Subject: Caregivers Digest V1 #21 Subject: Feeling miserable Subject: saying the ``A word'' out loud Subject: weather, healthcare, silence, corks... Subject: Re: Update Subject: Re: Never rains but what it rains like hell Subject: Re: saying the ``A word'' out loud Subject: Re: saying the ``A word'' out loud Date: Mon, 10 Mar 1997 06:45:03 -0800 (PST) (533 lines of text) Date: Sun, 9 Mar 1997 13:49:21 -0500 Date: Sun, 9 Mar 1997 12:21:16 -0800 Date: Mon, 10 Mar 1997 03:46:14 GMT Date: Mon, 10 Mar 1997 03:46:30 GMT Date: Mon, 10 Mar 1997 03:46:38 GMT Date: Sun, 09 Mar 1997 21:27:39 -0800 Date: Mon, 10 Mar 1997 08:12:25 EST From: owner-caregivers-digest From: Jill From: tornheart From: katrin From: katrin From: katrin From: tonka From: sherrianderic Caregivers Digest Monday, March 10 1997 Volume 01 : Number 021 In this issue: Feeling miserable saying the ``A word'' out loud weather, healthcare, silence, corks... Re: Update Re: Never rains but what it rains like hell Re: saying the ``A word'' out loud Re: saying the ``A word'' out loud To unsubscribe, follow the instructions in your welcome message, or visit http://www.queernet.org and click the "Unsubscribe from 'caregivers-digest'" button. Write to the list manager at owner-caregivers-digest at sibyllineofbooks.com. ---------------------------------------------------------------------- Date: Sun, 9 Mar 1997 13:49:21 -0500 From: Jill Subject: Feeling miserable Hi everyone, The sun is shining, the garden is warm and all the plants are showing new green shoots - so why do I feel so miserable? There seems to be no reason. Today is not an anniversary of any kind. Nothing special has happened. But . . . I am just so lonely. I miss my husband, RT, so much. Tears keep falling - and I'm not used to that. As I worked in the garden a neighbour I hadn't met before stopped to chat. He had heard about RT's death and offered his condolences. Then he asked if he had died of cancer. I promised myself, when RT died, that I would never lie again about his illness - and so I took a deep breath and said, "No, he had AIDS." The neighbour, an aging hippy, was shocked and sympathetic but swiftly changed the subject and brought the conversation to a close. As the months go by life does seem to get easier to cope with and I do find myself smiling and laughing more and more. But when the loneliness hits it seems to hit harder than before. In this very rural area of North Cornwall I feel isolated - I stay here to keep my mother company. My work often takes me away to London and Bristol and then I can enjoy meeting and talking to my many colleagues. But they all have their own families and lives - the evenings are still so solitary. This list, and all of you, have become important to me. Your stories awaken so many memories. If only I had been able to talk to you while RT was alive. But now there seems to be nothing I can offer you all except loving friendship and some understanding of your pain. Sorry to be so down. Tomorrow will be better. Love to you all, Jill ------------------------------ Date: Sun, 9 Mar 1997 12:21:16 -0800 From: tornheart Subject: saying the ``A word'' out loud Read Jill's posting about feelng sad and about her telling her neighbor that the death was due to AIDS. Saying that word out loud is hard sometimes. But every time we do, we knock down another brick in the wall of discrimination and isolation with which the world wants to surround us and those for whom we are giving care. Incidentally, outside of this list and my family, I will not discuss how Bill got AIDS. And no, it is not that i am ashamed. His having had sex with men is his issue, and ironically , I am probably far more comfortable with that notion than my husband is. But when I refuse to say how he got infected, I also say that the reason I do so is to disallow the world to divide people with AIDS into ``innocent-victim'' and ``guilty-who-got-what-they-deserved'' categories. The other day at Davies, I was walking down the hall with the lover of the patient whose room is two doors down from Bill's. I said something about my husband's having done this or that--can't remember what--and he turned to me and said ``so what's wrong with your husband?'' I told him that of course Bill has AIDS because after all, this is the AIDS unit. ``He has AIDS! How'd he get AIDS?'' was the immediate reply. I can be pretty arch if ! want to. So I put my arm around his shoulder and kept walking as I said to him, ``Surely darling you understand how utterly politically incorrect that question is!'' He stopped and said ``but straight people don't get AIDS.'' That's not what he really meant of course. What he meant was that for a sraight guy to be open about having AIDS, he of course has to have acquired it tragically in some ``innocent'' fashion. So I told him that out of solidarity with all the people with AIDS, we were't going to discuss transmission modality. That it didn't make any difference. That AIDS is AIDS is AIDS. This reminds me of somethng i once read back when I was teaching wine-appreciation classes. (Yes, I have had a checkered career). Maynard Amarine, who is a distinguished profesor emeritus of vitaculture and enology at the University of California at Davis, said that America would never become a nation of wine-drinkers untl we had a wine called simply ``wine.'' Until wine was so much a part of our daily lives that we simply routinely put a bottle on the table at night. That while we reserved our specialized vocabularies and esthetic sensibilities for serious wine-tastings, we needed to ahve an ubiquitous bottle at the table. Well, in a way, until AIDS is like this for all Americans--just an unfortunate fact of could-be-anyone-s life--we will continue to have discrimination and isolation. I remember when my son Matthew had to have some very complex facial surgery in December 1989 to correct a genetic anomoly. It was a very bloody operation, as indeed most procedures involving the head can be, and Matthew also has the family von Willebrands, which means that his blood takes forever to clot, just like his momma's. He was bleeding all over the place. Dripped pools on the floor. Hawking and spewing great chunks of it up. the packing in his nose was leaking on the pillow. And nobody at the hospital bothered to glove up when caring for Matthew, who was 21 at the time. Not even to wipe the blood up off the floor or to remove the blood-soaked gauze packing from his nose. Finally I was getting so anxious about this that I went down to the office of the director of ursing services and complained. And was essentially blown off. So I sat down and wrote a letter to the chief of staff. Complained about the carelessness re: universal precautions. Said that just because Matthew did not appear to belong to any known`` risk group,'' they still could not afford to relax their precautions. That they could not make these decisions based on appearances. That until they treated every 85-year-old nun and every newborn baby and every teenaged girl patient with the same degree of caution they would use to handle a known AIDS patient, they were in danger of helping to spread both the epidemic, AND discrimination against people who appeard to be members of the ``risk grousp.''. But people are still, even now, blind to the possibiity that the virus comes to any but the most despised sub-groups in society. AIDS still ``can't happen here'' for too many people in this country. It's still only a San Francisco, West Hollywood, Christopher Street disease to many people, who cannot imagine how ubiquituous the virus is. Or that one of the fastest-growing AIDS transmission categories is women between the ages of 18 and 25. This is a real soapbox issue for me and I am sorry if I sound so preachy. but the more we can be out about AIDS, the less a sinister plague it becomes. And, as to our own lives, Bill continues. He has now lost his ability to tell time from looking at a clock. His incontnence is so severe that even with his having the condom catheter, seems as if the nurses are perpetually having to change him and his bedding. Oh three cheers for the nurses at Davies Medical Center!!! They are such decent, wonderful, patient, caring folk. All day every day they have to care for a dozen patient just like Bill. Demented to varying degrees. Incontinent to varying degrees. Afflicted with miserable opportunistic infections. And the nurses still treat these patients with such kindness and respect. It seems really miraculous that they can keep on giving and giving and giving. On my way to the hospital yesterday I stopped at the Celtic Music Festival in Sa Francisco. Bought several fake-o stained glass window stick-ons in Celtic designs from the Book of Kells and applied them to Bill's windows at the hospital. They really are cool, filling his room with all kinds of wonderful color. What a cheap and easy way to banish some of the institutional blahs! I also bought several highly political bumper stickers for which I probably indirectly made a donation to the infamous `widows and orphans'' fund. Stuck them up on Bill's bulletin board. Read them aloud to him several times. He has so many Irish nurses and he loves it when they come to his room and talk to him. I figured that maybe some of them will see the bumper stickers and hang around to discuss the Irish political situation with him. Maybe only a guy with dementia coulmake sense of the whole bloody sectarian mess anyway. And my tall handsome Irish-American husband has always had an acute interest in Irish politics. I am trying to begin to ``get a life'' beyond the hospital. It doesn't come easily. It's as if I have very little heart for what look like the friviolities in which everyone else can engage. Guess really and truly I cannot do that as long as Bill is still with us. Bill and I were talkng about how when (OK, gotta admit that he said ``if'') he dies, I will then be known as ``the widow Wilkinson.'' Told him that sounds like a lyrc from a rude Irish song about chowder and red flannel underwear. He has told me, and I think he is only half kidding, that he would like me to be got up in the serious widow's weeds lke Jackie Kennedy wore to walk behind JFK's coffin. Somehow I don't think this is what I am gonna do. Not in Berkeley. Not in 1997. One of thenurses finally gave me some sort of a number, which, in Willie Lazarus's case is of course always subject to change without notice. Anyway, she said she doubted that Bill would be with us more than another two months. They sent Bill up the wrong meal tray last night. He got what must have been intended for one of the little old ladies with no teeth in the nursing-home section in the hospital's other tower. Anyway, everything came pre-chewed, as it were. The leg of lamb with rosemary looked like Alpo. And the alleged Scandinavian vegetables were beyond describing. Fortunately, one of the nurses saw the mixup and brought him some ``real'' food. But more often than not, regardless of the menu, Bill will sit there with a fork in his hand, motionless for 15 minutes, forgetting that the idea is to get the food into his mouth. Well, gotta do some mucking out around here. I haven't eaten or cooked at home for so long that I am sure there is a cure of AIDS or cancer lurking somewehre in the receses of the refrigerator. Madge ------------------------------ Date: Mon, 10 Mar 1997 03:46:14 GMT From: katrin Subject: weather, healthcare, silence, corks... hello again and thanks to charles f., charles lee, ron m., roncat, cupkaykj, = paula, jodi, sharla, lydia and all the others - i know i am = forgetting some, sorry - for all the warm welcomes. they are = definitely appreciated. im going to start by apologizing for posting 3 long letters in the = same day. this will not be the case on a general basis i have this sense that everybody on this list knows each other really = well. i might be wrong but i feel that i need to give you a little = more background on me and koko. ron m. was also curious about = iceland so i will give a little briefing on what it is like to be an = hiv + / - lesbian couple in iceland. you can stop reading here if = you want. ron m, beleive me, you wouldnt want to be here right now to see where = reagan and gorbachev met nor to see the WEATHER! two huge cargo = ships have wrecked by the south shore in less than a week. there = never seems to pass a winter here without some major catastrophy that = can be blaimed at least in part on the weather. but the summertime = is beautiful, its like spring for four months. of course the = airticket-prices skyrocket accordingly. on to some more specific info... about 100 people have tested hiv positive in iceland since 1983. 30 = have died, the first one in 1985. (he grew up next door to us and = was my oldest brothers best friend.) i should mention that the = whole population of iceland counts ca. 280.000. in some ways iceland accomodates people with hiv and aids very well. = many of the northern european countries including iceland established = a disability for people with aids and hiv early on in the epidemic, = which means that 100% of their healthcare costs is covered by the = state. drugs get here faster than some of the other european = countries, but never as fast as the us. the downfall is that since = iceland only offers a fully socialized healthcare there is no = external quality control on the doctors work or the healthcare system = as a whole. there are aprox. four doctors in the whole country that = handle hiv + aids patients and doctors in iceland are generally = notorious for sticking together and covering each others tracks. = this means that if you are unhappy with one doctor, it will not be = easy to switch to another. generally they are all very sceptical on = alternative medicine, nutritonal therapies, etc. the idea of = treatment as a collaborative effort between patient and doctor is = fairly foreign to these guys, the patients wishes and opinions dont = seem to carry a lot of weight. as far as being a caregiver, friend or family of a person with hiv or = aids, the social service options are few and sometimes none. there = is one hiv counselor on staff at the hospitals (that is one person in = the whole country!) she provides services mainly for the positive = community, and i do not feel comfortable seeing her for therapy = because she is also kokos confidant. about once a year a = support-group for caregivers meets for 6 weeks or so and thats about = all. i would really like to attend to those meetings, but im in = between a rock and a hard place because it is very important for = koko that nobody finds out about her hiv because she is a public = figure and it would without a doubt affect the sales of her work if = people knew. anonymity is never an option here because of the size = of the population. if one person knows, everybody knows. to appropriate the act-up slogan, this silence often =B4feels=B4 like = death. koko says that i should do what i need to do and that she = will not try to control it, but it is clear that she does not want me = to seek help in a support group. ive not really been able to tell = my family about the facts of our relationship and ive only told two = of my friends in iceland which makes me avoid all my other friends. = i get so sick of this tyranny of kokos career... private therapists are not very attractive to me both because they = are very expensive and because none of them are =B4hiv-insiders=B4 = meaning having been personally impacted by hiv or aids or having = gained an expertise in this field by some other means . i had a = wonderful therapist in new york city when i lived there (i lived in = the states for 9 years - im hoping i havent moved away from there for = good). she is a lesbian and with an extensive working background = with lesbians with aids and their caregivers. all right, the saga will continue some other time... lydia, on uncorking the lid... im generally a pretty uncorked kind of = person, it is crucial for the quality of my life to keep a right = balance between moments and aspects of corkedness and uncorkedness. = i am a visual artist which is mostly about uncorkedness, but i try = not to uncork on koko. she has enough to deal with. like i = explained above, i would love to uncork with more people around the = issues of hiv and getting on to the mailing list is a step in that = direction. love to all kata ------------------------------ Date: Mon, 10 Mar 1997 03:46:30 GMT From: katrin Subject: Re: Update > > Ron's medication has been changed, evidentally the AZT was >leading to anemia and that has been changed to Zerit (stavudine) and he >is still on the Crixivan and Epivir (lamivudine). Does anyone else have >experieince with these medications? Reactions etc.? hi charles thank you for your warm welcome koko is on the same combination and has been since early october 96. she had been on azt for a year and a half prior to this. when her doctor prescribed her d4T(stavudine)+3TC(lamivudine)+Crixivan i went mad because i couldnt understand why he wouldnt give her azt+3TC+Crix since it is a much better researched combination and has proven very effective for people with prior azt experience. she had been diagnosed with leukopenia but it could not be directly linked to the azt. anyway, we argued with the doctor for a while but finally koko was convinced, even if i wasnt at first, that there was a good reason to go with the his prescription . basically , symptoms such as nausea, vomiting, fevers, sebhorreic dermatitis and nightsweats that were part of our daily life before this combo, have disappeared. within a month her VL fell from 19000 to 800. she had another round of bloodwork done recently, but we havent gotten back the results. we dont know what the long term effect of the combo will be, but sofar koko is happy with it, the only side effects she is experiencing are extremely chapped lips and some rash on her arms. these are things one can live with. they also seem to be getting better. some people experience bloating and gas from the crix, but we have been fortunate enough to bypass that problem. i have also heard that some of the most common side effects can diminish in time. d4T passes the blood-brain barrier which is important, even if it is not at the same concentrations as azt. from everything i have gathered, this combination is fairly widely used as an alternative to azt+3TC+Crix because it is less chemotoxic. make sure that ron drinks lots of water which will lessen the chance of kidney stones and can also counteract chapped lips and other forms of dehydration. crix is a 3 times a day alarm-clock-ritual in our house and no eating 2 hrs before and 1 hour after taking it. it is supposedly very important that humidity doesnt get to the capsules so if they are kepy outside their original container a desiccant (am i using the right word here?) should be kept with them. anyway, you have probably read the litterature that follows the pills so you know half of this already. but i wanted to make sure i didnt withold any valuable information i hope that this combo will work well for ron take care kata ------------------------------ Date: Mon, 10 Mar 1997 03:46:38 GMT From: katrin Subject: Re: Never rains but what it rains like hell dear victoria i have read your posts since i joined this list and have always been amazed by the candidness of your writing in the midst of your very difficult situation. when or if it becomes my turn to be in the same steps as you are now, i am so afraid that i would lack the strength and clarity and love needed. reading your letters i adore these qualities that you really seem to posess. pillar of strength is a description that rings so true for you. i am younger than you as a caregiver so im not going to even pretend i can offer you as much in my posts as you are offering me and others. but something similar happened to me in the month after koko told me she was positive. and yes, it was raining too and i was also on my everyday route that i know so well, when an old lady started crossing the highway at a strip where it is forbidden to cross because of the speed of the traffic. me and koko were in the car, both rather highstrung, so when this old lady entered the road we panicked. somehow i managed to stop the car, but i couldnt avoid bumping her and she fell. fortunately she wasnt really hurt, but i know that it was such a close call and i was in a shock until i found out she was ok. the things that were flying through my head in these first moments... i cant even put them to words. i think that for a second i felt that this was really to prove that i was really to blame for all of the worlds misfortunes. one cant help but wonder how it is possible for events to pair up in such a way. it is like the chance of the numbers 4 and 44 coming up in the same lottery draw. but thats life ..... like i didnt have enough to deal with? and like you dont? anyway, i just wanted to share this story . you are in my thoughts. take good care kata ------------------------------ Date: Sun, 09 Mar 1997 21:27:39 -0800 From: tonka Subject: Re: saying the ``A word'' out loud The other day I presented my paper to the other students in class. I didn't read it, but talked about it. I started out with a bit of background on me and Mac. I had decided that morning that I wasn't going to hold anything back and before I knew it, most of the class was crying. This is a group of 18-22 yr. olds, with a couple of 30 somethings thrown in. They were not expecting me to be as open about things as I was and the "A Word" was used often. I have read Madge's response before to people who ask how a person became infected, and I totally agree with it. I was fully prepared to say much the same thing if someone in this group had asked. But these kids were really touched and totally supportive. There was much discussion about the Lazarus Effect and how it is be to live in this new age of treatments. They were also very interested in the ethical dilemna of withholding treatment from people who will not or cannot take the drugs as prescribed. There was an interesting article in March 2 New York Times on this topic. I think what I most wanted to get across to them, besides how much I love Mac, is that life goes up and down, but the power of the human spirit is incredible. Jill, I am glad you have found this group. Although we are not close enough to pop over for "a cup a " we are here in cyberspace for you. Love, Paula ------------------------------ Date: Mon, 10 Mar 1997 08:12:25 EST From: sherrianderic Subject: Re: saying the ``A word'' out loud Madge wrote... >Saying that word out loud is hard sometimes. SNIP >but the more we can be out about AIDS, the less a sinister plague it >becomes. At the funeral on Friday the family, which is strewn around the US, gathered. It was hard for Eric but especially for Duncan. At the private viewing for immediate family, he really broke down. I know it was because he envisioned this scenario in his future. His mom drove in to be there to support the guys. (mom and dad have been divorced 20 years, I guess). On the drive to the cemetery, NAC (mom) drove with Eric and I. She turned to me saying, this is hard. I almost said the "A word" in front of BAC (Dad). I said, I know it is hard. Apparently they were in conversation about how Duncan was doing in his new life, working with us, relocating, getting a chance for a brand new life, and his new relationship with Anna. (BAC and his family does not know about the situation with Duncan and we don't know when and if Duncan will tell them. Eric hopes he will one day so that it is not up to him to tell them after Duncan is gone. It was hard enough for Eric to tell NAC, but it was necessary at the time.) You see, we still keep this information secret, between six. What was odd was she used the same terminology: "A word". It is like it is such a taboo subject. People who don't know "the secret" wonder why we do the things we do. "Like give Duncan a job. Pay for his doctor bills. etc....." Afterall, he is an able, healthy adult, right. My mom is really vocal about this. And all I can say is, "Well, this is Eric's brother." She doesn't understand. I am afraid that when we are able to be open about what this whole thing is all about, it will be very hard for her as well as the others who right now are "in the dark". But on the other hand NAC does tend to overcompensate, as do Eric and I. Afterall, Duncan has a "death sentence" right. None of us know the future and how long he will be here. The funeral reminded all of us of what we try not to think about. But talking with all of you, learning about this disease, I really think that the finality of this situation with Duncan is so far down the road it is not now in sight. Too many turns, hills and valleys to even see. This is good. He has been adjusting to the meds well. The stress of his grandmother taking it's toll, but he seems to be okay. Healthy, anyway. And it is frustrating because Duncan does tend to take advantage of our good intentions. Maybe if we could be open and honest about it with those close to us, these frustrations would not be so intense. I mean, some days I just have to bitch about Duncan. He makes me so mad. But I can't bitch to too many, because they don't know the whole story. But if I could use the "A word" in my venting, it might be easier. Don't mean to vent. This was just to be a comment on how I wish we could be more open about AIDS/HIV. But for now... As for me, ordered some new CD's for my computer to listen to as I work. Tax deadline is not too far off. Lots of work to do. Keeping you all in my thoughts. Welcome to the newcomers. Sherri ------------------------------ End of Caregivers Digest V1 #21 *******************************