The people we interviewed spoke about being confronted with people’s perceptions and attitudes about their role as caregivers. Although some people were sympathetic or empathetic, caregivers had many negative and troubling interactions with other people. They spoke about how people’s misconceptions sometimes led them to behave thoughtlessly or to make insensitive comments. These negative encounters made it more challenging for caregivers to live with their situation and to communicate their concerns.
Another major point was the invisibility of caregivers in society. Currently, over two million people in Canada are providing care for a family or friend with an illness or disability. The total economic value of that care is estimated at over $25 billion dollars per year in Canada. Despite their significant numbers and their value to the healthcare system, many of the people we interviewed felt that caregivers were invisible to the public in general.
Invisibility of caregivers
Caregivers spoke about personal issues and concerns with regards to invisibility. For example, they did not always feel valued or that they received sufficient recognition, but there was also a lack of adequate services and support.
Caregivers can also feel invisible because people's attention is mostly focused on the ill person. Many people we interviewed wished friends and professionals showed more interest in how they, the caregiver, was doing.
Insensitive or thoughtless reactions
Several caregivers recalled times when people said or did something that was particularly hurtful. Often, others did not seem to understand the challenges of the situation, or simply didn't realize they were being judgemental.
Caregivers also spoke about how people make assumptions about the care recipient based on their appearance. For example, Claire said, "If Luke and I go to a restaurant, almost always the waiter or waitress only speaks to me, or starts by only trying to speak to me, and I have to physically turn and direct them to ask Luke what he wants to eat. I'm not responsible for ordering for him."
Some caregivers struggled with unrealistic expectations for their capacities and role. Sheni said, "I think that a lot of people think that the family of a victim should all be Wonder Woman and Superman. Well, you just can't. There's a limit to your resources, there's a limit to your own capabilities, and there's just a limit to what you can do."
Like Shayna, some caregivers also mentioned how their behaviour and decisions were often misunderstood and judged harshly by others. For example, people were often appalled if ever a caregiver was angry or argued with their ill spouse.
The caregivers we interviewed found some topics particularly difficult to deal with, and generally to speak about.
Donovan said, "If you try to talk to friends about serious things and emotional things, that is a taboo. I may be wrong, but that's the impression I've got". Shoshana said, "Do I want to pursue a new friendship with another couple? I don't know, because that makes me very nervous. It's not something I share, that he has this illness, right away. But if they don't know it, they wouldn't understand his actions."
Some caregivers found it difficult to speak about the impact of caregiving on their own mental health and wellbeing. You can read more about this in the topic page Impact on health.
People that cared for a spouse often had difficulty speaking about the impact caregiving had on their intimate lives, or how it changed their feelings for their spouse. You can find more information about this in the topic page Adapting to new roles and key issues for spouses.
Awareness and recognition
Several caregivers became actively involved in raising awareness about caregiving and illness in society. Shayna said, "I am a tremendous advocate for the caregiver. [...] Because, in the whole, I think the ill person's needs are taken care of, society is going to take care—the doctors, the hospitals, the orderlies, the caregivers and certainly the spouse—is going to make sure that their needs are taken care of. But then who's there to take care of your needs? And you do have needs. No matter how far you put them down, you do have needs."
There are some specific groups of caregivers that possibly receive less attention in our society on the whole, for example, youth caregivers—children caring for a parent, or children that grow up in a care situation— and caregivers who are still employed.