Friday, July 23, 2004
I have an often indulged fantasy...
...that, odd as it seems, bucks me up when I'm feeling as though I am incapable of negotiating the variety of difficulties involved in taking care of my mother. When my confidence is at its lowest I imagine my mother and I alone on a tropical island (Guam, actually, since I was raised there). I imagine that whatever the difficulty causing me to feel inadequate, whether it be health related, emotionally related, business related, law related or resource related, I have no choice but to handle it without the help of others. I imagine myself surveying the territory with an acute eye and flexible brain, figuring out ways to use the non-human resources at my disposal in as yet undiscovered ways. I imagine that I have very little time to survey my surroundings and find a solution to an what appears to be a problem impossible to negotiate. I imagine myself successful in negotiating the problem.
This fantasy always works for me. It probably seems as though I should be fantasizing about innovative ways to solicit other people's involvement in caring for my mother but, believe me, I've learned over my years of caregiving that people not only demand but fiercely protect their rights to their own circumstances that put them outside the realm of helping solve the problems of primary caregivers. I've learned as well that those who are most likely to have the skills and knowledge necessary to lend a hand have their hands full with the demands placed on them by their own islands of primary caregiving.
In a curious way, my conversation with the commercial deliverer yesterday strengthened my confidence in my ability to handle the demands of caregiving. I realized the island I imagine is one of scores of islands floating in the seas between the continents of human community we create. I realized that my island is not one I created but one I inherited. I also realized that I not only have a right but a duty to refuse help that is so ill-timed, inadequate and uninformed about my and my mother's circumstances that it increases the possibility of both of us drowning in the sea between my island and the continent over the horizon.
Whether negotiating a crisis or the daily demands of our charges, we caregivers are not in the position, nor do we have the time and energy to peer toward the horizon looking for help. This is ultimately why it makes no sense to harass caregivers with the chant, "Caregiver, take care of yourself," or to threaten caregivers with the advice that if they don't take care of themselves they won't be able to take care of their charges. There are millions of us worldwide taking care of our children, our elderly and our infirm who fall well below the guidelines for "taking care of oneself" established by those who haven't been involved in intense caregiving and most often counsel us to surrender to the fact of inadequate substitute care of our charges in order to take care of ourselves.
Yesterday, without isolating myself from my mother, I learned that not only am I not the only one on an island, I am not the only one who has discovered that remaining on this island and learning to ignore the misdirected shouts from the continent to find my own fiber and weave my own tow line, despite the fact that while doing so I will be neglecting my mother in some way, is usually the best way for me to provide the best care for my mother. I also learned that the most approbative support I can find comes not from organized groups of caregivers huddling in the ill-disguised stress of having to leave their charges to the well advertised but poorly experienced whims of professional spotters, but from fellow caregivers whose islands occasionally bump into mine as we go about our duties and our lives.
Don't talk to me about taking care of myself in order to better take care of my mother. In the absence of your ability to offer appropriate, knowledgeable help that allows me stress free respite, at least grant that, despite what you think you perceive about what I am doing wrong, in fact, I am taking excellent care of my mother and myself. Trust me to know that I've surveyed and sampled the available resources, both human and non-human, and I know which are helpful to my mother and me and which are not, which are available to me on the island and which are unavailable to me on the continent. I know what it takes to do what I do and I know that taking your advice to "take care of myself" in the ways you deem appropriate is not only of no help, but is foolhardy, besides. Why do you suppose primary caregivers become so isolated in their tasks? Because we want to be? No, it's because, at this time, in societies where the value of primary caregiving is given little more than idealistic lip service, distinctly irritating greeting card sentiment and resources put so far out of our reach that it is wiser not to take our eyes off our charge to "take advantage" of these resources, we have to be isolated.
As a primary caregiver I don't live on Fantasy Island. I live on the shoals of reality. If you can't bring yourself, for whatever well considered reasons, to meet me in the shoals, at least grant that my experience here outweighs the value of your perceptions and advice from there.
This fantasy always works for me. It probably seems as though I should be fantasizing about innovative ways to solicit other people's involvement in caring for my mother but, believe me, I've learned over my years of caregiving that people not only demand but fiercely protect their rights to their own circumstances that put them outside the realm of helping solve the problems of primary caregivers. I've learned as well that those who are most likely to have the skills and knowledge necessary to lend a hand have their hands full with the demands placed on them by their own islands of primary caregiving.
In a curious way, my conversation with the commercial deliverer yesterday strengthened my confidence in my ability to handle the demands of caregiving. I realized the island I imagine is one of scores of islands floating in the seas between the continents of human community we create. I realized that my island is not one I created but one I inherited. I also realized that I not only have a right but a duty to refuse help that is so ill-timed, inadequate and uninformed about my and my mother's circumstances that it increases the possibility of both of us drowning in the sea between my island and the continent over the horizon.
Whether negotiating a crisis or the daily demands of our charges, we caregivers are not in the position, nor do we have the time and energy to peer toward the horizon looking for help. This is ultimately why it makes no sense to harass caregivers with the chant, "Caregiver, take care of yourself," or to threaten caregivers with the advice that if they don't take care of themselves they won't be able to take care of their charges. There are millions of us worldwide taking care of our children, our elderly and our infirm who fall well below the guidelines for "taking care of oneself" established by those who haven't been involved in intense caregiving and most often counsel us to surrender to the fact of inadequate substitute care of our charges in order to take care of ourselves.
Yesterday, without isolating myself from my mother, I learned that not only am I not the only one on an island, I am not the only one who has discovered that remaining on this island and learning to ignore the misdirected shouts from the continent to find my own fiber and weave my own tow line, despite the fact that while doing so I will be neglecting my mother in some way, is usually the best way for me to provide the best care for my mother. I also learned that the most approbative support I can find comes not from organized groups of caregivers huddling in the ill-disguised stress of having to leave their charges to the well advertised but poorly experienced whims of professional spotters, but from fellow caregivers whose islands occasionally bump into mine as we go about our duties and our lives.
Don't talk to me about taking care of myself in order to better take care of my mother. In the absence of your ability to offer appropriate, knowledgeable help that allows me stress free respite, at least grant that, despite what you think you perceive about what I am doing wrong, in fact, I am taking excellent care of my mother and myself. Trust me to know that I've surveyed and sampled the available resources, both human and non-human, and I know which are helpful to my mother and me and which are not, which are available to me on the island and which are unavailable to me on the continent. I know what it takes to do what I do and I know that taking your advice to "take care of myself" in the ways you deem appropriate is not only of no help, but is foolhardy, besides. Why do you suppose primary caregivers become so isolated in their tasks? Because we want to be? No, it's because, at this time, in societies where the value of primary caregiving is given little more than idealistic lip service, distinctly irritating greeting card sentiment and resources put so far out of our reach that it is wiser not to take our eyes off our charge to "take advantage" of these resources, we have to be isolated.
As a primary caregiver I don't live on Fantasy Island. I live on the shoals of reality. If you can't bring yourself, for whatever well considered reasons, to meet me in the shoals, at least grant that my experience here outweighs the value of your perceptions and advice from there.
