Dear Cindy,
I just now saw your message and can completely identify with it. I am
my husband's primary caregiver and while it is a hard position to be in
sometimes, I wouldn't think of giving it up for the world. However, I
have to watch it sometimes. Joe was used to doing his own thing,
softball, having breakfast out with the guys, just hopping in his truck
to go get lottery tickets and such while I went to work and gardened and
stuff. When he got so seriously ill so quickly, I took over, found the
MD's, researched his illness, found this forum, did things for him to
take the pressure off him. It was cathartic for me and took so much time
that I didn't have to think about what was coming. We grew very close
and he depended on me for everything. I felt needed and took on the job
with a vengeance. When I realized this, I had to back up and look at
the whole picture. He had always made his own decisions and here I was
making them all and he was letting me. I was invested in my role as
caregiver, hoverer, chief cook, etc. It didn't take me long to see that
I was infantalizing him and being his mother. I needed to give him back
some autonomy and have him participate more in the decision-making.
Although I have some medical background and interest and he would have
rather I make all the decisions, he needed more control over his illness
and life. We try to be completely honest with each other and try to
speak while considering each others feelings. He hasn't asked to go to
the MD's alone but if he wanted to, I would have to respect that as his
wish to have some choice. Now that he is in hospice, I leave the room
after a few minutes so that the nurse, bereavement counselor or whomever
else comes in can talk turkey with him and he is more relaxed as a
result. If he wants to tell me what they discussed, OK. If not, OK.
We do share and I tell him pertinent things that come up on the forum,
he tells me some of the things that he speaks to the nurse about, but I
never ask what they talked about. It can be hard for a naturally nosey
person who usually has her finger in every pie, but I'm finding that
someone else is sharing what is a tough row to hoe and I welcome it.
Perhaps this is what your husband is trying to do, exercise some control
over a situation where the disease is boss. It may not be that he wants
to exclude you but to hear the news and choose how to tell you about
it. Perhaps also he wants to protect you, after all isn't that the way
it was before his illness? No matter what his reasoning, do you really
think that he wants to keep you out of it? Ask him. Accept his
answer. It's his disease after all is said and done even if it affects
the whole family, you especially. You asked us the questions that you
need to discuss with him. He has the answers, you have our support.
Hope I wasn't too blunt.
Sincerely,
Mary Lou
> From: Cindy Crowe <ccrowe@msn.com>
> To: Medical On Line Forum <mol-cancer@lists.meds.com>
> Date: Sunday, March 08, 1998 7:03 PM
> Subject: [MOL] Just venting
>
> >I've found myself extremely upset over something and, being the emotional
> >type person I am, I decided to through it out to my experts (and I feel
> that
> >you are my friends, also) to see if I am being unreasonable or if I have
> >just cause for having hurt feelings.
> >
> >As most of you know, my husband, Jim, has lung cancer. He has gone through
> >16 times of radiation and 3 sessions of chemo (3days in a row, 3 weeks
> >apart). I have been with him every step of the way, trying to be
> supportive
> >even on things I don't feel I should have to be.
> >
> >Jim had his first CT scan last Wed. to see what difference(s) there are in
> >his tumors between when he was first diagnosed and where we are now
> >(medically).
> >
> >I was all excited (and scared) to go with him to see his oncologist on
> >Monday to see what she had to say about any changes (good or bad) that
> might
> >be showing up on his scan and his constant lab work.
> >
> >All of a sudden, he has decided that he doesn't want me to go and I feel as
> >though he has just shut me out (yes, I am feeling sorry for myself). I
> have
> >seen him through everything he has had to endure since he was diagnosed.
> >
> >Has this happened to those of you that are caregivers and how did you feel?
> >Am I just being a blubbering idiot?
> >
> >Do those of you who have cancer feel ever not want your significant others
> >to share things like this with them and to keep your privacy between your
> >dr. and you private?
> >
> >I don't know if I am blowing this out of proportion and would like your
> >inputs. Please feel free to be blunt as that is what I am asking of you.
> >
> >
> >Cindy Crowe
------------------------------------------------------------------------
This is an automatically-generated notice. If you'd like to be removed
from the mailing list, please visit the Medicine-On-Line Discussion Forum
at <http://www.meds.com/con_faq.html>, or send an email message to:
majordomo@lists.meds.com
with the subject line blank and the body of the message containing the line:
unsubscribe mol-cancer your-email-address
where the phrase your-email-address is replaced with your actual email
address.
------------------------------------------------------------------------
