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Ivan, You're doing great. You've more friends and family than you think == and we-ll find a solution, never fear. Just hang in there. Alles sal regkom! Vasbyt, ouman. Hilary Ivan M Suzman wrote: > > Hello people, > > I have finally been able, for the first time since last Tuesday, to get > some sleep in my bedroom instead of on the couch by the front door. First > deep sleep in 4 days. I had been absolutely unable to sleep for nearly > 36 hours. I had anxiety attacks and had been exhausted to the edge of > zombieness, once the 9-hour night shift became available, but was not > covered. > > There is some really good news. I have been sent help for two or > possibly three nights a week by a friend from Greenville, New Hampshire, > Debra Fogg, who has come through with a nighttime helper. > > She found a former neighbor's son, Dean Mitchell,a 19 year old bible > college student, for Sunday, Monday and maybe Tuesday NIGHTS. That still > leaves a 4 or 5 more nights to be covered. He is here now, watching me > send this message out. We are getting along very well. So at least > tomorrow night is covered. > > I also have the problem that if I need nighttime help (which I do), or > weekend help (which I do) or pre-dawn help (which I do), then I am > ineligible to use Medicaid-funded nursing agency home health aides to > fill in various coverage gaps not assigned yet to my self-directed > personal care attendants . The Meicaid rules allow me either to choose > personal care attendants for whatever hours I need, 7 days/week,or to let > an agency send aides, out during the business hours that they allow. > Portland's economy is booming, and wages are up, so I am in competition > with other industries which pay benefit packages and wages far > outstripping the personal care industry . So help is scarce, BOTH from > agencies, and among consumer-hired personal care attendants. It is a > competitive situtation, and my Social Security is too low to provide > funds to compete. > > I have Sundays still uncovered--i have a prospect, however. God, I > sure hope you hear me, because I need to have just a little luck here.... > > I have no biological family interested in coming to me to help, > although a cousin from Massachusetts has stopped in for one hour. It has > to be homophobia, and unfulfilled expectations about me. Wish they were > different. So the volunteer energy a heterosexual Ivan would get is > non-existent for the real me. Incredibe how just two weeks ago, I lit a > candle for Matthew Shepard, and now I am on the list of those who need > someone who cares to light a candle for them. Especially now that I am > unpartnered. > > My medical condition has dropped off, and I am extremely stressed by > up to 6 hours a day of telephone calls to deal with the advertizing and > search process. And my long-distance bill is in the stratoshpere. I have > been talking too long, just to be connected, and not alone, in the middle > of this crisis. > > One friend suggested I look deep within myself to calm myself. THat > seems to work-it's like a form of meditating, I guess. But things happen > all at once, and then, I get instantly tired out > > I also need help to know what the Medicaid Recovery Act is, exactly, > and what impact it has on me, potentially. After all i went through in > 1996, I am not going to let my house be taken by the State! > > My Dad, now a vigorous 80, remarried about 6 years after my mom died, > and his new wife OWNS A NURSING HOME. So how conveniently it works for > me to be told," go to a nursing home. " I just have to let all this go--I > can't do anything about it. No financial assistance to raise caregiver > wages to more competitive has come forth. > > I've been on the phone to the United Way- dead end .Sometimes for > three or four hours non-stop, searching for help is all my time allows > Talked to so many people-my voice getting slurry and soft, then > inaudible, throat drying up from side-effects and then I shut off and > fade out for a while. > > A solution has to be found quickly--I KNOW someone has to LIVE here > with me-and, decent MONEY has to be found to offer a part-time salary, in > addition to reduced or no rent, to prevent transitory stays of my "team" > of caregivers, so I escape endingup in a matter of days aground like an > old whaling ship. > > The phone rings incessantly during the day, so please KEEP TRYING to > reach me. I am funded for 13 hours of help out of 24. Many times I am > resting, or trying to do something else. > > Your support means a lot, and your ideas mean a HUGE amount. I do > wish someone would take the risk of talking to my family that is > abandoning me. Anyone willing to try would finthem hostile-maybe Ken > Becker could talk to my Dad in, of all places, Palm Beach Florida? My > brothers and their families are in Providence, RI and in Rehoboth, Mass. > I don't understand their (my brothers') > fears. The impact of being abandoned at this point is absolutely huge. > > I am in conversation with several people about all these things > happening to me at once. I am going to everything I possibly can to > survive this ordeal, but I really have NEVER been so vulnerable. > > IVAN..dozing off........thank you for your help....... > > ^^^^^^WARM GREETINGS FROM^^^^^^^^^^^^^^^^^ > Ivan Suzman 48/12/9.5 [log in to unmask] > Portland, Maine Land of lighthouses 33 deg. F > ******************************************************************** > > On Sun, 8 Nov 1998 20:36:56 -0500 Bent Willow <[log in to unmask]> > writes: > >>I'm even taking a chance and listing his phone number, with his > >permission, > >>but if he doesn't answer, please wait for the beep to leave a > >message. > >>Camille, Hilary, Dale,Bill, or anyone else, any ideas?????? > >>Gerry and Brig > > > > > >We're sorry to hear about Ivan's situation. I'm wondering if there is > >a > >home health care agency in his area that he can call for assistance. > >Providing care givers is the job of such agencies. > >------ > >Mary Ann (CG of Jamie 59/19) > >