As the Coronavirus has taught us, being confined to our homes isn't always cozy. It can make us feel trapped. That's the way I felt during the first year after my husband's stroke. For him, the sense of entrapment had to be much worse. He was trapped inside a body that barely functioned on his one "good" side.
When he left the rehab hospital after six weeks, he was advised on basic assistive devices—hemi walker (for one-armed use), quad cane, wheelchair, bedside commode, and an ankle/foot orthotic. That's all. Just primitive tools to help him get from one place to the other, usually with me as caregiver beside him, gasping after each precarious wobble.
At the end of the first year, I drove us 1100 miles north to visit family. Once in New York, I loaded my husband's wheelchair into the car and stacked my mother's on top of it. While my sister pushed our mother and I pushed my husband, we raced along the Jones Beach boardwalk to uh ohs from Mom, eye rolls from my husband, and playful laughter from my sister. I felt like a recreation aide at a nursing home.
The problem with pushing my husband in a wheelchair was that it divided us, both physically and psychologically. We were no longer side-by-side equals. Just as the Coronavirus quarantine has shown parents how hard it is to be a home-schooling teacher, my husband's stroke threw me into the challenging role of being a nurse. I wanted my husband back, and I wanted my old self. My old, free self. Thus began the shopping spree…to find tools that would help us both become more independent.
My husband fell 16 times in the two years after his stroke. Yes, I counted, probably as a subconscious way to validate my unhappiness. One of those times, I came home from a doctor's appointment to find him outside on the ground covered in blood, his eyeglasses half-buried in distant rocks. Another time he fell in the driveway while I was in the kitchen; what I thought was the distant cry of a mockingbird turned out to be him yelling for help. Once again…blood. Injury. Whereas he'd previously been great at everything athletic, he could have won an Olympic gold medal for falling after his stroke. He broke bones, sprained joints, and always had something swollen or bruised. It was common for him to render his one usable hand unusable, throwing us back to square one. Think about it. Eating without hands. Getting wheeled to the bathroom and…then what?
The falling was the biggest issue…for both of us. While the injuries entrapped him, they entrapped me, too. I never felt safe being more than a few feet from him. As a caregiver, it was as if I were, in Mafia-speak, swimming with the fishes, lead weights strapped to my ankles.
The next hack came as a gift from our son. He bought us an Amazon Echo Dot and a smart plug so my husband wouldn't have to let go of his cane to turn off a lamp. He'd just say, "Alexa…turn off the living room light."
Shortly after, when my husband fell in the bathtub and got tangled around his shower chair, we bought an Echo Dot for that room, too. (Yes, I helped him up before ordering it). Then we bought one for every other room in the house. On the Alexa app, I programmed in the phone numbers of friends and neighbors so if my husband became immobile, he could still say, "Alexa…call Laurie." Or anyone in our contacts. Although Alexa isn't able to call 911 directly without a few fixes, if you Google "Can Alexa call 911?" you'll find setup information for "Amazon Echo Connect" or the "Ooma app" to connect to a local emergency dispatcher.
Now, if you're thinking you're not that tech savvy, no one is until they learn this stuff. You don't need to be. Googlina, as I like to think of her, is your fairy godmother…much more advanced than her caveman cousin, the 8 Ball. If you can open Google on your phone or computer, you can ask any how-to question and she will provide. Personally, I learn best when she sends me a YouTube video with instructions. Maybe you prefer diagrams. However you do it, you're guaranteed to learn new things, wake up your brain, and best of all give yourself a sense of independence. If you're an old-fashioned woman, you'll discover that the best-kept secret among men is that this stuff is easier than it looks. And, if you're craving social time instead, just call the Customer Service line of your tech products and ask for technical help.
When a firefighter told me we could also call and request "lift assist only" from an EMT, I realized no one could get inside if I'm not home. That led to our next hack--a push-button coded front-door entry. Ours is a basic one for under $100, not something I could unlock via an app from a distance, although those are available. Again, thanks to a YouTube video and its pause button, I was able to install it easily.
Sometimes there are plusses to disasters. A hurricane that sent two trees through our roof enabled us to remodel our home. The Coronavirus quarantines have helped many people save money by not eating out. The stroke allowed us to get better parking spots with a handicapped permit. As the saying goes, when a door closes, sometimes a window opens. For us, it was technology.
Because my brain is always working on the next thing that could go wrong, I realized that if my husband fell and got knocked unconscious, he wouldn't be able to ask Alexa to call for help. The solution to that issue came when family members gifted us with a Ring doorbell and Echo Show, both with video that you can see and talk through from any location. We now have cameras provided by Ring (bought at Best Buy) and Wyze (bought on Amazon) all over our property, and we get alerts on our cell phones if there are people in view.
My Wyze app even allows me to look in on my mother over a thousand miles away, and it was cheap and easy to set up. Our son has been able to prop a Wyze camera in front of his aquarium so that when he's away and his cat starts eying the tank for potential prey, he can yell at her to get down. Even the felonious feline is tech savvy enough to heed the warning.
Long before we installed these devices at home, we made our first foray into the outside world thanks to an electric mobility scooter. That enabled us to shop together, stroll through bookstores, and explore quaint little towns. Still, we wondered why we never saw people with limitations like my husband's when we were out and about. All we could assume was that many had simply given up the effort, or they didn't have the means or knowhow to access the kinds of "toys" we were able to get hold of. Our hearts go out to those less fortunate, but for all people, there are still options, though it often takes surfing the web and asking for help.
Many states have programs that accept donations of assistive devices and offer them for free to borrow or own. Some state parks loan out wheelchairs, power chairs, and even tractor-like devices for hiking alongside friends. As for low-cost "toys" that have been essential, there are cup holders that attach to a cane. We bought one on Amazon called "Hold My Drink," and another in the bicycle department at Walmart. Foldable canes are also great for putting in the basket of a mobility scooter.
Cars, too, can be adapted to accommodate a disability. Whether you just need hand controls or a left-foot gas pedal, there are companies that will pick up your vehicle by tow truck and return it to you equipped. Some systems allow you to switch the device with the push of a button to accommodate both an abled and a disabled driver, depending upon who's at the wheel. If you purchase a new car or SUV and want to have it adapted—even by a separate company—many car companies will reimburse you (up to $1500 last time I looked) toward the adaptation price if you do it within a certain period of time after purchasing the vehicle. Just call the car company or find the details in an online search.
If you're going on vacation and planning to rent a car, most major car rental companies provide the option to borrow a vehicle that's adapted for a handicapped person. I haven't yet found one, though, with the push-button option to enable both the abled and disabled driver, but maybe that will change.
Another device offering peace of mind is an Apple watch. The newer ones come with fall detection. If you go down and say, "Hey Siri…call Laurie," I'll come running. That is, if you're my husband. If you pass out and don't say anything, the watch is supposed to contact 911 and send an ambulance to your location based on the GPS signal in your watch.
If you think it's easy to load toothpaste onto a toothbrush, try doing it with one hand. I found a toothpaste squeezer on Amazon to mount to the bathroom wall, so now my husband just presses his toothbrush against a lever and out comes the toothpaste. Another useful bathroom product is a suction-mounted portable grabber bar for travel or home use. A portable shower chair is also a plus.
To loosen a stroke-clenched hand, my husband found the Tens 7000 to be powerful and effective. He said it reminded him of the Bioness device that his occupational therapist used for electrical stimulation.
Considering that every year in the US nearly 800,000 people have a stroke, the need for adaptations is high. There are so many devices, and new inventions are being worked on daily. If you can't find it today, it may be available tomorrow. Whether it's age that imposes new limitations or the misfortune of a disability, the one most empowering skill we should all hold onto is believing that somewhere out there a solution—an adaptation—exists. And if it doesn't, maybe we should create it ourselves.
