My accounts have all been a little unusually quiet for the last few weeks, and though I touched on this in my last vlog, I wanted share in more detail about why. The TL;DR version is that I am completely and utterly exhausted.
At the beginning of last September, I accepted an aide position at a different facility than where I had been working for most of 2019. I took about a week and a half of “time-off” between leaving one job, and starting training for the second. This was time I used to physically recuperate, do some graphics and website projects for the comic convention, and finish correcting and filing my accounting and taxes. This break to catch my breath helped me immensely.
I left the previous facility because although I disclosed my scheduling needs, and they agreed to them when I was hired, once I had put in requests for my 2019 shows they continually denied my (and almost everyone else’s) time-off requests. I was also commuting about 40 minutes to work each way, wasting almost two hours of my time each work day plus fuel. For about three months I was in contact with HR trying to locate me a full-time position transfer closer to where I live, but they claimed to not have a single suitable opening, even though every such facility I have seen is constantly hiring. I finally gave up.
My current facility went from submission of my resumé to literally hiring me on the spot within the course of about three days. Now there are things I prefer about my current facility; the nurses are more supportive of aides and willing to share their knowledge. The facility is cleaner and more modern. The food is better! What I do not like is that since mid-September I have been assisting exclusively in memory care. My previous facility rotated aides throughout the building and groups in assisted living and memory care to help avoid burnout. I was offered the opportunity to assist outside the memory care unit, to have a break, when I was “ready,” then brushed off when I brought it up later.
The memory care unit I work in is nearly a nursing home in all but name.
I am essentially responsible for the “Activities of Daily Living” and medication administration for seven to eight adults per night, with second-person assist for a few more beyond that. Almost all of which have little to no control over their bowels, resulting in frequent messes, regardless of how often they are toileted. For those who are still ambulatory, if not caught quickly enough, this usually ends in the resident, their clothing, hands, body, bathroom, carpets, and/or bedding covered in bowel movement. If you are lucky, it has not yet dried onto the surfaces. Almost all memory care residents require extensive hands-on assistance with their ADLs. For example, they might be unable to distinguish a toothbrush from a comb. They will stare at a plate of food until you prompt them to eat, and they may have to be reminded multiple times throughout the meal. They may have to be hand-fed. They frequently refuse meals and must be coaxed or cajoled to eat. Many can barely use language, or have lost the capacity to use and understand spoken language entirely. Many cannot follow a basic instruction such as “sit” or “stand up,” doing the opposite, or something else entirely random and unpredictable. No one can be restrained, obviously, and most of those that still walk are also “high fall risks” that must be watched with vigilance, unless you want be the aide on duty when they break something and make that last trip to the hospital they never return from. Most require assistance sitting and standing, repeated so often that even the best attempts to mitigate my back pain and strain fail. A change of clothes or shower often results in crying and begging on their end; spine-destroying contortions on mine. Some are emotionally disturbed. Some have severe anxiety, and regularly become aggressive, verbally, or physically abusive of staff — screaming insults, hitting, punching, scratching, biting. The period after dinner is often a race to get sundowning residents safely in bed. In their more lucid moments, many often beg to leave the facility or die.
This is on top of the more well-known symptoms of more moderate dementia, such as asking the same questions ad infinitum, or needing reassurance to the point of exhaustion of their name, location, safety, etc. My memory care unit is currently BAD. Few regular staff will pick up shifts, which means I often work with agency employees — resulting in even more work for me, when I already cannot physically complete the tasks I am given in the time allocated. The mind is willing, but the flesh is weak — for the last several weeks, I have needed at least ten hours of sleep a night to feel truly rested. To accomplish all the things I am trying to do in a day, I would have to sleep only about six hours. I am in good shape, but still, I turn 40 years-old in about a month. My body has reached the limits of how hard I can physically push myself.
I love being an aide. I especially enjoy caring for those with dementia. There are fantastically rewarding moments of joy and warmth to be found, like little gems, in this misery. I have been complimented and praised by both families and staff for my approach and patience. But my body cannot do it full-time.
Many have said to me, “Don’t kill yourself for someone already dying.”
And I ruminate on deeper meanings of that, in quiet times.
I think many people, myself included until I began this work, are intellectually aware of the concept of dementia, but it is one of those things that you never fully understand or appreciate until you are faced with it intimately. It is one thing to understand that memory and sense of self disintegrates — it is quite another to watch a woman whose language is nonsense, and sense of self-awareness has significantly diminished, have unintelligible conversations with her own reflection in the bathroom mirror. Questions about who and what we are, our identity, the idea of eternal life — if you believe in it — are brought to the forefront. Extremely advanced dementia renders the individual into a sort of shadow-person; no one is home, yet they live. I witness this psychological and existential horror on a daily basis — not with terror, but with fascination. Then again, I have spent a lot of time gazing into the abyss myself.
The mind is willing, but the flesh is weak. Don’t kill yourself.
For all of this, I am paid less than I made as a retail department manager — a job with better medical benefits, which did not leave me with a sore back and joints daily, and which left me with enough energy to make progress on my personal projects at the end of the night. I left that job at the close of 2018 because of a group of slapnuts harassing and attempting to intimidate me. I was legitimately afraid for my personal safety for about a month. Since they knew where I worked, out of an abundance of caution for myself and for my coworkers, I made a quick career change. I had locks replaced, and I started carrying an emergency whistle and pepper spray. Eventually, I managed to gather evidence confirming some identities, filed informational police reports, distributed all of my documentation to select trusted individuals in the event that I am assaulted at a convention or worse, and went about business.
I will not allow myself to be manipulated by fear or threats ever again.
My big “life lesson” from the year of 2019 was crystallizing and strengthening my sense of self-worth, and learning to assert and stand up for myself.
I also learned how to understand when someone is literally or figuratively full of… bowel movement. And I am fucking pro-tier at dealing with shit now.
December was a rough month — I got pummelled with the standard seasonal blues as the days grew darker, the Sisyphean nature of my job, and I ran out of my ADHD medication due to pharmacy and insurance shenanigans. Which had awful side-effects, in addition to making everyday tasks more difficult. All sorted now, thankfully. About half-way through December, while off my meds, I came upon one of those watershed moments I occasionally have — where I make a big decision relatively quickly. My body desperately needs respite and I am ready to go all-in and get some new books under my belt. So it was that I created a Facebook fundraiser, and raised a little over $5000 in about two weeks. The fundraiser is open until January 31st, and any extra funds raised will help me extend the time that I am able to focus on my art and comics.
During my “leave of absence” I will also be obtaining my CNA license — which will increase my average hourly wage, and create more opportunities for me. Most immediately, I need a CNA to work for staffing agencies, temps, or float pools, where I will be able to choose which weekends I work to accomodate my show schedule. It will also allow me to work in facilities beyond assisted living and memory care, such as care centers, hospitals, and hospice. Hospice care is my end goal, at least part-time, eventually. I am very comfortable with death and feel a strong calling to care for the dying. I had the opportunity to care for my first actively-dying resident earlier this past fall, and it felt a great honour to attend to the body, sing hymns, and help ease their transition.
But for now, my friends, it is time to shine my “asshole” crown.