Mom & Me Five Archive

    I've just made the acquaintance of a man who "made the choice" (as though people who become avocational caregivers wake up one morning and say, "Hmmm...I think I'll take care of my ailing/old/terminal relatives...sounds stimulating and fun!") to become a full-time caregiver to two "family members" (he hasn't yet revealed the relationships or circumstances of those needing care). He is noticing that his former professional colleagues are completely undone by his decision; so much so that, rather than sympathize with his very hard "choice", they are castigating him for "taking the easy way out" [Out of what, I can't help but ask.] and treading a dangerously "co-dependent" path. He is, needless to say, finding it very difficult to even want to remain connected to what are fast becoming his former friends and supporters.
    Jesus Fucking Christ! Give us caregivers a break, people!
    Let me tell you this: Every caregiver, including me, has to continually come to terms with negotiating these criticisms, and, believe me, there's no help to speak of when we find negotiations necessary. How many times do I have to say this??? We are members of a species that is so ubiquitously social that it's a toss up whether our affinity for tool making or clan making tipped us into species success. And, yet, here we are, in our burgeoning prime, forming societies that extol the virtues of independence from members of our species, shivering at the thought that caregiving for others is anything other than incidental and worth little recognition or heightened survival status, condemning those of us who go against the thoughtless grain and find it necessary, for ourselves and our loved ones, to opt to give care to those who need it, usually for no pay, no support and no respect. Those of us who "choose" to give care, part time or full time, doesn't matter, do this in a society that pushes teamwork in its businesses and political parties yet refuses to recognize that adequate teamwork is virtually unavailable to its caregivers; celebrates the "public service" of politicians who are typically in league with private, corporate interests yet provides little more than "Take Care of Yourself, Have a Good Day" sentiment to those of us, the caregivers, who are truly involved in public service every minute of every day; lionizes those who "break out of the mold" unless those breaking out are breaking into caregiving, which is clearly a mold for which our society has no respect. How stupidly confused can we get???
    You think it's "easy" to be a caregiver? You think those of us who become companions and caregivers to those who need it are sneakily taking the "easy way out", wallowing in "co-dependence", "finding excuses to avoid responsibility"? Let me tell you how "easy", "dangerously co-dependent" and "irresponsible" caregiving is:

• When my mother was in a skilled nursing facility for two weeks (exactly 14 days) of intensive therapy after a low-sodium incident, I asked one of my sisters and her family, who lived a mere few miles from the facility, if they could spot me on alternate days so that I could spend every other day handling Mom's and my life 120 miles north, returning to the facility every other day to be Mom's companion and monitor her care. "You bet," was the response. Out of the seven days assigned to their family, they made three visits of a few hours each. Considering their work and school schedules, it was too hard for them to put in any more time. I was sympathetic. Of course it was. I could see this. I thanked them for the time they were able to donate. Then, a little over a year later, when I wrote about my every other day schedule in a post, I was castigated by a nurse, a professional caregiver, I might add, who took offense at the post because I had "chosen" to, somehow, keep our established life going on alternate days, instead of constantly monitoring my mother's facility stay.
• Once some years ago, for a five day stretch, two of my sisters volunteered to take care of Mom here at home while I boned up for a class I was planning on taking (a class which out of which I "chose" to drop, after attending twice, because of an unexpected Mom health crisis). The two of them found it so difficult just to get her out of bed in the morning that I regularly intervened in the help they were providing. Granted, the help they provided was invaluable and allowed me to prepare adequately for the class. It also turned out that they needed a lot more help helping me than any of us realized. I failed to realize this because much of what was incredibly hard for them was, by this time, routine for me.
• Many years ago, when I had just begun full time companionship and care for my mother, an attempt was launched by one of my sisters to get the extended family on the same page and help out. I compiled a list of jobs with which I could use help, all of which, at the time, would have been easy for others to handle long distance, although they would have also required a learning curve, one which applied to me, as well. Turns out, no one wanted to do the jobs with which I needed help. Everyone wanted to do jobs with which I not only needed no help, but which would have made my situation more difficult if I'd allowed those jobs to be farmed out.
• Lately I've chanced upon a lot of caregivers who are confronting the problem of Urinary Tract Infections in the elderly women for whom they care. UTI's, as explained to me by The Wondrous FNP, are just one of those things that appear with increasing frequency in the elderly, especially women, for a variety of reasons, all of which have to do with the effects of the normal aging process on the organs and muscles "down there". The medical establishment knows this, and also knows there isn't much that can be done surgically or exploratorily, at the moment. As the frequency of my mother's UTI's increased dramatically, I began to hound medical personnel about a solution. Turns out, the best solution is a daily maintenance dose of Macrodantin. It took a lot of assertive, and, finally, aggressive advocation to finally get those of the medical establishment involved in my mother's care to arrive at this solution, though. Everyone wanted to scope her. Everyone wanted to do surgery, a surgery, I might add, which is questionable at best and can be dangerous and lead to further intractable urinary difficulties, at worst. Finally, The Wondrous FNP told me, well, yes, doctors make more money from treating each UTI as a separate event, insisting on exploring the possible cause of each one and trying to get the patient (or caregiver) to accept surgery. Doctors make a one time, office visit fee from prescribing Macrodantin. I've recently also learned that, if I hadn't been here to be an assertive medical advocate for my mother, she would have been treated to possibly years of inconvenient and treacherous "exploratory" hospital stays and procedures; she might very well have experienced frightening episodes, involving intolerable pain, spasms and mouth foaming, while waiting for someone to notice her UTI episodes and addressing each separately with occasional antibiotics; her life might have been shortened by inattention and inappropriate treatment leading to other more virulent opportunistic infections; at any rate her life certainly would have become a very unpleasant day to day trial, considering the frequency of her infections (which is normal) and the inappropriate and occasional treatment she would have been receiving at the hands of nursing home staff.

    Is it any wonder why I have become so critical about the "Take Care of Yourself" and "Avoid Co-Dependence" movements, hailed by most of society and completely irrational for caregivers of any stripe, at any time? We don't need any more independence in this society, believe me. We're ripping apart our families and abandoning our elders to substandard, often dangerous care by refusing to question our presence on this holier than thou platform of personal "independence" and "responsibility".
    You think I'm wrong about the lack of support for caregivers to the elderly and infirm? Consider this: The big movement in elder care, right now, is to help adult relatives ensure that their elderly are encouraged to live as independently as possible as long as possible. How wise and advantageous do you think this is to members of a species that is so socially attuned that, according to this recent story culled from an author who writes primarily for the home buyers market, large homes undermine our species' felicitous humanity? In order to belabor the point, consider this as well: How "wise" is it to leave people who are beginning to dement to their own resources most of the time? Once more, with feeling, how "wise" is it to take pride in managing an elderly person's life so that you feel good about not being there for them?
    Easy? You think this is easy? You think I'm avoiding the "real world"? You think I've opted for throwing my mother and myself into a cycle of deleterious co-dependence? You think I'm somehow leading myself and my mother down an inhuman path?
    You need to think again. Hard. Being a companion and caregiver to someone who is Ancient or Infirm is so difficult in a society that ignores and scolds its caregivers, that, believe me, most people "choose" not to do this. These are the people who manage to get the most support for any guilt they might feel at refusing the "choice"; they are, after all, "taking care of themselves" appropriately; "wisely" eschewing the possibility of ominous "co-dependence"; valorously supporting this society's love of independence to the exclusion of our equally natural need for association with members of our species; not to mention supporting a professional care industry that hugely appreciates their dollars to the exclusion of appropriately appreciating their relatives.
    Easy, my ass. If you think it's so easy, so carefree, why the hell aren't you doing it???