Irene Fantopoulos lives in Toronto, Ontario. Besides working for the Ontario Public Service, she also is a caregiver for her mother, Mary. After reading about #ilivewithdementia.ca, Irene was inspired to tell her own story regarding her experiences with stigma against people living with dementia and their caregivers.

By Irene Fantopoulos

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I recently wrote an article for the Ontario Public Service about my mother Mary. Mom has a mixed diagnosis of vascular dementia and Alzheimer’s disease. Her condition is compounded by the effects of ministrokes after sustaining a head trauma from a car accident she had eight years ago.

I mention my mom by her name because that is part of her identity. She is Mary and will always be Mary. She is not a patient. She is not crazy. She is a person with wants and needs like of the rest of us.

The response to my article was amazing and quite revealing. Revealing in that there are so many people who are facing similar situations with their parents or other family members. Amazing because many of them were talking about it for the first time. Writing about my experience with my mother has opened the proverbial floodgates. Many of my colleagues had so much pent-up sadness, anxiety and solitude in how they deal with family members living with this disease. People wanted to reach out, to thank me for being so open, but to also tell me their stories.

Dealing with stigma against caregivers

I compare Alzheimer’s to mental health in many ways. Both share the stigma of a disease that we can’t quite feel or touch like we do when we see someone with a broken leg or arm. As caregivers, we keep silent and suffer without reaching out to anyone. Our voices aren’t heard because of how we think people might react: “Sounds like an excuse for time off work,” or “How hard can it really be to care for an ailing parent?”

Only those who have lived through or who are currently living with someone who has some form of dementia know what I’m talking about.

Dealing with stigma against people with dementia

Over the years, I’ve heard many derogative comments about people living with the disease: “She’s putting on an act,” “She just wants attention,” or, “I just told him that a few minutes ago.”

But the worst thing I’ve ever heard was: “He’s demented.” The words we choose when we’re talking about dementia is just as disturbing as when we call someone living with a mental health issue a “whacko” or “nuts.” Some of these comments came from strangers and some even come from family members. These statements are often due to a lack of understanding of the disease and because so few of us talk about it.

In the earlier stages of Alzheimer’s, when mom still had some facility with her speech and was aware of her surroundings, she would say things that were perceived to be funny, such as not talking in full sentences, seeing people who weren’t there, grasping for a word or looking confused. In the early days, I used to laugh along with others and said nothing, even though I felt uncomfortable, even embarrassed. We all need a little levity to cope with the disease, right?

But how funny is it for the person living with Alzheimer’s disease? Well, it’s not—and I challenge and tell people that we need to be mindful of our actions and reactions because the person with the dementia is still a human being with feelings. Even in the later stages of the disease, they can pick up on verbal cues and your body language. What if the person can hear us, but is unable to find the words to express themselves? So, if your “spidey” senses are telling you that what’s happening isn’t right, do something about it.

Understanding begins with each, and every one of us.

Because any one of us could end up caring for a family member with dementia, as a society we need to better understand the disease, be able to talk about it more openly and access the support that we need as caregivers. We also need to support the beleaguered, and often overworked personal support workers who take care of our mothers and fathers.

Mom is in the latter stages of the disease, having regressed back to her childhood. She is often afraid—fearful that her father will punish her if she doesn’t come home on time. I have to reassure her, tell her: “I told your father that you’re with me and that I have his permission.” When I tell her this, Mom is calmer and the furrows in her brow disappear.

There is nothing worse than seeing someone you love deteriorate before your eyes. One you remember as awe-inspiring. How she managed everything despite competing demands. How she picked herself up and punched through life’s ups and downs. We need to raise awareness and help families and the public better understand the stereotypes and stigma associated with Alzheimer’s disease.

We also need to recognize that Alzheimer’s is not an old person’s disease and that early onset is not a work of fiction—it’s very real. I’ve met people who are in their 40s and 50s who are living with some form of dementia. It can strike any one of us at any time.

We need to continue the dialogue to ensure that, if and when we might need it, the support will be there to prop us up emotionally, physically and mentally.

Closing thoughts

In my own small way, I hope that I have helped to continue or at least open the conversation. I chat with people in my day-to-day interactions at work, with my friends, with the families of residents at my Mom’s nursing home and, of course, those who work and visit the nursing home.

I’m also a member of the Executive of the Hellenic Home Family Council. Our role is to advocate on behalf of the residents on a systemic level to ensure that they’re able to live the rest of their life with dignity and grace. I now know that I’m not alone. Neither are you.

It is incumbent on all of us to be the community support that these people need.

It’s the right thing to do.

Visit ilivewithdementia.ca to learn more about stigma and read more stories of people like Irene.

For information and support about Alzheimer’s disease and other dementias, visit the Alzheimer Society of Canada website.