Pandemic-era burnout: One consumer’s tiring, tech-enabled journey to find memory care for a parent

The first in a new feature series on burnout in healthcare during COVID-19, this essay shows how consumers – just like clinicians, CIOs, vendor employees and others – are being worn down by the demands of disruption, and how tech can help.
By Bill Siwicki
12:21 PM
Pandemic-era burnout: One consumer’s tiring, tech-enabled journey to find memory care for a parent

My mom settles in to the memory care facility as my husband finishes unpacking on move-in day.

To see all of the feature stories in the Burnout in the Age of COVID-19 series, click here.

urnout is a terrible feeling. It can adversely affect behavioral, mental and physical health. And, especially now, it can affect anyone. The pressing daily challenges of the times we find ourselves in have left many, many people from all walks of life feeling overtired to the point of exhaustion – numb and depressed.

Burnout is something everyone must do all they can to protect themselves against. But as we’ve seen in this new era of upsetting news stories, frustrating social distance demands, hectic homeschooling, claustrophobia, disrupted routines and daily repetition, that’s easier said than done.

A new series of features

This story is the first in a new series of Healthcare IT News features focused on pandemic-era burnout across the healthcare IT space: how it manifests, who it impacts, how to protect against it and how digital health tools can help (even as technology itself, admittedly, can also exacerbate frustration and exhaution).

In the weeks and months to come, I'll be profiling physicians, nurses, CIOs, hospital IT workers, tech vendors and many other employees across our industry, to learn about their experiences with burnout since the start of the COVID-19 public health emergency, and about what they’re doing to defend against the damage it can do.

But today, it’s my turn.

In this firsthand look at consumer burnout, I’ll show how the pandemic put barriers between me and a vulnerable loved one, causing stress and distress for us both.

I’ll also show how technology helped alleviate much of the frustration that came with that disruption. How the screen of my smartphone became an essential lifeline, enabling critical texts with caregivers and staff, face-to-face video calls, and virtual visits to new facilities – and enabling me to find quality care for her at a distance, when that might not otherwise have been possible.

Dementia: Fast and furious

A couple of months before the pandemic shut things down in March, my mother was diagnosed with dementia. I had experience with dementia, in the form of my husband’s father’s Alzheimer’s disease: Dad has had it for a few years, and his decline has been very slow, his memory slowly diminishing. That’s not how it was to be with my Mom.

At first, Mom had memory slips and often could not find the right word when she was speaking. Nothing too serious. Certainly nothing life threatening. I had previously set up Mom in an independent living facility with a team of home health workers to help her with activities of daily living and, most important, give her her medications. Everything was being managed.

But then the dementia came roaring on, amplified by the isolation of COVID-19. It was fast and furious. Around May and June, Mom started talking about strange things that weren’t real. She began an endless pursuit of thinking she was moving “home” – meaning either her house before the independent living facility or a house where she grew up in Tennessee. She even started packing bags with her things. And, importantly, she quickly began losing her strength.

Then came the falls and, the big one, wandering – a hallmark dementia symptom, and a very dangerous one. Fortunately, receptionists at the front door stopped her from leaving the building (heading for a long-gone home). But this was an independent living facility: People could walk out the door if they wanted. So it was mere chance that she was stopped this time. Next time might be different. So things had to change.

Private caregivers take over

Within a day of that wandering episode, I got a team of private caregivers who were cleared to work in the building – remember, all of this is in the middle of a pandemic – to take care of my mother during all of her waking hours. They were recommended highly by the home health agency taking care of Mom, who only visited her here and there during the day.

But because of the pandemic and the independent living facility’s complete lockdown, every action I took, every communication I made, every bit of research I did, was confined to one tool – my smartphone. Thank goodness for this piece of technology.

I interviewed the private caregivers during phone calls. I got a lot of information on them from my trusted home health contact. I got the names and mobile numbers of the three caregivers who would be with Mom and set up text message threads with them so I could keep tabs on Mom and them 24/7. Text messaging would prove a great lifeline between me and the care of my Mom.

But I knew the caregivers would only be a temporary fix, and my mind was starting to fray with the tension caused by worrying about Mom and the daily work of keeping her safe as life quickly changed. Then came the next step.

Doctor’s orders: Memory care

Because of Mom’s mental and physical state, she quite suddenly would need to be placed in a memory care facility. This order came from her primary care doctor, who was generous enough to make a house call to see my Mom during lockdown, receiving special permission from staff to enter the building. This was appreciated, as there’s a long list of challenging procedures necessary to take a resident out of a facility during lockdown that we wanted to avoid at all costs.

Another reason to get Mom into a memory care facility as soon as possible: She has limited funds, and private caregivers, almost around the clock, cost a lot. For a variety of reasons, time was of the essence. The clock was ticking, and I could feel every movement of the second hand.

So, transfer an 87-year-old woman from an independent living facility to a memory care facility in the middle of a pandemic when everyone is locked down. And do so as quickly as humanly possible, because her mental and physical health are deteriorating fast.

Here, my husband John stepped in, knowing that I burn out FAST when it comes to calling people, being put on hold, getting the wrong person and being transferred back to the operator, being put on hold again, accidentally getting hung up on. And so on. My mind is unable to cope with this digital torture.

A white knight

We enlisted a senior care assistant recommended by my Mom’s primary care physician to help us find a memory care facility that both suited Mom’s needs and offered high-quality care. The assistant worked with John over the phone, via text and online – in a matter of 48 hours narrowing down all the memory care facilities on the north side of Chicago and the western suburbs of the city to just a handful of places that met our needs.

We thought we’d have to be sifting through tons of different options, but she knew exactly what we needed and, with a focus on quality, she saved us a lot of work. A text message thread between the two of us was immeasurably helpful for quick questions on both sides of the coin.

So John did a first pass, sitting on the couch using his smartphone to look at pictures and read quality reports to further narrow things down to three facilities that he liked. He passed those to me to examine, and I liked them, too. Our senior care assistant directed us to Medicare.gov, where we examined the facilities’ quality ratings. (Thank goodness for that resource.)

Then came the big hurdle. Because of the pandemic and their quarantine rules, we couldn’t visit these facilities in person, which is insane, when you’re trying to choose the place where your mother will live. But there was no way around it. Talk about stress!

How to tour during lockdown?

And that’s where, once again, the smartphone saved the day: FaceTime tours.

The sales reps at these facilities walked us around the whole facility holding their own phones or tablets out so we could see everything as they narrated the tours. (For the tours, we moved from the iPhone to the iPad to get a bigger picture of the facilities. A larger screen did help.)

Between the FaceTime tours, facility websites with tons of pictures, Yelp reviews and Medicare quality ratings, John and I had to make a decision from all that digitized data. It was nerve-wracking because this is, after all, where Mom was going to live.

We got held up by one memory care facility we really liked. Its sister skilled nursing facility got bad reviews. Mom might have to go to this facility one day if things get bad. So we got the backstory on what was going on at this facility from staff. They also told us that if necessary, Mom could go to any skilled nursing facility in this provider’s network. And all the other facilities had great Medicare ratings. So that bolstered our opinion of this provider.

The choice is made

So we made our choice, and were very happy with it. Now came all the paperwork, and a doctor visit to screen and clear Mom for entry into the new facility. All of this we were able to rush through, except for the COVID-19 test results, which took a week to come back. (Negative.)

Then it was my turn to make some magic happen: Man the phone and get three different organizations – the independent living facility, the memory care facility and the movers – to all agree on a date and time for the move. I quickly moved this over to all texting. Much easier for me to manage. After a lot of swearing on my part (not in the texts, I was polite), we got a date and time, though it was later than I would have liked. Mom needed memory care fast. The stress kept growing. My hair already is white; it cannot get any whiter.

The move, quite fortuitously, went smoothly. John and I were able to enter the memory care facility for a limited time to set up Mom’s two-room unit. We had to be out of the building by 4 p.m. because of Sundowners Syndrome, which can affect dementia patients late in the day. We finished setting up with only 10 minutes to spare.

But the last hour was nice because we got to visit with Mom face to face (with all precautions) while we were working. A rare treat with facilities on lockdown.

Leaving the memory care facility that day, I breathed a huge sigh of relief. Mom was at last where she needed to be, getting the proper care, 24/7. And all the craziness was over. No more calls, no more texts, no more online research, no more FaceTime tours. It was done.

The nurses we met on moving day let us know that they would be more than happy to facilitate FaceTime calls with my Mom using their devices anytime. Another assist from the smartphone. And while there is a doctor in the house, the memory care facility can facilitate telehealth video calls to specialists.

Some tips

I was burned out at the end. But I also had a sense of accomplishment. And great relief. And great thankfulness for my husband. And I was glad for all the things my smartphone enabled. But it was time to set that smartphone down, kick up my feet, and engage in some Turner Classic Movies therapy to heal a burned-out mind.

Put another way, here’s my advice for managing stressful situations in an already-stressful time.

  1. Mentally measure what you achieve, and acknowledge that.
  2. Ask for help, and show gratitude to those who lend a hand.
  3. Use available tools that make tasks easier and more efficient.
  4. Rest, and reward yourself with your favorite things.

Coming up next in this series on burnout in healthcare during the age of COVID-19: CIOs and burnout - how it manifests for them, and tips from successful IT leaders to combat and defeat high stress.

Twitter: @SiwickiHealthIT
Email the writer: bsiwicki@himss.org
Healthcare IT News is a HIMSS Media publication.

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