This Isn't Your Mother's Caregiving
    I overheard a conversation at Walmart about a week ago that's been haunting me. The chattier of the two participants was the married-with-children sister of a woman who, according to the conversation, is taking care of the two siblings' mother. The conversation involved the listener commenting to Ms. Chatty that, despite not knowing her, she admired Ms. Chatty's sister for "taking on" the care of their shared mother. Ms. Chatty responded, "I don't know if she deserves to be admired. She's not doing anything more than our mother ever did for us when she was raising us."
    My initial reactions:

• Hmmmm. I'll bet the sister is non-married-without-children and the other sister figures taking care of their Mom is her errant sister's comeuppance for not doing life the way one is supposed to do it.
• I'll bet the married-with-children (two of which were with her, a daughter that appeared to be a young teenager and a son who looked to be somewhere between 9 and 11) sister is also a "My life is so full I can't possibly help but thank you for doing this for us" sister.
• I'll bet the married-with-children sister resents the comments her taking-care-of-Mom sister receives involving appellations such as "admiration" because, well, who the hell ever "admires" parents for being parents and, from her point of view, what's the difference?!?

    Good question: What's the difference? I've previously written here about elder care being "different" than child care and that I believe a caregiver to An Ancient One is better off not approaching their charge as though being old is nothing more than childhood in reverse. Still, there are parallels: Diapers, for instance; dependency; sink holes in the thinking process; an inability to judge the risks in a situation; the need for focused observation of the charge and intervention before the charge acts; helping one's charge walk, eat, reminding them to drink and honoring the charge's need to have someone oversee, as inconspicuously as possible, every move they make. Sounds like parenting. The catch is, these parallels are separated by a universe of space and, in the tradition of parallels, the lines don't intersect.
    If you have doubts, consider the following:

• The normal child is born with lusty senses of hunger and thirst. Often, the normal elder's body is dispensing with these senses. Although it's not uncommon for a child to become so caught up in activities of the moment that they need to be reminded, sometimes vigorously, to eat and drink, the senses of nourishment of an Ancient One who needs care are a different phenomenon. I consider myself lucky that my mother's appetite remains hearty. Her sense of thirst, though, rarely exhibits itself and I cannot rely on it to keep her hydrated. The longer she lives the less likely she is to feel thirst. I have to be thirsty for her, sometimes in the face of her insistence that she's not thirsty. A parent of a normal child does not have to be hungry or thirsty for the child, not even for an infant. Infants will tell you, vociferously, when they are hungry or thirsty.
• The normal child, when in the diaper stage, knows when she's in a soiled diaper. She may not care but she knows. The normal Ancient One often has no idea she has soiled a pair of paper underwear. My schedule of having my mother head for the bathroom at least every two hours when she's up isn't a type of toilet training. She is not ever, again, going to sense when she's leaked or soiled herself. She's pretty good at sensing when she has to have a bowel movement; much better than when she was ill. Still, we had an episode a few weeks ago in which she had diarrhea and didn't realize it. As well, the normal child has an interest in learning to eliminate "like big people". The normal Ancient One is a "big person". Once an Ancient One begins experiencing urinary and bowel incontinence that can't or shouldn't be assuaged with medication or an operation, the caregiver can be sure that these conditions are not going to improve.
• Negotiating the sink holes in a child's thought processes is not the same as negotiating the sink holes in an Ancient One's thought processes. The normal child takes both conscious and subconscious instruction from a parent's or older child's direction. When Ancient Ones begin thinking from the holes in their thoughts they are past the stage where they are going to improve their intellectual acuity. They are also often past the stage of immediate correction. Thus, the caregiver often operates off stage on behalf of the Ancient One's thinking so that she avoids repeated explanations of decisions and actions taken on behalf of the Ancient One's life business.
• With a normal child, negotiating the process of learning how to walk involves the ability to allow the child to fall, rise and try again. The idea, when attending to a walking Ancient One, is to make sure the Ancient One doesn't fall. Falling, when one is a child, is safe and instructive. When one is an Ancient One, falling is treacherous and definitely to be avoided.
• Overall, caring for a normal child involves less energy investment as time passes. Yes, concerns change and, yes, seeing a child through her teenage years can be more stressful than seeing that child through the infant through pre-teen years. The goal, though, is to produce an autonomous adult and this almost always happens, despite a glitch here and there. Caring for an Ancient One involves an increase in energy and stress right up to the end. The idea is to accept the decreasing autonomy of the Ancient One in question and pick up the slack as time passes.
• When "mistakes" are made in parenting, the parent typically has time, the child's adult life, to come to terms with what they perceive (or their child perceives) as their mistakes, acknowledge them and, if they're lucky and halfway decent people, this time allows for a chance to atone, partially or fully. When one makes a mistake in caregiving with An Ancient (or Infirm) One, there is no grace period, no possibility of making up for a mistake during a later period in the care recipient's life.
• The most heart rending difference of all is this: Once humans become adults, those adults, whether or not they become parents, are capable of recognizing, in sometimes excrutiating detail, exactly what their parents did for them. If their parents were even halfway decent, adult children are, at some point, overcome with gratitude for their parents' efforts and accomplishments, identify with them and express their insight and gratitude.
      More often than not, considering that 50% of all the elderly over 85 suffer severe cognitive disability (statistic taken from Sick to Death), few who are in the hands of intense needs caregivers (as, cognitive dysfunction is often one of the conditions that qualifies An Ancient One for intense needs care) are capable of understanding, even partially, the comprehensive care they are receiving. In my mother's case, she doesn't remember that she isn't taking and can't take care of herself. These care recipients certainly aren't going to graduate to being an intense needs caregiver who will, one day, acknowledge the care he or she received, since death is the inevitable end of their need for care. Even if the Ancient One, at some time in his or her life, rendered intense needs care to someone else, they may have poor to no memory of this episode. Thus, the intense needs caregiver will likely never be recognized, nor thanked, by their care recipient; may even be resented for identifying his or herself as The Ancient One's caregiver and there is no chance of guaranteed reciprocal recognition as there is between adult children and their parents.

    Why haven't we, in this society, figured this out? Why do we continue to insist that caring for those who are in their last years is "nothing more" than caring for those in their first years?
    Our society, as a whole, is so anti-caregiving that it is extraordinary for any caregiver, whether she be a parent or a caregiver to a parent, to manage to give care without feeling some kind of resentment at some time. Blessed are those among us who can manipulate ourselves gracefully out of this resentment. Believe me, it's not easy and resentment sneaks up on caregivers at the most unlikely of times in the most unlikely of situations. This resentment displays itself in a myriad of ways. We speak about some of them but others remain occult. Parents resent the overwhelming task of parenting outside of community so much that it is not uncommon for them to resent those who somehow manage to escape parenting. Thus, the "wisdom" of the criticism of young, unwed mothers-to-be that one shouldn't opt for an "easy way out...you got yourself into this fix, you're going to have to get yourself out of it. Don't expect help from those who did it 'the right way' and, by the way, it's also a sin to opt for any easy way out: Abortion or adoption. If you do you'll be haunted for the rest of your life, or, at least, you'd better be. If you're not, there's something fundamentally wrong with you." Thus, also, the "wisdom" that those adults who don't get married and have kids are the "natural" choices for taking care of elderly parents because, you know, they haven't done their stint, it's about time they're made to step up to the plate. Both of these attitudes display a deep resentment of the tasks of caregiving.
    When I was a child, upon acutely observing my parents, primarily my mother, as caregivers, I made the decision never to get married and never to have kids. How in the world, I remember wondering, does anyone ever become a person if she spends most of her adult life making and raising other people? The truth is, after having been an intense caregiver of my mother for over a decade, I now get it. One continues to become a person throughout one's life. Those times when one is giving care are as important to personal development as those times when one is caring for oneself, negotiating the mysteries of "life out there", indulging in a desire to explore other types of existence and figuring out how to handle one's own aging. You couldn't have told me this and expected me to believe it when I was a child, though. Somehow, despite the fact that my mother worked outside the home just as did my father, despite the fact that everyone in our family, including the primary caregiver, my mother, was opinionated and interested in "the outside world", despite the fact that both my parents wanted to have children, loved their family life and never expressed any kind of resentment toward the inequality of caregiving, somehow I got the message, just from existing in this society, that I would be less than who I wanted and expected to be if I married and became a mother.
    I can't say that this feeling runs rampant among young women. Most marry, most have kids and most become primary caregivers to those kids. Most want to do this at some point in their life. Most, in fact, treasure the opportunity to do this and mourn if they don't do it. All three of my sisters decided to create their own families. None of them regrets it. Few young women, or men, for that matter are vested with the overwhelming twin peculiarities of my character that were evident the moment I emerged from the womb: My interest in isolation and my penchant for entertaining myself and finding myself the ultimate entertainment. Considering this, you'd think that no one who wanted to give care, have children, etc., would ever resent the activity. At some point, though, almost everyone does, not in small part because caregiving is not something we believe is inherent in cross-gender human behavior. It's something we believe only and primarily women should do and it is, as well, an invisible behavior that is worth almost nothing in regards to viewing it accurately and compensating its delivery.
    We are not a society who encourages both parents to become involved in parenting. We are not a society who encourages extended family to be involved in the lives of all family members. We are not a society who respects and adequately remunerates professional caregivers. We are not a society who believes in the village concept of caregiving. We are a society who extolls the virtues of the individual to the point of communicating that you're much better off if you can do everything yourself and can manage everything that comes your way on your own. We are much quicker to point out the pitfalls of depending on others than we are to acknowledge the pitfalls of going it alone. We are so focused on The Autonomous Individual that we are, most of us, afraid to get old because, well, we know that if we get ourselves into a fix the chances are good that help will be late in arriving, if at all, and inadequate to our needs. It's no wonder, then, that we think of caregiving for elders, or the infirm, as little more than parenting in reverse.
    A few months ago I chanced across a website created by a fellow caregiver. She had taken intense care of an Ancient One through death. Her site was well organized, full of inspirational snippets, advice, helpful links and some of her own story. I didn't think to bookmark it. I wish I had, as I would link her to the following: She advised all caregivers to think of themselves as "heroes" because, she said, that's what we truly are. I'm often slow on the uptake because when I confront such statements I have to think. This is what I thought on being pronounced a "hero": Heroes are people who suddenly find themselves in extraordinary and unexpected circumstances and forget about themselves in order to attempt to save someone else's life. Caregiving for the Ancient and infirm isn't an extraordinary circumstance, although because our society refuses to acknowledge the need for it ahead of time, it seems like one. It isn't exactly normal in the way parenthood is normal but, using the fairly recent statistic of 54,000,000 caregivers to the Ancient and infirm in the U.S., a little over 18% of us are doing this avocationally. This does not include our subcultures in which everyone within a particular family lends a hand in taking care of the Ancient and infirm. These situations drop off the charts. As our population ages many more will join our ranks. Although the alleviation of suffering is a primary activity of caregivers, rarely does a caregiver save anyone's life; more often what we do is make someone's final years, months, weeks, days and hours more comfortable and peaceful. Although emergencies crop up, the term "emergency", when applied to the ailing and dying, has a different definition. Response to elder care "emergencies" is often not the same as it is when the emergent person is younger and healthier. Sometimes, situations that would be considered emergent in the younger and healthier are not defined as emergencies in the old, ailing and terminal. The more experienced one becomes at caregiving for the Ancient and infirm, too, the less likely one is to respond to any situation as though it is an emergency. The reason, I think, why anyone would suggest that all caregivers are "heroes" is because she, as a caregiver, experienced the normal isolation and lack of support as onerous, which made her job much harder than she knows it would have been otherwise and, as do all caregivers for the Ancient and infirm in this country who are not a part of a subculture that embraces its old and infirm, she understands that people step up to the caregiving plate in this country against tremendous odds.
    There would be no reason to romanticize the activity of caregiving as a heroic gesture in any of its manifestations if we, as a society, were so care conscious of each other that caregiving was something everyone did, the way everyone, say, chooses a mate, figures out a way to survive in this economic system and learns how to operate peaceably in society. This would be the ideal situation. This ideal is so far from our society that glints of it cannot even be glimpsed as rising from below the horizon of our society.
    We simply don't pay attention to our caregivers. Thus, we consider caregiving a type of "dues"; if someone of whom caregiving is expected (usually because of their gender) manages to escape the peculiarly isolated caregiving with which this society saddles its caregivers we secretly hope the task will catch up with them. When it does we indulge in a sophisticated type of "she finally got hers" gloating. We expect only other entrenched caregivers to help caregivers; we encourage this, in fact, and form support groups for caregivers composed only of caregivers. When all else fails we provide a mean, low paid, low status substitution corps of professional caregivers and try to make it sound as though avocational caregivers are irresponsible if they don't rely on them "when necessary". Finally, we can't distinguish one type of caregiving from another. We confuse elder care with parenting and romanticize it as such.
    In response to the teaser I left in a recent post about the conversation that triggered this essay, a regular, thoughtful reader e'd me saying that, after considering her experiences as final caregiver to both of her parents she felt that parenting cannot be compared with caring for one's parents. I agree. Yes, from a distance the two look oddly similar in reverse. Yes, some of the surface tasks are incredibly similar, as they are bound to be when physical, intellectual, spiritual and emotional dependence are involved. But parents of normal children expect less dependence as time passes. They expect their children to become more like themselves rather than less so. They don't expect to outlive their charges. Experience tells them they are right to expect all these attributes to appear and their expectations will probably be satisfied. Caregivers to the elderly, infirm and terminal must learn to expect more dependence as time passes. They must expect the life to which they tend to become more divergent from their own. They must expect to not only outlive their charge but to become an intermediary to their charge's death. Children do not come out of death into life. The Ancient and infirm do, however, travel from life into death. The two journeys are not even in opposite directions. They are, as my reader stated, not at all comparable.
    The only correlation between parenthood and caregiving to an Ancient One occurs when a child takes care of a parent. The correlation isn't that the child is repeating for the Ancient One what the Ancient One did when parenting the child, even though the tasks appear to be similar. This was brought home to me by an e I received yesterday from a distant acquaintance who is not a reader of my postings about taking care of my mother. I don't think she's even aware that I journalize my experiences with my mother, although she knows I take care of my mother. She related to me that after learning about what I am doing for my mother she often wondered if she would be able to be as "patient and devoted" as she perceived I am in this circumstance [she obviously wasn't familiar with my spectacular Thanksgiving Failure of Patience and Devotion that occurred less than a month ago]. "Unfortunately," she continued, in a sort of 'ask and ye shall receive' fashion, the opportunity to discover her fortitude arrived when her mother developed cancer and she became her mother's caregiver, having to travel a long distance to do so while maintaining her own thriving business. She told me that she discovered the same reserves she imagined I possess (which I also imagine I possess despite the many times I've stumbled in the last 11 years of being my mother's final companion). She finished her story by mentioning that, "All the things that she had done for me as an infant and child, I was doing for her...Life really does come full circle." Although the points to which she refers in this "full circle" are side-by-side, they are not the same points and her comment underlines this fact. She did not say, "I parented my parent." She, rather, pointed out that as her mother had taken care of her when she was mostly dependent, she also took care of her mother during a similar stage. Here is the connection between parenting and caring for the elderly and infirm: It can be emotionally and spiritually gratifying to care for someone who once cared for you, not as payback, not as a form of dues, but because the best of caring takes place within a circle of loved ones taking care of loved ones. When one parents, if one does it well, one's arms separate to accommodate the child's linear progression into the world. When one takes care of one's parents, one's arms close around the loved one in an embrace that eases the loved one's digression out of the world. Similar? Only on the surface. Opposite? Not really. They exist on a spiral continuum that includes caring for extended relatives; friends; superiors, colleagues and underlings in work and school; lovers; mates; strangers who pique our interest, sympathy and compassion. Together, though, these two beginning and ending types of caregiving completely describe the dynamism of what we imagine to be the circle of life, as they include all the tasks involved in all types of caregiving and they are the primary ways we learn to give care to everyone with whom we form attachments.
    Blessed are those who receive loving care as they enter this world. Blessed are those who receive loving care as they leave this world. Blessed are all who, having experienced loving care, are privileged to be able to lavish loving care on those who once cared for them. If we, as a society, have any smarts about us, we will pay attention to the heavy lessons to which we are about to be treated by the aging of our population and realize that mutual caring is not the necessary dirty work that makes life possible and which should be consigned to the invisible, but the fundamental activity that gives life meaning and is most felicitous when consciously shared by everyone. When we understand this we will finally be in a position to honor the life of every individual and no individual will experience the devastation of unwanted isolation and lack of needed care at any period in her or his life.
- posted by Gail Rae @ 09:20   email...this post