One major concern I have encountered the last few months is caregiver staffing. If a caregiver contracts the coronavirus, they are off the schedule for a minimum of three weeks; if a caregiver is exposed to the coronavirus, they must quarantine for 14 days to ensure they are virus-free. Losing an integral member of my eight-member staff for this long can leave an incredibly difficult hole in my scheduling needs and, ultimately, my ability to function. The rest of the staff must rise to the occasion, change their own schedules, and come to my aid more than before to fill the void until the sick caregiver can return; the domino effect is monumental.[
After months of scary scheduling voids, it became pretty apparent that I needed to adapt to the current environment. This led me to invent some creative solutions for basic needs that would encourage my independence. Tricky as it should be, being that I’m a full quadriplegic and cannot use my hands, how could I set up independence first and foremost with essential water when no one is around? Enter my new invention that I like to affectionately call my hamster station. My human hamster station is one of the most ingenious contraptions – basically, a standard Camelback water pouch that is hanging from my kitchen cabinetry with reinforced tubing supporting a firm articulating hose allowing the water attachment to protrude just enough that I might roll up to it, and independently sip water just like a little hamster. In addition to the Camelback structure in my kitchen, a secondary hamster station was set up in my working office, where I park it for most of the day. This MacGyver scenario entails a standard sized water bottle zip-tied to the metal articulating armature holding my sip and puff mouse and dictation microphone. With an elongated metal straw sticking out of the top, it provides yet another location for me to roll up to and sip water during the day when no one is around.
What goes in must come out and with all of the water drinking provided yet another interesting challenge – how to independently drain my urine bag. I have a suprapubic catheter, a small tubular system that exits the bladder outside and below my belly button, delivering a constant flow of urine into a collection bag that is clamped closed and attached to the side of my lower leg. The bag is drained by a caregiver multiple times during the day into a cup and discarded into the toilet. If there is no assistance for this draining, my bag backs up into the tube and ultimately up into the bladder, which can create a serious medical condition called autonomic dysreflexia. Historically, with proper hydration, I could only go about two or three hours without emptying the bag, seriously hampering my ability at independence. With the help of my ingenious Craig Hospital wheelchair aficionados, I was introduced to the automatic leg bag drainer. This small black box is situated in a discrete location under my foot petals. The urine bag is attached into this black box, which is closed by a simple lever system until I command the lever to open and the urine to drain out a small plastic tube under the feet. Utilizing my sip and puff technology, I can sip and puff a command utilizing breath through my straw to open and close the black box, therefore independently letting urine out underneath the chair. This little box, although small and very simple, provides a level of independence that is bar none – I can now independently, without anyone’s assistance, drain my own bag. This might not seem like a big deal, but it is. This allows me to be in my home/apartment without assistance for up to 7 to 8 hours. I can drink tons of water independently and I can pee on my own. Game changer.
So, as you can see, although proving to be a very difficult time for many, the coronavirus has also promoted adapting to new environments and creating new solutions for problems that already existed in my life prior to the virus. Most importantly, in the last eight months, I’m learning once again how to make lemonade out of lots of lemons and learning that in addition to the elephant and dragonfly being part of my spirit animal family, I must now also adopt the hamster.
