Denise shares her thoughts about and insights on the personal caregiving experience.
Decades ago, we gathered with my aunt and some of her kids on Christmas Eve. My uncle was home with one of the daughters, unable to join the celebration because of spinal tumors that caused debilitating pain. At the time, my dad worked as editor-in-chief of the Sears catalog and had just released a catalog
Last week, you told me why caregiving is so hard. You wrote about its relentless pressures, its never-ending demands and the lack of helpful, effective resources. What strikes me is that you all commented on the different systems you have to manage — payer, provider, medical, health care, family, financial, nervous. It’s the systems that
A Google search on “caregiving” turned up an AI-generated answer to a question that stopped us cold: why is caregiving so hard? We wrote about it and loved reading your responses across Caring Our Way, LinkedIn, and Substack. We want to continue that conversation, so it’s the focus of our next Caregiving Listener Project™ on the
For some reason this week, I did a Google search on “caregiving.” The search produced this question with answers generated by AI: Why is caregiving so hard? Hmm… Why is caregiving so hard? I glanced at the AI-generated answers and thought we could do better. Let’s create a list. I have a few thoughts and
We asked family caregivers about their scope of work. The results: 84.4% provide emotional support. Family caregivers tell us they provide emotional support more than they provide personal care (57.5%). Yet, our systems don’t provide any kind of ongoing emotional support to the family caregivers, whose scope of work doesn’t include breaks, shifts, and time
543 family caregivers documented their scope of work through our Non-Reimbursed Family Caregiver Savings Calculator. Almost 85% say emotional support is one of their top responsibilities, more than personal care (58%). Yet we have no formal, reimbursed service that provides emotional support to family caregivers themselves. Family caregivers give without having the support they deserve.
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
In May, I decided to build a calculator to better understand your value. I had released other calculators as part of a care economy series to demonstrate the cost of not supporting family caregivers. The missing calculator, I decided, was the one that takes into account the scope of your work and then crunches the
I paused while reading this profile of a family caregiver in People magazine: “We are not a caregiver and a patient. We are still a team,” she affirms. “It’s only been in the last six months that I’ve accepted the term caregiver. I only wanted to be his wife. I used to physically flinch when
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
