coping question for caretakers in the community - 1252592

wadvocator
Posts:79

As a caretaker, I have been reading contents in the discussion forum and educational materials steadily on GRACE for the last year. The educational materials are great and discussion forum informative. However, I am finding my anxiety steadily builds up as I read patients losing their courageous fights. I am almost to the point of not wanting to read the discussion forum and yet I don't want to lose insights embedded in the discussion forum. As the caretaker, am I the only one having this feeling/dilemma? How do you as a caretaker handle the situation?

Forums

laya d.
Posts: 714

Hi There. . .

I had the same problem for a while. But, what I kept reminding myself is that every patient is unique, no two cancer-journies are the same, and just because something bad happened to someone else, didn't mean that the same bad thing was going to happen to us. It's been very very very difficult lately - - particularly since we have had what feels like bad news after bad news and lots of losses (including my Mom) lately.

Another thing to remember is that people are more apt to come to GRACE and report and/or ask about acute "bad" things that are going on. People who have been cured and/or who are doing fairly well for long stretches tend to want to back-burner cancer from their lives and don't come here as often. So, you don't hear good news as often for this reason. This is something else you should keep in mind. . .

It's super hard -- I know...

Laya

certain spring
Posts: 762

I agree with Laya (hoping I may speak on a topic intended for people who do the caring!) that the good periods are much less likely to feature on GRACE than the bad ones. But you do get rare glimpses of wonderful normal life - in the garden, with the grandchildren, going out hiking or sailing ... I say little about my regular life, but I certainly have one! From the patient's point of view, to celebrate one's well-being when others are suffering might seem like gloating or smugness (though as I write I think, what a ridiculous idea - I would always be delighted to hear that someone else was doing well).

catdander
Posts:

I'm very glad you're asking these questions. We all go through a tremendous amount of stress and want and need to know how to help our loved ones. But we're all different and have different needs, different ways in which we handle stress, and an array of checks and balances of what we can do to move through our situations. So I hope we can share with one another.

I think a lot of what goes into being my husband's caretaker and a forum moderator comes pretty naturally. For getting through the days without all the weepiness I started taking an antidepressant over a year ago. It started working almost immediately and stops working with one missed dose.
For the past year, my husband's cancer has been well controlled and indolent so my anxiety level for his cancer isn't in full bloom. That helps.

dbrock
Posts: 161

Operations Director, GRACE

 

Hi wadvocator - don't ever feel like you are the only one feeling that anxiety. Caretakers and patients both are on the rollercoasters that come with this damn cancer. And I think that Catdander is far from alone in relying on a bit of help - there is nothing wrong with helping yourself in the form of an antidepressant. I thought many times I should have been on one -- sometimes think I still should. I had some anxiety attacks during Melissa's down times.... I had to pull off of the road a couple times and wonder if I was having a heart attack. I rear ended someone on my way up to the hospital also. Now I realize looking back how preoccupied and messed up I was.

I am with Laya - realize that each patient is unique. One's journey does not fully mirror another persons. And when things are good - people don't share as much, unfortunately. They need a break, as Laya pointed out. When things aren't as good they come for help and share their stories more.

Hang in there.
Denise

Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009.  Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education. 

marisa93
Posts: 215

I agree with what the others have said. Each situation is its own unique roller coaster ride and GRACE is here for support during every different part of that ride. Everyone tends to share more about the scary parts though as that is when the most support is needed. You are most definitely not the only one to feel the way you do! Take care and sending best wishes,
Lisa