To give you a glimpse of the depth of Nira’s experience, I asked her a few questions:
Paul: I understand that part of your role is to support families who have become caregivers. Tell me a little bit about what that involves.
Nira: My work involves helping people to take on their caregiving roles, while making sure that they don’t get overwhelmed or suffer many of the hardships of this journey. The system is not easy to contend with, and having a professional advocate in your corner is essential. Many caregivers feel that having one person who knows their story makes it easier. It is a challenge to balance this all, but I enjoy seeing caregivers develop the skills. Many even find this new role a rewarding experience.
Caregiving is not a role most of us plan for. It often arrives on our doorstep unexpectedly, sometimes with a sudden diagnosis, or with a change in function of someone we care about, and very often, when we are not ready. It is something that we suddenly have to integrate into our routines. Most caregivers want to do a great job, yet often need help to find the resources, tools, and emotional support to manage the multitude of things they have to do.
Paul: You’ve responded to questions from many family caregivers, both face-to-face and through your Caregiver SOS series in the Toronto Star. Give me an example of one area where you often see families struggle.
Nira: Some of the common struggles I see in my patient population involve the caregiver’s feelings of impotence and guilt. It is very hard to care for someone whose condition may be worsening. The endless work and the need to be “on top of things” create stress and a feeling of “never being able to do enough.” To add to it, most caregivers are juggling jobs, childcare or other family obligations, and many are caregiving for more than one individual. The challenge of prioritizing and juggling this is very real.
Paul: What was it like to be part of the documentary, The Caregivers’ Club?
Nira: The documentary maker, Cynthia Banks, wanted to represent the struggles and life changes that dementia caregivers go through. She was a caregiver to her father and watched her mother struggle with the health care system and a multitude care issues. She allowed me to do my work without bringing an agenda, other than supporting the caregivers and bringing the real caregiving world to the filming.
Filming took place over the year of 2017. As an occupational therapist and case manager, I had the privilege of working with the families Cynthia was following during this period, and this made the filming more authentic. Watching how life changes in a moment, how people go through terrible losses and struggles was very real and raw. After the film was complete, I really had a chance to see how much dementia and caregiving stress affects me as a professional as well as my clients. It gave me a chance to reflect on my role and the key part health professionals can play in the caregiver’s life.
Paul: A lot of people look to you for advice. But I suspect you’ve also learned a lot from the families you’ve helped. Can you share an important lesson you’ve learned from family caregivers over the years?
Nira: I am awed by the resourcefulness that people demonstrate in the toughest of situations. They may say “I can’t take it anymore” and they may truly mean it, but most caregivers are incredibly strong and find new ways to accomplish their goals. The depth of some families always amazes me, and their way of rallying around each other and the person they are caring for is inspiring.
I revere the advocacy and relentlessness that caregivers can demonstrate. No matter if they are sole caregivers or a family working together – when they champion good care for the person they’re invested in, it’s remarkable to watch. I have learned that it comes from deep inside them. Even individuals who may appear weak can truly roar like a lion to get what the person they care for needs.
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