I love my job.
No, that’s not sarcasm – I mean it. I really love my job.
Working for an organization that provides services to people living with HIV (and HIV-related testing and education to the community) is incredibly rewarding. Don’t get me wrong – it’s challenging. Working with a highly-stigmatized disease in an exceptionally conservative community depending on government grants and begging friends and family for donations…. well, when I say it like that, it’s a wonder I love my job. But I do. For every failure, there has been a great success. For every misstep, an inspiration. And for every exhausting challenge, there has been a client deeply impacted by our services. What’s not to love?
Well, that was until disease #2 entered the picture. You know all that stuff I said above about how challenging it is? Well, that was before COVID. COVID magnified those challenges ten-fold while creating countless new ones. We have to continue to provide service that depends on clients feeling comfortable enough in our space to share the most intimate details of their life but somehow do it virtually. While I was working remotely prior to the pandemic to take care of Gary, the rest of the staff was not. And then, thanks to COVID, they were. How do I connect with staff when we are scattered across the region and never see each other? How do I balance the needs of the agency with the needs of the staff who were suddenly faced with changing the way we do everything, while balancing concern for sick parents and homeschooling children? How do we survive financially when we are struck, suddenly and without warning, with a host of expenses we never anticipated (increased technology needs, PPE, adapting services so that they are safer but more expensive)? And how can we possibly do it at a time when our income has decreased dramatically?
And then there is disease #3: my husband’s Myasenthia Gravis (MG). It’s left him bedridden and fully care-dependent. It is, quite frankly, exhausting to be fully-responsible for another adult’s bathing, feeding, medical care, hygiene…. life.
And then, of course, #4: his Lewy Body Dementia. As physically exhausting as it is to care for his MG, it is equally emotionally exhausting to deal with his dementia, especially the hallucinations that rob us both of sleep.
And the real challenge for me, is balancing the 4. It took me a long time to realize that I couldn’t divide my days, my time and my attention into quarters, each getting an equal piece of the pie. Thanks to the MG, there were many days where my work to-do list needed to be put on hold because he fell. Thanks to a potential staff exposure or a sick-with-COVID client, there were days COVID so consumed my attention, I never got around to bathing him. There are HIV-related reporting requirements and contract deliverables that have so commandeered my time, I was late getting him on the bedpan. And the subsequent clean-up meant I was late responding to co-workers’ questions. There are more days than I can count that the hallucinations so disrupted my sleep, I clocked into work late or clocked out early because I couldn’t stay awake any longer.
I try to be flexible (not my strong suit) and accept that my plans for every day will most certainly be upended. I try to be forgiving of myself (even less of my strong suit) when those upended plans mean I end the day with more things added to my to-do list than crossed off. But I’m finding it to be nearly impossible to manage the impact of four diseases while accomplishing everything that needs to be done for each.
I wake up each morning
wondering which of the four is going to usurp my day. And go to bed each night terrified the
morning will bring a fifth.
Comments
Post a Comment