Society and caregiving
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.
Drew would like the healthcare system to recognize caregivers’ contributions.
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. So, if it’s a little extra, I don’t know, recognition around something like holding a cigarette, or whether […]
Rowdyneko has noticed that younger caregivers often have to stop working. There are not enough resources or support for them.
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 […]
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.
Fernanda thinks it would be wonderful if people knew more about what it means to be a caregiver.
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. And if more and more people can become educated…everybody feels it’s always about this person [who has] got cancer and is […]
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.
Snoopey wishes that people would not be so easy to judge her and her mother.
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 […]
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.”
Richard came up with a standard response to people’s question’s about Vivienne. Most people, he felt, simply expected her to get better.
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. I […]
When you are living with someone with a chronic illness, you cannot always do things in a ’normal’ way. Shayna learned that people can respond very strongly to this.
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 […]
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.
When Kai got a job, he didn’t tell his employer or colleagues that his father was ill. You don’t want to let everyone know that your family is not perfect.
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 […]
People find it really difficult to hear about illness says Barbara.
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 […]
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.”
Elaine does many simple things to raise people’s awareness of Parkinson’s disease. It helps people feel more comfortable in otherwise difficult moments.
Oh, just for awareness. I think the more we talk about our lives, the more it can enlighten others: “Okay, I’m not so alone.” I’ve heard that from our Parkinson people that come to our group, new people: “I thought I was the only one in [city in ON] with […]
Ginny has learned how important it is to do nice things for others. She hopes she will have the time to continue visiting the nursing home to brighten people’s days.
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 […]
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.
Kai was a youth caregiver. He would like the government to recognize that youth are often responsible for caring for someone too.
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. Because they feel that, a lot of them, the common thing that […]
In our society there will be more and more people that won’t have family to care for them. Rhyannan would like to encourage others to work as a team when caring for someone.
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 […]
Review date: 2018-02