and improve the quality of [your] child’s life.’ You are a mother and a caregiver. You are a father and your situation is also that of a caregiver. This is your reality. You can turn to the law.
Kim Thúy is a mother and caregiver to her son Valmond, who is autistic
"For Valmond, I have to get into his head to look at life the way he does. To understand what is difficult or hostile for him, what bothers him, what hurts him."
Marc-Antoine Forand is a father and caregiver to his son Noah, who has Down Syndrome
“The specialists gave us assignments, which was very important, because it is at home that the child progresses. It meant building up our own skills at the same time as learning how to be parents. Maybe that’s why we became caregivers.”
Geneviève Pronovost is the mother and caregiver of Xavier, 17, autistic without intellectual disabilities
“It’s only recently that I realized that I’m a caregiver, but I’ve been asking myself a lot of questions. We are raising a child who is a bit different, but are we really “caregivers?” For me, a caregiver was for an elderly person, or a person who remains at home, who needs services (…).”
Marie-Claude Senécal is a mother and caregiver to Joanie, who has cerebral palsy
“Every other week, I give myself two days to think only about myself. Because otherwise, we would only exist together. I would never exist on my own. Even when she is not there, there is a void around me; I search for myself in some way.”
These testimonies show the diversity of parent caregivers’ journeys. What values, difficulties, emotions and responsibilities do you have in common with them? How do you feel about their stories? And you, what would you say about your own journey?
Support and self-help groups
I am a mother, yes, but to say that I am a caregiver…
A short questionnaire to be ticked off helps to recognize caregiver situations in your context. On the same page, there is a glossary; being a caregiver means learning a vocabulary. And why not play the 7 families game from l’Appui pour les proches aidants as a family? In the Jones family, father Carl and mother Maddie are caregivers to their son Manu, who has autism.
In our situation as caregivers, how do we preserve our relationship?
It’s hard to keep it together. You have the right to ask for help as a couple! Think of parents’ associations, respite services, peer support groups, telephone lines or self-help groups. It is important for both of you as a couple to learn to help each other without burnout, and maintaining family balance remains a daily challenge.
Is there an easier way to access the services my child needs?
Identifying and accessing services is a challenge for all caregivers. When access is available, it is a matter of adapting to new services and procedures, professional jargon and staff turnover. Ideally (and not always), parent carers should have a facilitator who co-ordinates services, taking into account the risk of parental burnout, and who recognizes parents as true partners in their child’s care.
How do you keep abreast of what’s being offered to parent caregivers?
As Charles Lafortune says in the video above: “You can’t know what you don’t know!” Parent caregivers need reliable, up-to-date information and practical tools that are easy to integrate into their daily lives. Check out the News section, subscribe to the Caregiver Newsletter, call the Helplines, review the Government web page from time to time to follow the implementation of the Government Action Plan for Caregivers (2021–2026), find out about tax benefits and access practical tips. As Charles says, seek out what you are entitled to!
So caregivers don’t just take care of an elderly parent?
No! This role is much broader. It is essential for caregivers to recognize themselves and to be recognized in the diversity of the realities they experience, their life trajectory and the contexts in which they assume their role. Since 2021, l’Appui pour les proches aidants has been serving (all!) caregivers. Among our valued clients are parent caregivers like you.
Youtube channel of l'Appui pour les proches aidants. Des histoires qui résonnent - Sophie Prégent et Charles Lafortune.
Gouvernement du Québec. Informal and family caregiver.
L'Appui pour les proches aidants. La tête à la bonne place : préparer la rentrée d’un enfant différent
L'Appui pour les proches aidants. When caregiving disrupts the family balance.
L'Appui pour les proches aidants. Mathieu Gratton. Tu vas avoir un enfant toute ta vie.
Proche aidance Québec. Parent, enfant, proche aidant : un rôle supplémentaire s’ajoute.
Need to talk?
Contact our Caregiver Support Helpline for counselling, information et referrals.
Every day from 8 a.m. to 8 p.m.
Free of charge.