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)
>
