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Left out of the story, but not for long.
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.
As the caregiving discussion becomes more mainstream, we hear many experiences about the family caregiver.
But, what about the paid caregivers? They are not mention often in the national caregiving conversation. However, many of us rely on paid caregivers such as home health aids or personal care aids.
Paid caregivers provide the additional bandwidth and support that supplement our own caregiving efforts. Yet, these workers aren’t paid enough to afford their own care. And, they don’t have a support network or backup when things fall apart.
The more we understand how nuanced the caregiver crisis is, the better equipped we are to tell the complete story of why things must change. It also ensures solutions cover the range of unpaid and paid caregiver needs.
This edition of Care Fully:
Takes us into a paid caregiver’s world.
Provides tips on communicating within the hospital setting.
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].
🗞️ THE REAL DEAL
I work in health care and I can’t afford health insurance. . . . I go to bed in pain every night.”
Joyce is a 63-year old home care worker. She cares for her adopted sister Leah who has spina bifida and scoliosis. Also, she cares for her great-niece Lisa who has cerebral palsy and developmental disabilities.
From chronic pain due to degenerative discs in her spine, to a blood thinner she can’t go three days without, to the use of a daily inhaler to help her breathe, Joyce is going through it.
When the Affordable Care Act tax credits expired on December 31, 2025, her monthly insurance premiums jumped from $544 to over $1,300. This amount is equivalent to her paycheck for two weeks of work!
Since she couldn’t afford it, she dropped her coverage. Her husband broke his arm mid-December and dropped his insurance as well. Joyce is a health care worker, but can’t afford insurance. Her story is echoed throughout our country.
Would it surprise you to hear that home health and personal care aides were the largest occupation in the US as of May 2024? It certainly surprised me that these workers number 3.2 million.
Home health care professionals care for people by doing a variety of things from bathing, dressing, feeding, managing medications, and more. Their work keeps people in their homes instead of having to go to nursing facilities.
Despite the amount of work and care these workers provide, the median hourly pay for this work is $16.77. This negligible amount doesn’t include the cost of travel between clients or loss wages if clients are hospitalized.
Joyce is a member of a health care worker union and she testified before the House Budget Committee on January 21, 2026 about her experience. While the house passed the bill to reinstate these credits, things have stalled in the Senate. You can follow updates to this issue here.
In addition, there is a collective bargaining agreement affecting home care workers in Joyce’s home state of Virginia. The governor will be weighing in on it this week or next.
Paid caregivers are a critical part of our health infrastructure. Ensuring they are able to survive and access the same health care we all rely on is not only fair, it is necessary.
🏥 COMMUNICATION, THE LOST ART FORM
We’ve all experienced “not being heard” by clinicians.
It is tough on both sides. Health care workers continue to face intense pressure from overworking, insurers, and whatever other drama happens to be present in their workplaces.
And, obviously, patients and caregivers don’t want to be in the hospital in the first place. Adding illness and pain to that equation, makes things even more stressful and intense.
While there is no magic button to make things better each and every time, there are tips that can help.
Ask for details about the person communicating with you throughout the process and how frequent. Some times clinicians will offer this information up front. Other times they will unintentionally leave out details. Either way, it doesn’t hurt to get clarity upfront.
Have one point of contact on your side. In many cases, the single point of contact will be the primary caregiver. However, if you are fortunate to have several people supporting you in the moment, make sure only one of you connect with the hospital team. It keeps things manageable.
Repeat, repeat, repeat. When you are told information, confirm it by repeating it back. This serves two purposes. First, right off the bat it helps the clinician recognize that you understand what is being said. Second, it confirms you are listening carefully and have specific things to look for.
Take notes. If a family member or friend is with you, have them take notes. If this isn’t the case, do your best to capture notes as you confirm what the clinician states. You can also ask if the information will be in your loved one’s electronic record. During my husband’s surgery last year, he was given the notes connected with his procedure as a printout as he was discharged.
Do your best to keep cool. I have learned through many experiences, controlling my emotions gets me closer to the information and treatment I want. I’ve always wanted the clinical team to see me as their partner and not their adversary. It is easier to accomplish that when speaking in a calm voice. This doesn’t work 100% of the time, but it does work a fair amount of the time.
NEWS FOR YOU
Below are a couple of news stories breaking this week.
A few governors signed health care worker bills this week.
Higher gas prices could have some employers revisiting subsidies and WFH.
🫶BEFORE YOU GO . . .
I started this issue with Joyce’s story. Her story is different than mine, and mine may be different from yours. Our stories may differ slightly, but they point to the same set of gaps in our system.
One of the reasons I write Care Fully is visibility. I want caregivers to be and feel seen. This work is foundational to our society. Whether we are paid for it or not, it remains and will always be vital, important, and extraordinary work.
Caregivers of all stripes deserve to be seen. I hope Care Fully becomes one of many places for that visibility. If you know someone who could use Care Fully, please forward this newsletter. 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,
