From: richard@ravel.udel.edu (Richard Gordon)
Newsgroups: alt.support.cancer
Subject: Re: Good Idea!
Date: 6 Apr 92 19:42:46 GMT
Organization: University of Delaware

In article <1992Apr3.215453.10316@uxa.ecn.bgu.edu> csjan@uxa.ecn.bgu.edu (Jan Faires) writes:
>Do any spouses/caretakers of cancer patients read this group?
>I would be interested in hearing how they are dealing with their  
>anger, grief, etc.  

Many years ago, I was engaged to a young lady who died of a
nasty leukemia that kept mutating back and forth between a
leukemia and a lymphoma--did not have a pigeonhole for it back
then (1979-1981).  

The anger passed surprisingly quickly because we (her family and
friends) kept trying to interact with her as close to normally
as we could.  I remember taking her on a trip to Massachusetts
(from Missouri) the summer of '80.  A lot of the people we
visited didn't even know--she wore a kerchief covering up her
cute bald head :).... Anyway, the point is that all of us worked
hard to keep up as much activity as her condition would allow.
She went to the mall the morning of her final hospitalization.

I dealt with the grief after she died by moving to a new house
(probably should have stayed put), playing a lot more music,
visiting with friends more, and, with hindsight, being confused
a lot of the time.  

It is still hard for me to type this note, 11 years later.  I'm leaving
out a lot--for example, the mixed emotions about "if she's going to die
let her die more quickly" [she was in a coma from complications the
last 3 weeks or so] and the ensuing guilt at those thoughts.
Also, a lot of mistakes and less-than-advisable decisions in the
year after her death.

One very positive thing I did with the grief is mentioned below (in
response to the next section of Jan's message).

>Has anyone (cancer patient or SO) found support groups to be
>helpful?

Yes, we did.  ALS was of some help to us at the time.  Some funding and
some support group meetings.  But we found friends and family made a
much more effective support.

Here's what I alluded to before:  Starting about 6 months after Gayle
died, I decided to try to channel my grief in a positive way and
started visiting the oncology patients on the peds ward at the Univ. of
Missouri Hospital, under the auspices of a group called The
Candlelighters, a support group for the families of children with
various cancers.  The Mid-Missouri Chapter of Candlelighters provided
an apartment (this was in the days before Ronald McDonald houses), some
funding for things not covered by insurance, and a network of families
for the families to talk with.

The social worker had another volunteer visitor, a retired nurse, that
visited as well.  So I'd take a guitar, or a mandolin, or balloons, or
bubble gum with me and spend about 7-14 hours a week on the ward.  The
kids appreciated having someone come to visit who'd just play games or
treat them relatively normally.  The social worker appreciated having
some visitors who could clue her in to any problems that might not be
apparent to her (people act differently if a white coat walks in--even
a non MD/LPN/RN white coat!).  I was able to relate well to the parents
and siblings of the patients.  The social worker also plugged me in to
the support group for the parents of children who had died while on the
service.  That was very useful for all of us.

I moved out of state nearly nine years ago and have not started doing
this again.  I have, however, some times taken our dog on therapy
visits to nursing homes....that's something my wife has gotten me
involved with (married in late '88) recently.

I've rambled on long enough, I suppose.  But one strange fact: my wife
and I had a son born on what would have been Gayle`s birthday in '89....
At the very least, makes me think about life going on and the
need for all of us, not just SO/spouse/family/caretakers of
terminal or very ill patients to treat each other with love,
charity, dignity, and respect.  

Peace.
Richard
-- 
Richard Gordon                             richard@brahms.udel.edu
CNS User Services, Smith Hall          or  gordon@udel.edu
University of Delaware                 or  acs02244@udelvm.bitnet
Newark, DE 19716 USA (302-831-1717)    or  richard.gordon@mvs.udel.edu