“You are not alone” – Advice From One Caregiver to Others

January 25, 2017
Photo of caregiver James Joyce with his son Brendan
From left to right, Terry Sweitzer, Brendan Joyce, James Joyce.

Rebecca Goss
Communications Assistant

Thirteen years ago, when James’s son was in his second year of university, he was diagnosed with bipolar disorder. This thrust James and his wife, Terry Sweitzer, into the roles of family caregivers, joining 3.3 million others in Ontario.

The role of family caregiver – that is, caring for a friend, family member or neighbour – can be stressful. Nearly half of Ontario caregivers report having somewhat high to high levels of stress, with nearly 10 per cent reporting high stress. This stress stems from balancing caregiving with employment or other responsibilities, the declining health of their loved one, managing their own mental health and emotions and more. Others may also be taking care of children at home, while balancing caregiving needs for others in their family.

Over one third of caregivers report that they are tired, anxious, or both. As these feelings build up over time, caregivers can become physically or mentally exhausted to the point of distress, anger, anxiety or depression—known as caregiver burnout.

Since becoming a caregiver, James has become an advocate for caregiver support with the Cornwall & District Family Support Group. Once per month, he runs a support group to bring caregivers together, discuss their experiences, learn from each other and find help if they need it. It’s his way of helping others in the hopes of preventing or delaying burn out.

“The thing I always tell people is if you can’t take care of yourself, you can’t take care of a loved one,” James says.

Self-care can include things like taking a long, leisurely bath or walk, enjoying a hobby, or maintaining friendships, James says, since these often get lost when someone starts caregiving.

Education is also the key to mitigating stress and avoiding burnout, adds James. He helps run a free 12-week course annually with the Cornwall & District Family Support Group to educate family caregivers on mental health. It’s education sessions like this, and a culture that recognizes family caregivers, that led The Change Foundation to support Embrace, a Changing CARE partnership in Cornwall.  

“The more you know about what you’re dealing with, the better you’ll be able to cope,” James says. He adds that it’s best to go to an association that works with the illness you’re trying to cope with, since the internet may not always have accurate information. Many disease-specific charitable organizations have free resources online for caregivers to view and learn from.

If nothing else, James wants to remind caregivers that “despite how you feel, you are not alone. There are groups across the province. There are people willing to talk, listen and help you.”

For those looking for caregiver support groups or education opportunities, there are a number of websites to help get a search started including The Caregiver Exchange and the Foundation’s own Caregiver Resource Hub.  

 

 

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