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Caregivers Archives - SPM Blog
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Building Us Up, Not Tearing Us Down

Building Us Up, Not Tearing Us Down


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“Lack of effort and persistence”  Those words cut like a knife, leaving a deeper wound than any facet of illness my daughter has faced. A provider used those words to describe my 19-year-old daughter Sara, who has lived her entire life with chronic complex medical...
Family Caregivers and Care Partners: An Essential, but Underserved Part of Participatory Medicine

Family Caregivers and Care Partners: An Essential, but Underserved Part of Participatory Medicine


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Informal, unpaid family caregivers and care partners are increasingly the backbone of participatory medicine. My father was a physician, but when he was seriously ill, it was really on my mom and me to advocate for him, understand the constellation of conditions,...
There’s More to Participatory Medicine than Doctors and Patients

There’s More to Participatory Medicine than Doctors and Patients


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Throughout the history of the Society for Participatory Medicine (SPM), the discussions have focused on two groups of participants. The first is the patient and caregivers. SPM’s work, as illustrated in the Manifesto, has been dedicated to ensuring that members of...
It’s Time to Acknowledge the Invisible Caregivers Among Us

It’s Time to Acknowledge the Invisible Caregivers Among Us


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I received an uncharacteristically anxious text from my friend Aileen: “I am having an emergency with my Mom. Please call ASAP.” When I last talked to Aileen, her mother’s dementia had been worsening slowly. A little more confusion, a stovetop left burning after...

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