CAREGIVER SUPPORT PROGRAM Emily, Caregiver Coordinator 406-259-5212
PRIME CONNECTIONS FOR CAREGIVERS:
The Power of Community By: Emily J., Adult Resource Alliance
In a speech given to Brigham Young University, New York Times columnist David Brooks spoke about the power of community, and what makes a community effective. “When you think about it, there is one skill at the center of any healthy family, company, classroom, community, university, or nation: the ability to see someone else deeply, to know another person profoundly, and to make them feel heard and understood.” I wholeheartedly believe this and, to me, this embodies this month’s theme of Prime Connections. In thinking about the caregivers in our community, I often wonder what’s the best way to help them feel heard and understood. For those who are not presently caregivers, I think it starts with listening, but for those who are caregivers, I think it starts with a willingness to share your story. In an effort to foster a community of connection, I have asked one of our community caregivers to share her story, which follows below. She is an example of someone who is dedicated to building the kind of community that Mr. Brooks spoke of. She dedicates much of her time to contributing as much as she can, as often as she can, to other caregivers in our community. Although she wishes to remain anonymous, I offer my sincere gratitude for her invaluable contribution.
Share a little bit about your caregiving journey. Over 50 years ago I was the only relative within approximately 1,000 miles to help my maternal grandparents when they started having physical and memory problems. Over a dozen years I made the 60-mile round trip several times per month, helping with activities of daily living, doctor appointments, etc. Daily pill boxes were not invented, so I decided to use a calendar and 2” X 2” coin envelopes marked with the days of the week and dosage times to help trigger medication compliance. Since that time, I had a total of eight relatives in two generations on both sides of my family with various types of dementia in advanced age. My mother’s Alzheimer’s Disease started with a Mild Cognitive Impairment diagnosis in 2002. My father’s dementia was diagnosed in 2010. Dad was Mom’s primary care partner, but due to his lack of understanding, the generational ideas of spousal duties, and his dementia and cancer symptoms, his ability to provide care became increasingly challenging. While working full 28
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time, my caregiving help increased to 20 hours per week as their diseases progressed. Dad passed in 2013 and Mom died in 2014.
What did you find most difficult about navigating your caregiving journey? Anything you wish you would have known then that you know now? Fifty years ago, there was next to no education available about "senile dementia,” so no support was forthcoming. Thankfully, education and support have become more available, but one needs to know where and how to access these resources. In the beginning of my grandparent caregiving, I truthfully answered questions from them and corrected them to orient them to reality. Sometimes this was painful for them. It took years of effort on my part to understand that changing to the patient's “world,” sometimes with "little white lies" or redirected responses, was a more caring approach, which I tried to use with my parents toward the end of their disease journey.
