The Kahnawake Territory is a reserve of the on the south shore of the in , across from 听滨苍 , just about everyone knows everyone - either as a family relation, co-worker, friend or neighbour. But despite the closeness of this community, caregivers of loved ones with cancer often live their caregiving experience in relative silence and suffer from the burden of care, often compromising their own health and well-being.
When Kateri Memorial Hospital Centre teamed up with the University of Ottawa (through the research team of Candida Rice, BScN, and Drs. Chad Hammond and Roanne Thomas) for a research project to learn about the challenges and strengths of the people who care for those with cancer in Kahnawake, they reaped unexpected rewards.听
The resulting six digital stories, representing the personal experience of 6 caregivers, is available on 听not only demonstrate the importance of spirituality and culture to the work, well-being and values of caregivers in Kahnawake, they also help build community ties and serve as educational tools, including for medical students at 平特五不中, to learn more about Indigenous cultural practices. These teachings have provided guidance and strength to caregivers.听
Motivation behind the project stemmed primarily from the desire to recognize caregivers in the community of Kahnawake, give them a voice and support them on their journey.
鈥�Caregivers tend to get neglected or be overlooked and they keep quiet about what鈥檚 going on with them. They prioritize the person with cancer, sometimes to the detriment of their own wellness. We wanted to make the caregiver鈥檚 experience the priority so that the community could hear and understand what they go through and be there for them.鈥� (Candida Rice, community nurse, Kahnawake).
The stories contain very personal reflections, including situations in which the caregivers received teachings, often gifts and messages, that were revealed in dreams, by talking with elders, and by connecting with loved ones. Caregivers felt these teachings led them toward a stronger connection to the land and the creator. One person observed 鈥渢he spirituality that winds in and out of the dreams that connect you to each other.鈥�
The stories also speak to larger, sometimes invisible truths such as the loneliness of caregiving, difficulty in navigating the healthcare system, systemic racism, and the universal need for support and compassion at the end of life, both for the person dying and for the caregivers looking after that person.
鈥淭his project speaks to a lot of things all at once. These stories are very personal in nature but also speak to some larger truths, some common experiences that don鈥檛 often get recognized. People see themselves in these types of stories because they talk about the struggles of self-care, of respecting the wishes of others, of navigating healthcare settings or systems that are not that respectful or supportive. As some of the stories show, there were encounters that were very racially charged with the healthcare system. But they also speak to those larger, more universal truths about the need to care for oneself and to care for others and the challenges that comes at the end of life with people whose time is short and needs are high and who need a circle of care around them. And if that circle is not there or if people aren鈥檛 connected to each other in a good way, people鈥檚 needs won鈥檛 be met.鈥� (Chad Hammond, Research Lead for Caregivers鈥� Stories from Kahnawake, University of Ottawa).
The project was launched in 2018 in the community of Kahnawake. Aside from being available on YouTube for open access, it has since been shared with multiple organizations including , St. Elizabeth Healthcare as part of program, and the .
Caregivers鈥� Stories from Kahnawake has also served as an important teaching tool at 平特五不中. The Director of the Indigenous Health Professions Program,, had the project lead, Candida Rice, and Calvin Jacobs from Kateri Memorial Hospital Centre speak to second-year medical students, about Kahnawake Mohawk history, culture and health practices. The digital stories are used as teaching tools to educate about cultural beliefs, spirituality and practices for end-of-life care.
鈥淚 have added some of the stories into our presentation when I talk about end-of-life care . This is a way to help up and coming doctors understand where our people are coming from and how to relate them. The video by Joanne where her Dad is having a delusional episode - she understood it in terms of our spiritual belief, but the physician kept asking her about how much alcohol her father consumed. So you get a taste of how native people are unfairly treated. I thought this was good to show to medical students.鈥� (Candida Rice).
The Caregivers Stories inspired artist Marion Snow to create the 鈥淐aregiver鈥檚 Basket鈥�, an artistic piece that is an additional form of expression of what caregiving means in the community of Kahnawake and how the struggles and strengths of caregivers can inspire compassion, love and care across the community.
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Each of the caregivers contributed to the art piece by braiding 21 strands of sweet grass. The first 7 strands represent those 7 generations behind us, our parents, our grandparents, etc, the next 7 represent the 7 sacred teachings that we need: Love, Kindness, Honesty, Courage, Wisdom, Truth and Humility. The last 7 strands are those of the 7 generations in front of us, our children, our grandchildren and so on, as well as those children yet to be born, tomorrow and the days to come.
Sweet grass is the scared hair of Mother Earth; its sweet aroma reminds people of the gentleness, love and kindness she has for people. Sweet grass is used for smudging and purification of the spirit, it has a calming effect. All 6 Caregivers鈥� braids of sweet grass rest in the Caregiver鈥檚 basket.
Marion described the composition and symbolism of the art piece as follows: 鈥淭he Caregiver鈥檚 Basket is ash splint, velvet, yarn and glass beads. The basket appears heavy, but indeed it is almost weightless from its tether points on the wall and ceiling. It is the strength of many arms and many spirits. It conveys the weight of carrying something very heavy. It is to remember our caregivers and acknowledge them whenever we can and to know that their job is a very hard one.鈥�
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For more information, contact Kahnawake community nurse candida.rice.kahnawake [at] ssss.gounv.qc.ca (Candida Rice) or, chad.hammond11 [at] gmail.com (Dr. Chad Hammond).