Do I still have venting privileges?  You all have been so kind, and I don't
want to abuse this.  I really need the support of my buds though, and "youse
guys" are my buds.  To tell you the truth, I'm really flipping out over here.

I appreciate that informing a patient that he is dying has got to be one of
the most difficult duties that can befall a doctor; I haven't lost my
perspective, in fact, I can empathize.

It was hard for me to confirm to my Mother that she was mortally ill with a
very short life expectancy.  She honestly didn't know. Being a Christian
Scientist for 40 + years, she is not familiar with medical matters and
associated terminology. Metastasis with lymph node involvement meant nothing
to her.  She asked my impression yesterday at the hospital, and I was
straight up.  I could hardly pull the punch after hospice walked in the door,
and she had a right to the truth because that's what she wanted.

In this case, the doctor's reluctance to be forthright with me when I asked
weeks ago has caused more than a few problems.  I could have arranged for
Hospice care some time ago, and Mom could have made an informed decision
about chemotherapy.  She officially stopped that yesterday, but could have
been spared long before.  She doesn't have to be throwing up everything she
tries to eat.  They did know the prognosis but neither of us was ever
informed.  Moreover, the only thing she can keep down, Ensure light vanilla,
has not been made available to her in the hospital and no one has expressed
interest in providing it.

I have been providing her nourishment, because the hospital staff has failed
to do so!

I didn't even mind being the person who talked about dying with her.  The
Social Worker didn't do that, she just walked in and dumped on Mom about
hospice and freaked her out -- totally.  If I had been briefed though, and if
they had properly shared this unfortunate news with her, things could have
gone much more smoothly.

I am here to tell you that this is one "hellova note!"

Now I feel as thought the medical team and hospice is in opposition, and I
have to stay alert and have my game plan together just to ensure Mom's proper
care.  I needed this weekend to rest pending her arrival home, but they
badgered me Friday night about discharging her yesterday morning.  Hospice
backed them up even though Mom was clearly not ready to be out of the
hospital.  She was practically in a stupor because of the meds and didn't
even know what day it was yesterday.

The hospice nurse left me a boatload of messages on voice mail Friday night
about this.  The social worker left a message too.  They really were trying
to bully me; I saved the phone messages to hear them again when I am a few
days away from this occurrence.  I thought I had resolved this Friday night
and called Mom to reassure her that she would not be discharged yesterday
morning.  Hospice told me they were going to provide a contract bed in the
hospital for Mom until Monday morning.

The next thing I knew, early Saturday morning, Mom called me crying and said
a nurse had just come in telling her that she was going to be discharged in
an hour and to get ready to go.  I was in a dead sleep when she called, so
mentally I went from 0 to 60 in about half a second.  We weren't even going
to have the proper medical equipment here for her by then.  Hospice knew that
because they arranged for its arrival!

Well, Mom is resting comfortably (I hope) in the hospital right now.  She was
not discharged, but what I had to go through to keep her in there really took
me down physically and emotionally.  They have never listened to me when I've
said I can't do many caregiving things because of my own disability.  They
have continually blown me off, and have continually treated us both with
blatant condescension!

This is their damned profession!  Why don't they have a better strategy for
these eventualities?

I'm glad as hell that they are not firefighters.  I remember how I behaved in
medical emergencies when I was a firefigher/EMT, and if you don't mind my
saying so, some of those people wouldn't make a pimple on my butt (as we said
in the firehouse).  Not everyone connected with Mom's care has behaved
incompetently, but there have been too damned many for my comfort level.

I'm sorry but I'm damned mad tonight.  Damned mad.  My apologies to anyone on
the list who is in the medical profession.  This is not a blanket statement
about the medical profession.  Almost everyone on my own "medical team" is
top drawer.

I just wasn't expecting this incredible lack of coordination on my Mom's
medical team.














In a message dated 06/04/2000 3:19:45 AM Eastern Daylight Time,
[log in to unmask] writes:

> I saw a TV news program that said that many doctors do not tell their
>  patients how long they will live.  They don't want to say something that's
>  not correct.
>
>  Seems to me that joy's grandma and betty's Mom have the right to refuse
>  treatment.
>
>  Mag sends hugs to both of you.
>