Don't get me wrong: there are (must be) families that pull together to take care of elderly relatives. But judging from the reaction when one woman told her support group that she was enjoying the time spent with her declining mother and was willingly giving her life to her, this is a rare. The reactions of the other members of her support group ranged from derisive and resentful to flat-out hostile. The group either didn't believe her or thought she was just showing off. That's how hard it is.
In an effort not to discourage those who have taken on the job of caring for others, most books on caregiving tend to emphasize the positives of caring for a declining relative: e.g. quality time with loved ones and the feeling of doing something worthwhile. What they put only in the tenderest terms are some of the problems. Make that a lot of problems and many of them profound.
Having provided terminal care three times, and still recovering from the last one, I'm not about to sugar coat it. In the most recent instance, I found the caregiving so stressful that I wondered if I was going to die before he did, particularly when I wound up in the hospital with a suspected heart attack (just violent stress-related indigestion thank God).
Unsurprisingly, given the demands, most people are very reluctant to take it on. Within families, when some duck out and leave it to others, the result is a toxic brew of accusations, guilt-flinging, and ultimatums that can resurrect old childhood grievances (you were always the favorite), spawn suspicion (you only care about what's in the will), and predict unfavorable outcomes (just wait until it's your turn--karma's a bitch).
The usual suggestions that caregivers should take care of themselves and get time off are easy to say and, while comforting, very much harder to do. All I can do is offer my own suggestions to you as a sort of sympathy to tell you that you are not alone:
1. You'll do better if you to arrange for a day-care or an overnight facility when needed rather than hoping that anyone will offer (people can chip in on cost). Certain members of the family will show up only when convenient, and patients will be appreciative of these yetis because their appearance seems special. You will probably be taken for granted and even abused (if the patient is kicking, spitting, and biting, guess who is going to get it). The others may feel slightly guilty at escaping, but not enough to do anything about it and even when there is agreement, say, on taking the relative for a day or two, it always seems subject to revision.
2. Understand that giving recognition to you implies you're doing something exceptional and that may not be in the best interests of those ducking out in it. Everyone is going to claim that their lives are too busy for them to become involved. When they do show up, they will behave as if they should be awarded a medal. My friend L's sister-in-law ended spending her time with the father-in-law because when he came to her house, he insisted on using a copper washbasin as a urinal. Not nice, admittedly, but it left everything to fall on L. Yet, when he finally went into an assisted living facility, the sister-in-law showed up for the facility's caregiver appreciation days to have a free manicure. You'll need to speak out and make clear that some special recognition for the primary caregiver (flowers, gift certificate) is a good thing.
3. Non-caregiving relatives are going to be afraid that if they do one thing for you, it will be a slippery slope and you'll make a habit of it. You'll get better response if you give specific assignments and specific dates because they are finite. When D asked her brother to take their mother for a couple of days to allow her and her husband to get away, the brother suddenly had a business trip. When I asked for general relief from my partner's three children, no one responded. When my friend Kimi won a cruise and invited me to go for a week, I was smarter. I sent out specific dates and pointed out that this was one week out of three years with no break. Two of his three children showed up, although it was only my own son traveling for two hours each way for two weekends in a row who made it finally possible.
4. Be prepared to be tough when the time has come for professional care. Finances are often an issue when there is talk of placing the patient into a care facility. All of a sudden keeping the patient at home will suddenly become "essential." You need to suspect the motivation for this sudden sentimentality. The non-caregivers know how much these facilities cost and may want to save their inheritances. They will cover their guilt (assuming they have any) by criticizing you for not respecting the patient's wish to stay home. Don't be surprised if the relative who has been least involved shows up and wants to take over decision-making.
5. Don't assume that being a workhorse is going to be appreciated. If you try to point this out, your motivations will be misconstrued and peddled as fact (she didn't like the will). If you are not the first wife, your care-giving will be dismissed absolutely and any money left to you will in the minds of his children will be payment for whatever service you provided. If you doubt this, look at what happened to Robin Williams' wife who had to sue his children to keep things acquired in her marriage. You may very well not ever see the children again--but only you can decide if that's good or bad.
6. Finally, though, don't be afraid to reach out to others. It's sad when you have to watch someone you love slip away from you and go through personality changes. But the truth is that you have become somehow conflated in their minds with their loss of power and physical health. You are seeing them at their most vulnerable, and they have no one else to vent their frustrations on. I've been there. After I told my partner that I could not bring him home to die because I couldn't provide the intricate nursing care he was getting from Hospice, he turned away and never spoke to me again. Of all the things he had ever done, that was the cruelest. It was only through the kindness of the Hospice counselors that I was able to get beyond that final picture of him, not least because I learned that I was not alone. Others had experienced this rejection as well.
My thoughts are with you all and good luck.
Thursday, March 16, 2017
Monday, March 13, 2017
Trump Primer 2: Deconstructing Government Goes Along with Trying to Silence Science
Talk about timing. Last post, I talked about the Trump administration having no idea of how bureaucracies work. What I really meant was that they have no idea of how human beings work. I see that as a flaw. They may not, and if they don't, then they are flying in the face of thousands of years of human experience in governing. Their learning curve is going to be ugly because I can't think of any society where there hasn't been some form of political/judicial structure. Cheats and other criminals have ever been among us.
Among the largest early bureaucracies, of course, was the Church which took up political administration because secular powers were constantly at war. Somebody had to tell misbehaving humans that adultery and theft were not good ideas and, more important, have some pretense at enforcing the laws even if it was just the threat of ex-communication. Knighthood, for example, was cooked up to distract unemployed younger aristocratic sons from tearing up the countryside and disrupting the local economy.
Unfortunately, this early crusading Church civilized people at great cost because along with an enforced theology, it imposed a dangerous anti-scientific orthodoxy, not least because intellectuals tended to question the authenticity of the Church's founding documents. The Church was not about to dilute its power by permitting heretical science to proliferate. The result is still with us: a schizophrenic lip service paid to something called God's will, a taste for absolutes, and some of the most outrageous hypocrisy I have seen.
So, what does this history say about the current power brokers in Washington DC?
By trying to destroy government, I believe that the true believers (TBs) fail to acknowledge its legitimate role in protecting us from one another. And by allowing ideology to trump science as it has, they remove the rational basis for decision making. I am waiting to hear a reprise chorus of "pointy headed intellectuals in ivory towers, " but I for one would not fancy space travel in a craft constructed according to Elijah's descriptions.
Yet, here we are making major political decisions based on unsupported theoretical beliefs about human behavior. Will absolute freedom make us responsible and independent? Or will it just encourage the selfish and greedy? Stay tuned.
Today the Congressional Budget Office told us that many millions of people will lose health insurance under the proposed conservative health care act. That's what most of us believe, but what do the TBs do? Instead of looking at the data scientifically, they try to discredit its findings. The 16th Century Church would have been proud of them and would probably have encouraged them to refer the staff of the budget office to the Holy Inquisition.
All this might be somewhat understandable if TBs really believed that science was the enemy. But they don't and here lies the hypocrisy. They all have health insurance and expect to have their blood pressure treated with something other than leeches. I guess it all depends on whose ox is being gored.
So--here is my warning to TBS:
Take down the EPA and enjoy contaminated drinking water. Remember when water from the Great Lake system came out of the tap with a head of liquid soap foam?
Take down the FDA and expect more e-coli outbreaks and chemical manipulation of food because someone will always try to make an extra buck.
Take down the DEA and watch out for something like thalidomide. US babies were saved from that because the DEA was slow to approve. Europe was not so lucky.
Take down the SEC and regulations and watch Wall Street go back to the profitable and destructive investments it wallowed in.
Remove the DOE and turn education over to for-profits and watch the ballooning of for-profit institutions that take public money and refuse to be held accountable.
Take down the National Park Service and watch the billboards come up as the parks are made to pay for themselves.
Take down insurance regulators and watch what happens when there is another national disaster. You want a settlement? You'll have to take them to court, if you can afford to.
My take on all this: If you want to live in the Wild West, then don't expect cancer treatments, laser surgery, emergency rooms, space exploration, smart phones, and computers. Make your own guns and ammunition and don't call 911 if you are shot: dig your own bullet out. I expect to find you living in tepees, raising your own food (not buying seeds), relying on horses for transportation, and driving cattle to markets in Chicago (railways are technology and science, Chums).
I could go on, but will end by suggesting that TBs stop accusing science of being something it is not. Science does not operate in absolutes. Absolutes are the province of religion. Science moves forward by disproving what is known and then finding new ways of addressing the problem. Aren't you always asking for the "latest" treatments for whatever ails you?
At the same time, they might learn what government does and why it does it. You can count me among the cynics, although I prefer to think of myself as someone who has read history and learned from it. Destroying government simply because you don't like all of it, means destroying life as we know it and turning us all out into a Hobbesian world where life is "nasty, brutish, and short."
Among the largest early bureaucracies, of course, was the Church which took up political administration because secular powers were constantly at war. Somebody had to tell misbehaving humans that adultery and theft were not good ideas and, more important, have some pretense at enforcing the laws even if it was just the threat of ex-communication. Knighthood, for example, was cooked up to distract unemployed younger aristocratic sons from tearing up the countryside and disrupting the local economy.
Unfortunately, this early crusading Church civilized people at great cost because along with an enforced theology, it imposed a dangerous anti-scientific orthodoxy, not least because intellectuals tended to question the authenticity of the Church's founding documents. The Church was not about to dilute its power by permitting heretical science to proliferate. The result is still with us: a schizophrenic lip service paid to something called God's will, a taste for absolutes, and some of the most outrageous hypocrisy I have seen.
So, what does this history say about the current power brokers in Washington DC?
By trying to destroy government, I believe that the true believers (TBs) fail to acknowledge its legitimate role in protecting us from one another. And by allowing ideology to trump science as it has, they remove the rational basis for decision making. I am waiting to hear a reprise chorus of "pointy headed intellectuals in ivory towers, " but I for one would not fancy space travel in a craft constructed according to Elijah's descriptions.
Yet, here we are making major political decisions based on unsupported theoretical beliefs about human behavior. Will absolute freedom make us responsible and independent? Or will it just encourage the selfish and greedy? Stay tuned.
Today the Congressional Budget Office told us that many millions of people will lose health insurance under the proposed conservative health care act. That's what most of us believe, but what do the TBs do? Instead of looking at the data scientifically, they try to discredit its findings. The 16th Century Church would have been proud of them and would probably have encouraged them to refer the staff of the budget office to the Holy Inquisition.
All this might be somewhat understandable if TBs really believed that science was the enemy. But they don't and here lies the hypocrisy. They all have health insurance and expect to have their blood pressure treated with something other than leeches. I guess it all depends on whose ox is being gored.
So--here is my warning to TBS:
Take down the EPA and enjoy contaminated drinking water. Remember when water from the Great Lake system came out of the tap with a head of liquid soap foam?
Take down the FDA and expect more e-coli outbreaks and chemical manipulation of food because someone will always try to make an extra buck.
Take down the DEA and watch out for something like thalidomide. US babies were saved from that because the DEA was slow to approve. Europe was not so lucky.
Take down the SEC and regulations and watch Wall Street go back to the profitable and destructive investments it wallowed in.
Remove the DOE and turn education over to for-profits and watch the ballooning of for-profit institutions that take public money and refuse to be held accountable.
Take down the National Park Service and watch the billboards come up as the parks are made to pay for themselves.
Take down insurance regulators and watch what happens when there is another national disaster. You want a settlement? You'll have to take them to court, if you can afford to.
My take on all this: If you want to live in the Wild West, then don't expect cancer treatments, laser surgery, emergency rooms, space exploration, smart phones, and computers. Make your own guns and ammunition and don't call 911 if you are shot: dig your own bullet out. I expect to find you living in tepees, raising your own food (not buying seeds), relying on horses for transportation, and driving cattle to markets in Chicago (railways are technology and science, Chums).
I could go on, but will end by suggesting that TBs stop accusing science of being something it is not. Science does not operate in absolutes. Absolutes are the province of religion. Science moves forward by disproving what is known and then finding new ways of addressing the problem. Aren't you always asking for the "latest" treatments for whatever ails you?
At the same time, they might learn what government does and why it does it. You can count me among the cynics, although I prefer to think of myself as someone who has read history and learned from it. Destroying government simply because you don't like all of it, means destroying life as we know it and turning us all out into a Hobbesian world where life is "nasty, brutish, and short."
Thursday, March 9, 2017
Trump Primer One: Governments operate on both laws and agreements
If it comes right down to it, I have some compassion for our newest president. It's not only because he has no experience in how to work with a government bureaucracy but more that he has not surrounded himself by people willing to teach him (assuming of course that he would listen). His current efforts are rather like someone wearing a captain's cap boarding an aircraft carrier and telling the crew to set sails. It leaves the people at the radar and computer controls of a massive war ship sort of at a loss.
I don't pretend to know everything there is to know about how government bureaucracy works, but I have an idea from working with the layers of bureaucracy and political intrigue endemic to the president's office of a large state university system. Admittedly, our budget was probably four or five zeros short of the national federal budget, but--trust me--when it came to politics and entrenched interests, we could compete internationally. One of the vice presidents even wrote a book about the experience. He called it "Who Runs the University?" That was up to debate.
My boss, the president, employed me as his trouble shooter and since my primary experience had been as a faculty member and then as an assistant dean on one of the smaller campuses, there was quite a learning curve. It was during this time that I learned what was to be the most important lesson of all--and the one I would like to teach our president.
Basically, this lesson is that governments and bureaucracies function within the framework of the laws that establish them but operate daily on the basis of common understandings and a hand shake.
Most bureaucracies, and my university system was no exception, have two different types of administrators and support staff. In a university, this takes the form of a distinction made between the offices of so-called academic (instruction and research) and so-called support (finances, management, personnel). The relations between the two are generally cordial, but not always, especially if a current president values one over the other.
When I first joined the president's staff and realized that I had responsibility for budget, I went down to the fiscal affairs office, found the person who would be reviewing the budget and my purchase orders, and said basically that I wanted her to keep me out of prison and out of the clutches of the state auditor. Because I respected her, our working relationship was smooth and she went out of her way to help me--legally--fulfill the president's mandates.
When another president came in later, he didn't like the ways things were done. He refused to listen to her and completely undervalued her expertise. The result was a series of highly embarrassing investigative articles in the local newspaper about fiscal misadventures that he tried to blame on her and the eventual search for his successor.
So administrators--particularly those with little knowledge of how things are done--are wise to cultivate the various cabinet offices and respect their expertise. The opening days of a new presidency are not the time for wholesale change in policies that affect the day to day operations of a complex organization. This doesn't mean that change isn't possible, just that it is wise to get the cooperation of those support offices before launching out into situations where outcomes are not understood let alone considered. It's also unwise to antagonize the people charged with covering your butt.
I must admit to chortling when our president said that nobody knew how complex changing the health law was going to be. Hopefully, he (and those who voted for him) is learning about the law of unintended consequences. Nobody can anticipate all the possible outcomes (desirable and un-) but not to know that changing any law is complex and needs lots of buy-in simply tells me that our president has not been listening to his support staff. It's also not very good policy to undercut this staff, particularly not when they are in the public relations office--but that's another issue. The policies that keep these offices operating smoothly are based on working agreements made when things blew up in the past.
I can't help feeling that the people who expect the president to address all their grievances all at once have been very unfair to him. In fact, I wouldn't be surprised if he became something of a tragic figure as he tries to fulfill their demands. But I see no way to get around that unless he and his supporters finally learn that great ships of state operate as they do for a reason and when they change direction they need a lot of sea space to do it.
I don't pretend to know everything there is to know about how government bureaucracy works, but I have an idea from working with the layers of bureaucracy and political intrigue endemic to the president's office of a large state university system. Admittedly, our budget was probably four or five zeros short of the national federal budget, but--trust me--when it came to politics and entrenched interests, we could compete internationally. One of the vice presidents even wrote a book about the experience. He called it "Who Runs the University?" That was up to debate.
My boss, the president, employed me as his trouble shooter and since my primary experience had been as a faculty member and then as an assistant dean on one of the smaller campuses, there was quite a learning curve. It was during this time that I learned what was to be the most important lesson of all--and the one I would like to teach our president.
Basically, this lesson is that governments and bureaucracies function within the framework of the laws that establish them but operate daily on the basis of common understandings and a hand shake.
Most bureaucracies, and my university system was no exception, have two different types of administrators and support staff. In a university, this takes the form of a distinction made between the offices of so-called academic (instruction and research) and so-called support (finances, management, personnel). The relations between the two are generally cordial, but not always, especially if a current president values one over the other.
When I first joined the president's staff and realized that I had responsibility for budget, I went down to the fiscal affairs office, found the person who would be reviewing the budget and my purchase orders, and said basically that I wanted her to keep me out of prison and out of the clutches of the state auditor. Because I respected her, our working relationship was smooth and she went out of her way to help me--legally--fulfill the president's mandates.
When another president came in later, he didn't like the ways things were done. He refused to listen to her and completely undervalued her expertise. The result was a series of highly embarrassing investigative articles in the local newspaper about fiscal misadventures that he tried to blame on her and the eventual search for his successor.
So administrators--particularly those with little knowledge of how things are done--are wise to cultivate the various cabinet offices and respect their expertise. The opening days of a new presidency are not the time for wholesale change in policies that affect the day to day operations of a complex organization. This doesn't mean that change isn't possible, just that it is wise to get the cooperation of those support offices before launching out into situations where outcomes are not understood let alone considered. It's also unwise to antagonize the people charged with covering your butt.
I must admit to chortling when our president said that nobody knew how complex changing the health law was going to be. Hopefully, he (and those who voted for him) is learning about the law of unintended consequences. Nobody can anticipate all the possible outcomes (desirable and un-) but not to know that changing any law is complex and needs lots of buy-in simply tells me that our president has not been listening to his support staff. It's also not very good policy to undercut this staff, particularly not when they are in the public relations office--but that's another issue. The policies that keep these offices operating smoothly are based on working agreements made when things blew up in the past.
I can't help feeling that the people who expect the president to address all their grievances all at once have been very unfair to him. In fact, I wouldn't be surprised if he became something of a tragic figure as he tries to fulfill their demands. But I see no way to get around that unless he and his supporters finally learn that great ships of state operate as they do for a reason and when they change direction they need a lot of sea space to do it.
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