Article written by Karyne Vaillant, Call & Intervention Coordinator at Brio PAE | Helping relationship therapist
Caregivers: who are they?
Indispensable, yet often invisible allies
What do you think a caregiver is? A caregiver is anyone who offers significant and regular support to a member of their family or close circle who is losing their autonomy or is suffering from illness, disability or aging.
This role can be temporary or permanent, and doesn’t just concern the elderly. It can involve supporting a sick relative, a spouse losing his or her independence, a disabled child, or even a neighbor. Caregivers are essential to homecare.
” Nearly one in four Canadians is a caregiver. Behind this number, there are faces: colleagues, patients, friends or members of our own team.”
The unchosen role
We rarely choose to become caregivers. Quite often, the role “falls into our lap”, for want of other options or help from the healthcare network.
A sense ofobligation can set in: “Because I’m the only one available”, “Because I can’t say no”. Whatever the reason, this role profoundly changes the personal, family and professional life of the person who becomes a caregiver.
As a caregiver, you may experience what is called “white grief”. The Alzheimer Society of Canada describes white grief as “the type of grief experienced when a person with a cognitive impairment no longer has the same mental or emotional presence as in the past, although they are still physically present”. This may be the case for you. The person you care for is present in the flesh, but is gradually losing his or her mental capacity.
Faced with this, you feel emotions, grief and guilt: you’re in white mourning .
The growing weight of guilt
The feeling of guilt is often felt by caregivers. You think you’re not doing enough, you don’t dare take time for yourself, or you have trouble setting limits. It’s a very common emotion, but it doesn’t mean you’re not a good caregiver. On the contrary, it shows how much you take this role to heart.
Reminding yourself that you’re doing the best you can, seeking support and giving yourself time to rest can help lighten the load. Eliminating guilt can be a daunting and perhaps even impossible task, but learning to live with and mitigate this emotion is entirely realistic.
To alleviate this feeling, it is useful to remember that:
- No one can do everything, and your limits are human.
- Taking care of yourself doesn’t mean abandoning the other person, it means giving yourself the strength to carry on.
- Seeking support (family, friends, organizations, caregiver groups) is not a sign of weakness, but a way of preserving your balance.
Acknowledging guilt is the first step towards taming it. You’re not alone in feeling it, and it’s possible to transform it into kindness towards yourself. It’s important to recharge your battery, not only to continue helping and supporting the person you’re caring for, but also to think about and take care of yourself.
” Nearly 60% of caregivers are employed. Many juggle busy schedules, constant stress… and a deep sense of guilt.”
There may be an imbalance between your values and your real abilities, and this creates a key combination for guilt, frustration and exhaustion. Recognizing guilt, understanding where it comes from and learning how to free yourself from it is essential to preserving your well-being and maintaining a healthy relationship with the person you’re helping. You may experience contradictory emotions. These can include anger, ambivalence (loving the person, but finding the situation burdensome), helplessness, fear of the future, and so on. These emotions are human and do not make you a “bad” caregiver.
How to find your balance?
By learning to respect yourself in your role as caregiver. It's possible, but it requires support and an open mind.
Here are a few tips to help you get there:
- Recognizing your limits
- Saying no
- Delegating certain tasks
- Talking about your experience
- Giving yourself a break
- Participating in workshops or support groups
“Being a caregiver doesn’t mean forgetting yourself. It’s about learning to help without losing yourself.”
The financial challenges of being a caregiver
The role of caregiver can have financial implications. There can be a loss of income, reduced hours, unpaid leave, direct costs (travel, medication, home adaptations), and increased long-term insecurity, especially for women (as most caregivers are women).
“In this case, Employment Insurance offers caregiver benefits. As a caregiver, you don’t have to live with the person you’re providing care or support to. Also, you don’t need to be related, but the person must consider you a family member…”.
How can we support caregivers?
For employers :
- Offer flexibility (working hours, telecommuting)
- Introduce leave for caregivers
- Create a climate of recognition and benevolence
For psychosocial workers :
- Listening to the needs of loved ones
- Include them in intervention plans
- Referral to available resources
For all :
- Recognizing their role
- Breaking isolation
- Raising awareness
Some statistics on caregivers in Quebec
- According to the Quebec government, the number is higher today: 1,675,000 people declare themselves caregivers.
- 1 employee in 3 is affected
- 56% of caregivers are employed
- The number of caregivers is on the rise, mainly because of the aging of the population.
- A survey by the Université du Québec en Outaouais (UQO) revealed that some 21% of post-secondary students in Quebec are caregivers. L’Écho de la Rive-Nord
- Among family caregivers, around 46% work full-time, demonstrating the dual workload + caregiving role. org
- Nearly 2 in 5 caregivers (around 40%) say they spend 5 hours or more a week providing help to a loved one. org
“Supporting a loved one is a gesture of love and devotion. But it shouldn’t be an invisible burden. Together, let’s contribute to better recognizing, equipping and supporting these pillars of our society.”
Some organizations that can help caregivers :
- L’Appui: https://www.lappui.org/fr/
- APPAD: https://appad.ca/
- Proche aidance Québec: https://procheaidance.quebec/
- Government of Canada, for information on benefits: https: //www.canada.ca/fr/services/prestations/ae/proches-aidants.html
- YWCA (for women only): https: //www.ydesfemmesmtl.org/services-la-collectivite/soutien-proches-aidantes/
- If you are experiencing personal, family or workplace difficulties, contact the psychosocial reception desk at your CIUSSS to consult a social worker.
- If you are concerned about your mental or physical health: contact the psychosocial reception desk at your CIUSSS or the Info-Social line at 8-1-1.
- Contact Info-aidant, a professional, confidential and free listening, information and referral service. Contact can be made daily from 8 a.m. to 8 p.m. by telephone at 1 855 852-7784, by chat or by e-mail.