Caregivers Develop Wishlist to Help Improve Their Mental Health

A young man with down syndrome and his father, smiling together

The mental health and well-being of caregivers is an important, but sometimes overlooked, issue that caregivers and the organizations that support them are acknowledging and trying to address.

There are 3.3 million Ontario are caregivers, ordinary people who are caring for family members, partners, friends or neighbors with physical and mental health challenges.

This Mental Health Week, The Ontario Caregiver Organization (TOCO),  in partnership with Ontario-based informal caregivers, is releasing the Caring for the Mental Health of Caregivers Wishlist with the hope it inspires caregivers to reach out for help early in their caregiving journey.    

According to Statistics Canada, despite coping well with caregiving responsibilities, caregivers report often feeling worried or anxious. Half of caregivers say the role has had a negative effect on their own mental health (Spotlight on Ontario Caregivers, The Change Foundation).

There are many aspects of caregiving that are stressful, particularly dealing with the declining health of the person they care for, meeting their needs and managing their own emotions. Caregivers experience a wide range of emotions like grief, sadness, confusion, loneliness and guilt throughout their journey. These feelings can compound over time and contribute to caregiver burnout or depression.

Reaching out for support early in the journey is a key factor in helping to reduce the strain and improve the mental well-being of caregivers, but it is often difficult for caregivers to come forward or know where to turn.

“If you asked me during year one (of caregiving) if I had things under control, I would have told you, I sure do,” reported Andrea, an Ontario caregiver. “If you said to me at the end of year two, are you still okay?  I would have told you, we’re okay, we’re doing fine. The reality is nobody wants to say I don’t know what I’m doing and I’m inadequate. I don’t think I can handle this. And, I’m feeling really stressed.”

TOCO asked a group of caregivers what they need to support their own mental health.  Here are some of their wishes:

  1. We wish for greater empathy and respect.
  2. We wish for improved navigation of the health care system.
  3. We wish for easier access to health care information of those we are caring for and resources.
  4. We wish health care providers and the public had a greater understanding of the caregiver role.
  5. We wish for more ‘hands-on’ or respite support for caregivers.
  6. We wish for general support from the community at large. This could include in the workplace and from schools.

In collaboration with caregivers across Ontario, TOCO will be sharing our summary of findings in the coming weeks. The goal of the wishlist project is to identify the key factors in a caregiver’s journey that contribute to stress and anxiety, as well as to start a conversation about potential solutions that can be championed in the healthcare system.

To add your own voice to the wishlist, or to tell your caregiver story, get in touch with us here.

Sign up for latest resources, events and updates from the OCO delivered right to your inbox.