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A vexing time in every adult's life is when the relationship with the parents flip. While when growing up the child was dependent on the parent, once the relationship has flipped the dependency goes the other way. The parents remain adults, but their ability to fend for themselves has lessened enough that they need help. The vexing part is about how much the child imposes his view on what's good for the parents versus how much the child simply provides human grease to the machine the parents have erected, thereby letting the parents exert more overt control.
My experience is that this flipping can be quite gradual and therefore may seem a natural passing of responsibility, so flipping might not be the best word to describe what's going on, but let me stick with the term given the caveat, because in memory long periods of time can appear as moments.
With my dad, who had the more severe type of diabetes, he had to depend on others his entire adult life. This was especially true when he "got into trouble" because of low blood sugar. At that point he did not have enough self-preservation instinct in him to rectify the problem on his own. He needed a glass of orange juice, immediately, then something starchy to eat. He would sweat through his clothes during the incident and would need to towel off and change into something else that was dry. The experience would be exhausting so after he was getting back to normal he needed to be helped upstairs and into bed for a nap.
When we were young this burden to care for my dad during an insulin reaction fell on my mom. It's quite a heavy burden to carry, having someone else's life in your own hands. It's natural to want to avoid these experiences, if at all possible, the ounce of prevention worth a pound of cure an idea anyone who cares for a diabetic will understand implicitly. It is also natural to feel a sense of panic when the situation happens. It's a Darwinian moment. My mom, who was prone to be commandant-like even in other circumstances, would bark to my dad ahead of time about eating enough and then sometimes during the episode, when he was slow to drink the juice or eat the cookie. Nobody likes to be barked at. Having that a repetitive experience over a lifetime can make a person feel like a prisoner in jail. I'm sure that my dad felt that sometimes. It is remarkable that he was able to maintain a sense of joy in simple pleasures and a zest for good company from his friends and family at other times.
For my part, I learned by the time I was in high school not only to get the orange juice and the food, but also to try to maintain a calm voice in encouraging him to take it. This was probably my first experience with entirely surrendering my own needs to the necessity of the moment. I can't say that I liked doing it. Once or twice I barked at my dad, out of the same frustration my mom felt. It's my brother who became the doctor. But I did come to understand the need. Sometimes the immediate situation trumps all other considerations.
Some years later it fell onto me to be the family chauffeur, when I was around. I'm not sure how old I was when that happened. But I do know that by the time I started graduate school my dad was sixty three. When I would come home to visit, my mom and dad would pick me up at LaGuardia but then when we'd drive back home it would be me at the wheel and it would be me driving the whole time I was there. This happened by mutual consent. Apart from the diabetes, my dad had poor eyesight. For him driving was somewhat arduous. My mom wasn't that good at the wheel either. I had been in a car accident with her as the driver when I was younger. They trusted me to do a better job.
I know I'm not yet ready to trust my kids to drive the family around. On our recent trip to Chicago, I drove. Within a year my older son will be the same age as I was when I started graduate school. Will my confidence in his efforts to help the family rise accordingly? I don't know. I'm less than two years away from turning sixty. While in some ways I can see my own capacities diminishing, I think it will be hard for me to pass the baton.
The parent trusting the child to attend to the parent's welfare is interesting. I'm not sure from where the trust arrives, especially early on. It may have been easier for my dad this way because he had to trust people in other regards and thus got used to it. My mom also seemed ready to trust me. She was so focused on work and tennis when I started graduate school that having help with the rest of life was very welcome by her.
It's also true that I had a sense of their rhythms, as an insider, perhaps more than my kids have a sense of me. We played family tennis on the weekends growing up. Ironically, after my parents retired to Florida it was my dad who had the tennis bug, my mom disabled after her hip replacement went awry and thus unable to play, but my dad enjoying playing doubles with other residents of Century Village and socializing with them before and after.
We also played a lot of family bridge. My parents (more my mother than my father) were avid if only moderately skilled players. Many of the friends whom they had over on the weekends came to play bridge. Bridge was a big part of my parents' social life. So it's not surprising that my parents taught my brother and me. (My sister, I believe, didn't learn bridge since, 5 years my senior, there wasn't a fourth person around to play with when she was junior high school age. I was too young for that.)
Bridge is a fascinating game to an economist as it bears aspects of incomplete information and communicating privately held information via both the bidding and the play of the cards. When I came to the U of I some of my colleagues (who would soon become my very good friends) had a regular game at lunchtime. I joined right in. One of our number had been a ranked player nationally and he tutored us to raise our level. For a while my game improved steadily as I came to understand the requisite thinking in better play. There is a lot of counting to determine probabilities (or at least a sense of probability) in figuring out the play of each card, using the bidding and the prior play to aid in this determination.
I played with my mom a couple of times as her partner at the swim club in Bayside where she was a member. And then when I would visit my parents in Boca they would frequently invite a fourth, usually some widow they knew at Century Village, and we'd play then. Also, because of my training at Illinois, in some instances I was able to explain a better play of the cards than my mom made. She appreciated the insight. In this way I got closer to my mom, since with her disability bridge had become her passion.
The other big deal was the god awful number of times my mother was in the hospital. She had so many operations on her hip that I lost count. She kept on getting infections. Ultimately, she ended up with no prosthesis. Moreover, bone was removed so she wouldn't get further infection. It meant that not only couldn't she walk but she couldn't even get out of bed on her own and needed help to get into the wheelchair. During the time my mom was in the hospital, somebody needed to be with my dad. The stress of the situation was too much for him to handle on his own. I don't remember how this obligation was divided among me and my siblings. I'm sure I was aware of their trips down at the time but I have no memory of those trips now. My brother certainly did a lot to promote my parent's health over the years, but when he was in medical school and afterward doing his internship I don't believe he had as much freedom with his schedule as I did. I was in grad school at the dissertation stage for the first hip replacement, in 1979, and an assistant professor at Illinois for the next several surgeries. I could get somebody to teach a class for me or cancel the class if absolutely necessary. The time I spent doing economic research, which for me was mainly staring at graphs and equations on a yellow ruled pad and divining some truth from that, wasn't formally scheduled. The flexibility that afforded me allowed me to get to Florida when the necessity arose.
It may have been the little things that mattered more. With my mom disabled, my dad did the shopping. He was simultaneously generous and a cheapskate. When I was cleaning out their condo a few weeks ago I found in the storage bin many boxes of crayons and quite a few beach toys that he hadn't had a chance to give to the grandchildren. On the other hand, when shopping at Publix he would always buy the knock off brand, for example the type of toilet paper that makes your skin chafe. When we went out to dinner, it was always the early-bird to get the lower price. In this my parents did what was common to people of their generation, even after the poverty of the Great Depression was a distant memory. Thrift may be a virtue, especially when you are poor, but being miserly when you have the means to be otherwise is less attractive. The worst of this, and possibly idiosyncratic to my dad, was that he never ever threw out food in the refrigerator, even when it was clearly spoiled. He would cut off the mold and eat the rest. He expected me to do likewise when I visited. (And when I first brought my wife down to visit, he also expected her to do the same. She did and was a real trooper about the whole thing.)
By and large I did what he expected and what my mom expected. By the time they had moved to Florida I lived quite comfortably in Illinois. In the small things, I denied myself those comforts when I visited them, in order to fit better into my parents' world. Not to belabor the point but by surrendering myself to my parent's needs and wants the arrangement worked. It's not clear whether another approach would, but I doubt it. The one exception that I recall in my behavior when down there is that in the morning I made the coffee stronger than they liked - they could water it down to suit their tastes.
This is the tapestry on which was built my parents trust in me to care for them. The last several weeks I've been sorting through thoughts about my motivation for behaving this way. One biggie is that the visits were episodic. The return flight was booked in advance. The temporary nature of the arrangements allowed me to live in my parents' world for a short time knowing that I'd soon return to mine. Another important factor is that with my job as a faculty member at the U of I there was independence from my parents' judgments. I didn't feel threatened in these visits that they'd become the source of my mom's manipulations.
But these explanations are not sufficient. There was a bond of family that impelled these trips. Eric Hoffer wrote that the Jews (he called them the Hebrews) were the first people who put a strong emphasis on family as a unit demanding intense loyalty. We grew up as reform Jews and compared to my friends really were hardly Jewish. (For example, I didn't go to Hebrew school and I did not have a Bar Mitzvah. We did learn a bit of Yiddish, Jewish history, and some folk songs by attending a school on Saturdays.) Somehow even in this lax environment the Ten Commandments were learned in a deep way and became a guide to life.
Honor thy father and mother.
The word honor is not one I use very often, though in its use I prefer the verb to the noun, as that way the revered person is someone else. Seeking honor in oneself, as the defendants did in A Few Good Men, runs the risk of taking oneself too seriously. I prefer to talk about obligation and use that word instead. Being a member of a family imposes obligations on each member to care for the other members. In the context of family, love and obligation are inextricably tied.
As a kid there were obligations imposed from without that sometimes I resented. I didn't always make my bed and was sloppy in keeping my room. (Some things don't change as we mature.) The education that I'm talking about transfers the important obligations to make them come from within as an adult. There is no resentment, for if there were it wouldn't feel like an obligation, but instead an option with both an upside and a downside. There may be minor irritants but they are nowhere near enough to tip the balance toward non fulfillment. It's quite the contrary, in fact. One feels in tune with oneself in doing what has to be done. (Here I'm mostly thinking about making those trips to Florida, when it was necessary. In contrast, I had a mild phobia for paying my mom's bills. I don't know why but I'd procrastinate doing that and then feel guilty about it afterward.)
There is still judgment needed to define more sharply what is necessary. I found this especially true after my mom had developed a dementia so severe that she couldn't recognize me visually nor say my name. I did go to her Condo once or twice a year. When there was a conference in Orlando in the fall that I was attending (there usually was in those years) I'd visit my mom on the trip and then in the spring I came down to "do her taxes," though that was more excuse than anything else as I easily could have done the taxes from Illinois. But mostly I didn't stay close to her during these visits, hold her hand, or otherwise touch her in a gentle way. I found the lack of recognition too painful. So while she lay in her bed I'd sit in the living room - napping, or reading, or watching TV. It was being there but letting go at the same time.
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This is where the story starts. The above is just prelude. The story is about Beverly, who took care of my mom after my father passed away. The title of the post refers to Beverly and what she did for Miriam (my mother). Beverly did an amazing job. But I'm getting ahead of the story here. So let's return to 1998.
The big source of family happiness that year was my parents' Golden Wedding Anniversary. There is a wonderful family picture taken outside my parents' condo to commemorate the occasion.
There was sadness too brought on when we learned my father had pancreatic cancer. He knew the end was coming and he began to ready himself and the family for it. There were several seemingly surreal experiences I witnessed at around that time, though the sequencing of these I don't remember. One I recall was when I took my dad to Boca Raton Community Hospital for some sort of physical examination and stayed with him in the examination room while the nurse did what she had to do. During the entire time my dad sang an Irish folk song, one I hadn't heard before. Even if he was going out of this world, he was going to show anyone who cared to look that he still had some spit in him.
Another of those things that involved me was a visit with both of my parents to the lawyer who prepared the Wills and Trust documents. My dad wanted me there to understand the implications of these documents and what they meant going forward. In particular, the Trust meant there was no need to probate his Will. In conjunction with this my dad wanted me to manage the various accounts and pay the bills that would come in. My mom never had concerned herself with the finances, so that obligation became mine instead of hers.
My dad wanted to stay in his own place and not move to an assisted living facility. He wanted the same for my mom after he was gone. I learned at that time that Medicare is sympathetic to such wishes. My dad started to get visits twice a day from RNs who would check on his welfare and possibly suggest modifications in his treatment. (He was on oxygen. I don't remember the rest of what they were doing for him.) Though it was not their official responsibility, they also tended to my mom. If the patient's primary concern is the spouse then the spouse's welfare matters as well to those attending to the patient.
I don't recall exactly when but soon my dad needed somebody to be with him during the day, when the RNs weren't there. Beverly was that person. It is how she came into our lives. As we were cleaning out the condo together, Beverly told me a story about Sidney (my dad) near end of life. He wasn't supposed to have alcohol, but he wanted a drink. So he sneaked his way toward the cabinet where the booze was. But he couldn't make it all the way and collapsed. He didn't know that Beverly was watching him the whole time. She caught him before he fell to the ground.
One of the RNs was named Bernadette, an Irish woman. I suppose all health care professionals have compassion for the people they tend to, especially people in my father's situation, but even with that I recall Bernadette as very caring. The other RN had blonde hair and eventually started to interact with my parents on a social basis. I believe I met her entire family at some point and may have gone out to dinner with them. There was a picture of her with her son among the family photos. I can't remember her name now. But I do know that at the visitation after the funeral for my dad she told me that Miriam probably wouldn't live more than another year or two. When one spouse goes, the surviving spouse often loses a sense of purpose. Further, as I learned by watching both my parents and my wife's parents, a co-dependency evolves between them as they age, where they can get along all right together but when one spouse goes those complementary functions are no longer present and the situation can become overwhelming for the surviving spouse. I have not otherwise read on this issue to know if it is statistically valid for people my mom's age at the time of my dad's passing. (She would be 79 later that summer.) In the absence of that information, I took what the nurse told me as the conventional wisdom.
It took two people to get my mom out of bed and into the wheelchair and likewise to get her from the wheelchair into her recliner in the living room. Those facts and my dad's desire that my mom stay in the condo determined the model my brother came up with for my mom's care. She would have two attendants, one a live-in, the other a day person. During the day my mother could be out of bed. During the night the live-in could handle emergencies as they arose but if my mother was sleeping peacefully or reading or watching TV in bed, then the live-in could go about her own business. Over the rest of my mom's life we had two live-ins. Beverly was the day person the entire time. (She had Sunday's off and there was a substitute then and when she went on vacation.)
This was a very expensive solution and therefore was quite unusual. (My brother told me quite recently that the agency said we were the only family to have such an arrangement.) So in what I have to say that follows I suspect much doesn't generalize to other long term care situations. But I believe some of it does.
There was a sizable estate at the time my dad passed. Given the expense of my mom's care and knowing what Social Security and pension income my mom had, I did a quick calculation on how long the estate would last. I guesstimated 10 years. (It turned out to last 11 years.) My mom outlived the estate by a couple of years, which based on what I've said above was a huge outlier compared to the expectation at the time my dad passed. The main reason for this, without question, was Beverly's personal commitment to my mom's welfare.
Sometime during my career as a campus administrator I developed a slogan that has stayed with me. "Anybody can be a hero in a sprint. Nobody is a hero in a marathon." The situation with my dad after the cancer diagnosis was a sprint. In addition to the excellent health care he received, my siblings and I put in yeoman's effort to tend to both parents' needs. Though we didn't know it would be at the time, the situation with my mom after my dad passed proved to be a marathon.
When the parents retire and permanently move south with the kids remaining up north, having their own careers and families, what obligation is imposed on the kids when there is only the one surviving parent left? Is it reasonable to expect that the parent will receive excellent care, so that the kids aren't needed to micromanage the care the vast majority of the time? This is another one I've been scratching my head about. Were we simply lucky to have found Beverly or given how much we were paying isn't it reasonable to anticipate somebody like her to materialize in this circumstance?
Sometimes when you have imponderables like these you look to culture (movies in my case) in search of answers. So, after a fashion, I started to think about Driving Miss Daisy and whether there were any lessons I could learn from it. For the longest time it seemed that there weren't. For one thing the son, Boolie, lived in the same town and could come over to his mom's house on a daily basis if he wanted to. He also directly contracted with Hoke, the driver. In our case Beverly was employed by an agency who supplied all the help and the terms were set by the agency. But that part is mechanical and therefore not the right place to look. Two other things were more important and they too didn't seem to connect to my mom's situation. One was that Miss Daisy had an air of dignity in her manner that my mom didn't possess at all, though they both had been school teachers. The other is that the relationship between Miss Daisy and Hoke had a reciprocal aspect to it. He couldn't read the newspaper. She taught him how. The reciprocation became the basis of their friendship. Near the end of the movie when Hoke visits Miss Daisy in the retirement home, she is able to say to Hoke with utter sincerity that he is her best friend. There was no reciprocity in this respect between Miriam and Beverly. (Maybe, unbeknownst to be me, my mom taught Beverly how to play bridge. That would have been something of a parallel. But I doubt it happened.)
Then a couple of things occurred to me that made the movie more relevant to shed light on my mom's relationship with Beverly. My mom was a survivor of the Holocaust. That fact is enough in itself to convey a sense of dignity about Miriam, quite independent of her decorum when she was under Beverly's care. Beverly got a regular reminder of this. Miriam received a pension from Germany and another from Austria as a personal sort of reparation for what she endured while growing up. The Pension Authorities in both cases requested an annual confirmation that my mother was still alive. This required her signature and it had to be notarized. For two or three years there was somebody living next door who was a notary and my mom had her wits about her then. So it wasn't that big a deal to comply. Afterward those circumstances changed, but Beverly was still able to get the forms signed and completed in an acceptable manner. I don't know how it was accomplished, but she did it.
The other thing is that I realized when the parent can't reciprocate with the care provider, as often will be the case, then the child must do so in some way. Overt reciprocation, as in Miss Daisy teaching Hoke to read, may not be possible. But some sharing in the responsibilities of managing condo life and some expression of love for the parent provide demonstration to the care giver that her efforts are greatly appreciated. These are the behaviors that become obligations and what the movie helped me understand is that these behaviors have more impact than their immediate consequence. Because of the distance and that serious issues with the parent or the apartment come up only from time to time, there are ebbs and flows to this sort of demonstration. I am not a good phone person. Maybe phone contact can offer greater continuity in keeping this triangle working effectively. I don't know. It might even be that there is some benefit in less frequent communication, as it conveys more control and responsibility on the care provider.
In the course I've been teaching recently, The Economics of Organizations, we begin with a critical question. Where are decisions made, at the center or at the edge? It is customary to frame this from a military perspective, command and control versus boots on the ground. The issue is about where the information is and how much time it takes to communicate the information in an effective way. There is local information at the edge that the center does not possess. Sometimes this information demands immediate action. Getting the information to the center so an authoritative decision can be made might seem the deferential way but it can cause too much delay and thus lead to a bad consequence. For this reason, economists have a bias in favor of decentralized decision making as the way to attain maximal efficiency. But for that to be correct, the decision maker at the edge has to be both intelligent and responsible.
There is a bit more to it. One should ask, responsible to what end? Are the organization goals imprinted in the decision maker's psyche in such a way that the choices made at the edge are in accord with what the center would do if it had the requisite information? There are two different reasons why the answer to this question might be no. One is selfishness and looking out primarily for number one and only secondarily considering organization welfare. The other, not entirely distinct from the first but sufficiently different to warrant its own mention, is that people with decision making power like to give their own definition to the goals the organization should be pursuing. I call this issue - everyone wants to drive the bus.
Most people that I know via my work life at the U of I and the colleagues I have met nationally via this work find self-expression and personal commitment in their work and their immediate family. These are people with a lot of drive and talent. Given these personal capacities, there is a question of whether they find the work or the work finds them. I suspect it is a bit of both. When I was in the hospital for five days last fall I met a different sort of person in the nurses and technicians. These people seemed motivated a great deal by a need to serve with less of an apparent need for self-expression. The hospital is a highly regulated environment with lots of procedures in place. Almost all of these people follow the procedures to a T, though they try hard to be empathetic given that constraint. I had only one nurse who exercised discretion vis-à-vis a bending of the rules for my benefit. She unhooked me from the IV after I had gotten the antibiotic so I could get up on my own and she unhooked the leg squeezers so I could sit on the side of the bed more comfortably and with iPad on tray table pretend like I was at home in front of my PC. To her, this offering of a little sense of personal freedom to me was important, especially insofar as it didn't interfere at all with the treatment I was receiving for the infection.
I felt so strongly about this at the time - care must have some elements of discretion in it even as there are some procedures that must be followed - that I wrote a longish post in Facebook entitled Saichel, the Yiddish word for common sense. The upshot of that piece was that common sense has become an oxymoron. It is very hard to find. (The piece was also a bit of a critique of data driven decision making since, in spite of my infection, my vitals were normal the entire time I was in the hospital so there didn't appear to be much risk to my well being from the bending of the rules, which themselves were not contingent on that sort of data.) In my limited experience common sense is more likely to be found among my peers at the University than it was among the nurses and techs. In other words, it is something I expect and appreciate in the people with whom I interact, but I'm not at all confident that paying a lot for a parent's long term care is sufficient to find it in the care provider.
Let me give a simple example of the practical intelligence that Beverly possessed in abundance. My mother had a credit card. But it was Beverly who did the shopping. Beverly found a place (the pharmacy) which would let her purchase using my mother's credit card. Since Beverly was a repeat customer, they trusted her. The bill would come to me in Illinois. This was far better than paying for everything in cash so that there wasn't so much cash lying around the apartment. The arrangement worked pretty well, with the weak link in the chain my not always paying the balance in a timely fashion. (When I was busting a gut as a campus level administrator, I didn't have the mental bandwidth to always remember to pay my mom's bills, but I also have always detested to do lists, preferring my discretion instead. I usually could keep track of many things in my head but I'm forced to admit that occasionally a ball would drop. Sometimes the ball was my mom's bills. It's funny, but this ball dropping thing for me is happening more frequently recently and now I'm no longer burdened with work obligations in a comparable way.)
During the first few years after my dad had passed my mom could direct the care providers to attend to her needs. On a social level, this meant finding a bridge game at the Clubhouse in Century Village or at a place outside the development, or in helping out if my mom had a friend over for company. As my mom's mind deteriorated, people no longer wanted her as a partner in bridge. And the friend visits to the apartment became rarer and rarer. Consequently, my mom became more and more isolated. All she had were Beverly and the live-in and the occasional visit from me and my siblings. Had I been in Beverly's shoes at the time I would have become discouraged about attending to Miriam. Yet I did not see such discouragement. Instead I saw incredible diligence in providing care.
Getting my mom to drink the Ensure or swallow her pills became a major ordeal. I talked about my dad lacking a self-preservation instinct when he was having an insulin reaction, a temporary situation that would be rectified as his blood sugar returned to normal. With dementia, apparently the self-preservation instinct lessens permanently. My mom didn't have immediate threats to her health like my dad did. But her skin would bruise very easily - there was an awful looking blue color over much of her arms and legs - and she was prone to develop skin cancers. Beverly carefully monitored developments with these and arranged for doctor visits as the situation appeared to warrant it so an appropriate treatment could be applied. It was a real schlep to get my mom to the doctor. A wheelchair capable ambulance was needed. But that did not deter Beverly from making sure the doctor would see my mom and the follow up care given to my mom consistently.
Beverly is quite religious. In other contexts I'm somewhat anti very religious people, as the religion seems to become rigid doctrine that blocks human feeling and good judgment. Among such people, religion also seems capable of breeding extreme prejudice of those outside the religion. Yet as Nicholas Kristof has pointed out repeatedly, some very religious people are capable of extraordinary acts of kindness to others outside their own families who are in need. Their religious belief imposes an obligation to serve others and because their belief is intense their personal commitment to this service is strong. When this sort of intensity is coupled with a practical intelligence, it produces wonderful results. I admire Beverly for that and am extremely grateful that she cared for my mom all these years.
Let me close with one other point. It's about the economics of the system of long term care. There is similar economics with daycare for young children. When my kids were very little, my wife and I served on the Board for the daycare my kids attended. From that experience I learned the teachers were paid quite near to minimum wage; yet from a parent's perspective they had a huge responsibility. It didn't seem right. The teachers themselves almost certainly amplified their incomes by babysitting some evenings. I don't know if this was the norm, but my wife and I paid babysitters much above minimum wage, to show our appreciation for the good work that was being done. It made sense all around.
Those providing long term care also are paid at a very low rate. They work long hours, all under contract. There really is no time for moonlighting if fully employed as a long term care provider. Do such people earn enough to lead a decent life when they are not at work?
Let me add to this question the observation that much long term care is provided in those states hurt most by the burst of the housing bubble. Indeed, from an economics perspective it is fairly straightforward to create a linkage between the two, as the migration of seniors from the North to the South provided one of the underlying drivers for the rise in housing prices that fed the bubble and, of course, some chunk of those seniors will need long term care. There is an Op-Ed piece in today's NY Times which suggests that Florida, for one, will suffer such market vicissitudes for the indefinite future. Even as the stock market has rebounded so that the financial assets of many retirees are in reasonably good shape, the system doesn't seem well designed to protect the long term care provider's welfare.
There is thus the question whether the system should change to better do this or, if not, whether individual adult children should feel it part of their responsibility to somehow address the concern. If other adult children have witnessed the same high caliber long term care that Beverly provided, then they too might start inquiring about the issue. It's time to talk about it.
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