When Parkinson's disease bursts into a person's life, it causes major upheavals for him and his loved ones. Relatives are indeed confronted with the fears that the recently diagnosed person may experience. Everyone must adapt to a new situation full of unknowns and unforeseen events. It is a shared experience; we know that it is often the spouses who become caregivers. It is an ordeal that may at first seem insurmountable, but over time families tame the disease and better manage the repercussions. Caregivers must learn to reassess their life and find a balance.

Definition of a caregiver

In October 2020, the Act to Recognize and Support Caregivers went into effect. From this law comes the National policy for caregivers—recognizing and supporting with respect for their wishes and ability to commit. Page 25 includes a definition of a caregiver:

… any person who provides support to one or more members of his or her immediate circle who has or have a temporary or permanent physical, psychological, psychosocial or other incapacity, regardless of their age or living environment, and with whom the person shares an emotional bond as a family member or otherwise. The support is continuous or occasional, and short—or long-term, and is provided on a non-professional basis and in a free, enlightened and revocable manner in order, among other things, to promote the care receiver’s recovery and the preservation and improvement of his or her quality of life at home or in other living environments.

No one is really prepared to become a caregiver.
Do not worry, there is help for you too !

How can I help?
Where do I start?

The first step is to discuss and agree with the person with Parkinson’s on the role you will play. The person with Parkinson’s will make the decisions, but you want to be there, in order to offer physical and emotional support when it’s needed. You also might want to talk about how your involvement as a caregiver can change as Parkinson’s evolves.

We encourage you to form a partnership with the person with Parkinson’s, the health care team, family members and friends. Each has a contribution to make and a role to play in meeting the challenges of Parkinson’s. The more information you and the person with Parkinson’s can gather, the better equipped you will be to cope with day-to-day obstacles. Listen to the doctor’s advice and review what he or she recommends. Talk about available treatment options and learn how the symptoms of Parkinson’s can be managed.

Get up-to-date, reliable information by contacting your doctor, calling the information line or visiting this website.

Taking care of myself as a caregiver, is it still possible ?

Even if the reality of becoming a caregiver can shake your foundations in terms of self care, yes, it is possible to stay kind and present to yourself. And not only is it possible, it will be necessary to keep your wellbeing in mind in order to guarantee a durable and efficient presence all along your caregiving journey.

We encourage you to contact us to learn all the ressources available in your area for you and the person you are assisting. If it is available for you, we strongly recommend you to join one of our support groups. These are a good opportunity to listen, learn and share experiences.

Parkinson is progressive so it may become increasingly difficult to care for a person all by yourself. Look into home care services, day programs or help from your family members. Know your limits and allow yourself some breaks and time away from your caregiving situation. 

Ask for and accept support. Delegate some of your daily tasks when possible and include the people who would like to help into caregiving plans. Find someone you trust when you’re feeling low or need to talk about some of your feelings. Welcome your vulnerability. Get help when you are feeling stressed. And, remember, YOU ARE NOT ALONE.

"Do not forget that the journey into assisting someone as a caregiver can be as hard as it can be beautiful. It is a journey into resiliency, adaptation and love and is a wonderful occasion to learn about self-awareness, compassion and teamwork."

Testimony from Marie-Pier, Montreal, caregiver of a person who has now passed away.

Services for caregivers

Taking on the role of caregiver creates many challenges with which our qualified counsellors can help. Services are free and completely confidential. Contact us for any questions or to make an appointment. We offer you: caring listening, information and resources, coping strategies, help to prevent or cope with burnout, coffee meetings, support groups and conferences. 

Visit our resources section for respite referrals and other services:​