The Reality of Caregiving in the Age of Technology

I was still at HIMSS when I got a call that earlier in the week, my uncle, my mom’s youngest brother, had suffered a stroke. My uncle, who has neither a cell phone, cable television, Internet, nor an email address, finally directed a neighbor through the unlocked side door of his home to a sticky-note affixed to his kitchen cabinet. “Neece,” it read.

I’ve been with him since, navigating the complexity of our healthcare system as caregiver to someone who doesn’t especially want my help and who can, in annoying turns, advocate for his needs in a voice several decibels louder than polite conversation would seemingly dictate. I make a mental note to have his hearing checked while I’m still in Teeny-tiny-town, Nebraska (t3N). 

I secure medical and financial power of attorney, not to speak for him, but to navigate the technology that is necessary to facilitate his care, technology that as Director of Healthcare at Connection I not only know, but champion with our partners and our clients. I feel like I’m now experiencing a kind of karmic payback for every piece of technology I’ve used or sold over the last 30 years.

Internet

Not every community in the U.S. has access to broadband. It’s one of the reasons why programs like The Community Connect Grants, administered by the USDA Rural Development, are so critical to preserve. Thankfully my uncle’s community is covered by 5G, and after considerable handwringing on my part, I dropped in a T-Mobile 5G router so that I could work remotely.

“They’re listening,” my uncle protests as I set the router in the window of his tidy cottage, paranoia a side effect from the stroke or years of relative isolation. “Maybe,” I offer as a concession. “But they’ll probably get bored and move on.” Intuitively, I know better than to shame him for thinking that some deep-state cabal is listening to our conversations through the router.

Medicare

Though my uncle was eligible for Medicare two years ago, he was unable to file because he couldn’t get an appointment at the local-ish Social Security office and lacked the technical skills or tools to file online. To preserve his autonomy, I spent the first week in t3N placing call after call to both the local and national Social Security 800 numbers in an effort to get a local appointment for my uncle. In more than 20 calls placed over the first five days in town, I once waited 293 minutes only to be disconnected by their phone system. 

Finally, I drove him to the local-ish Social Security office and was unceremoniously thrown out by a security guard. 

“You can’t be in here,” he admonished, thrusting a torn sheet of paper with a QR code on it into my uncle’s hand. 

My uncle started, “I don’t have a cell phone—”

The security guard cut him off. “I don’t care. You can’t be in here without an appointment.” 

“He can’t get an appointment,” I began. 

“I know,” replied the security guard. “You can’t be in here.”

The pending in-person identity checks for new and existing Social Security recipients would be an unrealistic expectation under the current structure and staffing for field offices like this one. 

Healthcare

The bright spot in t3N is the variety and high quality of the care delivered effectively by some of the most compassionate providers I’ve met as both a technologist and as a patient. t3N seems untouched by the crises facing healthcare: bed shortages, beleaguered staff, and inadequate staffing. I was able to secure follow up appointments with primary care, specialists in a variety of disciplines, and social workers who brought additional services to my uncle.

Ambient Dictation

At one visit, our nurse informed my uncle and me that she would be using ambient technology, and though I’d like to describe the “how” here, I’m sensitive to the fact that revealing the “how” potentially reveals the system and the community where my uncle is receiving care. I owe both their privacy.

I can share that while the ambient technology was engaged, the caregiver was still behind a 27″ curved display, completely removed from our line of sight. While she looked at her screen, and the ambient technology recorded my uncle’s case history, there were moments of repetition— suggesting that the technology was listening, but the nurse wasn’t. 

This repetition is no different from any patient/caregiver interaction; there’s a fair amount of that anyway, but the lens changes when ambient listening is introduced. As technologists, we’re telling our clinicians that AI mitigates the charting burden, and we’re expecting them to be more engaged in the appointment. If the technology is supposed to get the clinician out from behind the computer, it fails so far on that point—but it may be more successful in the dashboards and metrics available over multiple encounters with my uncle and over the broader population. 

We’re still very early in my uncle’s patient journey and early in the use of ambient technology as well.

Patient Portal

Since I’ve only ever been responsible for my own care, having access to another person’s medical records is a new experience for me—one that as a caregiver, I need in order to give my uncle the best opportunity to speak for himself. 

I’ve been impressed by the speed at which tests, lab results, medication recommendations, and direct communication between his extended care team enter the patient portal, which enables my uncle to behave independently when I’m here and maintain compliance when I’m not. This is where healthcare digital transformation is at its most powerful.

He is still making calls from his landline, and his care team leaves messages on his Radio Shack answering machine, but on either side of those instances is the portal and the power of having access to his care team in near real-time.

Healthcare Still Needs to Be More Inclusive

The experience of caring for my uncle on the heels of having seen cutting-edge advancement in artificial intelligence in healthcare at HIMSS25 in Las Vegas was a humbling one. Our industry can’t lose sight of the estimated 42 million Americans who lack access to broadband. Although it’s estimated that only 600,000 people in the U.S. don’t have a cell phone (my uncle proudly among them), it’s more difficult to understand the numbers of people who still lack technology literacy either by circumstance or by choice. In my uncle’s wide circle of friends, he’s not the only one living as a Luddite. Digital natives are the fastest growing part of our population, but as healthcare technologists, we should build systems that care for everyone.For more information about the latest healthcare technology developments, be sure to visit our healthcare technology solutions page. 

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