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talkpoliticsThis might come across as a brutal, stupid mess, but personal events of the last few days have gotten my gears turning in a few ways. It was posed to me some time ago that I don't share much about who I am or what I do, and while much of that is because I don't think emotion really belongs in these sorts of arguments, and other parts due to some stalkerish tendencies that many in the political communities I engage in have chosen to pursue that I've had to clean up, negotiating with terrorists and such is what it is, and I'm still sharing this story because I think it's some good context and raises some interesting topics that we've touched upon over the last few months. Regardless of how I feel about families of other members of these communities to be off-limits, the story of mine is relevant to where I'm coming from, but if you're not interested, feel free to scroll on guilt-free.
Some background: my wife and I have been caregivers for my Alzheimer's-ravaged mother for two years this weekend. We moved back home, took on a bunch of the responsibilities to take the load off my father, and so on. We placed her in a short term psychiatric care ward this week based on her condition. Long and short, though, Alzheimer's is a terrible disease and having babies around doesn't really make it easier, even when one is able to be a full-time caregiver.
Needless to say, society does not appreciate the sacrifices of caregivers at all. For as much as we preach about having to be all in it together and such, the experience of caregiving is a very lonely one, and one that few really get to understand. It's one thing to have an old person in your house who you need to cook for and clean while they're still generally with it. It's another to have that person actively hate you for it when it's your own parent, even though the part of that person who was actually your parent disappeared ages before. Laws like this in China are devastating because they misunderstand that balance between caregiver and caregiving, and almost encourage bad ideas and actions toward those who need the most help. We're lucky to be involved in a program that is designed more to intervene in regards to caregiver burnout than anything else - something none of the health reforms, which seem singularly focused on extending life, seem to understand.
In a sense, I have no choice but to do this for my mother, because that's how she raised me. She would be angry if she knew I was doing so, but you can't teach compassion and service to your children and then expect them to abandon it when you yourself need it. My sacrifice is no different than the one my grandmother made for my grandfather, that countless others who might read this might have made, and that a countless number of people that we'll never know make daily. My experience is different only in the sense that I'm very politically active and generally open about a process that's too often kept in the shadows for no good reason. The stigma of mental illness and such.
Anyway, some really strange thoughts in context to the current debates in general:
1) A lot has been said about mental health, especially in the context of the gun debate. Among the people who were in the emergency area with my mother was a guy who had assaulted a family member. It's interesting to consider, especially since, when we think about "the mentally ill should not have guns," pretty much everyone in the debate is in agreement that the folks like my mother, like Assault Guy, shouldn't have weapons. We already have legal prescriptions in place for them, however - things like medical proxies, powers of attorney, and such. You're not going to get everyone, especially when you have the mentally ill who are also alone or homeless or lack the support system. No system will. But it has really opened my eyes a bit more to the problems with such proposals. For example, there are many reasons to institutionalize someone for a short time - should that invalidate their rights entirely? Any number of minor mental health issues have violence as a symptom/extreme result - should we remove the rights of all depressed individuals as they may get violent? I understood that the proposal about gun rights and mental health were simple to start, but I didn't realize how much so until this week.
2) My mother's situation insurance-wise is complicated for a few reasons. Some of the complexities is because she worked in local government her whole life, but there's a contrast to be made with her insurance condition and how the governmental incentives regarding insurance works. My mother was diagnosed at age 52 - exceptionally young for Alzheimer's. Shortly after this, my wife and I looked into long-term insurance. Needless to say, it's not even available at a young age, and rarely is it available (in Massachusetts a year ago, at least) before you're 50. As a public employee, there's no Medicare available. Standard insurance doesn't cover long-term care. Quite the gap. Why? Medicare! Since Medicare exists, the market for older insurance has dried up. But Medicare, like many European socialized models and like the Canadian universal model, does not cover long-term care. Medicaid fills in that gap for many, but since it's need-based, it often kicks in after you've liquidated the assets of the infirm, assuming they last that long.
I'm a proponent of removing the employer/insurance relationship because of what it does to costs and the incentives it creates. Medicare has created a situation where far too many people are lost in the shuffle thanks to the single payer health care, leaving the costs to other people and removing a valuable market both for the insurer and those who need to be insured. Why won't governments worldwide fund it? It's very expensive (and arguably a good reason as to why they're able to keep the costs so low, which I hadn't considered until this week). Why would private insurance handle it better? It's very unlikely you'd need it, and very likely you'd want it. I don't want to do to my kid what we're going through, that's for sure.
3) The liability craziness is really out of hand. Part of the program my mother is part of involves visiting nurses, but the rules on what they can and cannot do appear to be ultimately arbitrary. Why? Fear of lawsuits combined with regulatory craziness. It's a visiting nurse who will not touch a fallen patient because of the risk. There's something really twisted about that. Makes me want to turn them loose even more.
4) If anything, we really need to be able to embrace the fact that people make a lot of sacrifices for the ones they love, and I've learned very quickly that I'm not alone in wanting less "help" from outside influences and more ability to be able to do what I can. As a matter of "social stigma," we don't talk about depression enough, about how depression impacts our relationship with ourselves and others, and how caregiver burnout can impact all those things. We don't want to talk about our caregiving lives because we, instinctually, don't want to burden others. We'd probably be better off as a society and a world if we were more open about them, and maybe it's time to start that on my own. Too often, the help we need is not financial or institutional in nature, but just that sort of mental kudos that you're doing what you can. Talking with others about this has really opened up a lot of discussion with others who are going through similar issues who never talk about it for those reasons. That might be part of why the laws and regulations haven't caught up to actual need, and too often reflect the theoretical based on the questionably statistical. It's how people like my mother fall into those gaps.
Needless to say, society does not appreciate the sacrifices of caregivers at all. For as much as we preach about having to be all in it together and such, the experience of caregiving is a very lonely one, and one that few really get to understand. It's one thing to have an old person in your house who you need to cook for and clean while they're still generally with it. It's another to have that person actively hate you for it when it's your own parent, even though the part of that person who was actually your parent disappeared ages before. Laws like this in China are devastating because they misunderstand that balance between caregiver and caregiving, and almost encourage bad ideas and actions toward those who need the most help. We're lucky to be involved in a program that is designed more to intervene in regards to caregiver burnout than anything else - something none of the health reforms, which seem singularly focused on extending life, seem to understand.
In a sense, I have no choice but to do this for my mother, because that's how she raised me. She would be angry if she knew I was doing so, but you can't teach compassion and service to your children and then expect them to abandon it when you yourself need it. My sacrifice is no different than the one my grandmother made for my grandfather, that countless others who might read this might have made, and that a countless number of people that we'll never know make daily. My experience is different only in the sense that I'm very politically active and generally open about a process that's too often kept in the shadows for no good reason. The stigma of mental illness and such.
Anyway, some really strange thoughts in context to the current debates in general:
1) A lot has been said about mental health, especially in the context of the gun debate. Among the people who were in the emergency area with my mother was a guy who had assaulted a family member. It's interesting to consider, especially since, when we think about "the mentally ill should not have guns," pretty much everyone in the debate is in agreement that the folks like my mother, like Assault Guy, shouldn't have weapons. We already have legal prescriptions in place for them, however - things like medical proxies, powers of attorney, and such. You're not going to get everyone, especially when you have the mentally ill who are also alone or homeless or lack the support system. No system will. But it has really opened my eyes a bit more to the problems with such proposals. For example, there are many reasons to institutionalize someone for a short time - should that invalidate their rights entirely? Any number of minor mental health issues have violence as a symptom/extreme result - should we remove the rights of all depressed individuals as they may get violent? I understood that the proposal about gun rights and mental health were simple to start, but I didn't realize how much so until this week.
2) My mother's situation insurance-wise is complicated for a few reasons. Some of the complexities is because she worked in local government her whole life, but there's a contrast to be made with her insurance condition and how the governmental incentives regarding insurance works. My mother was diagnosed at age 52 - exceptionally young for Alzheimer's. Shortly after this, my wife and I looked into long-term insurance. Needless to say, it's not even available at a young age, and rarely is it available (in Massachusetts a year ago, at least) before you're 50. As a public employee, there's no Medicare available. Standard insurance doesn't cover long-term care. Quite the gap. Why? Medicare! Since Medicare exists, the market for older insurance has dried up. But Medicare, like many European socialized models and like the Canadian universal model, does not cover long-term care. Medicaid fills in that gap for many, but since it's need-based, it often kicks in after you've liquidated the assets of the infirm, assuming they last that long.
I'm a proponent of removing the employer/insurance relationship because of what it does to costs and the incentives it creates. Medicare has created a situation where far too many people are lost in the shuffle thanks to the single payer health care, leaving the costs to other people and removing a valuable market both for the insurer and those who need to be insured. Why won't governments worldwide fund it? It's very expensive (and arguably a good reason as to why they're able to keep the costs so low, which I hadn't considered until this week). Why would private insurance handle it better? It's very unlikely you'd need it, and very likely you'd want it. I don't want to do to my kid what we're going through, that's for sure.
3) The liability craziness is really out of hand. Part of the program my mother is part of involves visiting nurses, but the rules on what they can and cannot do appear to be ultimately arbitrary. Why? Fear of lawsuits combined with regulatory craziness. It's a visiting nurse who will not touch a fallen patient because of the risk. There's something really twisted about that. Makes me want to turn them loose even more.
4) If anything, we really need to be able to embrace the fact that people make a lot of sacrifices for the ones they love, and I've learned very quickly that I'm not alone in wanting less "help" from outside influences and more ability to be able to do what I can. As a matter of "social stigma," we don't talk about depression enough, about how depression impacts our relationship with ourselves and others, and how caregiver burnout can impact all those things. We don't want to talk about our caregiving lives because we, instinctually, don't want to burden others. We'd probably be better off as a society and a world if we were more open about them, and maybe it's time to start that on my own. Too often, the help we need is not financial or institutional in nature, but just that sort of mental kudos that you're doing what you can. Talking with others about this has really opened up a lot of discussion with others who are going through similar issues who never talk about it for those reasons. That might be part of why the laws and regulations haven't caught up to actual need, and too often reflect the theoretical based on the questionably statistical. It's how people like my mother fall into those gaps.
