yolland
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- Joined
- Aug 27, 2004
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I've been thinking for awhile about trying to get a discussion going in here on this topic, but haven't been quite sure how to go about it. Maybe since things are so quiet around here right now, and most of us are finding we have little to offer beyond 'Ulp...ohhh shit' concerning the economy which is obviously the leading political issue of the moment, this would be as good a time as any to give it a go. I'm afraid I don't have any provocative news story on the topic to kick off a discussion with though, so I was hoping our collective personal experiences with the topic would be enough to provide that. I'm guessing that many of us have at least had the experience of watching and perhaps helping our parents care for their own aging parents (and/or perhaps their siblings, aunts or uncles); that several of us have been or currently are at this same stage with our own parents; and that a couple of us have also had cause to worry now and then about what's going to happen to us as we get older, physically and maybe mentally weaker, and perhaps without much in the way of potential family support to tap into.
-- When you think in broad social and political terms about 'eldercare' as a system, what are some of the problems that come to mind? What do you feel your country and society do well, and do poorly, concerning the needs of elderly people and their caregivers? Are there forms of institutional care in too short supply, major changes you feel need to happen with existing institutional care, or needed reforms in social services networks providing support to elderly people living at home or with relatives? Are there problems with our general social attitudes about caring for the elderly in ways that go beyond what public and private services can realistically supply?
-- What have you learned from your own personal experiences with the topic? What were or are the most infuriating, most frightening, most draining--or most rewarding--aspects of your or your family's situation? Did or do you feel adequately supported in your efforts, both by family and friends and by relevant professionals? What do you really, really wish you'd known before you and your family got into this? How has all this affected your perspectives on caregiving, families, home and institutional care, and just in general the meaning and significance of aging?
I grew up without grandparents, aunts or uncles and my father died young, so this topic has only recently become of strong concern to me, when I became my mother's guardian after she was permanently brain-injured in a freak accident last year (she's in her early 70s and still otherwise in excellent health, so may very well continue to live in this state for many years to come). I have 4 siblings, and we mutually decided after some debate and discussion that it'd work best for me to take legal responsibility. Originally we'd hoped to care for her at home, but after a few months of initially necessary institutional care and several setbacks, it became clear that she simply required a higher level of care than we could adequately provide at home, particularly since we already have 3 young children. Given this backdrop, I'm overall 'pleased' with the care the private nursing home near us which she now lives in provides--most of the employees, despite their deplorably low wages, are kind, considerate and accountable folks; the therapy provided there (not something insurance would cover if she lived with us) is quite good; the food, while not particularly appealing, is nutritionally sound; they've been very reliable about calling me right away on the few occasions where medical problems cropped up; after many months of stressful arguing back and forth, I think we're finally approaching a psychiatric-medication regimen for her that keeps both the staff (she's now seldom 'combative'--most dreaded word in institutional eldercare) and me (she's no longer doped into zombie-ness, and shows slight but noticeable improvements in conversational skills) reasonably happy; and there certainly aren't any horror stories of oozing bedsores, filthy clothing and environs, or mysterious bruises to speak of. But grievances, yes, I've got those too...nursing home care is astronomically expensive (thank God we got her settled into a place before her own financial resources were exhausted); they simply don't have enough staff to provide her or any other 'cognitively challenged' patients with more than occasional social stimulation, so she spends far too much time sitting around fidgeting or staring blankly at TV programs she can't really comprehend; there are a few aides who slack off on ensuring she brushes her teeth and hair because they're too brusque and impatient to gain her cooperation; and I can tell they don't do a good job of discussing individual patients' unique conditions and needs with the aides, because I'm still often encountering situations where an aide will offhandedly refer to my mother's "Alzheimer's" and are clearly surprised at the 'news' when I wearily fire back, "She does not have Alzheimer's! She's a brain injury patient, she's much more alert than most Alzheimer's patients, she just has trouble comprehending what she sees and hears and responding appropriately..."
As for all the other eldercare hoops we've had to jump through along the way...man, were we naive at first about how to weigh and execute the needed legal decisions; the fact that you'll need a Rolodex-full of doctors' names to coordinate all the various healthcare aspects, because it's all so damn compartmentalized and no one does the coordinating for you; all the fights we'd need to get into with insurers over psychiatric medications and therapy provision; how anal-retentive nursing homes are about accepting (and keeping) patients who show even the slightest degree of 'combativeness'; and the occasional tensions with siblings who are thousands of miles removed from the situation but think they know best when it comes to, for instance, the medication regimen, and call to bellow at you about it when you're exhausted and emotionally stretched to the limit and just need sympathy and support (though mostly, we've collectively been very lucky in this regard; in fact my younger brother's going to move his family out here just for next year and serve as short-term guardian, so that we can go abroad). In theory, a good social worker can be an invaluable guide through this labyrinth; in practice, the few you initially come into contact with (like at the hospital when you're still in the feverish early days of dread and bewilderment) are often not very proactive, so you wind up figuring out much of this stuff the hard way, through trial and error and chance encounters with other patients' relatives who share their tips with you.
In the bigger picture, I think that as a society we haven't really come to terms yet with the reality that we're heading into a period where there are far more dependent elderly people than ever before, while at the same time other social circumstances have changed tremendously over the last several decades in ways that make it increasingly difficult for relatives to absorb the care burden themselves (smaller families, with fewer kids potentially available to help; geographically dispersed families; fewer homemakers, which in many situations can make adequate homecare impossible; less close-knit communities, meaning fewer friends, neighbors, fellow church members etc. willing to help out; better medical care, which paradoxically means more and more people living longer and longer in increasingly compromised conditions; and--while I suspect this one is often too readily pounced upon, as if the aforementioned were irrelevant--yes, probably also a declining emphasis within our culture on familial responsibility: that ready-or-not, want-it-or-not automatic sense of obligation to repay your parents for all the sacrifices and responsibility they once undertook for you to the best of your ability, to treat them as you would want to be treated in their situation). I'd be lying at this point if I described the experience of being my mother's guardian thus far (and I realize many families are shouldering such responsibilities far more intimately, at home) as "rewarding"; I think above all else because the parent I knew and loved for 37 years in truth effectively died last year, I don't have my siblings right here to share that reality with, and I have to plan for the future under the assumption that she might live on another couple decades like this for all I know. But at least it does mean something to me that she's not living isolated from all five of us, marooned someplace where there's never anyone around to trigger some recollection of who she is, who she knows, and who cares about her in a social sense. For that much I'm grateful, because I doubt I could bear that thought for long.
-- When you think in broad social and political terms about 'eldercare' as a system, what are some of the problems that come to mind? What do you feel your country and society do well, and do poorly, concerning the needs of elderly people and their caregivers? Are there forms of institutional care in too short supply, major changes you feel need to happen with existing institutional care, or needed reforms in social services networks providing support to elderly people living at home or with relatives? Are there problems with our general social attitudes about caring for the elderly in ways that go beyond what public and private services can realistically supply?
-- What have you learned from your own personal experiences with the topic? What were or are the most infuriating, most frightening, most draining--or most rewarding--aspects of your or your family's situation? Did or do you feel adequately supported in your efforts, both by family and friends and by relevant professionals? What do you really, really wish you'd known before you and your family got into this? How has all this affected your perspectives on caregiving, families, home and institutional care, and just in general the meaning and significance of aging?
I grew up without grandparents, aunts or uncles and my father died young, so this topic has only recently become of strong concern to me, when I became my mother's guardian after she was permanently brain-injured in a freak accident last year (she's in her early 70s and still otherwise in excellent health, so may very well continue to live in this state for many years to come). I have 4 siblings, and we mutually decided after some debate and discussion that it'd work best for me to take legal responsibility. Originally we'd hoped to care for her at home, but after a few months of initially necessary institutional care and several setbacks, it became clear that she simply required a higher level of care than we could adequately provide at home, particularly since we already have 3 young children. Given this backdrop, I'm overall 'pleased' with the care the private nursing home near us which she now lives in provides--most of the employees, despite their deplorably low wages, are kind, considerate and accountable folks; the therapy provided there (not something insurance would cover if she lived with us) is quite good; the food, while not particularly appealing, is nutritionally sound; they've been very reliable about calling me right away on the few occasions where medical problems cropped up; after many months of stressful arguing back and forth, I think we're finally approaching a psychiatric-medication regimen for her that keeps both the staff (she's now seldom 'combative'--most dreaded word in institutional eldercare) and me (she's no longer doped into zombie-ness, and shows slight but noticeable improvements in conversational skills) reasonably happy; and there certainly aren't any horror stories of oozing bedsores, filthy clothing and environs, or mysterious bruises to speak of. But grievances, yes, I've got those too...nursing home care is astronomically expensive (thank God we got her settled into a place before her own financial resources were exhausted); they simply don't have enough staff to provide her or any other 'cognitively challenged' patients with more than occasional social stimulation, so she spends far too much time sitting around fidgeting or staring blankly at TV programs she can't really comprehend; there are a few aides who slack off on ensuring she brushes her teeth and hair because they're too brusque and impatient to gain her cooperation; and I can tell they don't do a good job of discussing individual patients' unique conditions and needs with the aides, because I'm still often encountering situations where an aide will offhandedly refer to my mother's "Alzheimer's" and are clearly surprised at the 'news' when I wearily fire back, "She does not have Alzheimer's! She's a brain injury patient, she's much more alert than most Alzheimer's patients, she just has trouble comprehending what she sees and hears and responding appropriately..."
As for all the other eldercare hoops we've had to jump through along the way...man, were we naive at first about how to weigh and execute the needed legal decisions; the fact that you'll need a Rolodex-full of doctors' names to coordinate all the various healthcare aspects, because it's all so damn compartmentalized and no one does the coordinating for you; all the fights we'd need to get into with insurers over psychiatric medications and therapy provision; how anal-retentive nursing homes are about accepting (and keeping) patients who show even the slightest degree of 'combativeness'; and the occasional tensions with siblings who are thousands of miles removed from the situation but think they know best when it comes to, for instance, the medication regimen, and call to bellow at you about it when you're exhausted and emotionally stretched to the limit and just need sympathy and support (though mostly, we've collectively been very lucky in this regard; in fact my younger brother's going to move his family out here just for next year and serve as short-term guardian, so that we can go abroad). In theory, a good social worker can be an invaluable guide through this labyrinth; in practice, the few you initially come into contact with (like at the hospital when you're still in the feverish early days of dread and bewilderment) are often not very proactive, so you wind up figuring out much of this stuff the hard way, through trial and error and chance encounters with other patients' relatives who share their tips with you.
In the bigger picture, I think that as a society we haven't really come to terms yet with the reality that we're heading into a period where there are far more dependent elderly people than ever before, while at the same time other social circumstances have changed tremendously over the last several decades in ways that make it increasingly difficult for relatives to absorb the care burden themselves (smaller families, with fewer kids potentially available to help; geographically dispersed families; fewer homemakers, which in many situations can make adequate homecare impossible; less close-knit communities, meaning fewer friends, neighbors, fellow church members etc. willing to help out; better medical care, which paradoxically means more and more people living longer and longer in increasingly compromised conditions; and--while I suspect this one is often too readily pounced upon, as if the aforementioned were irrelevant--yes, probably also a declining emphasis within our culture on familial responsibility: that ready-or-not, want-it-or-not automatic sense of obligation to repay your parents for all the sacrifices and responsibility they once undertook for you to the best of your ability, to treat them as you would want to be treated in their situation). I'd be lying at this point if I described the experience of being my mother's guardian thus far (and I realize many families are shouldering such responsibilities far more intimately, at home) as "rewarding"; I think above all else because the parent I knew and loved for 37 years in truth effectively died last year, I don't have my siblings right here to share that reality with, and I have to plan for the future under the assumption that she might live on another couple decades like this for all I know. But at least it does mean something to me that she's not living isolated from all five of us, marooned someplace where there's never anyone around to trigger some recollection of who she is, who she knows, and who cares about her in a social sense. For that much I'm grateful, because I doubt I could bear that thought for long.
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