We need to focus on the right kind of caregiving research, the kind that values family caregivers. We need to move away from over-researching so we can integrate support within research.
After my mom died, I struggled to work through my experience navigating the systems during her end of life. I’m a writer, but to make sense of this experience, I took out a Sharpie and a piece of paper to create this: After my dad died, I took out my Sharpie again: I found it […]
During one update to my dad about home health and palliative care visits for him and my mom, my dad looked at me and said: “Isn’t there someone who should be organizing this for us? Like someone with the insurance?” “Nope,” I said. “That’s why I’m doing it.” Family caregivers do the work of the
After my dad’s bladder cancer diagnosis in March 2004, I regularly attended doctor’s appointments with my parents and provided emotional support to them. My dad received ongoing treatment, which he managed, for his cancer. Because I made attending his appointments a priority, I also advocated on behalf of my dad, especially during one particular appointment
This week, a communication scientist with a PhD commented on my LinkedIn post that compares the valuation leaders in our space give to our hours versus the hours they earn as CEOs. He said: “CEO-level Caregiving requires a ton [of] unseen value and skill. The genuine value is hard to quantify.” This isn’t true. The
(Part 10 in a series that looks at how much we over- and under-research caregiving, leaving family caregivers without effective support and impactful programs. We’re also looking at the economic impact when we don’t effectively support family caregivers.) Every family caregiver runs an operation. You triage. You coordinate across people who don’t talk to each
(Part 9 in a series that looks at how much we over- and under-research caregiving, leaving family caregivers without effective support and impactful programs. We’re also looking at the economic impact when we don’t effectively support family caregivers.) The Missing Questions I connected with a friend on Friday who completed my Certified Caregiving Consultant training.
(Part 8 in a series that looks at how much we over- and under-research caregiving, leaving family caregivers without effective support and impactful programs. We’re also looking at the economic impact when we don’t effectively support family caregivers.) I. Opening scene — 2 a.m. A caree has a bad reaction to a new medication. The
(A follow-up to Part 7: The Burden Scale Is a Burden) Three conversations this week taught me something the Zarit Burden Interview never will. A family caregiver sent me a note because he took the Zarit a couple of months ago and scored a 68, which landed him in what the instrument calls the burnout
(Part 7 in a series that looks at how much we over- and under-research caregiving, leaving family caregivers without effective support and impactful programs.) Something significant is happening right now. Money is moving toward family caregivers in ways we have not seen before. In November 2025, Texas voters approved $3 billion over ten years to
When Colorado cuts Casey Barrett’s Medicaid reimbursement, the loss doesn’t stay inside his house. Casey Barrett is a single father in Colorado who shared his story in a May 2026 article for NBC News. He earned his nursing assistant license and built his entire life around caring for his 14-year-old daughter — tube feeding, diaper
