By definition, “dwindle” means to diminish gradually in size, amount or strength.
Janet Dunnett will never forget this word. She was in Emergency with her mom and saw the word “Dwindler” on the top of the chart. Nothing else was on the chart. It struck such a chord with Janet that it titled her book, The Dwindling: A Daughter’s Caregiving Journey to the Edge of Life, which takes readers on her personal caregiving journey.
It’s an Alberta and BC story spanning 10 years where the “daughter at a distance,” Janet, and her twin sister and primary caregiver, Judi, “daughter on deck” advocated and cared for their mom and dad to the end stages of life.
Between them, they called it “The Parent Project.” Not out of disrespect or from a lack of love for their parents; rather, simply from an approach. Projects have team members each with defined roles. As does caregiving. Projects have objectives and goals; caregiving has them, too. Projects have timelines; caregiving has stages over the course of time. Projects also come to an end and with that comes reflection and appreciating the process.
The caregiving continuum typically starts with becoming more involved and providing increased support to the care recipient. In Janet and Judi’s case, they could see their parents gradually losing capacity with chronic illnesses and dementia. Janet provided respite for Judi, who, being the primary caregiver, did the bulk of the heavy lifting over a decade of care. Judi chose to eventually retire early from work due to the time and emotional demands of being the primary caregiver.
Somewhere along the continuum, caregiving becomes more intense. For Janet and Judi, the marked change in their parents’ abilities resulted in an all-encompassing three to four years of caregiving. For their mom, it was her physical functionality and chronic pain. Their dad was fighting the progressive cognitive decline with dementia.
Caregiving became focused on finding solutions for immediate and expanding fires, navigating the healthcare maze and advocating for their parents. It was also about supporting purposeful activities and maintaining meaning for their parents. If there was a stage where they were most at risk for isolation, it was during this period.
Janet speaks to the last stage of caregiving; moving towards end of life. There is no way to fix anything and the shift moves to acceptance. Less doing and more being. Janet speaks to the gifts in this stage, including battles being over, more appreciation of each other, more vulnerability and tenderness. One of the greatest gifts she and Judi gained was how much they learned about themselves.
How does one manage 10 years of caregiving for two parents?
In a heartbeat Janet would say being her sister’s support and deckhand was most important. Finding support in whatever shape that takes is key during all the stages of caregiving. Judi and Janet’s advice for other caregivers includes learning how to speak the same language as the healthcare team, figuring out who makes the decisions and documenting each interaction. This helps getting answers quicker, and sharing information becomes more efficient.
One of the more difficult parts of caregiving is taking time for yourself. Their advice is simple: when you find time on your hands (and it may not be much), take it for yourself. Journaling is an important piece to help grieve the losses that can come with caring and to try to make sense of the emotions that are bound to surface.
Janet is sharing her experience and learnings in an upcoming webinar with Family Caregivers of BC on October 11, 2018.
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Wendy Johnstone is a Gerontologist and a consultant with Family Caregivers of British Columbia in Victoria, BC.