thevicarofblue

but i will NOT cross a picket line!! EVER!! i'd work as a chaplain if possible, but I'd work during a pandemic. i cared for hundreds of folks in the early years of HIV, before it was HIV/AIDS, even before GRIC and ARC.

We just returned from three years in the Republic of Panama as missioners. Two days before my husband's ordination to the priesthood, he smashed into pieces of broken his little finger while trying to capture one of our escaping cats--the automatic device that is supposed to stop the automatic door did not work. It was the middle of the night. We had no car and had no idea who or what to call. As Panama has a tremendous taxi system (one actually does not need a car for most places in the city), a young driver stopped us as we were walking down the street, hoping to find a cab. The drive was super fast and super safe (I'm one of those few people who LOVE the creativity of Panamanian cab drivers) and got us to the ER of Paitilla Hospital. It was and remains a stunning experience. No one asked for insurance verification. People said hello, let me help you, I'll get a doctor, I'm sorry you'll have to wait about fifteen minutes for your surgeon; he is coming from home. To me, could I get you water, coffee, Coca Cola? The bathroom is just around that corner. I've always said I'll go to hell because I loathe physicians and therefore will spend all of eternity with them (I actually don't believe in hell in that sense). The surgeon AND the anesthesiologist, along with the circulating nurse and someone else came to introduce themselves to me. They even invited me into the OR, knowing I used to be a nurse (and still had a license). The food was even good! No one got freaked out when they walked in AFTER knocking AND waiting for permission to enter and found us sleeping in the same bed, the hospital bed. Someone kept me informed during the surgery; I am never without a book, knitting, and rosary beads, so I was okay but I appreciated the experience of genuine care. The OR team showed up the next morning just to check in on how we were doing before they left their shift. Nurses, K's surgeon, and his PA were marvelous teachers. Once we had to call for a nurse and the response was made AT THE DOOR and not via that horrible squawk box thing. The entire staff took their time; I often felt we were a guest in someone's home rather than in the 2nd most "exclusive" hospital in all of Panama City. From the ER to Xrays to OR time to the actual procedure and casting, all medications, all doctor visits, anesthesiology and anesthesiologist, nursing care, food EVERYTHING was, get this, $1300.00. Yes, I said thirteen hundred dollars. The PA even asked K what color of wrap he wanted, then laughed and said, "We even have a blue very close to 'Sarum Blue'. You are Anglican, are you not?" (I almost fainted.) The physicians, especially K's surgeon, the nursing staff, and the anesthesiologist all apologised over and over that they could not come to K's ordination as it was in the middle of the morning and, of course, they'd had no notice until the day before. The staff sent flowers, champagne, and food to the cathedral. They asked K to come by to see them in his new priest collar; his MD gave him a beautiful crucifix. They asked for prayer many times or asked to pray; the MD and the circulating nurse said prayers before K's surgery as he was drugged and drooling! They came to pray with me. I am told there was prayer after the surgery. Most folks were very surprised to find an Episcopalian praying the Rosary. We had years of discussion about our churches. Panama is NOT a law-suit happy country and I understood more about that later with follow-up appointments and visits to other doctors and when I accompanied others to various hospitals throughout the country. Physicians work 6 days a week and NOT for greed. They drive regular person cars (at least in the US we'd call them regular person cars like Hondas or Nissans); they live in what we would call "middle class" homes like regular, real, normal people. In our three year experience with several physicians in two towns, we NEVER waited longer than 15 minutes (and that only once except for for one time when we waited an hour and a a half, but more about that later) for an appointment and Panama is one of those places unconcerned with time. My physician apologised over and over that I'd had to wait 15 minutes; she'd just come from a complicated surgery. Usually we waited only a few minutes. We were usually early and we tried to get the first appointment after lunch or in the AM; it was not unusual for your MD to see you in the waiting room, come over, say hello, and invite you into the office for an early visit and/or a cup of coffee. No one hurries you; your physician visits with you; you get to know about her or his life and s/he wants to know about yours. My husband's hand is now perfect; he even has a knuckle and no one, even the surgeon, expected that as a given; there was a chance, though. No one was more delighted with the results than the surgeon; it as as if he had been given the gift of a "normal" looking hand himself. He muttered a quick prayer, crossed himself, and got out of his chair to come kneel at my side as I was sobbing by then. I'm a big cry-er with the charism of tears and someone was always at my level and just waiting with me, whether a doctor, nurse, housekeeping, lab person. As soon as K was stable, within a few days, we moved to our permanent home, 12 hours away by car. Physicians, dentists, etc in Panama give you their home numbers and their cell numbers in case you need to call. Most have those printed on their business cards. And they call YOU as we found out when all was going well and we didn't want to bother Roque, the doctor. It was not an unusual thing to open email & find an email from Roque, not based on some computer program reminding the doc to email on birthdays or anniversaries, but just "because I was thinking about you all and wondering how you were." We are cat people; Roque and his wife have a dog (no children); we often received pictures of Ron and family. We've met his wife and parents. I emailed him to ask for a gyn referral, asking for a woman; he CALLED me back saying he'd made an appointment HIMSELF for me with his cousin. During a follow-up visit, K needed to see a dermatologist; Roque picked up the phone himself and made the appointment. The MOST shocking event was during an appointment K had made, asking for a referral about a possible circulatory problem with his leg. Roque picked up the phone, called a colleague who said he would see K THAT VERY DAY if he liked, but he begged our forgiveness, stating he'd need to see K at the end of his day, told us we were welcome to leave the clinic and go shopping and that he'd call us fifteen minutes before. He recommended places in the area for lunch or coffee and a bookstore. I mean I've waited longer for an actual appointment made months before with a US doc than we waited to see the cardiovascular surgeon that day, who told K, "do NOT, as your leg is now, let ANYONE in this country or any other country, tell you that you need surgery on that leg. And he prescribed a med unknown in the US that actually "tones" veins. He never even charged us for the visit and we had insurance!!! Only later, when retelling this story, did we learn this was one of Panama's most famous cardiovascular surgeons! We learned about his family; he asked about ours. We visited as much as K was examined and treated. AND, GET THIS, MOST Panama docs are US-trained. K's orthopedic surgeon is from Johns Hopkins. I once asked, "then how is it that you and most Panama docs, in my experience, don't have the "MDeity Syndrome" and aren't a-holes!?" He gave me a very good answer that has to do with quality of life that has nothing to do with money and greed. K's dentist, a woman with children, works 6 days a week--from 8 to 2, she works in the local, social security, "poor" hospital; then she comes to her clinic from 3 to 9 or 10. It was not unusual to find her daughter sitting on the floor doing her homework. Her husband and other family members would come by to see her; you got introduced; you learned a new word in Spanish. Over and over I was told, "we are blessed to have the gift of education & training. We WANT to work and to help our fellow Panamanians. We are blessed to have a job." K, in grinding his teeth over the diocesan madness had broken three teeth and a crown; his dentist was out of town; K chose to wait until her return in two weeks. She saw him 3 to 4 times a week over the course of the next two weeks, sometimes at the hospital and sometimes at the clinic. Once she saw him both places. She charged him NOTHING because "I was gone when you needed me & you chose to wait until I returned." Again, we had insurance! With various poor parishioners and/or very very poor First Peoples, I had the opportunity to visit hospitals and clinics in far-flung, desperately poor areas. There was more waiting because the system is not by appointment & sometimes docs are called to the ER or OR or for a consult. While the out lying poorer and sometimes very poor areas had not "the stuff" with which to treat adequately, there was always the same respect for others, the same kind of sharing of information. Many doctors funded the costs of transportation, consultation, and care for their poorer patients if they needed to be seen by a particular person. It is not unusual for office staff or nurse or doctor to pay for transportation (bus). We are back in the US now and because of diocesan madness, I realise I will probably never grow nostalgic for Panama....except for medical care. My ID says, "in case of an emergency, call a priest before you call a doctor. If at all possible & I am stable enough, do NOT admit me to a US hospital; put me on a plane to Panama in case or Dr Roque ____ & his phone numbers are included. We all cried when it was time to say goodbye. Other than care by nurse-midwives in this country, I have never been treated so respectfully as a human being. I have also never been so well cared for by medical professionals. Our first encounter back in the US made me want to vomit, scream, and curse. How we treat people here is NOT necessary. We have much to learn from the Panamas of the world.

[color=rgb(46, 139, 87)]"...the idea of talking about death is, if not taboo, not integral into the culture? how does it not come across as cultural imperialism?..." exactly!! i absolutely agree! and that's been my big struggle and huge question since this conversation began with a couple of local hospice people several weeks ago. thank you sooo much for your honest and direct answer. bleu

:dancgrp:In this moment of homelessness and unemployment, my husband and I are living with our children in Mississippi, home of the Choctaw Nation. (Just before my mother's death in 05, I learned from a cousin who'd been doing years of research, that my maternal DNA was almost purely Sioux. Tragically my mother's Alzheimer's did not allow her to process this information. In addition to a father who raised me that "Irish aren't white," I now know that I non longer check "white" or "Caucasian" or "Anglo" in any boxes. Because of a long Southern Gothic story and her attempts to "pass," I grew up very connected to my Irish DNA, which made my father an advocate of justice for ALL, and in MS, that was both African-Americans and aboriginal or First Peoples. (The only non-aboriginal maternal DNA was African-American.) Having returned to MS and to hospice volunteer work (I'm an ordained priest but there are no hospice chaplain jobs available), I am in the process of trying to get my RN license back....lots of CEU's as it's been eons since I've worked as a nurse and hospice is the only work in which I am interested (as well as the only nursing I can do really well.) I see and hear of ALL the changes in hospice and hospice regs since I last worked hospice (1994). Sooo I am wondering: if a "reservation" of First Peoples has its own laws, etc., does this mean that a hospice on a reservation would be subject to ALL US hospice regs? Does this mean that a community of First Peoples could open a hospice that REALLY gets to practice hospice? I realise my post sounds as if I've made a huge leap that, say, a community WOULD actually WANT to open a hospice that would be open to people of all cultures and DNA! But what IF? What IF a community of First Peoples were open to and received hospice training and the hospice, in-home or/and hospice house, and if, of course, the hospice was administered fully by the First Peoples, would that mean that there would be a DIFFERENCE in the way hospice is lived-out? Am I making any sense? My dream of such a hospice would include First Peoples' cultural healing practices and all other mores would be honored, respected, and lived out freely and with PRIDE. And IF such a community was interested in opening a hospice wing or facility or office that ministered to ALL in the geographic area, would that be possible? Wouldn't it be awesome to have a hospice with all kinds of healing? The best of Western palliative care, the shamans or healers of that particular Tribe, acupuncture, homeopathy, compounding, herbs, massage, reflexology, etc.....would that not be amazing? Would multi-cultural grants be available? If anyone has any experience or knowledge with hospice with First Peoples, please let me hear from you. MS has a grandly revitalised Choctaw Community, revitalised by industry and casinos. The BEST news I've heard about MS in years is that the most sacred Choctaw site, formerly "owned" by National Park Service and along the Natchez Trace, has now been returned to the Choctaw. If MS can begin to heal and amend its terrorism and racism against its First Peoples, can MS then begin the process to heal and amend its terrorism and racism against African-Americans? Pace e Bene bleu

thank you very much for qualifying your policy. i'm trying to convince our administrator to do this as part of REAL hospice work again, thank you bleu

I assume that you are working for a not-for-profit hospice? And, without breaking the confidentiality of your hospice, can you speak to your regulations and policies that address caring for people "on the streets," "under the bridges, etc?" Thank you again bleu

BTW, I am glad to see some apologies on this thread. Seems Christianity is one of the few things left that is unacceptable to claim... As a Christian whose faith is the undergirding of years of social justice work and activism--and as one who lived outside the US in a country so "new" to itself because only in the last few years has this country been out from the HUGE influence of Colonialism and Imperialism--the US being the last of the Imperialism, I've seen, up close and personal, a really ugly side of the US--AND a very ugly side of the Christianity of US Imperialism--even though both my husband and I were there as Xan missioners. Yes, well, there IS a piece of the truth (as Gandhi said) about Xanity being "unacceptable" in the light of the atrocities of Western Xianity particularly in light of the past nearly 8 years of a very violent theocracy. In the US, it seems that we've taken it for granted that "we" were/are Christian and in parts of the US, a one way of being Xan. When I think of the present conflict within Anglicanism (for example), I think that so much of what is being called "traditional" Xanity (by the Bible etc etc etc) was literally forced on peoples all over the world by Xan missionaries. I won't go on and on about eons of bad, wrong, misinterpreted, horribly translated via culture and power that is, at least for me, THE primary reason Xianity is considered so "unacceptable." In my lifetime, "bad" Xianity has been used to defend racism, sexism, heterosexism, murder, torture, death penalty, economic injustice...from the Civil Rights years to the Black Muslim movement to Vietnam to chemical mega agriculture, the oil industry, to immigration rights to the atrocities of US intervention in Latin America, to GLBTQKQ rights, to 9-11 and the aftermath of war, and on and on... that's a whole lot of baggage and intolerance all under the name of a masculine Christian G/god. I think it really shows a sensitivity and awareness for those of who are ARE Xan to be respectful of other cultures and other faith traditions. And to that hospice using the language of different faith traditions in the world today as a way to connect to families, patients/clients, and the rest of the world, I give you great HURRAHS!! And for all of us Xan to make ourselves aware of other faith tradition ways and days of celebration and sacred days--says that we really DO honor a Holy One who loves All. I don't know about any of the rest of you, but Christianity is my "way" into paganism and Earth/environmental activism. Please, to the hospice chaplains comfortable enough to "do" memorial services and life celebrations of other faith traditions, I send a great big THANK YOU! bleu

in what state are you located? i just want to give you a big THANK YOU!! bleu

I am so grateful for the courage of you and your hospice. Thank you. I'm going to try to convince this local hospice to even BEGIN to comprehend such a ministry--too much fear. I'll volunteer for this work as I worked with homeless people for a long time. I believe you are doing some REALLY REAL hospice. May the blessings of the Holy One of Many Names and Many Ways bless you. bleu

Are you using a compounding pharmacist? When I did hospice, a genius, famous, gifted, creative compounder was "creating" stuff that does not exist for ALL of our hospice clients. We nebulised MS; we used shark cartilage suppositories; we used marinol po and topically in PLO, a gel that allows the skin to work as a vehicle almost as quickly as iv/SL. we RARELY used IV's and then we used subcu for IV pain control and, as I said, IV's were rare. We used liquid fast acting and flavored to the pt's choice, long-acting MS suppositories or po, and topical MS. We used HABR or ABHR for nausea; I know this was compounded in po and suppositories; and we used TOPICAL ABHR (Ativan 1mgm/Benadryl 50 mg/Haldol 1mg/Reglan10mg topically; and of course, as I said we nebulised MS. Then there was "Marty's Rectal Rocket" a 3 day specialised and individualised suppository for hemorrhoids; I've never known ANYONE who actually needed more than 2 nights to "cure" hemorrhoids. Saved many people discomfort and even hemorrhoid surgery. The "rectal rocket" was used by as many hospice folks as non-hospice folks. There were a few PIC lines for specialised clients but, again, that was rare as it is expensive, rarely necessary, and then everyone focuses on "the machine" vs the person in the bed... and for subcu MS, Dilaudid, MS with compazine using a PCA-CADD 5400. We all loathed fentanyl because it's metabolising to anti-psychotic compound AND because it's so difficult to monitor and treat increased pain, takes a long time to work and because one of our PCG's tossed the patch in the garbage can and a CHILD got a hold of the patch and, thank the Goddess, someone noticed and we all lived to tell about it!! Compazine gel, Haldol gel for agitation, Ativan SL or topical if compounded--used Ativan concentrate (can't remember if this could be flavored or not); Dilantiin gel for decubiti; modified Dakins' solution for decubiti; for "smelly" wounds, modified Dakins' solution too. Our compounder made our Scopalamine in gel form--then, there were many times the patches were not available. The list goes on and on but this is all I remember, I am sorry to say. The PLO gel could be used, oftentimes for many many meds. Now compounders are using PLO as well as "hydrogels"--I don't know if they work any better than PLO. My husband created PLO, gets no money for its creation and WANTED no money for its creation, he just wanted people to use it. The hydrogels came after he went to seminary (98) and the only compounding he did then was HRT's and meds for non-humans, so I'd have to ask the good compounders who do hospice work what they are doing and why. For KS--gancyclovir. I've not seen people with KS in a long time so I don't know if this is still an HIV reality or not. If KS is still out there, then there very likely may be newer and better meds compounded creatively. For fatigue, we used amphetamines orally. I don't know if they can be compounded in any creative way. Marinol and periaction--topically, orally, tabs, or liquid for nausea and poor appetite. We used a bit of Megace now and then for folks for whom it worked. Of course we turned our heads when clients were using the REAL marinol as it DOES work better. NOW in states with legalised MMJ, that's not the issue it once was, thank the Holy One of Many Names! We used alternative meds and treatments, too, like acupressure, acupuncture, magnets. Some folks, depending upon culture, used the assistance of their cultural healer from Santeria to shamans to whatever their traditional/cultural healers used--including US aboriginal peoples' medicine bags etc and all sorts of stuff we were never allowed to attend. Too bad I didn't know then I was half Sioux!!! In those days there was Prozac as the "new" antidepressant and we used it in PLO; for nerve pain we used elavil, neurontin, gabapenten, etc--try-cyclics po and topicallly or oral solution (but it numbs the mouth). Back then we saw so much terminal diarrhea we were making rice water. For fungal infections, Sporonax--po mostly; could be put in KY gel, PLO intranasally too. I'm sorry to say that our HIV-AIDS work since then has been as spiritual directors and chaplains. But if you go online and check PCCA and IACP...you can google them. If you'll let me know where you are and you can use a compounder, I can ask mi esposo if he knows someone good in that area. I'm not advertising here; I'm only offering a suggestion that may make a difference in the quality of life of your patients/clients. I simply CANNOT comprehend hospice without a GOOD compounder. I would say compounders in general are good but there are just some who are extraordinary and those folks WILL mail you meds overnight which oftentimes is too long OR the good folks can call/email/fax the really creative ones who specialise in hospice folk--if they will.

Are you following your HIV/AIDS folks literally "on the streets" or are they hospitalised in a hospital with "hospice beds" or placed into a hospice house or a nursing home with hospice beds or what? Thanks so much blue

ooh, i really do NOT like Fentanyl. and i get a little nuts when doctors start prescribing three kinds of pain meds. i'm used to good ole MS in some long-acting form with a fast-acting (and flavored by our compounders) for break-through pain. why methadone? all the hospice stuff i've ever read says that MS (or Dilaudid) is far superior to heroin or methodone. of course if there's bone pain, one uses something like an NSAID and we usually use topical NSAID. and then just treat any other sx like terminal secretions or anxiety.... i canNOT imagine hospice without the genius of compounders the vicar of blue

As I said in one post, we've been living out of the US for over 3 years. I sort of became the "unofficial" hospice nurse and chaplain for a great many people of many ages, genders, and cultures. I saw soo many women and children dying with HIV-related illness; it broke my heart. Not to mention living in an "honor and shame" society that ostrasises AND denies GLBTQKQ folk. There was soo much other stuff involved like there being only one clinic with AIDS meds and the deliveries were intermittent. Many folks with AIDS and HIV chose NOT to take meds b/c they were not consistently available nor were there ever enough meds. It was beyond "the First Wave" in the US all those many years ago. I mean I'm not concerned about neighborhood, area of town, etc. My dream priest job is in the S Bronx where one can rarely even get a taxi to get there. Any information is appreciated. the vicar of blue Just wondering what is going on with HIV-AIDS in terms of hospice care today.

I'm in a state with a bazillion hospices, all fighting over the same patients, doctors, discharge planners, etc. It's a mess. Someone told me there is a "Traveling Hospice Nurse Program" and it's based out of Vermont or maybe New Hampshire. I have LOTS of issues, questions, and concerns about this kind of business: I figure it could be grand or a nightmare. If anyone has any info or input, I'd really appreciate it. Oh, yes, and if any of your hospices are looking for a chaplain, please let me know, if that is possible to do on this forum. Thanks so much for all the great work you do. I had hospice care with BOTH my parents (one was great, the other was really home health nurses who hadn't much of a clue) but I now know that I can say, without a doubt, that all those things I said about hospice to pts/cts and their families were all true! Holy work, this. Peace vicar of blue

yes, about the cross thing. as a chaplain for The Neptune Society (the greatest job i ever had!) i wore no collar and certainly no cross UNLESS it was a cross whose "arms" were equal and had a circle around it, a symbol in many cultures. since i am a Xan and needed a 'tangible' to ground me, i looked for other symbols. since it was Neptune and I was helping families create "liturgies"/goodbyes on a yacht, I wore LOTS of dolphins (early Christ symbol). i also have a collection of scallop shells in many forms and made out of many mediums--like a scallop shell, the symbol for pilgrimage/journey, also the symbol of st james, and the shell often used for baptism.... there are LOTS of Xan symbols that do not "offend".... we just need to be creative. it's important that our own needs be met, too, but not at the expense of offending a ct/pt, caregiver, staff of facility. i kept a pin of the Virgin de Guadalupe/"La Morenita" pinned to my bra or I had a rosary pinned to an inside pocket.... the ONLY cross i ever wore was a "Brigid's Cross" since I'm half Irish and if i knew the family was irish, regardless of faith practice.... circles work, spirals work...a google search reveals many ways to ground ourselves in our own "way" while not screaming "I"M A CHRISTIAN" to those with whom i worked... i created a booklet of prayers and poems from many cultures; i changed any specific Xan godstuff to (usually) one of the 99 names of God that comes from Islam...i used a LOT of Rumi, too.... and Mary Oliver and LOTS of Celtic stuff, pagan and Xan, with the Xan specifics changed and included in brackets the Xan words in case the family requested something "Xan." i am currently working on a similar booklet for ALL our hospice employees... it really helps to keep info about faiths other than your own, particularly as that faith tradition relates to death and dying....