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.
We feel like, as family, we feel like we are contributing to the public health system in a very material way, if nothing else. And yet, that’s not always how we’re received.
I don’t see a whole lot of information out there that I recognize as someone who’s younger, still working, that kind of thing. It’s just not out there. It’s not, that’s not seen as ‘maybe there’s not that many people in that role’ but there is; I’ve run into people through doing, being a caregiver, I’ve run into a fair number of people, probably in my age group or younger, who are caregiving spouses. So, I mean, but it doesn’t seem to be high on the radar. And any programs I’ve heard of from the federal government seem to be for older caregivers and family caregiving for older relatives—parents. I don’t see anything else out there. There needs to be something about…there needs to be some support for people who work. I mean, I know people that just leave their jobs; they don’t have a choice. I mean, I have a choice because I work for an employer—well, I’m unionized so, I mean, I have some rights and benefits and stuff that other people don’t have […]. So in many ways, I consider myself fortunate because I’ve got these things a lot of other people don’t have. They just have to abandon their jobs. I mean, I work with a lot of people on disability—persons with disabilities under the provincial government—and, I mean, a lot of those people are in that situation because they’ve had health issues and they didn’t have any other choice. And now they live on $901 a month. I mean, I’m very grateful for what we’ve got. […] I would just think it’s really deplorable there’s no support out there for the people.
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.
You asked me of my frustration—what was the negative? And perhaps it’s also very big negative impact was that how many people are so ignorant about the caregiver’s role.
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.
A lot of people look at me and my mom and they think “Oh, she’s obese because she doesn’t get out much,” and “there’s something wrong with her.” But it’s not her fault. She can’t walk. I mean, she goes like maybe 15 feet to the bathroom and she’s already huffing and puffing when she comes back, and so.
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."
It is isolating, and one of the biggest things that people say when they join the Well Spouse Association is “I felt so alone.” And that’s one of our, one of the slogans of the association: “You are not alone.” Because you cannot talk easily about what’s going on.
Okay so let me speak a bit about the isolation of the caregiver, okay. So, my first incident was when my children were very young and my husband stopped driving and I came to pick him up at the local Y. I had two children in car seats in the backseat that had fallen asleep, I was sitting in the car and my husband came out and started to walk down the stairs to the car. And I knew instinctively, it was very early in the illness, but something told me, “Don’t help him; he needs to be as independent as he can.” I saw that it wasn’t a safety issue, so I let him handle the stairs but I found it so difficult that I held onto the steering wheel so tight that I didn’t even realize until later that my palms were bleeding, that my nails had cut into my palms. And as I was watching him in the rear-view mirror to make sure he was okay, a friend rounded the corner, looked at me in the car, looked at my husband on the stairs, walked over to the car and said, “You bitch,” and ran to help him. And that was the beginning of my awareness of exactly how the caregiver is perceived when they don’t do what is considered normative. But in a chronic illness, you cannot do what’s normative. It’s not a crisis illness that’s going to go away in 6 months; this is the rest of your life and this is the rest of your family’s life, and you have to handle it in a way that makes sense for your family. And if you expect your relatives who are not around, your friends or strangers to understand, you’re going to be very, very disappointed. Most people have no idea what’s involved.
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.
So moving forward, probably about the summer of 2007, I was at a point where I needed a job. So I got a job doing barista—I was a barista—and I also got a job as sales worker, retail. And it was good. It got me out of the house and it allowed me to have a little financial security.
I was considerably more alone in the caregiving for your spouse situation because friends that the two of you had simply avoid you—as if they weren’t already because I had MS. So, friends vanish. They really do. They don’t know what to say. They don’t know how to deal with these new people. So you’re much more alone to begin with. Friends don’t want to hear about it, they really don’t.
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 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."
Oh, just for awareness.
I think, yes. I think it’s to really look on the positive side and do something positive every day for others. I just so appreciate when somebody does something for someone else, whether it was my mother or whether I saw somebody doing something kind for somebody else in the care centre.
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.
We are getting the word out there, but our goal is to challenge legislation and to get the support. And if they can’t afford to give us support, at least give the children the recognition that they want.
I know that there are people out there who are the only person doing the caregiving for someone who is seriously chronically ill or dying. But it’s a hell of a lot to handle as well as your own life, and especially, I think, when dementia’s involved. Because you’re constantly having to try and move through the confusion and the contradictions and try and figure out what it is that they really want and whether it’s possible to give it to them. And so, I don’t know. I mean, I don’t know how in the culture we can support people—who don’t necessarily know each other, but who are friends of the person that needs the caregiving—to come together and work as a group. And perhaps, that would be facilitated through these specific roles of power of attorney and representative. I mean, those people end up having to work together. But I guess, I would really encourage people to, if at all possible, have that circle of friends from the person who you are caregiving for, because there’s going to be so much that one of them will know that the others won’t know.