There are a lot of things people don't know about the world of caregiving unless they're directly exposed to it, either by being involved in it or by maintaining a close relationship with someone who is directly involved. For one thing, they don't know that if you're the primary caregiver, it's a 24/7 job, much like being the parent to a very young child. For another, you're mostly dealing with someone who is very cognizant of everything, including their limitations (and how the person processes it is dependent on their own temperament). You're frequently exposed to the inside of doctor's offices and are entirely too familiar with the libraries of information a doctor's office tends to require from its new patients. If you're caregiving for someone with longterm or chronic ailments, you're going to have to keep tabs on lengthy lists of surgical procedures, hospital stays, and prescriptions, and you might find yourself carrying around a mountainous stack of business cards from various medical offices. And if you live in an urban area with a large medical complex, you'll find that eventually, you know the interiors of virtually every single building located within that medical complex.
I never agreed to sign on for this. One never does. One never bargains for the fate that awaits the caregiver; once you find yourself in that role, you tend to be stuck in it unless you're a heartless, cruel individual without any human compassion. I got started via an indirect way -- by my father becoming terminally ill. I was a commuter student going to a local university and living at home, so I found myself becoming involved in his caregiving, but I had help in the guise of my mother (who was still rather healthy at the time) and a cousin who had enough free time back then to assist us with my dad. Though even with that outside help, my mother and I still found ourselves with a greater portion of our lives devoted to caregiving (I ended up having to postpone my education when my dad became more gravely ill) and we pretty much neglected ourselves as a result. This led to my mother developing serious medical conditions that, by the time she could get around to paying attention to her own health again, were exceptionally severe. Thus, by approximately two years after my father's passing, I found myself assigned to the role of sole parental caregiver, as I had no siblings to rely upon for assistance and my cousin was too busy with her own life to once again lend a helping hand.
Everything started out slowly and gradually for me -- it pretty much always does. At first the caregiver finds that they're assisting your "charge" with maybe one or two chronic or severe conditions. My mother's primary concern was with trying to regain control of her diabetes, something she'd neglected completely for three years. This included a brief hospital stay, which enabled me to learn a lot of hard lessons about how to manage things in those circumstances. With each additional specialist who came into Mom's medical picture came additional tasks and responsibilities that were heaped upon me. I can still recall the headache I developed when I was first assigned to do what I thought would be an impossible thing for me, what with my work schedule and all. My mind swam with the thought that I would probably never be able to accomplish what the doctor wanted me to do. But somehow I managed -- somehow one DOES manage. I don't know how exactly one does, but eventually one either figures out a way to get things done or sacrifices parts of one's own schedule in exchange for doing those things. Sometimes one has to do both in order to make everything happen, but in a way that doesn't ignore one's own health. The most vital component a caregiver can bring to the equation is GOOD HEALTH and one will do anything and everything in order to maintain at least the facade of it.
My medication list is considerable. I laugh at the thought of someone decades older than me who would be overwhelmed at the thought of having to take three or four little pills every day. I take approximately twenty medications a day, including nutritional supplements, in order for me to not have my health be a major issue for me. I can afford maybe one day of inactivity as a direct result of illness. I was recently forced to spend weeks trying to plan things out so that I could spend one week recuperating from a major operation that I'm still trying to recover from; it was just vitally important that I have that first week free and clear of any responsibilities or duties. I spent a few days in the hospital a few years back and I have no idea how things got done back at home except to suspect that one of Mom's closest friends was at her beck and call while I was there. I still had to drive myself to the hospital and relied on a taxi to drive me back home (the aforementioned cousin of mine drove my vehicle back home). Oh yeah -- that's another thing. I've been my household's sole driver for ten years and have had to drive myself to the ER, post-op appointments (while doubled over in pain), and I've even driven my mother around to run errands having only had a few hours' sleep the night before, weaving from lane to lane in a stupor as my mom, too weak and ill to notice, nodded in and out of semi-consciousness. Simply put, I cannot afford to be in ill health and will pop whatever pills and do whatever it takes to make sure I don't ever feel the need to have to spend a day in bed, because that one day in bed means one day when no one gets fed, nobody gets dressed or ready for the day, and nothing gets done. And there is not a single person I can contact in those emergency situations when I need time to rest and recuperate.
More later.
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