^^^^^^WARM GREETINGS FROM^^^^^^^^^^^^^^^^^
Ivan Suzman 48/12/9.5 [log in to unmask]
Portland, Maine Land of lighthouses 37 deg. F
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Terrible news today:
My neighbor Rita changed her mind about being able to work with me -so
I am again struggling against exhaustion and still alone at night . I
got a telephone call from her this morning cancelling out her job here,
which would have started tonight. She says she cares for 2
grandchildren and can't take on more responsibility than she can handle
at this point.
Meanwhile, I have just slight hope with Jay. He has been my courageous
live-in caregiver, but left suddenly in October, and moved back to New
Jersey. He said he felt trapped by PD, even though he cares. He called 3
times on Saturday, and does want to visit me, but doesn't know when.
He is only 38 and needs more space from the PD monster. I am so tired
myself that I just don't know how to talk to him about his feelings. I
can't share how unimaginably grueling it is without his help. I am
worsening, but I don't want to drive him away completely. He says he
already feels guilty, but that PD is too much for him at this point.
He is working in a warehouse, packing orders. He loves being near to
his quite extensive family. I can understand why he is there, but it is
not solving my loss.
I talked to his 10-year old son, Nicky, who is in New Hampshire with
his sister, his mom, and his mom's family. on the phone tonight. I said,
"Hi, little buddy!" He said, "Hi, big buddy!" Nicky's older sister said
he was upset at his mom about something, so I asked him to remember that
he had only one mom in the whole wide world. Nicky's favorite subject is
science, so he then he talked with me for a while about what was going on
in school. He said he wished. someone would cure me of PD, and he wishes
I could visit him. He seemed lonely and I felt really bad.
I get the overall feeling that there is little I can do except hope
that something dramatic changes Jay's feelings But society seems to be
saying that he has paid his caregiver dues. The American culture seems
to be allowing people with PD to be left to flounder. I just don't
understand, I guess.
.
My family system isolates me. I wonder if their fear of PD is
blocking them, or if it's homophobia? The underlying message seems to be
GO TO A NURSING HOME and leave us alone so that we are not
responsible.....again, I am told not to "bother" them with "my" PD.
When potential caregivers see that my family is NOT helping, they get
scared off - and don't want to be over- burdened.
IVAN
So I am still struggling alone at night, Tuesday through Saturday, and
getting more and more worn out.
