Written by Kate Landreth
Caregivers’ voices and experiences are a central element to our educational resources and support offerings at FCBC. We listen to understand the needs of caregivers with the intention to provide relevant information and topics that will assist and support the wellbeing of caregivers. Your voice truly does matter!
We are grateful for the caregivers who shared their experiences, insight and wisdom on our podcast, Caregivers Out Loud. If you haven’t yet listened, you can find all four episodes here: www.familycaregiversbc.ca/podcast/
We have also connected with caregivers during COVID-19 to share their experiences with the community. These caregivers openly shared the changes in their role, which include, but are not limited to, reduced respite, increased care time (which meant reduced working hours for employed caregivers) and additional worry and stress to ensure the health and safety of their care recipient.
From the conversations we have had with caregivers, one thread remains similar, the caregiving role does not stop. ‘We have to adapt so that COVID-19 doesn’t affect our lives in a dangerous way,” said a caregiver in Vancouver, BC. This full-time caregiver provides care to her 69-year old mother, who has severe dementia. Her mother lives with her full-time and she does not have the luxury of self-isolating; her mother needs 24/7 care and as an employed caregiver she requires both home support and private care to ensure that her mother is well taken care of and is safe. Additional caution and protocols within her home are in place to ensure that anyone entering is wearing a mask, gloves and changing into clean and sanitized clothes.
“No one prepares you for caregiving,” she says, and “being a full-time employed caregiver, respite is my only option to avoid burnout.” The topic of burnout is a common one with caregiving. And this caregiver relayed something quite impactful on the topic of COVID-19 and caregiving: “I am not worried as much about getting COVID, as I am about getting other diseases that are associated with burnout.” Our conversation identified the challenges and struggles of navigating the system and advocating on behalf of her mother, and she also highlighted the deep personal shifts and changes she has had through her caregiving role. She is grateful for her resiliency skills and work-ethic, as they have ultimately allowed her to keep her mother living with her. She used words like “honour” and “opportunity” to describe her caregiving role. “It is a gift to give love and support to my mother… our relationship wasn’t always close, but this has allowed us to heal areas of our relationship.” COVID-19 cannot “stop the machine of caregiving” and she is making educated decisions on how to care for her mother in times of uncertainty.
Our next caregiver graciously shared her COVID-19 caregiving experience, while also bringing awareness to her sister’s experience with Alzheimer’s Disease using a popular app called TikTok. If you are like us and new to TikTok, it is a social media platform for creating and sharing short videos.
Jean cares for her 59-year old sister who has early onset Alzheimer’s Disease and in the past year she moved herself and her sister in with her parents. She wanted to ensure a sense of safety, security and community for her sister, while also being there when needed to support her aging parents. Alzheimer Disease does not run in their family and it took time to make a diagnosis. Her sister is a vibrant, successful, competent and creative individual, who started to have cognitive decline with symptoms such as misplacing things, confusion and forgetfulness.
Jean has shifted her life to be a caregiver, including adjusting her working schedule. She expressed gratitude for the place that she lives in beautiful BC and the ability to isolate together. During COVID-19, her sister’s regular routine and supports outside of the home stopped, which has caused some frustration and boredom. To limit the amount of people entering and exiting the home, Jean does the grocery shopping and errands. Her sister has also been able to have virtual medical appointments, which has supported them during this time. Jean’s caregiving role has remained the same, but there is an additional layer of worry and anxiety when considering protection and safety. “I am incredibly proud of my sister, and our relationship. Caregiving has a very sweet side, aside from the anxiety, grief and stress of it all,” Jean explained. And you can see this sweet and caring side in their creative and informative videos (on TikTok). The videos highlight her sister and her journey with Alzheimer’s Disease. These videos have gotten thousands of views and hundreds of heartwarming comments that have lifted their spirits during their time in self-isolation. Jean shared, “I wanted to capture these moments to help my sister remember certain times of her life.” You can find these videos here: www.tiktok.com/@jfcthisusernamestress
We set out to capture caregiving stories during the unique time of COVID-19 and what became apparent is that, while the act of caregiving never stops, it does adapt. Through our connection and communication with caregivers we are continually inspired by their compassion, perspective and resiliency.