Caring While Carrying

May 13, 2026

Hi there!

I’m Erna, the author of Care Fully.

My caregiver journey started over 20 years ago, when I was 21 years old. As a newly minted college graduate, my life was just beginning. I had no idea how to deal with the ups, downs, and in-betweens of caregiving for my Mother.

Care Fully is a play on words. The questions I am asked and the ones I still have drive each issue of this newsletter.

We “care fully” by balancing our needs as a caregivers with those we provide care for. My goal is to offer up experiences and information to support your caregiving journey.

The most common caregiving story we hear goes like this: someone gets sick, ages, or is injured. Family or a close friend steps in as a caregiver. Caregiving could include medication managements, meal prep, doctor appointment navigation, and more. The work is hard and emotionally exhausting. Hopefully the person is healthy enough to handle it. But, what if they are not?

This week’s Care Fully:

  • Sheds light on an unseen caregiver group.

  • Spotlights eye-catching technology headlines.

  • Shares news about an upcoming memory loss conference.

If this edition was forwarded to you, please sign up for your own copy here. To spotlight or support caregiving in your company, email [email protected].

😶ASSUMPTIONS HAVE BEEN MADE

Caregiving policy, support programs, and even the way in which we refer to caregiving often focuses on one perspective, able-bodied people provide care to those who cannot care for themselves. This is untrue of course.

The “Caregivers with Disabilities: An Overlooked & Under-supported Caregiving Population” report discusses this in great detail within the US. Before getting into the particulars of the report, let me share how the authors address disability terminology.

“We use the terms ‘caregiver with disabilities’ and ‘disabled caregivers’ interchangeably in this report to reflect the varied preferences of disabled individuals [and of members of different  disability communities], some of whom prefer person-first language [and find it more respectful of their full humanity] while others prefer identity-first language [for similar reasons]. There are longstanding advocacy movements on both sides of the disability language debate that we acknowledge and affirm. For this reason, and because we discuss disability as a general category rather than as separate subpopulations, we have chosen to use person-first and identity-first language interchangeably.” —Authors of Caregivers with Disabilities: An Overlooked & Under-supported Caregiving Population

Please keep the above in mind as I share a few thoughts from the report. Also note, page seven of the report shares the specifics of how disability was defined for the research.

Thirty-six percent of adult family caregivers in the US have a disability. In many cases, they are 65 or older, live in rural areas, and nearly twice as likely to identify as LGBTQ+.

Most in this group suppor a spouse, live-in partner, sibling, grandchild, or close friend. They tend to provide “high-intensity care” for those with a cognitive issue such as Alzheimer's or the like. Their caregiving journeys last five or more years, consisting of multiple types of care including personal care tasks, meals, finances, and the like.

The most striking findings involve outcomes. Chronic stress, defined as always or usually feeling tense, anxious, or unable to sleep, affects 32% of disabled caregivers, compared with just 6% of nondisabled caregivers. A third report poor mental health. Eight percent ran out of food in the past year and couldn't afford more. The numbers are difficult to sit with.

But, it gets worse. I’ve mentioned the US National Strategy to Support Family Caregivers (RAISE Act) in past newsletters. It calls attention to populations that have been excluded from caregiver support in the past. Caregivers with disabilities are not named in this document.

And, last but not least, some caregivers have access to state Medicaid programs that allow for family caregivers to receive a stipend. For this group of caregivers, that stipend could be a double-edged sword. Those stipends can potentially jeopardize the caregiver’s eligibility for Medicaid or other supports.

As we await policy shifts caregivers with disabilities, please keep an eye on Medicaid options. If you provide care for a Medicaid eligible person, please review the supports they receive. There could also be something that helps you. If you have questions, an Aging and Disability Resource Center can help.

🌟GETTING TO KNOW YOU

Which best describes your caregiving situation?

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Poll results will be shared in a future issue as a bridge into what our community is sharing and what that means for the support systems we need.

👀 EYE-CATCHING HEADLINES

To ensure we’re all in the loop about things that might help us or loved ones, I keep a steady rotation of technology news in my inbox. Below are this week’s stories.

  • Guess which search engine just launched an AI health coach? If you guessed Google, you’d be correct! I’d love to hear your thoughts.

  • I love reading about practical technology that can better the lives of care recipients and caregivers. Nobi and its fall prevention focus caught my attention.

  • And, CX Precision Medicine’s NeuroFirst Memory is a blood test your PCP can use to determine if memory issues are potentially caused by “Alzheimer’s-related dementia or something else.”

📅 UPCOMING CONFERENCE

The Caring for People with Memory Loss Conference is happening on May 30th with in-person and virtual options.

This conference seeks to provide “information, support, and education for adult children, spouses, parents, health and community care providers, and others concerned with supporting those with memory loss.

You can read more about the conference and register here.

 🫶 BEFORE YOU GO . . .

Caregiving is often seen and described as invisible work. Yet, some caregivers are more invisible than others because systems and supports were not built with them in mind.

More than one in three family caregivers in the US manages their own disability, while also managing someone else's care. This happens with fewer resources, more hours, and less support than non-disabled peers.

Seeing caregivers across life experiences is a start. Building systems that reach them is the work to be done. When we recognize challenges across caregiver journeys, we can understand how important it is to advocate for all aspects of caregiver lives.

Share this issue with someone who might be heading into this moment. They could be a fellow caregiver, colleague in HR, policymaker in your network, or someone who wants to know more about caregivers. The more folks who understand what is at stake and what is possible, the faster we can make change happen.

Until next time,