My favorite photograph of Omma (my mother) reveals a petite woman in her thirties sporting a cute bob haircut, sitting in a rowboat. From what I remember about this grainy image from the 70s, Omma sits alone, her back facing the camera, but she clearly propels that small boat with nothing but her own strength, her arms lifting the oars enthusiastically in mid-air, as if to say, You better watch out.
When I first encountered this photograph, I wondered, Where is she? Who taught her how to row like that? She looks like she’s enjoying herself!
However, on a typical day, if you were to ask me to describe Omma, the first words that admittedly come to mind are “constant worrier.”
At the end of every visit or phone call, she would always say, “Be careful.” Anything I wanted to try or would venture to do, I’d hear her trademark phrase: Be careful. Be careful. Be careful.
Whenever I felt annoyed or irreverent about it, I followed up with a sarcastic response like “I’m just going to lunch with a friend, Omma. What’s there to be careful about?”
“I know,” she’d say in Korean, then shifting to English, “Just be careful.”
But in this photograph of Omma rowing a boat, I didn’t recognize these usual characteristics of worry or fear. Instead, she appeared vibrant, infinitely capable, even carefree.
I guess it’s not surprising that I became smitten with this image of Omma and why, as an art student in college donning punk-red dyed hair, I built a larger-than-life replica that took up most of my studio space and took several weeks to create.
It was made of papier-mâché and chicken wire. My fingers paid the price. At the time, I didn’t understand why I was building this sculpture and felt a little embarrassed about creating an art monument of sorts inspired by my own mother.
But now, years later, I finally understand my motivations.
First, a few facts about Omma’s life: her biological mother died within months of giving birth to her. Omma grew up poverty-stricken in South Korea and didn’t have the privilege of pursuing an education beyond middle school. In spite of many barriers, she managed two businesses to provide for her struggling family. It’s sadly a story not uncommon in terms of hardships experienced among Koreans of her generation.
In essence, the papier-mâché version of Omma was my attempt to portray Omma as larger than life, as a hero—of her own story, of my story about her—and I wanted myself and others to see her that way too rather than as the underprivileged, unlucky person she views herself to be.
THE DIAGNOSIS
That brings us to the difficult day, three years ago, when we learned that Omma has vascular dementia and Alzheimer’s disease. As the neurologist pointed at different areas on the image of the brain—Omma’s brain—I looked over at her.
Omma looked so incredibly far away. So far away, in fact, that I didn’t dare try to reach her.
According to the Alzheimer’s Association, “Worldwide, 50 million people are living with Alzheimer’s and other dementias.” For each respective person living with dementia, their family’s journey is unique and decisions involve a myriad of factors.
For instance, check out these heartfelt stories, such as the videos about Joe and his mother, Molly (who had lived with Lewy Body dementia), Ruth Soukoup’s article, “6 Things No One Told Us About Being A Caregiver,” and the numerous stories shared on the Alzheimer’s Society blog.In our family’s case, we first tried to preserve Omma’s autonomy as much as reasonably possible so she could continue living independently with Appa (my father) in their home.
Gradually, however, Omma’s ability to handle certain things—such as finances, driving, and cooking—had to be replaced in such a way that still afforded her some dignity yet prevented unnecessary risk. Sometimes as a new caregiver, I didn’t handle certain transitions gracefully and had to learn along the way from my mistakes (and still am).
In honor of people living with dementia and their families, I wanted to reflect on a few lessons learned as a caregiver, including some helpful resources, and also bring up perhaps an uncomfortable, guilt-ridden topic that I suspect other caregivers wrestle with as well.
To help Omma stay in her home longer during the earlier stages of dementia, our family invested in products and services that offered some peace of mind.
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For starters, we were incredibly fortunate that Omma was eligible for the Community Care Services Program (CCSP), a Georgia Medicaid waiver program for disability that covers valuable services to help delay the need for a nursing home. This meant we could bring in a part-time caregiver to help prepare meals and handle light housekeeping. Omma also received door-to-door transportation to and from an adult day program where she looks forward to seeing her friends and playing (and often winning) Bingo, as well as participating in a host of other activities.
CookStop stovetop fire prevention
Definitely worth the peace of mind.
Basically, this motion-sensor device connects to your electric stove. You can program it to turn off the stove if it’s left unattended for a certain amount of time (I was paranoid, so I think I set it for something like a minute or less, but the device is adjustable).
Although I was initially iffy about the cost, we definitely found this device to be very effective, reliable, and so worth the peace of mind. Read more about it here.
We haven’t tried this device yet, but for folks with gas stoves, check out the iGuardStove,
When Omma began to accidentally leave the faucet running, especially in the bathroom late at night, we invested in a touch-free faucet.
When considering a touchless faucet, make sure to consider whether you want a touchless faucet with/without a touch function option, ease of installation, type of faucet you’ll need to fit your existing sink (i.e. one-hole, three-hole), any additional features you’ll want, and if you’d like an optional battery pack.
Here are 3 well-reviewed touchless faucets below.
Moen Arbor Motionsense Kitchen Faucet (7594ESRS)
Pros: Respected brand, choose from 1 or 2 sensor styles, easy installation, for 1- and 3-hole setups.
Cons: Some reported issues with the sensor. A bit pricier.
Read more about it here.
Boharers Motion Sensor Kitchen Faucet with Sprayer
Pros: Can accommodate 1-hole or 3-hole sinks. Relatively affordable. 18″ flexible hose.
Cons: Some reported issues with installation instructions.
Read more about it here.
KOHLER Sensate Touchless Faucet
Pros: Fastest reaction time for motion sensor (20 ms). Adjustable water temperature while running. Spray head also responds to sensors.
Cons: Expensive.
Read more about it here.
MEDICATION DISPENSER
One of the biggest caregiving concerns while Omma lived independently was making sure she received her daily medications (and at the right time of day). Initially, Omma had been responsible for managing her own medications, but it became clear that we needed another solution as she would often forget to take them or run the risk of accidentally overdosing.
You’ll find quite a few pill dispensers on the market now, but after a bit of research, here are the pros and cons of the particular one we’d used for almost two years. For the most part, this LiveFine dispenser allowed Omma to feel some autonomy in that when the dispenser’s alarm sounded (twice a day in her case), she would walk over, flip over the dispenser to receive the pills (turning off the alarm). That said, there were some days she didn’t want to take certain medications which involved additional, creative approaches.
The LiveFine dispenser is battery-powered so make sure to replace them periodically before they die. It was rare, but sometimes Omma set the dispenser down a bit hard on the counter, jostling the batteries just enough to turn the device off. To resolve this problem, we placed a thin layer of fabric on top of the batteries and that seemed to do the trick. 🙌🏼
As a caregiver, this dispenser offered some peace of mind, allowing me to refill Omma’s medications only twice a month (vs. worrying daily or weekly about it) and helped me stay on top of any upcoming refills.
LiveFine Automatic Pill Dispenser
Pros: Relatively easy to customize times (up to 6 alerts a day). Audible and visual alarms that sound and flash up to 30 minutes when pills are due. Includes an optional way to lock the lid to prevent accidental overdose and spills.
Cons: While good for holding several pills in one slot, probably wouldn’t be a good fit for someone who needs more than 12-15 pills per dose.
Read more about it here.
MEMORY PICTURE PHONE
Omma began to forget how to use a smartphone,so we ended up trying this Memory Picture Phone that she grew to rely on for its ease.
The landline phone available from The Alzheimer’s Store comes with a large dial pad, bright red light to indicate incoming calls, a loud ringer, and 10 memory picture button keys (switchable for one-touch or two-touch dialing), plus an emergency button.
Instead of trying to remember someone’s name or how to reach the contacts on a smart phone, Omma could now reach me from home, for instance, by pressing one button (the one with my image, which we’d programmed with my number). Read more about the Memory Picture Phone by visiting The Alzheimer’s Store.
As for phone plans, we ended up comparing options and decided on subscribing to a Voice over IP (VoIP) service with Broadvoice (PhonePower) because it was very affordable and their customer service was pretty great. And because Omma wanted to call family and friends in Korea, the phone plan also included 60 free minutes for international calls to 45 different countries per month.
CAREGIVERS MAKING SPACE FOR DREAMS
As for that memorable photograph of Omma, I’m not sure where it is right now. I hope it somehow has made its way back to a family album, that is, after my art student fingers got a hold of it.
Since Omma’s diagnosis, the past three years have involved a sea change in terms of how our family copes and adapts as my mother’s condition evolves. As challenging as it has been (and continues to be at times), our family’s experience has involved incomparable lessons in adaptability, resilience, forgiveness, and compassion.
At times, caregiving has involved witnessing my worst sides and, as someone who usually prides herself on being able to accomplish things and be in control, the reality of a loved one’s dementia has a way of slapping you awake. Caregiving has required a letting go of overdetermined plans and expectations and instead requires me to stay adaptable and open-minded as Omma’s condition progresses.
That said, caregiving for Omma has also involved finding inner strength and resilience to an extent I didn’t know was possible.
One of the biggest challenges for me is making sure to cultivate space for myself in terms of self-care, joy, and, yes, following my dreams.
In particular, my dreams entail sailing and adventuring with my husband in our 35′ sailboat named “Hope.” To give myself permission to pursue this dream has involved an array of conflicting feelings related to caregiving—a ton of guilt, sense of duty, resentment, and frustration, to name a few.
But when I consider Omma’s mantra of “be careful,” I’m also reminded of how she, inevitably, would reveal her delight and pride about the very things she told me to be careful about, whether it involved traveling to various countries, pursuing a Ph.D., or learning how to swim.
In spite of herself, Omma—I feel deeply—wants me to push beyond my own fears (and her fears for me).
I think about that photograph of Omma and wonder how she felt that day on the boat. Since she can’t swim and has rarely been on the water, I imagine she must have felt at least a little nervous and most likely pretty scared. Later today, when I visit her, I’ll ask.
In the meantime, I want to consider how to best honor Omma in a way that may feel a bit counterintuitive (at least at first) because it may require being away more often in the future as I seek adventure by sailboat, and return to tell her about it.
To fellow caregivers reading this, is there a way to honor your deepest dreams while honoring your loved ones who live with dementia?
How can we caregivers continue to show compassion and love for our loved ones, as well as maintain self-care and compassion for ourselves too?
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